Living Hope

Saying Goodbye

2011-04-22T20:43:00.000-04:00

Have you ever thought about all that the walls in your house have heard or experienced? That is what Rick and I thought about last night when we sat together after the kids were asleep. You see life has changed again for the Gilmartins. We got an offer on our house two weeks ago and a contract the next night. We will be moving to Staunton in May. We still have the details to work out with inspections and closing dates, but it looks like it is a go. As we sat in amazement at God's provision for our family, a mix of emotions went through out minds. We are mostly excited and so grateful. Our hearts are in Staunton as we minister there each week and look forward to really getting to know and serve that city. We have been praying boldly since our house went on the market about 70 days ago that God would bring a buyer to our house. Seeing that prayer answered so quickly is a reminder to us of the faithful God we serve that hears our prayers. So this move is exciting!
It is also somewhat sad. These walls have seen and heard so much with our family. This is the house we brought our baby boys home to. This is the house that we have grown our family of 6. And this is the house that we survived cancer in. It is funny, besides normal transitions, the cancer part is the hardest for me to say goodbye to. Don't get me wrong, I am glad to say goodbye to cancer, but it is the memory that every room holds here. The places Andrew got shots from our dear friend Margie. The couches we held him on when he wasn't feeling well. The cribs that Andrew slept in while he wasn't at the hospital. The kitchen that prepared his favorite meals to keep him eating. Rooms I saw dear friends scrubbing from top to bottom in order to "de-germ" the house for our boy coming home from chemo. Even little things like stickers I have packed that he received from friends to keep him busy while he waited on scans and surgeries. It is amazing how many memories this house could share regarding our cancer journey. As we entered the beautiful spring time with our trees blooming and flowers coming up, I am reminded of last year when we had just weathered the storm in the winter and how alive we felt. Our house has been a safe haven for us, as well as many family members and friends that came to help, during that time. So yes, there is a part of me that is ready to turn the page and be done with the "cancer house," however, there is another part of me that is grieving. We are saying goodbye to a huge chapter in our lives and taking a step of faith to believe that the next chapters, even if they are scary, will be perfectly written. There will not be a mistake in the story or something that we could have avoided. God knew what house we needed to be in to walk through cancer with Andrew and He knows where we need to be for the next chapters in our lives.
Becca made a chain tonight counting down the days until we move into our new house. We have 22. 22 more days of packing. 22 more days of "suburban" living. 22 more days to look around at the walls that weathered so much with us. And 22 more days to get excited about the next adventures we will have as a family of 6.

And so because there is not much happening with cancer here now (and hopefully forever), we will also say goodbye to this blog. This blog was started to keep everyone updated on Andrew's progress and what was happening in the hospital. It ended up being an amazing tool to help Rick and I process through so many deep thoughts and emotions as well as share our story with those who wanted to keep updated. But Lord willing, we will not have to go down that road again and so we will say goodbye to our friendly readers. Thanks so much for your love and support. We are forever grateful to you and especially to our great God and Healer.

Perks to Childhood Cancer?

2011-02-21T18:09:00.000-05:00

Well, dedicated followers, we are approaching our one year mark. One year since the nasty tumor was removed from Andrew's chest and we said good-bye to cancer. March 5th was the day of the big surgery and that day approaches quickly. It has been a year of celebration, rememberance, trial, and joy. We have sung "Happy Birthday" to all 6 of our family members. We have splashed in the pools over the summer and relaxed at Nags Head last July. We have travelled to Disney World in October and had a magical, unbelievable time for a week in Orlando. We were very thankful at Thanksgiving and joyful, yet somber at Christmas as we rejoiced in another holiday together, yet, remembered when this journey all began. Yes, this has been a year of many memories for our growing family. The girls still talk about the time with cancer, while Andrew cannot really remember the hospital stays, "tubies", surgeries, or scars. We are thankful for where we are now and continue to worship the God that writes every day of our lives. In March, Andrew will have another MRI to check on the safe, but lingering cancer cells in his body. This will mark his one year recovery and we will go to MRI's every six months rather than every three. Hooray!!
As we prepare to close out this blog (as we don't anticipate much more to write about regarding cancer), there are two little tidbits I wanted to share. I hope to bind this blog in book form to always have on my shelf to remember the journey of hope we were on in 2009-2010. Anyway, a little girl named Hayley Kudro, who suffered from an aggressive form of neuroblastoma, was interviewed by the national news. It seems that some amazing researchers have discovered what looks to be a cure for many types of neuroblastoma. I have attached the two links that you can watch on this amazing litle girl that lives in our town (and we knew from UVA) and what has been discovered in the way of cancer cures. It is a true miracle from God!!

http://www.cbsnews.com/video/watch/?id=6912919n&tag=mncol;lst;2

http://www.youtube.com/watch?v=MZYdiVIqO-o

The other fun tidbit is one of the perks that has come from this battle with childhood cancer. Besides the amazing, all inclusive Make A Wish trip that Andrew received in October, he also was surprised by another gift at his last appointment. Rick took him in for his monthly check up and the nurse asked Rick if we had ever received a blue and black totebag from a group called Jeffery's Gifts. He said no and the nurse returned with a duffel bag full of some things. It had a new book for the kids, the Jungle Book dvd, a Walmart gift card, a free Papa John's pizza coupon, and an envelope inside. The nurse told Rick that he could open the envelope in the clinic and decide what he wanted for his "big purchase item." Rick had no idea what to expect, but as he pulled out the piece of paper, listed below were things like a brand new Wii, an XBox 360, a camera, a camcorder, or a Best Buy gift card. I was in a meeting with someone when I got the call from Rick saying, " You will never believe this....." I didn't have time to chat about anything, so I said, "Have fun with the decision." Well, Rick filled out the paper and when Andrew goes in for his check up this Friday, he will coming home with a free X Box 360. Crazy! I guess that's one of the "perks" of childhood cancer.

Surrender

2011-01-01T15:33:00.000-05:00

Happy New Year to everyone reading! We hope this year brings many blessings and exciting things for your family and ours. As I pull down the old calendar from my wall and put up the 2011 one, I can't say I am that sad to say goodbye to 2010. Don't get me wrong, there were many fun things that happened and blessings that I experienced, but several of the "fun things" like Disney World, or personal growth, or even God's working in Rick's vocation came about because of some really hard things. Our biggest struggle, of course, was cancer. Andrew had his last MRI scan on December 28th and as far as we know everything looks good and nothing has changed with the size of the remaining cancer cells. Praise God. We breathe a sign of relief.
So where does that bring me in 2011? I find myself reflecting how I have changed and how our family has changed. I find myself thankful to not only have made it through 2010, but also to have thrived in many ways. Our family is closer and more sensitive to those that hurt around us. We laugh a little more and cry more often without hesitation. I have watched four precious children's hearts develop in ways that I couldn't have imagined and I do believe that the trials, the fears, and the last year's challenges have really aided in those ways. The Christmas story meant more to us this year. The kids loved to talk about how Jesus was born and He came to help those that were hurting and in need of rescue. They reanacted the story of Joseph and Mary together and sang the tradition Christmas songs at the top of their lungs. We celebrated Jesus' birth and already began to talk about how wonderful it was that Jesus came to us, but even more amazing that He died and rose again! We would still be in darkness if He hadn't come and especially if He hadn't risen again. And you know what, I think the three oldest got that amazing concept of Christianity a little bit more this year. I am thankful that we have grown and seen God more in our lives.

On the flip side, my flesh struggles a lot with fear. The word that keeps coming to my mind is surrender. I must surrender my life, my kids, my security, Rick's job, all relationships, and all control over to God. He is the one that is really in control and has all my days ordained. And you know, I am scared. I believe He is Sovereign, but I get scared that He isn't good. I get scared about what might be around the next corner. Will I be able to handle the next trial? Will something worse happen that will tear my family apart or seriously challenge my faith? Will we make it through? How can I prevent chaos? How can I control as many factors as I can to keep myself saife? Madi and Becca are going back to school on Monday and I will cry my eyes out when they leave. I have LOVED having them home for the entire two weeks (I didn't think I would love it this much) and I don't want to let them go out into the "world" again. I want to keep everyone close and protect them and never let anything bad happen. But I can't. I can't control my world or theirs. This concept is so scary. I am being challenged already on this first day of January with a pretty huge job...surrender. Allow the God of the universe to have it all. He already does, but He wants my heart to believe that too. He wants me to believe that He has the best in His heart and that He loves my family and I more than I do. He is not out for harm or mockery, but He is out to make us more like Him. He is not here to remind me that He is safe, but that He is good. So that is where I am right now. I will take one step at a time to place my life and the lives of my dear ones into His hands. And I will try to not take them back again in my heart. I know in my head that there is freedom in surrender, but the steps to get there are hard and very scary. May God be glorified in my baby steps and may whatever comes in 2011 remind me that He didn't "bring me out of Egypt "(or cancer) to kill me, but to allow me to trust and love Him more.

One year later

2010-12-29T09:30:00.003-05:00

The lot to write this post has fallen to me. I can't say that I am ultimately very excited about this endeavor; there is still a large part of me that wants to wander in the hinterland of denial. Yet it is appropriate that, one year later, I lead off just as I did then. Yesterday was diagnosis day, the one year anniversary of the nightmare that was and the troubling dream that is. Today I try and put to words some sense of what has been going on in us and I will probably fail.

I could begin this simply by speaking of where we were this time last year: the cold harshness of the fluorescent lighting and spartan hospital room, the fear of unknowing, the intimidating presence of something in my son's chest that I could not see yet constantly filled my mind. I could begin there but my heart is not in it.

I could begin instead with where we are now: Andrew's health and vitality, his complete ignorance of anything that happened last year, the girls's memories and questions of the hospital as soon as the Christmas tree went up, the unbidden memories that randomly return to us as parents with certain smells or songs. This would be as good as any place to start but I can't quite bring myself to do that either.

The reason for this is the ambivalence I feel today. This ambivalence is due to at least three voices that are warring in my head. The first is the voice of denial. Denial is loud and talks a lot. It is not a commanding presence but rather an annoying one. It fills the air with words to keep the silence away because with the silence comes reflection and with reflection comes truth and truth, as they say, can be inconvenient. To keep that away Denial is trying desperately to move me from thing to thing, from distraction to distraction to keep me away from something that might cause me pain.

The second is the voice of Rationality. Whereas Denial simply seeks to keep you distracted, Rationality seeks to make you believe something that, though possibly true, might not be the most helpful thing. It is commanding and convincing, speaking with authority laced with a tinge of shame to keep you in line. Today Rationality is trying to convince me that because Andrew hasn't had any treatments since March, that since our story has thus far ended well, that thus I should be unfazed by this anniversary. More, I should in fact simply be celebrating the reality that I have my son and my life has returned to some semblance of stability.

The third and final is the voice of the Heart. The Heart is the voice that is quiet but persistent. With enough busyness it can be drowned out and it isn't very good in a debate, but it doesn't give up. The Heart reminds you that you are human, that you actually feel things, that things aren't the way you know they are supposed to be. The Heart somehow navigates the brokenness of the world and still speaks with hope and expectation. Today this voice is reminding me of how bad this day was a year ago. Today this voice is trying to get me to live in that place where the walls fell in and all of life changed.

Ultimately Denial won out. It is now a week since I began this post. In the time between writing we've gone through Christmas eve and Christmas morning (both surreal experiences of remembrance) as well as a trip yesterday (Dec 28th) to UVA for Andrew's latest MRI. A year ago today (Dec 29th) Andrew was in surgery getting his biopsy.

My experience yesterday echoed that day. I hope I will never get used to the strangeness of holding my boy as he goes limp from anesthesia. A year ago he laid on my lap as the white liquid was slowly injected into him and within seconds he was out. I handed my life over to a doctor who took him back to an OR. When they left I remember holding Jess and crying. The tears came not just from what was coming but ever just the reality of having a lively little boy turn limp in my arms. The eeriness remains with me. Yesterday was the same. I held him until he was out, placed him on the bed they would roll into the MRI room and walked out to find my wife. The tears came again; sure not as many and not with the same force, but they came. They came with a subtlety that was more filled with sadness than fear. The ironic timing of his MRI kicked Denial and Rationality to the curb and allowed the Heart full access. My life is still not normal.

All signs at this point are that Andrew continues to be fine. An unofficial look at the MRI shows no change either way for the minuscule masses that remain. That is fine since it is likely that those masses could remain with him his whole life, silent reminders of the terror that he barely experienced and will never remember. That strangely seems appropriate this morning as I write. Maybe that is the perfect metaphor for where we are as a family. The emotional masses that remain in us are smaller, but they are still there. Every once in awhile we are reminded of their existence. Some times the reminder comes with tests and dejavu like yesterday. Some times it comes simply by seeing a picture of Andrew with barely any hair or hearing our girls playing with their dolls who still, every once in awhile, get cancer. One would hope that these masses would go away collapsing into the sweet realm of forgetfulness, but that would somehow cheapen things. Ultimately what Denial and Rationality do is they seek to minimize what has gone on to limit the amount of continued fallout under the assumption that the pain that this event brought might destroy us. It didn't destroy us then and it won't destroy us now.

That isn't bravado nor is it presumption, it is an acknowledgement of something greater than the pain. One of my biggest struggles of faith through all of this time has been one of the same struggles I have always had... only amplified. It is the doubt in God's goodness. I'm a presbyterian which means I am big on God's sovereignty (the idea that God rules and governs all things by His unfailing will) but sovereignty is no comfort unless you can also believe in God's goodness. Someone having ultimate power is scary unless you know that person is for you. That is where remembrance comes in and that is where Denial and Rationality do us all a disservice. You see unless I consistently practice the discipline of remembrance I forget that in the midst of that nightmare I never felt abandoned. Unless I am forced to taste those tears again I forget that their bitterness was countered with the sweetness of a Presence that I could not reproduce. Unless my mind is taken past my fear into those images and feelings and experiences I will forget that our story was one of mercy and that cancer did not win.

That is the strange thing; Denial and Rationality, who seek to keep you from thinking about your pain actually make it worse because they keep you from remembering the One who brought you through it. They strengthen the shadows that surround that pain, make it look bigger and more frightening than it really is, and deny the redemptive role that it was intended for. A year later we are still a family like any other except that we have a child with cancer.

Before and After

2010-12-12T14:59:00.001-05:00

I did something silly the other day. Luke had broken a fruit plate all over the floor. After cleaning up the pieces and reassuring the kids that it was okay, I proceeded to dump the them in the trash. Some time went by and I came downstairs to make a casserole for dinner. As I was cleaning up the mess on the counter, I took some things over to the trash. It appeared full, so I without hesitating, I pushed the trashed down with full weight, forgetting the glass inside. I pierced a hole right below my thumb and have since had to readjust to doing things with one hand. As I was upstairs that night checking my email, it dawned on me that the last time I had checked it, only a few hours earlier, I didn't have my "boo-boo." I started thinking about how quickly a life can change with an accident or traumatic news or a joyful occasion like the birth of a baby. My cut, although fairly minimal, had changed my plans and my abilities for that evening.

This event also began my thinking again to this time last year. Madi was about to turn five and we would celebrate at a local bakery with a princess theme and a few friends. The Christmas cards had been sent, most of the gifts bought, and the second advent candle had been lit. Everything was going along as "planned." This time last year we had no idea what was about to hit our family. We had no idea that Andrew's cough was more than infection.

As December 22nd approaches, a day that will forever be etched in our memory, Rick and I are faced with many different emotions. We of course are so joyful to have another Christmas with our precious Andrew. We rejoice in God's healing and His faithfulness. However, we also find certain songs bringing us quickly to tears. Pulling out Christmas decorations that I had so fervently stashed away two days before Andrew's long stay in the hospital brought about some feelings of rage and indifference. At one point I wanted to throw it all out the window and forget Christmas. Our lives were changed last year as individuals and as a family. The "dreaded" date approaches and so many memories come flooding back into my head. But time will not stop. We will get there and we will survive. We will mourn the loss of "innocence" that was taken from our boy that day and rejoice in the amazing beauty that came from the ashes. We will hold each other a little tighter and be thankful, Lord willing, that we have nowhere we have to be after Christmas.

Before and After. Many of Rick and I's conversations have referred to "before Andrew had cancer" or "after we made it through his treatments." Our lives refer to this time period because although it feels like ages ago at times, it was only last year that we lived it.

And we are amazed at where we are now. Before Andrew had cancer, I had never felt the love of God or His people like I have this year. Before Andrew had cancer, I didn't have a beautifully made blanket by a friend to keep me warm or some new Christmas decorations given in care packages. I wasn't as close to my parents or my sister-in-law and her family. Before Andrew had cancer, I thought I was somewhat in control of life and what happened to my family. I believed I knew how things would bring deeper character. Before it, I believed I would never survive the news of a family member having a tumor, let alone make it to the other side. I didn't have a new friendship that began with meals and has blossomed into real life. Before Andrew had cancer, I had never been more terrified of losing something so dear and so relieved when God decided I could keep him. I have learned to pray more and trust more in my heavenly Father rather than myself.

Our family has made it to the other side. This year we didn't just survive, but we flourished. We became stronger, more dependent, hopefully more thankful people. It has been a wild year and we will give praise once again to the little baby that came at Christmas and is mighty to save!

Below are two Christmas pictures. The first one is our "before" taken last Christmas and the next one is our "after" taken this Christmas season! Merry Christmas to you and your families!

Deja Vu

2010-11-04T14:55:00.000-04:00

Everything is quiet except for a faint noise that is coming from upstairs. It has lessened, but it is there all the same. It is a cough. A cough that brings with it so many memories and horrible nightmares. For the past week or so, Andrew has had a cough. The doctor said that is was just the common cold and his last scan showed nothing out of the ordinary. Still the cough that has been here for the past two nights has brought some anxiety.

A few nights ago we were at Target as a family just getting a few things for Rick's new, amazing office in Staunton. The kids love to look down the toy aisles and dream about birthday presents and Christmas gifts they might get. We were walking around almost ready to checkout and the cough started. It kept going and going through the checkout line, into the car, driving out of the parking lot, and on the road home. It kept up so much that it made Andrew sick. We cleaned him up, settled the other thrree kids down in bed, and continued to care for our coughing boy. After almost 2 hours, I had to take a break. I went down to do some theraputic cleaning and get ready for the next day. Rick called me back upstairs to help him out and Andrew had gotten pretty sick. However, he had stopped coughing. We don't know if he was actually choking on something and just had to "get it up" or what, but after that episode, he was fine and exhausted. Rick and I were a mess and just emotionally drained from it all. Sweet Andrew kept talking to us the whole time about Disney World and roller coasters he wants to go on next time he goes and just kid things. He is such a trooper with his joyful spirit and his "sick bucket." He fell asleep around 9pm and slept the whole night without one cough. Rick and I proceeded downstairs to debrief and just hold one another. So much for picture hanging and planning that we had on the schedule for that night.

Then last night it happened again. Right after bathtime (Rick was at a meeting) Andrew started coughing and just couldn't stop. This time he didn't get sick, but it just kept nagging him. The girls went to bed and I pulled Andrew out of his room so Luke could fall asleep. We lay on the bed together just talking, praying, and singing. He was so sweet. He just wanted to talk between coughs and try to get to sleep. At one point I just lost it and put him back in his bed so I could escape for a little while. I need to just "clean" or something to try and gain some idea of control. Of course at night and without Rick, my mind was going crazy. I keep thinking about all we went through, the x-rays, the "innocent" cough he had this time last year, and what might be lurking in his little body. I thought about how I could not handle the news again, and just wept over the brokenness of cancer and lives that are affected by this awful disease. It is not a "one time" encounter. The fear and memories continue to haunt us. As I was tucking him in to go downstairs, I told Andrew I was going to pick up and get into my pj's. He sat straight up, looked at me, and said, "Mom, do you have animals or Thomas the Trains on your pj's?" He was not worried at all about his cold, he needed to know what my pj's looked like. I kissed him and prayed as I shut the door that he would be able to stop coughing and go to sleep.
The coughing slowed until finally he was asleep. I sat downstairs with a glass of water and my scrapbooks spread all over the family room floor. I looked through wedding pictures, seminary pictures, baby books, family parties, and trips, and even glanced quickly at the hospital stay last December. The memories and trials of my life filled my mind and heart. There are many situations that I thought Rick and I would never make it through. Cancer being the biggest. But we did. We made it through. We still struggle and remember and fear. We still wonder if God will bring that awful beast back into our lives. I think about our amazing Make a Wish trip and I hope that was the pretty bow that tied up the end of that chapter. We will see. Thankfully, I don't have to know. I have no idea what my path will have in it next or how we will make it through. But Jesus does and He promises to never leave me nor forsake me.
I prayed last night before I closed my eyes that my children (all of them) would be spared from major health problems. I reread Psalm 91...a Psalm I prayed over Andrew multiple times especially verses 14-16. I asked God to bring this mother's heart peace to sleep last night and to trust that our doctors will lead us through all this. And I fell asleep to a quiet house.

A Little Piece of Heaven

2010-10-20T10:26:00.002-04:00

"A little piece of heaven..." there is really no other way to describe this past week. Imagine a place where you never doubt that you'll be taken care of, or forgotten, or allowed to be free to experience all your dreams, or to just feel special all the time. That is what this Make A Wish trip was like. The neat thing was, this trip was because Andrew had cancer, but it truly was for the whole family. As Andrew's parents, we could tell he was treated a little differently, but all of us were made to feel special. All of us were treated like royalty and allowed to do everything we wanted. This trip allowed us to celebrate as a family the victory we had over cancer and to feel like everyone we came in contact with understood our battle and celebrated with us. Let me spend most of this blog sharing our week and the great memories we made.

From the moment we began the trip on Monday morning, we were honored. We were picked up in a stretch limo at our family's house.

We were ushered to the front row of the airplane and cared for the whole flight. When we landed, we were greeted by a "Give Kids the World" representative holding a sign that said, "Wecome Andrew Gilmartin!" After visiting Avis car rental, we drove away in a 2010 Sienna van. We arrived at the most amazing place to stay we could have dreamed. It is called Give Kids the World and it truly does attempt to do that very thing. We were spoiled rotten with everything from ice cream all day long, free meals, a park that looked just like Candyland for the kids to play, tickets to all the amusement parks in the area including Disney and Universal Studios, and a whole suitcase full of treats for the kids to take home. We were also given parking passes to the parks and a tag to wear that allowed us to go to the front of all the lines. Yes, all the lines (and Disney was crowded). We made it in to see the princesses and Mickey in no time. We rode roller coasters in minutes where others waited for hours to hop on. We even got a private ride on Kilamonjaro safari at Aminal Kingdom. It was amazing. The characters stopped in parades to hug Andrew and high five my kids. We kept feeling guilty for all the other kids, but then reminded ourselves of the year we had with the battle. This was a time to celebrate and allow others to join in that celebration. I think the few highlights were the Princesses that the girls got to meet, the private meeting and signing with Barney after his show, and Andrew's encounter with THE Buzz Lightyear and Woody. He just stood and stared at them. This experience at the parks was truly a magical experience...one we all will never forget.
Give Kids the World was also almost as magical. Every volunteer was friendly, helpful, and excited to have us there. We had unlimited access to meals, ice cream, and basic supplies. Our family also got to do amazing things like ride a train, visit a castle, and ride horses all at the GKTW. There was also a pool that resembled a beach and water fountains coming up from the ground that Luke loved to run through by himself. The kids actually had a hard time not just staying at Give Kids because they provided so many fun things to do. This amazing place is run by about 30 staff members and over 1500 volunteers daily. They have thought of everything a family with kids would need (stools in the bathrooms, night lights, toys, little tables and chairs, and more.) Again, we just felt like we were living in a dream the entire week we stayed here.

So, where are we now? Well, we are back in our sweet home together. We have more memories, more stuffed animals, more pictures, and more Mickey ears than ever before. The kids are constantly reenacting their experiences and talking constantly about their time together. We all cried when we had to say goodbye and wished we could stay forever. But like all dreams on earth, it had to come to an end. We had to come back to reality....loads of laundry, preparing meals, homework, grumpiness, and responsibility. Our family added another chapter to our journey story with Andrew. A chapter of joy, celebration, and fun. Make a Wish is truly the most amazing organization ever and we will be forever grateful for the wish we had together last week. We will continue to journey together, keeping our eyes on the One that provided the healing in Andrew's body and the ways we would rejoice together at Disney World. We are thankful beyond words for the "little piece of heaven" we experienced!

Leaving on a Jet Plane

2010-10-09T12:24:00.000-04:00

Well, Andrew turned 3 yesterday! He had a great day filled with Toy Story, pirates, friends, cake, and fun. He tells everyone now, "I am 'free' (three) and I am going to Disney World." We had some dear friends over last night for dinner and the first celebration of many. These are friends that are blessings from above that showed up with meals and goodies many times during Andrew's cancer. They are friends that we never met before Andrew got cancer, but did have mutual friends that talked about them. They have 4 lovely kids about the same age as ours and they are truly angels in our lives. We were able to hug and share tears and stories last night with them as dinner was being made. The kids played so well together and didn't want to say goodbye when they had to leave. I still stand in awe of how this friendship came to be and how God provided more than food and treats for both Rick and I through this family. One of the little boys walked in carrying a life size Buzz Lightyear balloon for Andrew. I immediately wanted to burst into tears because this is the same family that sent a life size Elmo balloon to greet us when Andrew's surgery was over in March. It flooded my mind with memories and reminded me of our journey once again. It touched some painful memories, but also the reminder that we didn't walk this journey alone. Anyway, it was a special, meaningful birthday evening with this family and our little boy.

Today we have another great celebration with some kid friends and their families at the park and then we pack our bags for Disney. We will be leaving tomorrow afternoon to drive to Northern Va to celebrate with family and then jumping in the limo Monday morning!! We are all very excited. We don't know what to expect, and as Rick wrote in his last blog post, we are not sure what emotions will arise. We made it through a tough year and now we get to celebrate. We plan to play hard, sleep less, eat lots, and enjoy each other as a family to the fullest.

White Noise

2010-10-08T10:30:00.000-04:00

All of my children sleep with a sound machine. The trend began with Madi's sensory issues and continued for the simple reason that they drown out whatever is going on outside of the room. Drowning out... that is a good way to describe the last few months. I feel like I have been soothed to sleep by the sweet sound of forgetfulness. As the season has changed however, the trees showing the sure signs of the march of time in shades of red and yellow, it seems as if this sound is growing quieter and quieter. Let me explain.

For several months now our family has been really normal. The occasional trip to UVA for what seems like routine appointments do little to cloud the fact that our day to day lives are pretty standard; dropping the girls off at school, boys running, jumping, climbing, meals, snacks, average. Lately, small intrusions into this wonderful world of average have become more frequent. There was the visit from the two young women, volunteers from Make-A-Wish giving us our itinerary and gifts for an upcoming trip to Disney. There is the paper chain counting down days till we leave on said trip. Then of course there is today, Andrew's birthday.

Andrew's birthday will forever be joined to our cancer story because it was his birthday a year ago that we were noticing this cough that wouldn't go away. It was a year ago that we began the march toward the crucible that was December and January. It is hard for the forgetfulness to keep lulling me when such unwanted reminders of reality begin pushing in. Today really begins for us a season of remembrance that, frankly, I would rather not do.

The promotional materials for the resort we will stay at next week, Give Kids the World, note that they strive to help kids forget about the doctors and hospitals, their reality, and have a wonderful time. I wonder if, for us, it will do the exact opposite. As strange as it sounds this trip shatters the illusion that things are normal, that we are normal. Normal families don't get all expense paid trips to theme parks. Normal families don't have badges on their chest that allow them to bypass lines. Normal families aren't told to bring an extra bag for all the stuff that will be given to them. These graces are given to those that have suffered or are suffering. They are gifts meant to both acknowledge that pain and ease it if possible. This trip, from the moment we are picked up to head to the airport to the moment we are dropped off again is a constant silencing of that forgetful sound that has drowned out our reality for the last few months.

The desire for forgetfulness is strong. There is something so powerful in us that reacts to painful circumstances by wanting them to simply go away. We make incredible commitments, internal vows, to avoid thinking about that pain, to not speak about it, and to cover it over as best we can with platitudes. In Christian circles we spiritualize this and sometimes even make it into a virtue. We ask what the possible value can be of dredging up the past and generally demand that everyone else be as committed to our fantasy that none of that ever happened as we are. The problem is it did happen and refusing to look at that has consequences.

The first consequence is that we act differently today because of those painful events. Every time my son has a cough, no matter how irrational I know it to be, I cannot but wonder if his tumor has returned. I have a very difficult time moving in compassion towards others who are struggling with children with a serious illness because it reminds me of my own pain; my love for them is handicapped by my refusal to remember. There are others but I won't belabor the point. What we experienced in the past has an immediate impact on how we act today. If we refuse to enter into those events we will keep doing what we're doing without much reflection and hurt others without much awareness.

The second consequence is that we cannot acknowledge the ways in which God was active in our suffering and pain. This is why God seems to constantly ask his people to practice the discipline of remembrance. So often the Israelites were called to remember their slavery, remember their leaving of Egypt, remember their wandering in the wilderness, remember all that God had done. My guess is many of them would have rather not remembered being homeless in the desert or the terror of not knowing day in and day out whether they would be taken care of but if they didn't remember that they also wouldn't remember how God had walked with them through it. They wouldn't have remembered how God was using that pain and struggle to draw them ever closer to himself and prepare them for life in the land of promise. When we commit to living with the sound of forgetfulness drowning out our reality we also refuse to acknowledge God's work and action through that.

I guess I say all this to remind me that it is good that this season is beginning. That doesn't mean will be comfortable for me, it won't be. I will have to remember that my son still has tumor in his chest. I will have to remember the terror and powerlessness of hearing the diagnosis. I will have to remember and sit in the fear of losing my son, the fear of pain and the unknown. I will be forced to also grapple with the grace of God who heard my prayers. When that sound machine turns off in the coming months I will have to come face to face with what is really going on in my heart but it won't destroy me because the same God who walked with me through the pain last year will be near to me as I walk through the ramifications of it today.

24 days and Counting

2010-09-18T13:30:00.000-04:00

It's been a while since we have blogged, but I wanted to give an update to our still faithful readers. Andrew went for his every three month MRI on Thursday. We got a friend to watch the other kids so both Rick and I could go and have our "hospital date" while the MRI babysat Andrew. He once again amazed us with his carefree spirit and bravery as they put the IV into his arm. Tears were shed, but as soon as it was done, he was smiling and laughing again. They took him back and the whole procedure took about an hour and a half. Rick andI grabbed some drinks and sat outside to chat. I hadn't really been back for a serious visiit since his surgery in March so it affected me more than I thought it would. We will be coming up to a year in October when the little cough in Andrew began. We will begin to experience the months that seemed so innocent last year, but looking back we see that something big was about to hit our family. As we near his birthday on October 8th, so many emotions come back. As we sat talking and processing through my fears and anxiety being at the hospital, I realized how numb I still am that we even went through this. My son had cancer? We spent our Christmas holiday here? Even with just having a "routine scan" with no major concerns of any return, I am struck again at how abnormal it is for 2 year olds to have to go through this. When we finally were called to come back and pick him up, I felt like I couldn't get out of that place fast enough. Unfortunately, we still had to head up to the clinic to have the doctor check him over. In his groggy state from the anestesia, Andrew looked up at Rick and asked, " Daddy, is this heaven?" No, sir!! This is not heaven, thank goodness. The doc thought he looked great, we grabbed a quick cafeteria lunch, and went home to greet Madi off the bus.
The call came yesterday around 4:00pm. Actually, I couldn't wait for the call and called the hospital twice to find out the MRI results. We really didn't have any real reason to be nervous, but there is still that lingering thought in the back of our minds. When we finally got the doctor's call, I just held my breath. The words on the other end were wonderful. A cheerful lady said, "Andrew's MRI looks great. His tumor has gotten even smaller!!!" There wasn't much left anyway, but we are even more thankful that it has done what the doctor thought and got even smaller!! Praise our great Physician who continues to hear this mama's prayer each night that we will never have to walk that road again with this little guy!! Please rejoice with us over this great news.
On another note, we have torn off one more link in our chain that counts down to Andrew's 3rd birthday and when we leave for our Make A Wish trip to Disney World. We will depart from our house after two Buzz Lightyear parties here to go to Northern VA to stay overnight with Rick's family. Then, get this, a 10 passenger LIMO comes to pick us up (4 carseats in a limo....quite different from my prom experience) and takes us to the airport. We fly to Florida, pick up our rental van, and drive to what looks like the most amazing place we could be staying. It is a place called Give Kids the World (look it up online if you can). They pamper us with food, lodging, entertainment, characters, pools, and gifts for the week. They also pass along the Disney park passes and all the added benefits that go along with that. Our "send off" party is this Monday night with our reps who show up with dessert and fun for our kids and all the info we will need for our trip. The kids are so excited and their mom can't stop thinking about it all day long! What a celebration. I think it is perfect timing too that we just went to an MRI at the hospital. The emotions that flooded back after just being there for a few hours reminded me that this kid deserves every second of this trip and we will probably cry over what we went through, but we will also spend many moments celebrating and rejoicing at the gifts that God has given to us. The best gift being our son's life!!

Letting Go

2010-08-17T20:19:00.000-04:00

We have approached a new chapter in the life of our household. The chapter of going to school. After a few days this summer with the kids I thought for sure I was prepared. I would imagine what it would be like to only have 3 kids at home and then possibly 2. Nothing could have prepared me for today. Madi, my 5 year old, was going off to kindergarten. She had done preschool last year, but this was a totally different experience for me. I was getting ready to send my little girl into the big ole world for several hours away from me. Gone were the days of mornings in our pj's or naps after lunch. Nope, Madi was growing up.
There are some factors that contribute to my anxiety with sending Madi "away" to school rather than homeschooling her, but overall, I was just generally nervous. Will she make friends? Will she find her classroom? Will she make it to the bathroom? Will the day be too long for her? Will she get lost in the crowd? All those questions and more swirled through my head as the day drew closer. We took her out and got her the new school outfit and bookbag and lots of school supplies. We prepped her for all we could with her schedule and her teacher. I met with her teacher, the principal, and some other teachers that will be involved with Madi this year and realized that God had laid a perfect path for my little girl. He had already taken care of all the details that I was worrying about and it was going to be fine.

Two days before the "big day", I began to get emotional. I would just stop and stare at her as she played and wonder where my toddler had gone. I would look through old family scrapbooks and reread the captions to her baby pictures. Didn't we just bring her home from the hospital? Wasn't it just yesterday that we were teaching her to walk, or brush her teeth, or draw people on paper? Where had the time gone? Rick has a great quote that he has used several times during this season..."Time is a wicked tyrant that waits for no one." Time marches on whether we like it or not. Whether we are prepared and ready, or not.
So, today with a lump in my throat, I straighted her collar, gave her a healthy breakfast, took some pictures, prayed for her, and sent her to school with her dad. She was excited, nervous, and so very grown up looking. I thought of her constantly throughout the day and would look at her schedule that her teacher gave us that is on the fridge just to see where she was at that moment. I chatted with friends, checked the answering machine just to make sure the school hadn't called, and waited. I waited to see what this day had brought for her. At 2:45, I loaded the rest of the gang into the van to go pick her up. I waited in the car line and as we started moving I felt more nervous than I had all day. This was the moment that I had been waiting for...was she happy, sad, or nervous? Was she still in the same clothes that we had gotten her ready in? Did her world grow in great ways that day? As I pulled around the loop to open her door, there she stood. With the biggest smile on her face I had ever seen. She cheered when she saw my van and leaped into the car shouting, "Everyone, I had a great day at school." I immediately burst into tears of thankfulness. Madi had done it. She had made it through the first day and would make it through the next one. She seemed so grown up when she talked about her day and told me all the fun she had, the songs she sang, and the teacher she already loved. I was so proud of her and so excited about her year to come. We will make it!! I wasn't sure last night, but tonight I know that with God's help Madi and her emotional mother will make it through kindergarten. I am not sure about college or a wedding yet, but thankfully I don't have to think about that now. God has been so faithful to our family in so many ways this year...this is one more example of His deep love for each of us.

If You are Wondering

2010-07-22T15:53:00.000-04:00

Today was Andrew's "big" day. Today was the big drive over the mountain to get his VMA and HVA levels checked. He is pretty laid back about it. He gets his Toy Story toys, his dee-dee (blanket), his snack, and little Spiderman back pack and heads out to the car. Today his sister was going with us to go to Occupational Therapy in Charlottesville, so he even had a buddy to sit next to and play with in the van on the way up. Madi and I dropped him and daddy off at the clinic and headed off. About an hour later we heard the news
"Good news, " Rick said. The doctor thinks Andrew looks great and he thinks he is doing so well that he has bumped his scans further one month. And we only need physicals and urine checks each month, not blood. He determined that Andrew's HVA scores kept jumping up and down so randomly, that that wasn't a good indicator with what was going on inside. So, we will do another physical next month and then not do the scans until September, rather than August. And....we only have to do one day MRI's instead of a three day scan schedule with the MIBG. That is wonderful news. That means that Andrew looks so good and things are progressing so well that the head of Oncology at UVA is less concerned than ever. I got tears in my eyes immediately thanking God once again for sparing my son and running through the large amount of memories that I have of that hospital over the last 8 months. We are celebrating once again and so thankful for our son's good health record.
Another bit of exciting information regarding our celebration. Andrew has been granted his Wish to go to Disney World and we leave October 11th (three days after his 3rd birthday) to fly down with the family for a week at Disney. We are very excited. We even get picked up in a limo at the crack of down to ride to Dulles. We will keep you updated on those details, but what a wonderful way to celebrate another year of Andrew's life and the victory we have!

The Flip Side

2010-07-19T13:32:00.000-04:00

It has been a while since we have written an update on our blog. Life is moving along as it always does. We just got back from a wonderful vacation at our favorite beach in North Carolina. The kids had a great time and Rick and I got to just unwind a little and take a deep breath. Vacation takes on a different meaning when you are a mom. You see, Rick got to leave his job in the Valley, however, I brought most of my job along with me. The difference for me is the phone calls, the house work, the emails, and just the "duties" that go along with the day to day life. I love being with my kids, but needed a break from the routines we become so enslaved to. We were able to just get away, leaving all internet access behind and be a family.

As we unpacked our loaded van and the kids ran around the beach house claiming their rooms and their beds, I noticed how each one had grown up in many ways this year. Madi was almost in kindergarten and becoming a beautiful, young girl. Becca had become our dramatic, imaginative child that wanted her bed to be a boat to sail away to grandma's. Luke was taking steps and by the end of the vacation had mastered walking. And our little hero, Andrew, well we decided to put him in his own big boy bed at the beach. We had never tried it before, but he wanted to do it so we thought we would try. The first night as I walked from room to room to check on the kids, I stopped for a while to just stare at the "almost 3 year old boy" sleeping soundly in a big bed. I just watched him and smiled and cried. I smiled because he is growing up and is such an amazing little man. I cried because only a few months ago I didn't think we would be able to go to the beach. The original diagnosis was 8-10 months of treatment and then another check. We were supposed to be in the hospital with chemo, shots, and doctors. However, our Great God saw fit to take us down another path. Andrew is doing well and enjoying a beach trip to the fullest...without tubes, shots, chemo treatments, and major concerns. I would stare at him almost in disbelief that he was there, sleeping soundly, doing so well. My heart is beyond thankful.

So we continue on with playdates, library visits, bike rides, wading pool time, ice cream cones and fun. We learn each day how to love each other more and respect our differences. We fall down, apologize, and pick ourselves back up. We laugh, cry, shake our fists at the sky when frustrated, and live a little more each day. God had been good to us and we wouldn't be where we are without Him. We even had a neat opportunity (the picture fanatic in me loved this) to have family portraits taken. It is my husband's worst nightmare trying to get four young children straight, looking at the camera, and making a somewhat appropriate face. But, he was sweet enough to give me this gift for Mother's Day. So on two different occasions, we found matching outfits for everyone, went out in the heat a little past bedtime, and took probably 100 shots. Our great photographer did a wonderful job and captured many of our true expressions. I will hang these pictures proudly all over our house. They will be reminders of our story over the last 10 years, especially over the last 8 months. We are stronger than we were and more in love with God and each other because of the journey we have been down.

On another note, Andrew goes for his physical, urine, and blood tests this Thurs, so please pray that everything comes back "normal" once again. Thank you for your love and support!

To Infinity and Beyond

2010-06-22T15:44:00.000-04:00

"To Infinity and Beyond" have been the words flying around our house for the last 7 months. Our kids fell in love with Toy Story and Toy Story 2 as soon as they watched them. They pretended to be those characters, retold the stories, and begged to watch them over and over again. Then, to our surprise, Toy Story 3 began to emerge. This meant toys and games and coloring books and more Toy Story excitement. As Andrew entered the "cancer world" Toy Story came with him. We borrowed the videos from cousins and he toted his Buzz and Woody dolls with him to the hospital to sleep next to him in bed. Nanny found Toy Story pajamas and we tried to brighten his days with scenes from his favorite shows. Those friends have remained close through our battle and still stand on the front lines with us now. We invited them to our "Sundae Dinner" filling our table with toys, plates, napkins, and cups with Buzz, Woody, and their crew. Andrew still zooms around the house with Buzz flying through the air or pretends to push his fake buttons on his pj shirt to open his wings and take off. We have loved having a "theme" over the last few months and of course Andrew's mom has been sold wholeheartedly into it all.

So of course as Toy Story 3 approached, we all waited excitedly. We counted down the days on the calendar, watched trailers on the computer and rewatched our old favorites with action figures in hand. All three of our big kids couldn't wait to "see" their friends again. We took them to the big movie theatre. We got there so early that we were able to go to the showing before the one we had planned. We filled our hands with drinks, candy, and soda and paraded into the theatre. The kids did remarkable well for their first big theatre show. The dark, loud noises, and huge screen brought out a few cries and snuggles, but overall everyone did great. The three kids heard the music begin and all at once screamed..."BUZZZ" and "WOODY!" They were there right in front of them. Andrew sat on my lap with his Buzz Lightyear shirt on. He munched on 6 cups of popcorn, several twizzlers, and diet Coke. He stared wide eyed at the huge screen the entire time and loved every minute of it. I saw the show through the eyes of my children It was a good show, but for me a little intense. I wondered how Madi was holding up with the loud noises and special effects. I kept checking on Becca to make sure she wasn't scared of the bad guys and was having a good time. And I sat snuggled with the little blond haired boy that brought this story to life again for me back in December. Several times I even got teary just thinking of our journey together and how brave he had been. Then the last scene of Andy going off to college and having to say goodbye to his mom and his old toys almost brought me down completely. You see time as already gone so fast. I can't believe I have a 5 year old. I can't believe we survived cancer and spring and summer have come for our family. I can't believe my brave little boy is growing up. He is seeing big movies and talking about the potty and how he wants to do big boy things. I can't believe that one day I will be saying goodbye to him and having to say goodbye to his special toys. For that I am not ready. And I am thankful I still have a lot more time. The kids raced out of the theatre pretending to be the characters again. They have spent the last few days flying like Buzz or riding horses like Woody. The toys are all over the house and someone always has one of the characters. And life is as it should be. Kids being kids.

Andrew goes this Thursday back to UVA for his monthly scans. For some reason it seems like forever since we have been there. I love that feeling, but I still get nervous going back. I still hold my breath that maybe the test results will hold bad news. I still wonder if our battle is over. And I still wonder how in the world we all made it through. Please pray that everything goes smoothly. Please pray that the test results come back clear and not in error. Please pray that we can drive home on Thursday to begin packing for a much needed two week vacation at our favorite beach spot. We will drive away as a family. Much different than we were this time last year. Yet, closer. We are all excited to get away from the rountine of daily life and enter into a world of time slowing down and relaxation. The kids will pack their favorite toy friends and show Buzz and Woody another world that is to "infinity and beyond."

Of Songs and Memories

2010-06-07T13:23:00.000-04:00

Hey folks,
Below is a link to a temporary website that a friend has put up of some of the recordings of the concert. Some of you have been asking about it so I thought I'd pass it along.
http://web.me.com/mccalljk/Pilgrim_Road/Pilgrim_Road.html

Sundae Dinner

2010-05-23T20:52:00.000-04:00

Last night after the kids were in bed, Rick and I had a wonderful talk. I love talking with my husband. He is kind, caring, inquisitive, sensitive, and smart. We talked about our day, the wonderful evening we had had with some new friends, and how we will begin a new week hopefully with much less stress than the last. I shared with him how I had been praying that morning thanking the Lord for the great news about Andrew and wondering if my humble cries to Him all last week actually made the difference with the scan results. No, I am not God, but I do believe that our prayers matter. I just thought for a minute that maybe God had chosen to use my prayers to "sway" His decision with Andrew. Of course He had the ultimate plan laid out, but He does call His people to pray and to pray boldly knowing that He hears our prayers. Anyway, we talked about that concept for a little while as well as the unfortunate fact that our minds seemed to already be moving on from the great news we received. Sometimes it is easy in the good times to just move on and become independent again and just "forget" what we went through. I didn't want to do this. I told Rick that at the beginning of the week when I was so scared, I shared with God that if He would spare my son, then I would throw a big party or do whatever He wanted. I wanted to shout from the mountain top that God had saved my boy if that would happen. However, my sinful self got involved quickly and the desire to really celebrate lost its appeal. Shouldn't we just move on and get ready for the week or even the "next stress in line?" How awful of me! You see that action is not Biblical. When God blessed the Israelites or spared them from harm, they celebrated. They threw parties and gathered their friends and families and praised God together for what He had done. Rick and I decided right then that the next day would be a day of celebration.

We told the kids that morning that there would be a party that afternoon. It would be at our house and they wouldn't want to miss it. They made it through church and lunch and even naptime. While they all napped, Rick and I worked the magic. He went to the store and I covered our kitchen with streamers, balloons, a blue tablecloth, and Toy Story plates and napkins (and action figures). As the sleepyheads awoke one by one, we gathered them in Andrew's room and told them the party was about to begin. Rick shared with them the Bible story of celebration and we talked about how scared we had been and how good God had been to our family to heal Andrew. We also told them that this party was not just for Andrew, but for all of us because of what we had made it through and how we could celebrate. We led the kids downstairs to the decorated kitchen and surprised them with ice cream and all the toppings you could possibly want to make sundaes. As many of you know, I am a time/schedule keeper. The kids can have light snacks when they wake up because we eat pretty early and I don't want them spoiling their supper. So at 4pm when we were dishing the large scoops of ice cream onto their plates my heart turned to rejoicing. The kids didn't really even know what to think. Rick and I helped with Reeses pieces, chocolate chips, gummy bears, syrups, fruit spreads, whipped cream and sprinkles. We piled it high on each plate and let the kids just dive into the candy around them. They ate and laughed and ate some more. By 4:30 we were all stuffed and feeling a little sick, but we were happy. We took the time out of our normal schedule to celebrate. To remember the God that has been faithful this entire time and continues to bless us with life. It was a great time with our kids. They were way too full to have dinner so we camped in front of, what else, but Toy Story before going upstairs to play and read before bed. Our family has learned that it is easy to mourn loss and feel negative emotions when bad times hit. However, it can be a little harder to take time and rejoice together and remember that God loves to give good gifts to His children.

Disappearing Act

2010-05-22T14:04:00.000-04:00

Here is the continued story. We were relieved on Wednesday afternoon to learn about the crazy urine test that had come back way too high for our liking. When the nurse told Rick in the clinic that the second test had come back and it was only 12.8 instead of 30.7, we were relieved to say the least. We took many deep breathes and shed tears of relief and praise. It is funny going through such a traumatic event such as cancer though. Part of me thought I would do leaps and cheers around the house when I found out the news, but instead I responded to Rick's call with a "oh that is good news" and a fairly monotone voice. You see when you get a scare like cancer returning in your son's body, you (or I did) spend so much energy and time worrying, praying, predicting what life will look like if bad news hits, that when good news comes in, you are thrilled, but the depleted energy in your body has to catch up to the thrill in your heart. It is a very strange experience. Anyway, knowing the normal levels of Andrew's test going into the scans this last week made the trips to UVA much easier. I decided to stay with the other three kids and try to keep everything as normal for them and Rick was an awesome dad and went with Andrew all three days.
Wednesday, day 1 of the scans, Rick took Andrew up to the clinic for his "traveling IV" and his injection of radioactive isotope. The boy amazed us from the start as he only shed a few tears when the nurse put in the needle and then he was ready to hit the town again. That day was a short visit, but one of getting used to for the children at home. The girls studied Andrew's IV and covering when he arrived home and asked tons of questions. They wanted to make sure he wasn't hurting, that he didn't have to sleep at the hospital and that he was not sick again. It was interesting how much the IV jogged their memory of the last few months and the hospital time. Madi, my sweet sensitive girl, especially asked questions and just intermalized stress during this time. Andrew even asked me when I tried to put him down for a nap if he was going to sleep in his home crib or have to go back to the hospital.
Thursday, day 2 of the scan day, Rick had to have Andrew up and out of the house by 6:00am. He wasn't allowed to eat anything due to the sedation and he wasn't thrilled about being woken up. This day was a pretty easy, straight-forward day. Andrew had his part 1 MIBG that was a 3 hour scan. Rick attempted to finish his sermon in the hospital cafeteria, but that proved pretty pointless with all the distraction both around him and within his heart. Andrew "woke up" around 11am and was home by 12:30pm. He seemed okay, however, the girls once again took immediate notice of the fact that he still had his IV on his arm and he wasn't home for good. The questions arose again about his cancer and why he had to go back to the hospital. A side note about this day...it was Rick and I's 10 year anniversary. We were blessed with a dear friend to babysit the kids and a night out to have a nice meal and share our hearts. We went down memory lane with where we were 10 years ago and how much life had changed. Had we ever dreamed we would be doing this with one of our children?
Friday, day 3 and the last day of our scans, was a little more frustrating than the day before. We received a call Thurs night from one of the techs at the hospital asking if we could come earlier on Friday to have Andrew's MRI We thought this would be beneficial to our time, however, Rick ended up being there from 8am until 12:30pm. Andrew was sedated for part 2 of the MIBG and then transferred to radiology for his MRI. He was home for the afternoon with some new Toy Story toys in hand. He just continues to amaze us. He sat in the waiting room with Rick, with no toys or books for over an hour waiting to go back. He didn't complain at all about being back at the hospital. He didn't mess with his IV in his arm the entire time he had it in. And he bounced right back after all the procedures.
Rick called on his way back from the hospital to let me know he was coming and to tell me that everything went okay. As soon as I hung up with him, I received a call from one of the techs at the hospital. Apparently even after almost 6 hours of sedation and scans over the past few days, the doctors discovered that there was still an area that hadn't been scanned. The tech asked me if I thought Andrew would be able to remain still for 30 minutes while they did one more scan on his body. I boldly stated "no" and the tech let me know that he would pass that info along and a doctor would get back with me. About an hour later the phone rang and the "familiar" UVA hospital number appeared on our caller ID. I answered the phone only to hear our oncologist's voice on the phone. He proceeded to tell me that he had gotten the images back from the scans and needed to talk with both Rick and I on the phone!!!! My heart sank. This doctor in the past had had no problem giving me information on the phone without Rick. Now he wanted us both on the phone? What could this mean? I walked through the house trying to hold myself together. I called for Rick and told him the doctor was on the phone and we both needed to hear the news. My voice was shaky and my mind was already racing. Rick and I sat together as the oncologist informed us basically that everything looked GREAT!! The MIBG scans showed that less cancer remains than before and the cells are dying. He is very pleased with Andrew's progress and things are going as well as they could. He then began to try to explain what could have happened with the crazy urine test...explaining that it must have been diet or antibiotics. To say the least we were pleased with the news. Whenever I hear the oncologist on the phone my heart almost stops. I know I might hear information that could change everything forever. Once the words come out, you can never go back. So to hear words of encouragement and hope only lifted the incredible fear that had been living in my heart for almost 2 weeks. The cancer is DISAPPEARING and the battle is being won. Andrew is fine and our boy is back in our house sleeping soundly with no IV in his arm, only some war bruises on his body from the battle that he has been fighting for 6 months. Thank the grand General that he serves whom has led the fight and conquered the grave.

Exhale

2010-05-19T14:58:00.000-04:00

Dear friends, family and faithful readers,
You can all exhale as Rick and I just did because we found out that the urine test was a fluke. The number that we were concerned about was 30.7 and the new test results came in....it is only 12.8!! That number is in the range of normal for Andrew so as far as we know, everything is fine. We are very relieved and thankful. The scans will go on as planned for this week, but we will not be as worried about the doctors finding more tumor growth or tumor spreading. Thanks for your prayers and please continue them for all of us. We will let you know how all the scans come out after they are all over. Stay tuned!

Pray for Nothing

2010-05-18T15:40:00.002-04:00

Well, just to keep this type A personality on her toes, I found out yesterday afternoon that our scans for Andrew are this week. Yep. Wednesday, Thursday and Friday. We have to scramble for medicines he needs and childcare and rearranging our schedules. We have to figure out who can stomach the IV insertion that Andrew will have on Weds and will have to come home with for three days (one guess who that lucky person will be...hint....not me). We have to figure out what schedules can be rearranged. Luke's one year check up can wait a little while longer and anniversary dinners might have to be postponed. It is crazy. These scans were scheduled at three months for Andrew anyway, but we are having to hurry them because of a hopefully incorrect urine test. The ironic part is, we drove the second sample to UVA last Friday to just be able to be at ease that the urine number was right and now we will find out the scan results before the new test comes back on Thursday afternoon. So, needless to say we are a little frazzled. We are a little (and a lot) nervous. Rick and I are still very hopeful that the test was a fluke, but of course right now we dont't know for sure. We don't know if this week will be another drastic change in the Gilmartin family. We don't know if we will be admitted the hospital to begin another "plan" of attack to fight off the enemy that wages war in our son's body. We don't know if we will get pleasing results and be able to just "get back to normal." So we wait. We pray. We hope. We lean on dear friends and family. We hug our little ones tighter each day. We will keep you updated as we find anything out.
The first procedure is tomorrow (Weds the 19th) at 2:30pm. Andrew will go to the clinic at UVA and have an IV put in his arm. Then he will go to radiology to have a radioactive agent injected in his body. This agent will cling to any cancer cells in his body. On Thursday he and Rick will report to the radiology office again at 7:00am!!! That means Andrew goes without breakfast at 6:00AM to the hospital. The scan will run from 8:00am until around 11am. This MIBG will focus on the "hot spots" in Andrew's body. The radioactive agent will light the cancer cells up like Christmas lights and let the scanners know where the cancer is. Then on Friday Andrew will go back again (we will not check into the hospital...all outpatient) by 9am to have the more focused MIBG and an MRI done. He will probably be there at least until 1pm. Now, we all have to remember that these scans were planned for June. All of them were scheduled as routine for his first year after having cancer, so the doctor hasn't issued any more than necessary. He also hasn't told Andrew to be admitted or given us reason for real concern. The only thing that changed was the date of the scans and the confusing urine test that was "too high." So there is still great hope that nothing has changed and Andrew is fine. This is what I keep telling myself. This is what Rick and I keep repeating to ourselves. This is what we are clinging to in those late hours of the night. We cling to this and we cling to our God that is faithful and will bring us through. Please pray for healing in Andrew's body. Pray that nothing more has grown or spread and that these remaining cells will begin to breakdown and disappear. We will keep you all updated! Thanks for your love and support!

One Day at A Time

2010-05-15T22:19:00.000-04:00

I have received several emails or phone calls regarding updates on the answers the doctor was able to give with the urine test Andrew had a week and a half ago. Basically, when I finally was able to talk to the oncologist, his words were, "I find Andrew's test very baffling." When Andrew was first diagnosed, this test number was a 17. Right before the tumor was taken out it was a 22. Last month when he had his physical screening, the number was 13 and this month.....well, it is a 30.7. The doctor is perplexed as to how Andrew' numbers could have jumped that high after a great month last month including a clear MRI. Needless to say, Thursday evening was a very stressful, upsetting evening for me. I cried like never before with fear of the cancer returning and having to go back through the whole thing all over again. When I would lay down to try to go to sleep, my mind would race as if in fast forward with images of the hospital, chemo treatments, shots, hairloss, and many others. I was close to a panic attack several times. After a wonderful talk with my mom and a calming embrace from Rick, I finally drifted off to sleep.
The next day, Friday, was filled with plans to get another urine test up to the hospital as quick as possible for a retest. One of our research friends assured me that diet, antibiotics, stress and other factors can affect this test. The nurse that was at UVA even mentioned both how wonderful Andrew looked and also how lab tests can get messed up all the time. A retest was the thing to do. So, I loaded Andrew and Becca into the car and drove over the mountian with a fresh sample in a brown, cooled bag. An interesting side note...Andrew was very excited to show off "his hospital" and bounded all over the place once we got there. Becca on the other hand was thinking about many things. She would sit quietly in the car on the way up and all of a sudden come up with a question about Andrew's crib at the hospital or whether we had to stay there or if this would hurt Andrew. She still thinks about the time when he was sick and gets nervous. Anyway, after I dropped the sample off and spoke to the most helpful, wonderful nurse, I was feeling better. My thoughts are that it is a misread or mistested sample and things will be fine. We have to wait a whole week to get results back because the test had to be sent to Minnesota...who knows why. In the meantime, the oncologist is trying to move up Andrew's June scans to May just to be on the safe side. He still feels confident there were no variables in the tests, but can't tell me why the numbers are so high. He just wants to be safe. I am fine with that.
I ask that you would just continue to pray. Pray that nothing would come back alarming. Pray for clear scans and clear eyes to interpret the tests. Please pray for our hearts as we wait this week for the news. The nights are the worst for me. Pray that we would continue to walk by faith and trust in the God that has already paved this way for us. We will keep you updated and thank you again for staying involved during this ordeal. We need it!

Fighting the Lies

2010-05-12T15:24:00.000-04:00

It is May 12th. We are three months past the last chemo Andrew received. We are two months past his major surgery. Andrew has his color back, his spirit back, and a lot of his beautiful blond hair back. We have celebrated Rick's birthday, Becca's 4th birthday, and Luke's 1st birthday. We have walked again down our path of cancer with the incredible concert only a few weeks ago. Our family has come along way since our last stay in the hospital. Spring has come and we are moving on. Rick and I even got to go away this past weekend to Williamsburg to celebrate 10 years of marriage. We have celebrated many blessings in the last few months.

However, my heart still fights. My mind still goes back to those dark hospital rooms and the memories of fear and pain. My heart still fears upcoming scans and the possibilities of starting all over again. I have begun having nightmares of Andrew in the hospital and the cancer reoccuring. If I let my mind linger too long, I can almost go into a panic attack. Last night I was getting ready for bed and began to close my closet door. Hanging on the back of it is my old travel toiletre case. My mom bought me a nice new one for our trip so this one remained with a few odds and ends in it. As I looked closer at this bag, it too reminded me of the cancer story. Chapsticks, tums, hand creams, and alcohol wipes remain inside from the hospital stays. The bag would hang there with travel size things ready to go just in case Andrew got a fever and we had to leave quickly. I tried to take it down and something in my heart just couldn't. You would think that if something reminded you so much of pain and fear that you would want to rip it down and throw it out. But I didn't. I am still trying to figure out this path of grieving. My mind wants to run so quickly away from the memories and pretend that we didn't even go down this path. I even told Rick last night, before the concert I wanted people to remember our journey with us and keep talking wtih us. Now I feel like I just want to forget.

My heart still fights the lies. The lies of reoccurance that I am "sure" will happen. The lies that the doctors have missed something and we will have to start at the beginning. The lies that this "rest" is too good to be true. The other shoe will drop and we will be faced with an even greater beast. I still fight to believe that God is in control and still adores His children. He is taking care of us and hasn't forgotten to continue to take Andrew's cancer away. There is a blessing with the type of cancer Andrew had....we didn't have to remove it all. We didn't have to take apart his little body to get every last cell. The curse is that there is still cancer in his body and this unnerves a mom. I must still fight the lies that that was a good decision to leave it in there. The lies are hard to fight at times. Easier when I keep my eyes on my Shepherd that promises to kill the "wolves" of my pastures. One day at a time is the only thing I can do.

I called the hospital today to find out Andrew's counts from his last scans and the dates for his next MRI/MIBG. We have a three day plan for his scan in June. This means that they couldn't get all the scans in on the same day so we will be returning to UVA on three different days and leaving with an IV in our boy' arm. Not fun at all. On top of that, I chatted with a nurse that I don't normally talk to. She checked Andrew's chart for his count numbers and proceeded to say,"his number seems high." HIGH?? What does that mean? Higher than a normal child? Higher than last month? Higher than the doctor's would like? I had to get off the phone and leave my number for the doctor to call back and explain since she wasn't sure. If you can imagine how hard this day has been to just wait for the news. I have a feeling that there is no problem, but then again, back in October we thought it was just a cough or that he had just swallowed some sand. Another lie I must fight and another time to trust that God is in control. I ask you to please pray. Pray for my/our hearts that wrestle daily to be optimistic. Please pray for us to enjoy each moment we are given and to love each other well. Please pray that Andrew's cancer cells are dying and that the phone call from the doctor will be uneventful. Pray that his scans in June will show nothing out of the ordinary. Pray also that if for some reason things do take a turn for the worse that we will have the faith to step back onto that path.

Spring is Coming

2010-05-01T22:48:00.001-04:00

All is quiet here . The kids crashed as soon as their heads hit the pillows and Rick was close behind them. This last week has been a wild one, but one with an amazing ending. This week was the preparation for the Pilgrim Road concert for Andrew. Rick was one of the main performers so he was gone every evening for a few hours. On top of that, we had unexpected doctor's appointments come up, kindergarten orientations, park play dates, prayer times with friends, and just normal craziness being a family of 6. Needless to say, by Friday morning I was a bundle of nerves secretly just wanting this week to be over. A lot got done on Friday. Balancing checkbooks, mowing grass, taking Madi to her orientation, picking up Luke's one year pictures, food shopping, decorating an Elmo cake, picking up the house, and preparing for my nieces to babysit for my precious ones. The Lord was faithful to help all of those things get done. So by the time my wonderful family arrived at our house, things were smooth and I was ready to go. I really had no idea what to expect, who would be there, or how emotional I would be. I hadn't asked a whole lot of questions because I wanted to be surprised and really experience the concert.
My sister, brother-in-law and I arrived a few minutes before it was going to start. Many familiar faces greeted us and we stayed in the back chatting for a little while. Then the music began. A very familiar song by Steven Curtis Chapman started to play and the big screen up front filled with familiar images. I raced to my front row seat not wanting to miss a second of the night and cuddled in beside my sister in law and my wonderful friend Karen. The tears immediately began to flow. The pictures that flashed across the screens were familiar, but they brought with them memories. Memories of the time before cancer, during the hospital stays, and the season afterwards. My mind raced to try to remember all that was presented while the whole time just sitting there still not believing this had really happened to us. The slideshow was only about four and a half minutes long, but it felt like an hour. It was a beautiful collection of the last few months.
Then the show began. The lights dimmed and the group walked out onto the stage. The evening was filled with songs of faith, struggle, hope, and truth. Rick shared several amazing stories describing the awful journey we have been down; however, the faithful Father that has held our hand the entire way. I sat in awe of the musical talent that played and sang before me, as well as the story that was revealed in an incredible way. I watched as a dear friend sang from her heart and could barely look at me for fear of then not being able to collect herself. I watched two men come alive as they strummed the guitar strings and added harmonies to the tunes. I watched in amazement as the man I married almost ten years ago created such a beautiful sound with his voice and his hands. The concert was one of the very best things I have ever experienced. My soul was awakened and my heart was reconnected with my story and the story of my Savior's. In addition, I was surrounded by the very friends and family that had carried us through this battle. To see all those faces and relive this experience was truly the work and art of Jesus in my life.
As the final program song finished, I began to feel my self exhale. However, another wave of emotion was on its way. Three of the band members exited the stage as the clapping slowed and Rick was left standing up there. He thanked everyone for coming, but said he had one more song he wanted to perform. The song he performed was one that has been my theme song during this entire journey. It is one full of truth, God's power, and the hope that death will not win. I have sung this song probably 100 times at least. I would sing it holding Andrew with my hands pressed against his chest when he was first diagnosed. I would sing this song in the shower at the hospital or in my kitchen while my other little ones ate or danced around with me. The song that Rick performed beautifully on piano was the song "Mighty to Save." He shared his memories of his family with this song and then asked if we would all help him sing it. The words were posted on the screen and the music began. As soon as I heard the melody, chills ran down my body and my eyes welled with tears. Rick began singing and immediately got choked up and allowed the audience to take over. You see this is not just some cute lyrics to make me feel better. This was a song that constantly reminded me that God's hand was on Andrew and He could heal him. I was reminded that the Lord had already defeated death and He could give my son another chance at life. I began on December 22nd singing this song with such conviction and hope that it flowed through my blood. As I sat there listening to my dear husband's voice and the voices of those I loved around me, I was reminded once again of God's faithfulness and the fact that we had made it through the winter and spring was finally here. Andrew has been healed and we walk knowing that God honored our cries. As the song neared its final verses, hands went up in the air to praise the Great Healer. The sanctuary stood to finish out the final words and the curtain closed in hope.
As I sit here alone pondering just the last few days of busyness, music, friends and wonderful family time, I am thankful. Thankful for my son and his life that was given back to us. Thankful for my other children that have such amazing hearts and minds. Thankful for my marriage to a man of many gifts and a heart of gold. Thankful for the continued provision of God to help our family in so many ways. Thankful for our dear friends...both old and new that have blessed us in numerous ways this entire time. Thankful for refreshing family time with sisters, brothers, and nieces. And thankful that I am finite and I serve a God who truly loves me and has all my days planned.
By the way, if you weren't able to make this concert, there will be dvd's and cd's made that you can probably get a hold of. You don't want to miss this!

Independence

2010-04-16T15:48:00.000-04:00

In about 11 days a big event will occur. Our little baby Luke will turn one year old! It is hard to believe that this time last year we only had three kids to chase after. Now we have an active crawler that loves to get into all kinds of things....like mulch, toys, and toilet water (the worst!!). Just like our other kids we have watched him gain more independence with things he can do. He likes to feed himself, travel from one place to another on his own, and explore. We have been amazed at how quickly he has caught on to things and how he observes his siblings and copies their actions, for good or for bad. As I watch him, I think about how as we grow we not only become more independent, but we crave it. We like to do things on our own. To receive applause from others when we accomplish something no matter how small. We like to find identity in completing a task knowing that we don't need help anymore. That is just natural.

I guess that is why as an adult I am still struggling with independence. You see only 4 months ago my worst fear came true as I was faced with having a child with cancer. We had to quickly seek answers from doctors, nurses, hospital staff, family, and friends. My world was thrown into chaos and I had no choice but to depend on others to do just about everything for me. I was unable to heal my son, take care of my kids, clean my house, make my own meals, or function on a normal basis. I was also quickly forced to fall on my knees and believe for once in my life that everything was out of my control. I was out of control and it was actually okay. I wasn't destroyed...through the whole process or even now. I am not destroyed. I was provided for, loved on, and reminded of God's hand the whole time. So why do I all of a sudden believe that my life is back in my hands. That God can handle the stresses of cancer, but He expects me to figure out ways to pay all the bills, care for my child with special needs, or do daily life all on my own. I have quickly built up my defense walls again to begin to believe that I can now stop anything else awful from happening to me. That if I follow this formula or keep enough lists or follow a strict schedule then I can keep my loved ones safe and again be god of my home. In some ways God becomes an enemy and someone to fear because He might not be trustworthy of taking care of us anymore. These thoughts are absurd. God proved Himself more than loving, faithful, capable, and tender during the past few months (not that He even needed to), yet I am scared that He now expects me to carry the rest of life's burdens all by myself. The time in the hospital was awful, but it was also so freeing. I experienced a "shedding of my worries" like never before. I believed for a little while that God really did care about every hair on my head and wanted me to depend on Him for EVERYTHING. Now unfortunately, I am believing that He wants me to just grow up and be capable of doing life independently. I long to lay it all down. The stress that comes just from life. The stress that comes from the post-living with a child with cancer. The stress that comes from being an organized, type A personality. It is a gift, but it is also a curse that causes me to never really find rest from myself. I must fight the battle that rages in me daily that on one side screams...."Be like the world, pull yourself up by your bootstraps, make a name for yourself." And on the other side screams "Come to me (Jesus) all you who are weary and heavy laden and I (Jesus) will give you rest. Take my yoke upon you and learn from me for I am gentle and humble in heart. And you WILL find rest for your weary souls." Matt. 10:28-30

Just a reminder---April 30th at 7pm at Tabernacle Pres in Waynesboro--Benefit Concert for Andrew

Pilgrim Road (including Rick) will "sing" Andrew's story as well as the story of redemption. It will prove to be an evening not wasted.

Andrew's Big Day

2010-04-11T13:08:00.000-04:00

Andrew awoke yesterday ready for a day just for him. We gathered our crew and headed to the bagel shop for a quick bite to eat before we went to Miller's Storage Supply. You see, this amazing company decided to bless us incredibly by sponsoring a fundraiser for Andrew to help with our medical bills. Our family arrived at Miller's around 8:45am and the place was already hopping. A huge yard sale was going on, bands were tuning their banjos, chicken was grillin' on the grill, and people were roaming around everywhere. Our church family was there lending a hand and supporting us with their purchases. So many familiar faces and new faces wanting to greet us, especially our miracle boy Andrew.

Andrew was sort of clueless as to how much energy and time went into this event, but he would quote to a passerby, "I am Andrew and this is my big day." He loved playing with the random toys or digging through the big box of golf balls. He had a great time listening to the blue grass music while picking up rocks and tossing them across the haystacks. The snacks and hotdogs kept him satisfied and the unlimited bottles of water he got all to himself made him smile. Each event had a picture of Andrew and his story hung close by and the love that poured out on our family was just humbling. Andrew had a great time walking around, playing with toys, chilling in the shade, and just being with people.

It was a beautiful day with bright sunshine and nice temperatures. It was a day that marked another chapter in our story. A chapter of recovery, healing, and joy. A chapter that helped us reflect on the last few months and remember once again God's provision and so many people's care. Rick and I were able to just step back and watch our three oldest children independently playing and having fun. We were able to be thankful for the spring and what we have come through. And we were able to rejoice once again for the miracle of Andrew's health and how blessed we are. We thank all the friends and community members that invested their time, energy, resources, and love to make this a great day for our family and a celebration of sorts for our Andrew.

As I was cleaning off my dresser a few nights ago, I came across a verse that I have had laying there for a while. Eager to de-clutter, I went to just put it somewhere so I could see the wood underneath. I paused to read it and realized how much it pertained to Andrew and his story. It is a familiar verse..Zephaniah 3:17. It says:

The Lord your God is with you, (He has been with Andrew the whole time)
He is mighty to save (He saved him from death---our theme song has been "Mighty to Save" -Laura Story)

He will take great delight in you

He will quiet you with his love (this He has done during scans, IVs, and treatments)

He will rejoice over you with singing (yesterday was a celebration of singing and joy)

Needless to say, I have left the verse on my dresser as it has taken new meaning and reminded me once again of our story. As I close, I would like to invite everyone to put another date on your calendars. I know many of you are far away, but those of you that are close, please come if you can. There will be a concert on April 30th at 7pm at Tabernacle Pres. Church in Waynesboro, VA in honor of Andrew. It is a group called Pilgrim Road (Rick is part of this group) and they will be telling Andrew's story and the story of redemption through song. It will be a night of tears, joy, celebration, and fellowship. If you can make it we would love to have you. Donations are accepted and refreshments will be provided. The show will be about 2 hours long. Bring yourself, friends, and family and join us.

Our Amazing Little Man

2010-04-07T09:02:00.000-04:00

As many of you know, we went to the hospital yesterday for Andrew's first "post cancer" MRI. My nerves were rattling, but this little boy amazed me yet again. As I dropped off his sister at my friend's house and brought the other two kids home to be with the other sitter, Andrew remained in his carseat waiting for Rick to come home to go with us to the hospital. I told him that he could get out and have some time to play before we left, but he refused saying he needed to get to the hospial for some waffles?? Where he got that idea is beyond me. Anyway, he sat patiently waiting for about 15 minutes and as soon as Rick came home he declared, "I am going to the hospital." Away we went on a beautiful spring day.

We arrived in great time and headed for the clinic for Andrew's IV. Again, I was almost in tears just having to walk back in there, but Andrew ran into the elevator, pushing the buttons he knows and springing into his clinic room with his Superman bookbag on. He immediately asked for his snack and juice (which he usually gets, but not today because of the sedation). He said hi to the nurses and prepared for the next step. Two wonderful nurses came in and talked us through the IV. Andrew was lifted to Rick's lap and "searched" for a good vein. He glanced at the materials the nurse brought in and with tears in his eyes declared, "No shots." Although he was not excited in the least about this procedure, he sat PERFECTLY STILL and cooperative. The nurse even had to do two tries to find a good IV location, but Andrew was amazing. He just held his Dee-Dee (blanket), sucked his thumb, and waited. Me on the other hand had to close my eyes, take some deep breathes, and pray. As soon as the IV was in, Andrew hopped off the table ready to go showing off his new "tubie" in his hand. He was unphased by the whole thing and excited to go back on the elevator. I couldn't believe his "faith." He trusted us and knew we would all take care of him and he would be okay. I was the one that was having trouble. As soon as we entered the elevator, I could hardly hold myself together. Just the pain of the past months, the rumbling in my queezy stomach, and the little stick my little one had to get in his hand about did me in again.

We made it to the MRI waiting room. Buzz and Woody in hand flying through space and Andrew still in high spirits. Familiar faces greeted us as we were called back and the rest is history. The whole procedure took only 45 minutes to scan his spine. Rick and I hardly had time to gulp some some subs before the phone was ringing telling us it was time to pick Andrew up. He came to with ease and made us laugh once again with his post sedatation humor in his loopy state. No problems. No fear. No complaints. Well one...."I am hungry because I need some food. Waffles?"

We are so proud of our little man. We are so relieved that yesterday is over. We are so thankful to the wonderful doctors and nurses that take care of our sweet Andrew and help us all stay at ease. And we give praise once again to our God who chose to have mercy on our family once again. Thanks for your thoughts and prayers. We love you all.

Here is a picture of the loves of my life.

Will It Get Easier?

2010-04-06T09:45:00.000-04:00

I have about fifteen minutes. Fifteen minutes before I have to kick it into high gear and get 4 children loaded into the car. One will go to my friend's house in Staunton. Two will stay with another friend here at the house. And one will come with Rick and I to UVA for an MRI. I bet you can guess which one is the lucky one to get to go to the hospital. Yep, Andrew. He will travel with us to the familiar place he knows for his first MRI scan. This is a base scan to not only see how his internal scars are healing but also to see what the "base number" of cancer cells will be to compare all the other scans to in the future. This shouldn't be a "big deal" right? His last physical with the oncologist showed everything looking great. Andrew is behaving normally and the doctors have no concern that anything has changed. But for us as a family today reminds us that so much has changed.
This week has been a week of celebration and anxiety. We celebrated the resurrection of Jesus on Easter. We celebrated the hope we have now that death has been defeated and the hope that we have for eternal life with God. The kids all talked about the pain and suffering Jesus had to through before He died and how awful the people were to Him. We made "Tomb Cookies" and cheered as the story was told that Jesus was ALIVE. We also have had an underlying anxiousness as we remain in this world waiting for the return of Christ. A return that will wipe away pain, tears, and sickness. We face another doctor, another scan, another phone call that lets us know we are in the clear. The nervousness shows its ugly head in short tempers, busyness to keep distance from people, exhaustion, sleeplessness, and fear. The kids have asked several times how long we will be at the hospital and if Andrew will be coming home. Andrew has shed a few tears knowing his siblings get to stay with friends and play and he has to go back to the hospital. I have prayed for him as he doesn't have his central line anymore so he will have to have an IV placed in his arm again. All these things that little ones shouldn't have to go through. We do this by faith...trusting that God has placed amazing doctors, nurses, and caretakers in our path to take care of our Andrew. Trusting that this scan will come back fine and we can continue on into spring with our little ones full of life. We are reminded of the brokenness of this world and the trials we go through, but we also have the hope that this isn't the end of the story.
Please pray for us today. Pray for our little ones that will be away from us and their caregivers. Pray for Andrew...that he will be brave with the IV and the procedure. Pray for the doctors, nurses, and all the caregivers that will be back with him for a few hours. And pray for Andrew's parents...that we will be strong for him and full of faith to believe that God is in control.
One more cute story. The kids were doing puzzles nicely today as I was cleaning up the kitchen. Madi was doing a puzzle with different vehicles on it. One was an ambulance. She talked about the medical label on it and how this truck took care of sick people. We talked about how thankful we are to have things like this to help people get well. Andrew sat listening intently and then piped up, "Hey Mommy? Guess what? I am home now. I am home." I got tears in my eyes because I know he was declaring that he was not sick anymore and didn't have to stay at the hospital. He was home where he wanted to be. I know the road that we have in store for us for at least another 2 years. We will hold our breath with each scan and wonder if it might take a turn for the worst. But we will keep reminding ourselves of the God we serve and praying that God will continue to bring Andrew home!

Shameless Self-Promotion

2010-03-31T22:53:00.000-04:00

Some have been clamoring for details on different events that are coming up to help us raise money for Andrew's bills. Two events are happening this month!

About a month ago we were contacted by a company in Fishersville, Miller's Storage Buildings, because they were interesting in hosting a fundraising event for us. Every year Miller's puts on a community wide yard sale extravaganza and donates all the proceeds to a charity. This year they chose to support us. Miller’s is donating a bunch of radio and newspaper advertising to promote this event, as well as getting bands to perform, merchants selling their goods, food to buy, and even donating one of their buildings for a silent auction. The big event though is a yard sale open to the whole community. To get items for that yard sale though we need your help. We need mass quantities of the stuff from your basements, closets, and attics along with baked goods to sell at the sale. If you live in the area we need you to drop off your “sellables” during the week of April 5. The more the merrier! Baked goods should be delivered on Saturday morning. Details on the event can be found at www.millersstoragebuildings.com beginning on Thursday, March 31st.

The second event is a night of story and song on Friday, April 30th from 7pm - 9pm at Tabernacle PCA in Waynesboro. The event, entitled Pilgrim Road: A Journey of Faith and Hope will tell the story of our family interspersed with music (some original some not) performed live by myself and some friends. Donations will be accepted but admission is free. All proceeds from both of these events will go directly to our family. If for no other reason please come and be with us. Please come and remember and cry and struggle and rejoice with us. We aren't the only ones on this journey; many of you have travelled with us. Even if we were, we would want you there.

We are so incredibly thankful for the generosity of many we know and even some we don't know who are helping to bear some of the burden of this with us. God has been faithful to us and will continue to be.

Tomorrow (Thurs) we travel back to UVA for Andrew's first scheduled check-up with his oncologist. It is strange that something so simple should produce such anxiety. Andrew is doing well and yet we cannot shake the fear, fear of something we cannot see and in many ways still cannot comprehend. This is yet another part of this journey that is surprising, the constant fear of something coming back even when Andrew is "better". You cannot quantify it nor can you really describe it. It is like the fear that comes with shadows; formless, incorporeal, and yet horrible. The reality is that we want to ask, "when will this end?" but it won't. Every time he gets a cough we will think of the cough that led us to a CT. Every time he gets blood work or a scan we will hold our breath. Every time something just isn't healing fast enough or doesn't go away quick enough, dire thoughts will enter unbidden. Tonight Jess described it as innocence lost and she is right. Innocence is never something that you get back. Even in the New Creation, when Jesus remakes the world, I don't think innocence (in this sense) is restored. Innocence implies a lack of experience with fallenness. Jesus will wipe away tears, not make them as if they didn't happen. Somehow, in some wisdom I probably will never understand, innocence won't be restored but redeemed. Right now I cannot understand how cancer can be redeemed, how that kind of fear can be redeemed, yet I know it will. Perhaps better would be to say I trust that it will... knowing requires more faith than perhaps I can muster at this point. "The road goes ever on and on, out from the door where it began," the old hobbit said and we still walk it. It will lead to a good place but there are times when the walking is hard even when the sun is shining. That sounds strange doesn't it?

Where Were You?

2010-03-28T07:28:00.001-04:00

Have you ever sat in your comfy chair and thought... Where was I in ... whatever year or date? That is what I did as I cleaned up my living room this evening after a fun day. I began thinking of where I was 4 years ago. Four years ago today I was in the hospital...not for anything bad, but something very, very wonderful. My Becca Noel came into the world two weeks earlier than we had planned. I can remember the room and the doctor and the time with just her in that place. Today we had a grand day to celebrate our princess's birthday. We cooked cinnabuns for breakfast, had friends come "Under the Sea" for her party lunch, and took her to her favorite restuarant for dinner...Applebee's. It was a day of celebrating and thanking God for this little spunky girl He has given us.

Then I kept going with the game. Where was I three years ago? Well, I was pregnant with Andrew. He was a complete surprise and miracle from the beginning. We were entering into spring with two very young girls and I was probably panicking because I had no idea why the Lord had chosen me to be a mother of three kids this close in age. Could I really handle it? But I guess that was the point. I couldn't and still can't, and I needed His help.

One year ago we were preparing to have Luke. Yes, we have lots of kids in not so many years. I was exactly one month out and we knew we would be equalling the playing fields with three boys in the house and three girls. Again, I am sure I was worrying about how in the world I would handle four kids all under the age of 5. I could handle three (yeah right) but four was pushing it. Our house was bursting and we were taking one day at a time to see how this would all work out.

As I kept thinking about dates, I began down the other path. Three months ago we were packing our bags to go to the hospital, but not for joyous reasons. Our son Andrew had been diagnosed with cancer and we had no idea what we were up against. We didn't know its biology and we didn't know the time table of this fight. Our hearts were scared and we were leaving behind three little ones that still needed us at home. Three months ago began a journey no parent should have to go through. A journey that still today brings so many emotions at even the sight of "thinking of you" cards we received from loved ones. Three months ago we didn't know what spring would look like.

However, just one month ago things were so different. We went from numerous chemos down to no more and a planned surgery. Our family was planning to have grandparents here again for the last leg of treatment (we hope). We were a little scared of the week in the hospital, but we knew we could handle anything like that if we were done with cancer. In only two months everything changed again.

I then pondered this time last weekend. Rick and I had escaped to a beautiful cabin on the mountain. Family was here with the kids and we were away just the two of us enjoying beauty of nature and each other. We were napping, reading, hiking, sitting in quiet, conversing, and praying. It was an incredible blessing to be able to get away from the world and just rest. We were able to reflect on where we had come in such a short amount of years and how uncertain life and the world is. We talked about our fears of the unknown and our inadequacies. We talked about how small we felt and how lonely this place can be. And as we talked we realized that truly only one thing had stayed the same. One thing remained constant in the chaos and everchanging circumstances. The Lord. He has always been here. He has always provided. He has always kept His Word. He doesn't promise ease, comfort, or peace. But He does promise rest for our souls, security in trusting His plans, and love. A love that passes all understanding. A love that tends to wounded hearts and rejoices with the news of new life. A love that has been shown through people's service and constant care. A love that will never let go and will always hold us as we journey.
We have no idea what the future holds. I am sure some great things and I am sure some awful things. If you would have told me four years ago I would have 4 kids, one with some special needs and one with cancer I would have gone crazy. I couldn't have handled this news four years ago. Even as I think back to ALL that has happened this week (4 sick kids, appointments, sleepless nights, exhaustion, birthday parties, chores, playdates, food shopping, haircuts, and more) I know that my weekend last weekend wouldn't have been restful at all if I had known what would be happening. I spend so much time trying to "protect" myself from the unknown so I can somehow guard my heart and I am seeing that I don't have to. God already has. He has revealed each day to me in its own time. In Matthew 6::33 Jesus reminds us "But seek first the kingdom and His righteousness, and all these things (our needs) will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." My job is not to be God and try to sort out life and plan all my days. Nor can I if I really stop and admit it. He has my life and He is faithful and loving. In 4 years from today I know I will look back and be amazed at where He has brought me and how He has held my hand the entire way.

The Soft Sound of Weariness

2010-03-23T22:56:00.000-04:00

It has been only recently that I have really understood how profound and difficult a question, "how are you?" is. Of course we can add to that all questions in that genus, "how's your family, how's the boy, how's your wife," and of course the ever popular, "how are you... REALLY? (pause for gravitas). When that question is asked you really have one of three options 1) lie: this is a popular one institutionalized by the ubiquity of the acronym "o.k." sometimes spelled "okay". 2) dodge the question: this is done when a non-answer is given that often satisfies the interrogator such as, "we're getting along," or "we're here."3) tell the truth: this is an unpopular option which can produce discomfort and confusion on the part of both the interrogator and the one questioned. It is mainly for this reason that this latter option is avoided so often.

In the last few weeks I have found myself partaking in all of these choices... though of course I find ways of self-justifying so that option 1 isn't really a lie... more like a subterfuge form of option 2. What has compounded the already difficult answering of the question is the strangeness I feel at the fact that it is so difficult to find an answer. Andrew is fairly healed up, the family "routine" has returned, and yet still things just don't feel right. I feel as if I am watching one of those cursed Imax movies where you are flying in a glider through some forsaken ravine; the entire world is moving around you yet your inner ear is telling you that you aren't moving. I suppose it would be more the inverse; the world looks normal but my proprioception is going crazy.

Last week I had lunch with a group of area pastors from a bunch of different churches in the Staunton/Waynesboro/Augusta County area. As soon as I entered the room I felt that feeling begin to take over as the realization hit me that I hadn't seen this group of people since Before Cancer (it seems now that all of life is neatly divided up BC/AC). I dreaded the first question, yet it came still, "Rick... right? How ya been?" I felt nauseous, which is a troubling development when standing in a lunch line, and so proceeded with a brief overview: Dec 22nd... cancer, chemo, surgery, tumor gone, rejoicing YAY!!! Thankfully that offering was accepted without further probing or even attempts at some kind of affect and I could at least get my lunch and sit down at the table. I could not possibly get away with only one recounting of the last three months in this hour long lunch and, sure enough, gave one more, slightly more detailed account over my last bit of salad. I left this lunch with a feeling of exhaustion that extends beyond the post-lunch "carb-coma" which, to be frank, I haven't experienced since early November when I had the hair-brained idea of trying to lose a quarter of my body weight. I was wearied simply by having to recount the nightmare, by having to be reminded of the scars that I bear as a cancer parent.

I often find myself wondering when reality will really hit, when the weight of this past quarter will strike me. To prepare for the eventual violent arrival of reality I think I have constructed for myself a bit of a protective shell. The shell is imperfect of course but should at least take some of the brunt when the unwanted visitor arrives. As I have had to learn however, every anesthetic bears some side-effects. This one has at least two. The first is simply that it seems to dim life as if the world existed in shades of blue and grey the way it does right before the sun pops over the horizon in the morning. The second is related to the first, it traps me inside. That is the real problem, that in the hope that shock of reality with be absorbed by this shell I have submitted myself to staying incased within it. This of course leads to side-effect number one since everything that you experience has to come through the shell which conveniently filters out all sensory extremes and leaves you eating gruel and looking at fog (I could also say smelling fertilizer but I think that is simply a side-effect of living in the Valley in the spring).

Now to the real rub, when new people ask me how I've been reality strikes. Oh sure, it doesn't come in a full out assault... that would be welcome since then it would expend its energy and move one, crushing my shell but leaving me bruised at worst. Instead it gives glancing blows, minor shots that don't shatter the shell but instead chip and crack it. The cracks that come allow some light through, little teases and hints of something better, but also the terror of knowing that when reality comes I will have less to absorb its kinetic fury. The light that does come in though does give me some clarity. I am realizing that the supposed benefit of the shell isn't worth its cost; a muted life is a miserable one. I'm also seeing though that the weight of reality might not strike me like a wrecking ball at all. Instead perhaps it has simply been sitting on my shoulders, bearing down with a weight that makes every step a labor.

Perhaps then the simplest answer to the question, "how are ya?" is one word:

Tired

Tired isn't an altogether negative thing. There are certainly times in which being tired is a detriment but sometimes, as long as you feel good about your labor, being weary brings with it a satisfaction. Up until the last couple of days I think that is something that I have been missing, satisfaction with my labors. I want to feel that I have struggled well... not perfect mind you, I'm not that narcissistic... at least not today... but well. The last couple of days I feel like I have begun to come out of the shell a little bit, poking away at it from the inside and reaching my hand out through the holes. As I have begun the steps to leave the shell I have found what I was hoping for, nail-scarred hands to pull me out. My shell had kept me from experiencing life and from relationship with the One who is present in the midst of our sufferings because of His own. I suppose it is fitting then that I am coming out just in time to see Him pass by on that donkey on the way into the royal city. In a few days I will take up my palm branch and sing Hosanna, I will enter into the ambivalence of a week that commemorates rejection and betrayal, and then next week I will celebrate the Resurrection, the defeat of death and evil and sin... and cancer. I will still be tired but, Lord willing, I won't be holed up in a self-made prison thinking to avoid pain and so avoiding life. Instead I will be walking and the sound that I hear when I walk won't just be the sound of my weariness but the soft sound of sandaled feet leading me to live in the strange world in which, because of His resurrection, now contains both grief and hope, triumph and pain.

Awareness

2010-03-19T14:53:00.000-04:00

Today I read a blogpost from a lady that has become my friend through the blogging world. Another friend clued me into her blog when Andrew was midway through this treatments. This blog friend has a son that has gone through neuroblastoma also and has had similiar treatments and diagnosis. As I read her blog today, it opened my eyes a little wider to the cancer world. I have always heard about St. Jude's hospital or been surrounded by pink during "breast cancer awareness" month. I pass ribbons in the store aisles and see logos on bumper stickers. Now when I see those same things I glance a little longer. I read a little closer. Why? Because I have been touched personally by cancer. It was always my greatest fear...what if I get cancer? What if someone I love gets cancer? Will I survive? Well, we have been touched by it and we have made it to the other side. But as I read this blog post I realized even more how ugly the cancer world, and especially the pediatric cancer world it. How blessed we are to have our son home, in our arms, well...alive. As I transition out of "trauma mode" I long to begin to make a difference in this scary world. To comfort other hurting families. To raise awareness...I mean serious awareness of the signs of cancers and how to detect them early on. I want to give back to organizations that support cancer research so kids like my own have a chance at life. And I want others to jump on this band wagon. My husband is a pastor in our church in our local city and I long to find other families in that city that wrestle with cancer. Families that not only need physical hope of healing, but hope of a God that loves them and can offer them more than they will ever find anywhere else. And my voice is a little louder because of our experience. I would love for you to take a minute and read my friend's blog quote. Read and thank God again for us because of the mercy shown to Andrew. Read and see how you can become more aware of cancer signs and how to help others. This isn't meant to be a depressing or alarming email to make you panic. It is meant to really rise awareness of the brokenness that goes on with families.....families like you and me.

"Today I received a solicitation from St Jude's hospital in the mail. You know the ones...you get a great sheet of return address labels along with a plea for a donation? The lady of a few years ago would have taken those labels and thrown away the rest. Today I actually read it. I know St. Jude is very involved with pediatric cancer treatment and research. They included a chart that compared 5-year survival rates for several different types of pediatric cancer. The chart compared survival rates from 1962 to present day. It was shocking to see how low survival rates were for children only 50 years ago...as low as 4%.

The encouraging news was just how much survival rates have increased in the last 5 decades. For example Acute Lymphoblastic Leukemia had a 5-year survival rate of only 4% in 1962 and now...the survival rate is 94%!!! Earlier detection, better screening tests, and improved treatment options have all impacted survival rates in amazing ways! Of the 10 types of childhood cancer listed, 6 of them have survival rates of greater than 85%.

The bad news is that Neuroblastoma had the lowest survival rate of all the types of cancer listed. The 5 year survival rate for children with Neuroblastoma is a dreadful 55%. I was shocked to see how much lower the survival rate was for NB than Leukemia, Lymphoma, and other cancers of the eye, kidneys, and bone. I have to say that I instantly thought of 10 or so children I know of with NB, and yes, only about half of them are still alive. This statistic is scary...

I think why this statistic is so shocking to me is because Neuroblastoma is a relatively new word in my vocabulary. I bet if I was to ask you how many of you had heard of NB before my son, many of you would join me in saying you hadn't ever heard that word. And this is precisely why I need to continue to speak out about this disease...raise awareness...educate parents about warning signs...raise research money...and support families fighting this disease. I understand that research money for NB is low because kids are diagnosed with other types of cancer in greater numbers, but that certainly doesn't minimize the impact that this disease has on the 700 children who are diagnosed each year. I need to keep talking about it."

Thank you dear friends and family for taking the time to read our posts. Thank you for continuing to pray for our family that continues to need daily strength and energy. Thank you for becoming just a little more aware of the battle that many people fight with cancer and taking time to think about your health. We love you all dearly.

Forgeting What is Behind

2010-03-17T13:59:00.000-04:00

Spring has begun here in the Valley, thank goodness. We had a lot of cold days and snow this winter and as much as it was fun at times, I am ready for Spring. I am ready for warmer temperatures, longer days, and flowers to bloom. I am ready for no coats to put on 4 young kids just to run to the grocery store and playtime outside to get all the energy out. I am ready to plant gardens, change the mailbox flag, and just be outside more. Spring is a time of growth, beauty, and renewel from the winter. I guess that is how I am feeling personally too.
Our winter was cold and dark at times. It held memories of a rushed Christmas because of the hospital return and days of just seeming to hold my breath. The nights came quickly and I just never felt like I could get warm. The news of cancer came right around the first day of winter. The darkness and fear was real and I never thought we would make it to see the Spring. The paths were covered in snow, or uncertainty with treatments and prognosis. It was a very hard winter. One that our family will never forget.
But, now it is almost Spring. As the days began to get longer and lighter, so did our prognosis. We went from an unknown diagnosis, to 8 rounds of chemo, to then only needing 4 rounds of chemo, to then surprisingly only needing 2 rounds of chemo and surgery. Grace poured on our family like March rains and we began to see the end of the road. The steps turned from deep footprints sinking into the snow to muddy prints just walking through puddles. The hard, cold ground, or news, softened and the growth of flower leaves, or hopefulness began to bloom. Andrew is healing nicely from his surgery. He loves being outside, flying his Buzz Lightyear on his swing and throwing his frisbee in his He-Man stance. I have watched a little boy become a hero in my eyes through the winter and now he has the ability to fly into the Spring. His hugs are precious to me, like water on the dry soil helping my flower to grow. Beauty is coming out of the ashes or in this case the dormant ground. We continue to be blessed by news that we have encouraged another family or surprise gift certificates to Dairy Queen in the mail just to go out for Blizzards. I am amazed that we made it and we continue to grow taller and stronger. Our roots have deepened even more and we have more confidence in the Gardener.
I think that the Spring will bring healing to us. Andrew will heal physically. The girls will heal from their fears of us leaving and sickness that pounds at the door. Rick and I will continue to process and retell this story to ourselves and discover new truths about God that we have learned. Our hearts will be nourished with watching our miracle boy play and grow and seeing that this scary winter didn't take him from us. Our marriage will deepen as we have a weekend away together this weekend and celebrate 10 years of marriage together in May. It is still overwhelming to talk about our winter at times. The heaviness still haunts us and we sink when we meet others that didn't know about it and we have to start all over with the tale. That is the funny part about Spring. It is a new season, but what happened in Spring is dependent on what happened in the seasons previous. If you don't plant the bulbs in the fall, then you will not have daffadils in the Spring. The same is true with our story. Our winter has shaped us and changed us like nothing else. We will walk a little more careful with some of our steps because we are scared. We will see things a little differently then we did last Spring. But we know that our lives are in the hand of the God who creates. The God who walks through the barren winters and offers the promise of a spring. The God whose heart longs to surprise His children with beautiful blossoms and smells in the Spring, but calls them to be patient and trust through the winter. We have learned more of His faithfulness and how He is the same in all seasons of the earth and all seasons in our lives.

A Mosaic

2010-03-12T12:47:00.000-05:00

A few hours ago I brought Andrew home from a doctor's appointment. This was a deja vu for me because it was the same doctor that had diagnosed Andrew 3 months ago. We were in the same office and we sat in the same chairs. But today was a different day. Today Dr. M got to come in and bring us good news. He got to just do a check up on Andrew's incision and check his vitals. It was another milestone in Andrew's healing. Our first doctor's check after cancer came back fine. Andrew had spent the morning asking us all kinds of questions about this visit...will I get a shot? Can I play in the playroom? Will I see Ms. Lisa (his hospital preschool teacher)? Will I get my tubies back? All questions that run through his little mind because of his experience at the hospital. All questions that a two year old should never have to ask. But, he does, and so it was a relief to him to be walking back into our normal pediatrian's office. A relief for both him and his mom.
Andrew has been doing great since we got home last week. He has been up and moving all around. He played with his grandparents, his Toy Story toys, went to music class. the library, and played outside on his swingset. He is sleeping great and doing well. We got slammed with the stomach bug in our house (even mom was down for the count), but other than that things are on the up. Andrew only has one little sterile strip covering his cuts and his incision is healing nicely. He will have a great war story to tell his friends when he gets older. So life as we know it has returned to "normal.'
And me...well I am still rejoicing in the miracle that has happened. I am still learning new things each day about the Lord, myself, and the new identity I take on now as a "recovering cancer mom." A friend sent me a note last week that had a fantastic quote in it. It speaks to Rick's blog that he wrote a while ago and how I feel today. It is from a man named Ken Gire and it says, "When suffering shatters the carefully kept vase that is our lives, God stoops to pick up the pieces. But, He doesn't put them back together as a restoration project patterned after our former selves. Instead, He sifts through the rubble and selects some of the shards as raw material for another project- a mosaic that tells the story of redemption." This is a beautiful quote that tells how I will never be the same, but my story has been changed drastically by the last few months. My heart has become a little softer. My love for my husband, children, and others has grown a litle more. And my testimony for the Great God in Heaven has increased even more. While sitting at the stoplight today on the way to Andrew's doctor, I realized that although his treatments and hospital stays may be over, our story of redemption continues. We still have more to teach others. We still have ways to encourage people that are hurting, in fact, we may have more voice to speak into some areas of darkness because we have gone down a darker road. We still struggle, so we can still show others how to walk the Christian life as imperfect sojourners. And I still worship the same God that began this scary journey with me 3 months ago. I may have questioned His goodness or love for me, but now being on the flip side I can see that His hand was always with us providing EVERYTHING we needed each day. The "pretty pieces" of my organized mosaic or life did get shattered by cancer. I long for control and order each day, but I am seeing that the vase that God is making now is a little bigger and more colorful. A vase (or life) that sees the hearts of others more and focuses less on the pieces of the container.

Home

2010-03-06T17:02:00.000-05:00

We marched into the parking deck with bags in hand and boy in arms. After a few seconds of creative stuffing to make sure balloons the size of farm animals didn't block our view or simply become a nuisance, we strapped Andrew into his car seat, flopped down into the seats of our borrowed car, turned the key, and then wept. Two and a half months ago when we first drove into that parking deck our cheeks were streamed with tears and today, as we drove away from it they were likewise streamed though for different reasons. These tears were like the sudden bursting of a dam that had been holding back a torrent of hope and a deluge of fear. From the minute we were told that we were going home today there was always the question "this can't really be it can it?" But then, when the nurses were far behind, the car started, and our son playing in his car seat the dam broke and the flood began.

It wasn't a flood of pain, though there was pain present (I'm not sure anything associated with this will ever be completely devoid of pain). This was a flood of relief, a flood of thankfulness, a flood of joy mixed with the sorrow that this ever had to be in the first place. I think maybe there is more to that last one than I would have thought. This is been a journey that has seemed to travel at such a frantic pace that the cost of it is still several miles behind us trying to catch up. I had a friend who ran Cross Country in High School and he used to talk about how the last little bit he would speed up, cross the finish line, and throw up in the bushes. I have little doubt that the analogy will hold with us... though hopefully with less physical trauma. You push yourself and push yourself to get through, to make it to the next treatment, to hold your breath till the next report. In the hospital all of your schedule is between doctor's visits or doses of medication. Finally, when you leave those doors, you look around wondering what exactly just happened.

In this case I'll tell you what just happened. My son entered the hospital with a very large tumor on the right side of his chest and a central line on the front. Today, 95% of that tumor is gone with only two small pieces remaining and the central line is gone as well. On the other hand, my son walked into the hospital... even ran at points, and had to be carried out. He is still in a good bit of pain and doesn't have a whole lot of desire to push through it. That seems to be the way of things here while the Lord tarries. Healing comes, but at a cost. It seems to be the ubiquitous sacrament of the fallen world that even in our triumphs we don't come through unscathed. That makes me long for something more, a day when our bodies don't rebel against us anymore, a day when our brokenness is replaced with a fullness that could never come from even the best of medicines. Until that day though, it is good and right to rejoice in the little victories; the little places where Jesus' victory over death suddenly bursts onto the scene and levies its power over the brokenness in our own bodies.

All that said I would ask you tonight to rejoice with us. Tomorrow, in your various churches (if you attend) would you remember us, and give thanks to the One who healed our boy. We are home.

Hip Hip Hooray

2010-03-05T09:05:00.001-05:00

Our doctor and surgeon, Dr. Rodgers, came in last night around 5pm, checked Andrew out, looked at his chest tube container, and announced that he thought we might go home "tomorrow" (today). It seems as if the healing is coming quicker than we thought and Andrew is doing well internally. The doctors did a chest x-ray this morning and will look at that first. If all looks well with his lungs then they will take the chest tube out and monitor him this morning. They will be looking for pain tolerance, fluid intake apart from the IV, and overall disposition of Andrew. If all looks good then the next step is to remove ALL his tubes including his central line that he had placed in at the beginning of the diagnosis!!! We think after all this we will request one more night of monitoring just to make sure everything is okay, but then we will probably go home tomorrow with a tumor free (for the most part) and tube free kid for the first time in three months. When the news came it was a little overwhelming how fast things were going to happen given that everything else has been so slow, but at the same time I am so thankful. My little man is gaining his strength and personality back and we will get to take him home!
This time in the hospital has been a strange "rest" for me. I don't mean physically as I haven't slept real well with the nurses coming in, Andrew's cries in the night, and the blow up mattress on the cold floor. Nor do I mean because this has been an easy time being here. We have had to regulate Andrew's pain pretty closely and haven't been able to hold him since before the surgery. Also, we haven't been able to hug our other three kids and reassure then that everything is okay (although Nanny and Papa have done an incredible job). I guess it has been a strange rest of just relying on God, others, and the amazing staff here at the hospital. The stress of the home and raising 4 kids all at once has been taken since we have been here so I have been able to focus completely on my sweet little boy. I have been able to pamper him with popsicles, read numerous Spot and dinosaur books to him, and play with all his new Toy Story toys. I have been able to read, journal, and take a nap also. On top of that I have been able to just bask in the care of our friends and family. I have enjoyed the many calls that have come in to see how we are, the company of friends in this hospital room, and even the joy of seeing the life like balloons that Andrew has received that dance around and make him smile. When I have called home to make sure the other kiddos are okay, I have received the sweet voices of my parents sharing about their day of stories and park visits. The girls have gone to sleep without trouble and told me how much fun they are having with Nanny and Papa. My parents scoop my kids up, love on them, and make their schedules as normal as possible. That sure helps a mama's heart while I am away. I am meeting new friends, some that have journeyed much harder roads than us, but all of them reminding us of their love and care for our family even at the tail end of this journey.
I sat last night by myself in the room watching Andrew sleep. I began to retell this story of Andrew's cancer to myself. I thought about the simple cough that began all this mess and the first day we found out. I found myself wanting to just sit in the weight of all this news. Not because I enjoy pain, but because I kind of wanted to remember so I could see how far God has brought us, as well as the amazing MERCY that has been shown to us. The story is overwhelming. I found myself crying over the fears, the darkness, and the joys. Our family has strengthened and grown in so many ways through this time. I allowed myself to just sit in some pain and some details that I have wanted to run from and never think about again. I could remember those feelings that went along with different doctors' words. I could remember how I never thought I could make it one more day and how in the world would we survive this case? But, here we are on the flip side. We still have scans and tests for the next two years, but we are DONE with this cancer journey(Lord willing). We are done 7 months sooner than we had originally expected. We are done with fewer chemos, fewer shots, fewer hospital returns, and fewer heartaches. Our God has saved us from what might have destroyed us.

Psalm 34.17-18

The righteous cry out, and the LORD hears them;

he delivers them from all their troubles.

The LORD is close to the brokenhearted

and saves those who are crushed in spirit.

New Questions

2010-03-03T22:39:00.000-05:00

What would I trade? That is the question that bounces around my head as I write this. Today, as Jess and I have spent the day alternating between trying to comfort a child in pretty severe pain and visiting with those who gave of their time to sit with us (thank you to all of you) this question in several forms has passed through our minds. Since Andrew was diagnosed with cancer two and a half months ago we have been the recipients of a good deal of grace. We have been blessed by notes and cards sent faithfully by people, many of whom we've never met. We have received gifts both for the kids and for us that we couldn't have possibly anticipated. We have been served in ways that we wouldn't have thought people would actually volunteer to do. At times we both have struggled with this for various reasons, not the least of which being the feelings of guilt associated with receiving from others and wondering at our "worthiness" at such gifts. As we've thought about this today one thing continually comes to mind, we'd give it all back and more to make December 22, 2009 go away. That was the day, of course, that we heard of the diagnosis. Since then we have been on a whirlwind tour of the land of chaotic fallenness... and the landscape has not been worth the visit. At the end of the day... or the week in this case... our story will probably end happily, but that doesn't change the fact of the road that we travelled.

Not that I would ever compare our story to his, but I wonder if Job ever felt guilty about what happened after God showed up in the midst of his suffering. You probably know the story but Job lost everything, his family, his wealth, his health, but after God spoke with him and Job found himself in a place of repentance and submission God blessed him. When I say bless I don't mean he gave him a general feeling of well being. Job had more children and more wealth. I wonder if his friends, probably still a little upset at how they were rebuked by God for their treatment of Job when they thought they were upholding God's justice, ever brought up to Job how he seemed to make out rather well from the whole deal. If so I think I could venture a guess at Job's answer, "Take the blessing, I want my kids back."

I think this is something that those who haven't gone through something like this could easily struggle to grasp. Truly, it is something that we are just now grasping even though we are going through it. It is similar, I think, to the feelings of those who lose a child and then get pregnant soon after. Well meaning friends and family may be confused as to why they are still upset even after they have another child. The reason you see is that they can never have the child they lost back again. The new blessing doesn't "make up" for the loss. The new child doesn't take the place of the one lost, he/she never could; loss is simply that... loss.

For us, as we hear good news and see good results, we cannot help but know that loss is still loss. It isn't that we don't rejoice, I cannot wait to let out a mighty shout when I leave this place with my son, but even that rejoicing doesn't somehow erase everything that has come before it. The shout of that day will never somehow make the shouts of despair and terror that sprang from my throat as we drove to the hospital on the 22nd somehow vanish. In the same way the blessings that have been poured out on us, physically, materially, and emotionally (by many of you) have been wonderful but if I had to choose I would gladly give them all back; to take away the reality of this cancer in our lives. They can never make up for what we have experienced... what Andrew has experienced. I hope that doesn't sound like ingratitude because it isn't, I don't know how to begin to thank those that seem to tirelessly give of themselves to us. I suppose it is just a recognition of what these blessings are... and what they aren't.

A wise friend reminded me today that God doesn't just wipe away suffering but that He actually redeems it. I don't doubt this. When Jesus was raised from the dead he came to His disciples with the wounds on His hands, feet, and side as palpable evidences of his identity. Interestingly though these wounds now are badges for Him and a surety for us that His suffering was more than just a vile injustice but actually secured redemption for us. At the same time the wounds remained; the identity of Jesus is indelibly bound to a cross. Perhaps one day we may recognize such a transformation when we look at Andrew's scars of even our own, though ours are harder to see. The reality is that this is not that day. One day my perspective may be better but it isn't today. Today it just hurts and we'd give all the gifts, all the service, all the care, even all the good news, to have never hurt like this in the first place.

I hope this makes sense. I write this with a dual fear. On the one hand I am afraid that some might feel offended that we are ungrateful. On the other hand I am afraid that some might think that we no longer need support. Both fears are rooted in the one that seems to nag at me like a swarm of gnats on a summer day, the fear of abandonment. That is a dramatic way of saying that I'm afraid that people will think that since Andrew's tumor has been removed that we no longer need support and should feel better... and therefore withdraw. The other side is the fear that some will look at how this has turned out and think that it wasn't that big of a deal and that the support we have received is more than enough... and therefore withdraw.

I guess, when it comes down to it, this entire post (which is getting rather long at this point) is one big plea. It is a plea to not forget about us. We are only now beginning to grasp how vast this experience really is and we're afraid... I'm afraid... that by the time it really hits us the urgency will have gone away and life for everyone else will have moved on. This has only shown us even more how much we need others to help us stand. Thank you for all that you've done; I don't know where we would be without it. Please don't be surprised though when a year from now we still cry at odd times or find Christmas less cheery than normal; we are simply still bearing the weight of wounds that may have faded but can never be forgotten.

An Update For Those Fighting Sleep

2010-03-02T22:38:00.000-05:00

I know there have been a flurry of questions regarding us today. Here is the skinny. We arrived here at 8am. I carried Andrew into the O.R. at 11:45. At 3:45 we went back to the Post-Anesthesia Care Unit. At 8:30pm we arrived in our room... finally.

The surgery was a success. 90%-95% of Andrew's tumor was removed. The tumor that was left was the small piece that intruded the spinal canal and a small piece that was intruding the muscle tissue in the chest wall. Though it sounds strange, neuroblastoma does not all have to be removed. As long as over 50% of the tumor is removed the rest will shrivel up on its own. Apparently there was some tumor that was invading a rib as one broken while they were spreading them slightly for the surgery. The hypothesis is that the tumor softened the rib at that spot... not major news as far as the cancer goes, but it is one more thing that has to heal. This was a very invasive surgery but Andrew has come through it well. Truly the worst is over and recovery will begin tomorrow.

I am tired; probably more tired than I can remember being. Being back here, carrying my boy into the operating room and leaving him in the hands of strangers, waiting for news in a busy lobby and feeling my heart jump every time the phone rings, listening to a doctor nonchalantly say that they broke a rib as if they had only bumped his knee, hearing the bubbling of the vacuum that is running Andrew's chest tube; all of it just wears on me. I have underestimated this, as I have underestimated many things in this process, all dealing with me I think. This is a big deal... and it will always be a big deal. I am a cancer parent. i have heard those words most dread but never hear. I have asked the questions most wonder but never have to ask. I have cried those tears that I hope you all will never have to cry, they are bitter and cold. I have pleaded in a way that few can probably understand... and I am grateful for that. I feel as if I've been branded and even though our experience is, Lord willing, drawing to a close, I cannot remove the brand. I've tried and I've failed and I think I'm going to stop trying. I am learning to be ok with the brand, to embrace it as part of, not only Andrew's story, but my own. It is a testimony to my own fear and pride that I would seek to dissociate myself from this experience; afraid that others might wonder why I am not rejoicing more or moving on since things have been so "easy" and prideful that this won't debilitate me. I am and it has... though perhaps not that anyone can see.

I will try to write more tomorrow. Words come with difficulty when my mind is so slow, like trying to put together a 1000 piece puzzle with no picture to look at. We are tired, yet at the same time we have our boy. That body of death, that mass of rebellion has been removed from his body. It did not go easily, it has left wounds both deep and shallow. All of them will take time to heal; but then no brokenness is healed in a day. At times we may even be tempted to think that the wounds that he has now, the incision, the chest tube, the broken rib, the irritated lung, the sore chest muscles, that these weren't worth it. But then, these wounds will heal... cancer doesn't. Without drastic intervention the rebellion in those cells will win, the body cannot fight it alone. The scars he will take away from this will be a reminder of a foiled enemy, a serious enemy, but a foiled one nonetheless. There's a metaphor there for those with ears to hear I think.

Thank you for your prayers and your support. We need it... always.

Resilence

2010-03-01T15:28:00.000-05:00

I just received the call from the hospital. We have to check into the clinic tomorrow morning at 8am. It is a little earlier than we had anticipated, but not a big deal. It makes me rearrange a few things like how Becca will get to music class and making sure Madi is ready for school so Nanny and Papa can get her out the door, but nothing changes majorly with that time. We will check in and they will check his blood and then prep him for surgery. The nurse thinks it will be about a 3 hour surgery, but they can't be sure depending on how things go. This is the big day we have been waiting for. The day when our cancer battle could end. The day that we begin another round in the hospital eating cheese pizza from the cafeteria and having "date nights" in the hall ways while Andrew sleeps. This is also the week where we pray Andrew heals quickly from this surgery...that his chest tube comes out quickly and the pain from the incision is minimal. Today was a beautiful day outside so we all took a walk this morning. I watched as Andrew jumped over snow piles and ran down the street without a care in the world. Once again everything seems so normal and all will change tomorrow after this surgery. I am trying to keep my eyes on the long range picture, but knowing how uncomfortable he will be in 24 hours makes it hard on my heart. The end is coming soon though and for that I am thankful.
I do have a great story to share. This weekend I got some great time to scrapbook with some friends. I was able to complete my 2009 family album. The last few pictures that I came to were ones of Andrew in the hospital for his first surgery and biopsy. I saw all the machines and tubes and the room that held us hostage for so many long nights. It took my breath away and reminded me of the road we have been walking for the last 3 months. It was a very overwhelming experience. I put the pictures in my album in a very plain way, but in a way that will help us remember this story. When I pulled out my albums to show my family on Sunday afternoon, the kids cuddled up next to Rick and I to look at the memories we have all made. We laughed and chatted through many of our stories. When we came to the last few pages the kids began asking questions about the hospital and Andrew's time there. From tthe questions they asked, especially Andrew, it seems like all they remember are the "fun" things....like clowns coming into our rooms, the playroom, and preschool. Andrew said he didn't remember much of what those other pictures showed. I know some of those experiences have shaped our kids, but I was shown the resilence of my three young children. Not one of them seemed scared or traumatized by the experience as I had once feared. They were memories that we could talk about and share together, but the Lord has once again reminded me of His protection of our hearts.
Please pray for that again during this next hospital time. Pray for the surgeon's hand and the many nurses that will attend to Andrew. Pray the surgery goes smoothly and Dr. Rodgers can remove ALL of that tumor. Please pray for Rick and I as we wait for the news and for our marriage through this next trial. Please pray for simple things like a private room for Andrew for the week (it is not guaranteed) and sweet nurses to care for us. Lastly, please pray for a quick recovery for Andrew. He could potentially be in a lot of pain with the incision and chest tube. Pray that the medications will help and that his body would heal quickly. We thank you for your love, support, and prayers as we come to the (hopefully) last leg of this marathon. May we all come to the finish lines with our heads held high.

My Isaac

2010-02-25T15:46:00.000-05:00

We met wtih the surgeon this morning. He is a fantastic, older man. He knows his stuff and is wonderful with Andrew. Andrew warmed right up to him and included him in his "Toy Story" imaginative play. As Andrew played by his side, Dr. Rodgers proceeded to fill Rick and I in on the surgery details. We will check Andrew in on Tuesday (we will not know the time until Monday). Dr. Rodgers will cut probably a 6 inch cut on his side. He will spread his ribs and move muscle tissue around in order to find the beast that hides within. We thought originally this surgery would be orthoscopic, but the size of the tumor and the way it sits doesn't seem to lend itself to that type of surgery. Andrew will have another chest tube put in for healing and we will be in the hospital for at least 5 days. But, after this, our cancer battle will be pretty much done. This is great news. Rick looked at me smiling in the office and I proceeded to say, "This surgery is going to be awful." Confused, Rick asked how in the world I had gotten that from what the doctor said. This procedure is clear cut, not very scarring, and successful at removing the tumor. Sure he will be sore, but if this is all he really suffers from from cancer isn't this good news? I think for me it is just reminding me more of my letting go.
I am having to let go of my son to the hands of more doctors. He will be taken from us for at least 3 hours and cut into. He will be monitored and carefully watched as they insert things into his tiny body. This doctor has done this over and over, but I still have to let Andrew go as well as the outcome. I am not fearing for his life as Abraham in the Bible feared for his son Isaac's, but it still is weighty on a mother's heart. Not many two year olds have to go through this. The comforting thoughts for me come more from the greater power that holds Andrew's hand and his body than the surgeon. His God and mine will be with him every minute we are apart. God will be the one guiding the surgeon's hand and bringing Andrew through the surgery. As I have grown closer to this God, I am believing more that He can be trusted. I am not sure exactly how this day will go, but I do know I find peace in this great fact.
Besides His Word, God also chose to show me His love in three very tangible ways today. As my mind was racing on the way home from the hospital (we were there 1 1/2 longer than we thought...surprise, surprise!!), I then began thinking of my other kids. They needed to eat, drink, use the bathroom, take naps, and just feel settled. We were way past their normal routine hours and I of course began to worry about this schedule. On the way home, I called my dear friend who lives right behind Madi's school and asked her if she would mind picking Madi up since I was running way behind. A dear friend from church had Luke and Becca and she took the liberty of feeding them lunch and having them ready for me as I pulled in the driveway. As I drove from her house to my friend's to pick up Madi I was still frazzled from the day. I hadn't eaten and I still had over 45 minutes ahead of me with all my tired, some hungry children. I pulled up at my friend's house and she opened the door for my mini daycare of children, hugged me in her arms and fed us. She entertained my kids, put shoes back on, and helped us settle back in the car for our journey home. She didn't ask anything of us. We interrupted her schedule and made a mess in her home and she just loved us...well. My kids had a mini playdate with her daughter and were much happier after having bellies full, bladders emptied, and a calmer, well fed mother. Then as I entered my house with bundles of kids' things in my arms, I hit the answering machine button only to hear another lovely voice on the message. It was from a lady I have only seen once. She has committed to bringing at least one meal a month to our family, but has been bringing one to freeze each time she comes. She writes me notes each week reminding me she is praying specifically for me and brings goodies for my kids to create with. Today she left a message just saying she was thinking of me and had been praying for my heart today in her quiet time. She just had a peace and love about her voice as she spoke. Again, I have never given this lady anything. She loves me just because she has chosen to and asks nothing in return. Amazing grace!! The third tangible evidence of God today was an email that I got right before I finally blopped my fourth little on in his crib. It was from a new friend in the church. We have really only gotten together once with our families before this whole cancer thing hit. However, she has called, cleaned my house, driven me to the hospital, offered her children's video games to us and just checked up on me. In the email she reminded me of the victories are being won in our family right now. The small accomplishments that we are achieving and the lifelong lessons we are teaching our children through this time. At the end, she said if I were in the military I would receive a medal for the battle I am fighting now and the honor it is bringing to my family. Those words just spoke to my weary heart. I don't need to be noticed in all this, but man those words really made me feel special. They reminded me that all this is worth it and God sees each act Rick and I are doing for our kids. These four ladies today gave of themselves, their time, their schedules and they loved me and my family well. They asked nothing in return, as with some I offered to at least clean up my children's messes. But they served us and reminded me especially that God loves to show us kindness. My heart has been captivated once again by His mercy and strength.
Please be praying for our family. Pray for our weekend...that we would have fun and just enjoy life each moment. Please pray for this surgery on Tuesday. Pray for the surgeon's hand and that he can get even the entire tumor out. Pray for Andrew's healing and that it won't be a long healing process. Also, please pray for our family...the girls and their transition while we are away, my parents and their travel up this weekend, and our time in the hospital. Love to you all.

Treasures in Jars of Clay

2010-02-24T14:41:00.000-05:00

Over the past few months, many of you have commented on Rick and I's faith. You have wondered how we keep it up and where our energy comes from to deal with cancer, raise 4 kids, maintain a healthy marriage, and just live day to day. As I was reading Scripture today, my answer came and I wanted to share it with you all. It is found in 2 Corinthians 4:7-12;16-18
It says, "But we have this treasure in jars of clay to show that this all surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body. So then, death is at work in us, but life is at work in you......Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.:
The trials have come to our family. Some of them have felt like death and have challenged all of our being. But we have not been destroyed. Not only has God had mercy on Andrew's physical body, but He has also had mercy on our emotional, spiritual, and mental bodies. We have a hope that will not disappoint and that will continue to lead us day by day. I am more confident of these truths than I have ever been in my life.

Catching My Breath

2010-02-23T14:09:00.001-05:00

If any of you have ever run a sprint, you know what it is like to be out of breath. You pour your energy into the run in such a quick amount of time and when you stop it takes a little while to catch your breath. I think that is how I am feeling this week. When Andrew was diagnosed in December it was a quick sprint with his cancer. We raced to the doctor, the hospital, the biopsy, the meetings, the tests, the chemos, and the scans. We accomplished a lot in a very little amount of time. With cancer that is the way you have to do it. We were not sure how aggressive it was so we had to have all the tests run and begin the treatment regardless. It was a whirlwind feeling at home.
Well, the "results" have come back over the past few weeks and the diagnosis is a pretty good one. If Andrew can have the "best" malignant tumor, this is the kind to have. He has already finished his two required rounds of chemo and will now face surgery, hopefully the last stretch of his sprint. We will meet with our surgeon on Thursday to have his vitals checked and look him over to make sure he is well enough to be operated on on Tuesday March 2nd. The surgeon will chat with Rick and I about the procedure and what recovery will look like. And Lord willing, this will be the last form of treatment on this cancer beast except for scans for the next two years. This truly is God's mercy to our family.
As I have begun preparing my heart, as well as reflecting on God's faithfulness to me personally, I feel like I am trying to catch my breath. My life changed so quickly with the announcement of cancer in my two year old. Each scan brings worry and hopefulness and each doctor's conversation raises my blood pressure just a little. I have loved seeing God surprise us with grace as each step has carried us to the next and brought us to even better news. However, my heart has a hard time just resting in the goodness of His love. I have been blessed to see Andrew have such great health and continue doing all his normal activities and more. I have been amazed at my love that has grown for my husband and each child through this trial. I have been thankful for the Scripture that whispers love and hope into my ear each day. And I have been blessed with ministry opportunities outside of the home that before all this craziness brought such joy to my heart. With all these wonderful things going on to remind me that God cares for me, I still keep looking behind me to see what is coming up next. I think, "I can't let down my guard completely and rest in all this. What if I need to be prepared for something bigger." This fear is shown in my obsessions to organize my closets, purge all I don't need any more, or plan as much as I can a day in advance. I can spend my time just thinking, "what if I won't have time to do this chore or make this phone call" instead of just blopping on the floor and playing with my kids. Some of you may be saying, "haven't you learned that each day is precious and the work can wait?" To that I say, "Yes, but I am still weak and scared." I am still doubting in each step being illuminated for me to walk on. I feel like I am just trying to take deep breathes in order to be able to finish this next sprint with my head held high.
A great verse that I read today really spoke to my heart. Lamentations 3:22-23 says," Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." These verses are jam packed with great promises and reminders for us pilgrims in our journey, but what spoke to me was that I will not be consumed or even destroyed. God's love is great. Far greater than this little sprint in my life. Far greater than any doubt I have or report I may be given. He will hold me up through this. He continues to have compassion on myself and my family. It is evident every morning, as He promises. We have not arrived in any means, but I can honestly say that through this sprint called cancer that I have been running, I am truly beginning to know my Jesus and His deep, deep love for me, His daughter. Praise God!

Update

2010-02-19T15:36:00.000-05:00

We just wanted to update you on the next step. We received a call from the surgeon's office today. We will be meeting with the surgery team next Thursday (Feb 25th) to talk about details and then the official surgery is scheduled for March 2nd. We will know more after Thursday's meeting. Stay tuned!

Covered in Hair

2010-02-18T15:00:00.000-05:00

Before I began writing this blog post, I had to reread my husband's last blog. You see he is a fantastic writer if you all didn't know it by now. The way he uses words to communicate things so clearly is amazing to me. He can take a subject like theology or even now biology that can sound so daunting and unclear and make even the simplest person like myself understand the subject entirely. So, as I struggled once again to believe that Andrew's news is good news, I reread his clear words that give me comfort.
As a mom the first thing you want to do for your children when they are sick is help them to feel better. Bandage the boo-boos, ease the sore throat, or comfort the belly ache. You will do anything from feeding them popsicles all day to making couch beds with Sesame Street sheets in your living room. You hate to see them suffer. Well, as you can imagine when we first heard the words tumor with Andrew, panic gripped me. How was I going to help this little boy through this? Chemo....for a two year old? Sickness, mouth sores, pain, aches, shots, medicines?? How would I help? I saw from the beginning that most of what I would be doing was just holding him. He normally wants mommy when he is upset, so when we began with surgery and treatments I would just sit and hold him. As we got into round two of chemo I loaded his bags down with all the things we would need to make him comfortable.....Thomas the train pj's, dinosaurs to play with, books to read, and 25 popsicles to have him eat while he ate chemo because we were told that might help prevent mouth sores. I was on top of his needs the entire time in the hospital. I wanted him to be comfortable. The same has been true as we came back home. I just waited for the bottom to drop and him to suffer. But, as Rick's email said, we have been shown great mercy. Andrew has not suffered from one side effect this round. He has acted like any normal two year old. However, the cancer still lingers and in my mind I still long to bring an end to this sickness.
Hearing the words, "the tumor hasn't changed" was heartbreaking. How could it have done nothing? Were our prayers for nothing? What would be do now? I had so greatly hoped for a complete healing or at least that we might be done. It is hard to wrestle through the possibilities and stay hopeful. The hospital as well as the doctor's words just reminded me once again of the weight of this on my heart. The memories of our first night on the 7th floor flooded back. The questions we had. The fears we tried so hard to function through together. We are in a completely different place, but we have been changed. Rick put it a great way at dinner the other night. We began as "circles" and this cancer has changed us into "squares." We are not sure how to be another shape. We have to learn the boundaries and the ways of this new normal. And we are still learning that. We are still wrestling with the initial news and the path we have been on over the past few months.
I anxiously await a call from the doctor again. This time it will be to confirm that surgery is the next step and when that will take place. We anticipate next week, but are not for sure. The anxiety comes not because it is bad news or uncertain news, but because we still have another challenge ahead of us. Chest surgery is a big deal. Andrew will have to have another chest tube and we will probably be in the hospital for at least 3-5 days to recover. We will deal with a grumpy, sedated little guy that is hooked up to tubes and monitored often in his "crib cage." We will have our sleep interrupted as nurses do vitals or ask us questions. And my heart will hope that surgery is our last step with cancer, but of course the fear remains in the back of my mind that "what if??"So I cling. I cling to the God that has shown us great mercy so far. He has lavished us with His love and comfort. He has walked with us through the waters and the fires and reminded us that I am His (Isaiah 43). He has allowed Andrew to live a normal life and have his treatments cut in half. And possibly in the next few weeks we will be done for a while with the hospital, shots, scans, and questions. It brings great joy to think about this, but the weakness in me remains. I still feel a little foggy from the news. I still am needing the meals that are planned for us and the grandparents to come help, and the friends and family to just remind us of their love. We have been blessed with all of this and more.
I do have one great story to end this blog. Andrew has been playing hard all day. We went out in the snow this morning, raced cars around the house, played with Buzz Lightyear, and wrestled. As I was putting him down for his nap my heart sank. Glancing on his blue sweatshirt I noticed that he was covered in hair. I thought, well, I guess this is round 2 of his hair loss...I should have expected it. However, as I pulled some of it off, I realized it wasn't his hair all over him, but our cats' that had come from him and Becca cuddling on the cat's pillow. The effects of this awful disease have begun to reverse and my son will hopefully not be sick much longer. Praise God who is "mighty to save and able to move mountains. He rose and conquered the grave,Jesus, conquered the grave!!" To our God who is able to do immeasurably more than we can ask or imagine! (Eph. 3:20)

Old Man Tumor

2010-02-17T19:46:00.000-05:00

For those of you checking, the call came in about 3:45 today. The news wasn't what we were hoping but it was good news. I preface the actual report with this because it may be difficult to understand when I give the actual report why this is good... you'll just have to read the whole thing.

The MRI showed that there was no change in the tumor. Hold on... don't lose heart yet... this isn't all bad. Of course we were hoping that this tumor would have drastically reduced or even disappeared and because that isn't the case we will have to wrestle with our disappointment, but hear me out this isn't bad.

Biology was never my subject so I will explain this the best I can and others can fill in the blanks through comments if they feel inclined. Basically it goes like this. Think of cells like people. When people are young and immature they are full of energy and potential; they could become just about anything they put their minds to. As we grow though our focus narrows and we settle on a vocation (which seems to be something that is done later and later in life these days... I always thought that's what college was for). Cells, like people, mature and when they do they settle down into a career path. Chemo is designed to go after the young whipper-snappers, not the old fogeys.

So, that said, the chemo didn't have an effect on the tumor because it has settled down, matured, and decided to be whatever it is. This means that the tumor won't really be growing or changing much if at all. In the long term this is really good as whatever tumor they leave is not likely at all to do anything since the cells are so mature... older folks don't seem to adapt very well to change you know. In the short term all it means is that surgery is in our future... our very near future. There is little to no chance at any more chemo because it won't have an effect on the tumor.

We are still waiting to hear from the surgeons. They will need to look at the MRI and decide what they want to do. In addition, because the tumor does intrude into the spinal canal, the neurosurgeon will also be consulted. The most likely scenario is that the tumor that is in the spinal canal will simply be left. It isn't doing anything to Andrew now and won't in the future. More than likely we are looking at surgery some time in the next two weeks. They will remove as much tumor as they can and leave what they think is too dangerous to remove (because of its proximity to other organs). More than this I will have to leave to those who know more.

As for us... its a mixed bag. We trust Dr. Waldron implicitly and so we know that when he says that this isn't bad news, that he believes that. We also don't have much of a paradigm for an unresponsive tumor being a good thing. If anything it feels like the fog is lifting and soon (Friday probably) we will see the end of the road. After his surgery he will still have scans to check on what remains about every three months for the first year, but the possibility of reoccurrence is slim to none. 9 weeks ago we were looking at 8-10 months. 3 weeks ago we were looking at 4 months. Now we're looking at just a couple more weeks. I know many of you may wonder whether or not your prayers have mattered since our specific requests weren't granted, but when we take the calendar and look not at today but widen the lens to see the last two months, you see the word 'MERCY' written in big letters.

Quick Update

2010-02-16T20:18:00.000-05:00

Hey folks! We thought it would be good to send out what we know concerning the MRI from earlier today. We won't have results until tomorrow but we do know the possibilities. The change in staging from a Stage 3 group 3 to a stage 3 group 2 changed the protocol for treatment. Instead of a standard 4 treatments and surgery the protocol is 2 treatments and surgery. That leaves us with three possibilities:
1) The tumor has been reduced to 49% or lower of its original size by the chemo thus no more treatments or surgery.
2) The tumor is reduced but not by over 50% percent and thus we will have surgery to remove more of the tumor.
3) The tumor is reduced but is still too large for surgery and so we will need more chemo.

Right now option 2 is the most likely but option 1 is possible. Option 3 is highly unlikely. Some of you may be wondering why we keep talking about 50% of the tumor instead of all of it. I don't know all the biology behind it, I get along far better with dead languages than cell structure, but here is what I do know. Neuroblastoma is a unique cancer in that if the cancer is contained in the tumor and you reduce the size of that tumor to 49% or lower of its original size, it will normally simply die over time (normal as in 87% of the time). There is a small chance of reoccurrence and thus Andrew will need to have scans periodically over the next couple of years but it is nearly impossible for this cancer, once it is reduced by that much, to do much more than grow very slowly. This is why the standard treatment protocol is to reduce the tumor to less than 50%.

We will post something more when we know it. Whatever the outcome the clear truth is that 9 weeks ago, to the day, we were scared we were going to lose our son; today we are looking at the possibility that this could all be over in a couple more weeks. He is called the Great Physician not because He can heal but because He does!

Make a Wish

2010-02-13T14:43:00.000-05:00

Many of you know about the foundation for kids with serious illnesses called Make a Wish. It grants wishes to these children...anything from a puppy to well, Disney World trips. Andrew loves Mickey Mouse so we have been talking to him about where Mickey lives and asking him if he would like to visit Disney World one day. When Andrew turns 2 1/2 in April, he can apply for a "wish" and the whole family can benefit. This has been his mother's crazy thinking since he was diagnosed. We mise well get something sweet out of this horrible situation. I was talking to my friend the other day telling her that although a trip for our family to Disney World would be amazing, I would give it all up to have Andrew's tumor go away. The trip would be fun, but to never have to do another chemo or see him get a shot or wonder what his life will be like with cancer again would be my true wish.
Well, I got off the phone with this friend yesterday afternoon. We had just spent some time talking about things happening in our planned lives that catch us off guard. We have our weeks planned and our babysitters planned and all those details, and poof.....all gone when the phone rings and someone has changed your plans. We were sharing how hard change is for us and how it just doesn't seem fair how quickly your life can be altered. I hung up with her and the phone rang almost immediately. It was a nurse from UVA saying "I am calling to make sure you have all the details for the MRI scheduled for Tuesday for Andrew." I was dumbfounded. "No, ma'am. I think you have that info wrong. We are not supposed to check back into the hospital until Thursday and it is for round 3 of Andrew's chemo. The doctors have told us we will not have a scan until after round 4." The nurse was confused but told me she would contact our doctor and get back with me probably on Monday. Of course this threw my world up in the air. An MRI? Tuesday? My parents are not coming back into town until Wednesday. What will be do with the kids? What does this mean? Why didn't anyone call? Rick calmed me down when he got home and just reassured me that we will figure this out and make other plans for next week if we need to.
Being the Type A that I am, there was no way I was waiting until Monday to figure this out. I called the on call oncologist and had her paged. She ended up calling me back while I was in Target with Madi and Luke on the toy aisle (that was a challenge in itself). Basically what she told me is that UVA had received information from COG (children's oncology group) saying that the diagnosis has changed a little. Instead of Andrew's tumor being a Stage 3, group 3, it is now a Stage 3, group 2. This has to do with cell types or counts or something more specific with the tumor. Anyway, she told me this was great news. This bumps him up again into an even more favorable category and the success rate is even more promising. The doctors want to do an MRI on Tuesday at some point because.....are you ready????? There is a chance, being the type of tumor that it is, that the 2 rounds of chemo he has already had could have shrunk it by more than 50% and WE COULD BE DONE!!!!!! Do you hear me??? We may not have any more chemo or surgery in Andrew's future. We may. This isn't a guarantee but it is a miracle. I had spent a lot of the last two weeks doing some research on this tumor and trying to convince the nurses and a doctor that we might need an MRI after 2 rounds of chemo. Even our wonderful oncologist research friend agreed with the doctors thinking that 4 rounds would probably be the most effective and no scan would be needed now. So with no manipulation or other arguments, the Lord has seen fit to grant my heart its wish to just scan Andrew's chest just in case. We may still be looking at 2 more rounds of chemo and/or surgery but MAYBE NOT.
God has shown his mercy to our family. We have received news that this tumor is even less dangerous than we thought. We may not need as much treatment and we have hope that it will be cured!! Please take time to thank our great God in Heaven with us. You have been faithful to pray and we fully believe that this is a specific answer to our prayers. He has heard us and given us grace and hope again. I may have not received the call from the Make a Wish foundation to get to go to Disney World, but like I said earlier, I would trade it all to be done with cancer in my little boy!! Please pray boldly for us and our scan on Tuesday!

Running out of Time

2010-02-12T15:18:00.000-05:00

My last blog post was titled "10 Days and Counting." When I wrote that post I was feeling confident and excited to get this show on the road. Everything has seemed great and we are even closer than before to being done with Andrew's tumor. Right now I feel anxious. I feel like I want to run around the house and organize and declutter and just control something. I feel like reality is hitting again. I have a son with cancer. I still can't see it physically day to day, but the beast still lingers. I am thankful for my emotions because for a while I was feeling a little numb. I was just going through the motions and didn't really have any strong feelings about anything. Those times scare me. I feel distant from God as well as people. I took the time the other day to listen to a great sermon by Greg Thompson (Trinity Pres in Charlottesville) about Jesus being in our darkness and Him being the presence of Light. It was refreshing. I was reminded I am not alone and He came to dwell in the midst of chaos. He is not surprised by my fears or the uncertainties I have. In fact, He came because He knew I would have them. SO REFRESHING!! He can handle me. Anyway, this awoken my spirit to feel and emote again. Fears returned ( I know that sounds negative, but when you have felt numb, it really is positive), questions continued, love grew, and I felt alive again. Since then I have entered another scene in this play called "Cancer." The weight has hit a little more and I cherish each day I have with Andrew. I love his humor and life that make me smile and I am just honored to be his mom. I have hurt for my hurting friends more. I have prayed with passion for others' prayer requests and I have begun to dread the hospital again. I do want to move forward because we truly are close to the finish line, Lord willing. But I still hate that my son even has to battle this. I hate that he is going through way more than most two year old boys will ever have to go through. I hate that in his common vocabulary come words like shots, tubies (his central line), hospital, medicine, and sickness. He knows he is sick and he rolls with it. I am thankful for modern medicine and wonderful doctors, but I will take the broken bones anyday over this crazy struggle.
I just finished making my list...one of my favorite things to do, about what this week holds. Church, food shopping, preschool registration, music class, a friend visits on Wednesday, and ohhhhh a trip to the hospital for chemo!! How did this become a common list item. But it is.
We will go on Thursday with our bags packed. We have told Andrew he will go back and probably not get any shots. He is thrilled. He wants to go back to preschool and play in their playroom. We have our paper chain hanging in our kitchen that helps Becca know how many more days we are here before we go back. She doesn't like surprises and doesn't have worry with that chain that we will be gone when she wakes up in the morning. We sent Madi to school today, after being off for nearly two weeks, to have her Valentine party. She was so excited to go with her little bag of Valentine's for all her friends she loves. But I was a little sad because I couldn't be one of those moms that was helping at the party. I have always envisioned myself at all the school events helping and watching my kids delight in each activity. I know that is unrealistic with 4 kids, but it is even harder now. I took Luke for his rescheduled 9 month check up to the doctor today. He was supposed to go next Friday but we will be at the hospital. I sat there in the room waiting for the doctor with my cute nakey baby on my lap. This type of visit is so familiar after having 4 little ones, yet being there adds different memories. I now have a red box for "shots" in my house like they do. I worry just a little bit with my other kids when I take them in if the doctor will find something concerning. And I still remember that visit 2 months ago that informed me of Andrew's tumor. It is still real!
A dear friend said to me the other day on the phone, "You know, you will never be the same after all this even when Andrew is better. You will still have these memories. You will always have to record all this on school forms, medical forms, and any other legal document....Andrew had cancer." That is how I feel. We are getting through this and Andrew will be better (Lord willing), but it will be forever etched on our hearts. Our marriage will be changed. Our girls will be changed and molded. Our son will be shaped by this time. And we will have things to offer others, others that hurt, that we wouldn't have if we hadn't gone through this. I cling to that knowledge that there is a purpose. This is for my good and not to destroy or punish me. My Jesus loves me and He has allowed this to happen in our family to draw us closer to Him. I really am beginning to believe that. The emotions are scary at times and I take risks when I share them with others not knowing how they will receive them, but they remind me I am alive and we are making it through day by day.

Permission

2010-02-11T11:45:00.001-05:00

Just a few minutes ago I read a message from a friend on that great hub of virtual relationship, Facebook. Two things that were said have brought me back to this blog, a place I have avoided for a couple of weeks. The first was relating the story of her mother-in-law and how difficult it is to watch life go on around you when you are in the midst of tragedy. The second was this phrase, "don't be too busy to deal with your own feelings". In light of those two things I have returned to write a few thoughts, not necessarily profound ones, from a father.

While sitting at my desk, surrounded by the familiar trappings of an office with more books than shelves I am met by something very unfamiliar, my hands are shaking. It isn't a violent shaking mind you, more like a subtle tremor, but I have not yet seen 32 Januarys; something isn't right. if I were to try and narrow it down, take the time to deal with my own feelings, as it were, I think the reason comes down to one simple fact... I'm angry.

I'm angry at the fact that this blog creates the aura that people understand what we're going through to the extent that many no longer ask; over the past three weeks one person has asked me how I am doing, not how my son or my wife is doing. I'm angry that this statement will probably be met with some form of the notion that maybe I should help teach people how to walk with those that suffer; for once I'd like to take off the pastor hat and just be a person. I'm angry that my evenings are now filled with wrestling with kids that are dealing with this stress in their own ways and processing all of that with my wife such that, by the time the kids are asleep and we are done talking my eyelids are closing involuntarily; my relationship with Jess right now seems more founded upon desperation than delight... I hate that. I am angry that the one thing that I told multiple people when they asked me at the beginning of this whole ordeal, "What will you need Rick?" is the one thing that has not happened. I'm angry that every day and every night I feel the need to munch on a bottle of Tums when there seems to be no reason to be stressed. I am angry that two friends are going to the hospital today for tests, one with the possibility of her fourth bout with cancer before she's even out of her 30's and the other to have their son tested for Cystic Fibrosis; I want to scream! And yes, I'm angry at the fact that when I go to the grocery store, stand in the check out line, and look at all the "news" that is plastered in full color on the cover of magazines that I have to resist the urge to rip every one of them off their metallic holders, move to the middle of the store, and burn them in a glorious conflagration of irrelevance. Quite honestly, my son (and lots of other sons and daughters) have cancer, is it really that important rich blond with more money and time on her hands than is helpful or healthy thinks that she is addicted to plastic surgery (whatever that means). I'm angry that my habitual ways of dealing with life don't help; they simply compound grief with the futility of my brokenness.

As I tell folks that I counsel though anger is generally a second tier emotion. That means that we get angry because it makes us feel strong and powerful. What is below that anger is normally what is more true of us and generally more difficult to deal with. "Don't be too busy to deal with your own emotions." The reality is that what I feel is not anger... fear, hurt, confusion, maybe... but not anger. The anger of my apparent forgottenness is really the hurt of someone wanting to know if he's still seen. The anger of the expectation that I should teach others how to walk with the grieving is fear that my life will always be governed by the expectation that my personhood takes second position to my title. My anger with the suffering of friends is the confusion that comes with a world driven mad by sin and my fear that there is nothing I can say or do to ease their suffering. My anger at the state of my marriage is more fear that habit will set in and that our relationship will be more about being a crisis management team than a picture of the mutual delight of Jesus and the Church. My anger at my own broken methods of dealing with life is really fear that I won't have anything left if I give up these tactics; I will be left exposed to the harsh winds of reality with not even my fig leaf to cover me.

It is at this moment that the Gospel of Jesus seems so far away. My vocation is the weekly, and daily at times, preaching and applying of the Gospel of Jesus to the lives of others. Yet, at this moment, I struggle to see it in relation to myself. That's not true... not really. That is the easy answer that I want to give. The honest truth (as opposed to dishonest truth??) is that I don't like the Gospel of Jesus right now. What I want the Gospel to do right now is take away my fear, my hurt, my confusion, my pain, cancer, loneliness, weariness, CF, abandonment, sin, estrangement and relational violence, even stress. I want right now what the Scriptures call shalom. Want is perhaps too weak a word; right now I am demanding that Jesus give me this. I don't like this feeling, a feeling that somehow conjures the image of a large vacuous space in the middle of my abdomen. I don't like longing. I want to fill it with something, anything that will numb it or fill it temporarily. The writer of the book of Hebrews likens the Christian life to that period in the history of Israel when they wandered in the wilderness. They were out of bondage but not quite in the Land of Fullness yet. It seems so easy at times to wonder at their incredulity, their capriciousness, and their grumbling. I wonder though if, when they had been walking in the desert all day, carrying everything they owned in carts and on their backs, and they finally stopped for the night, I wonder if they felt the same feeling that I am now. I wonder if their own disappointments simply got the better of them like mine are. I wonder if, when they seem so ungrateful and flippant, it isn't really just that the intensity of their longings met the forcefulness of their fear of those longings remaining unfulfilled and the result was enshrined forever in the pages of Holy Writ. What is educational (such an awful word) to me is that even in the midst of this two things remained true, the Pillar still stayed with them, and they still followed it.

My own anger, hurt, fear, confusion, all of it, doesn't somehow frighten God off or cause Him to fly into some uncontrollable rage as if His ego is so tender that he cannot relate to anyone who struggles with life and relationship with Him. No, the Pillar is still there, right where its always been, leading me while I stumble along through this desert. At the same time I am stumbling along. As much as I rage against the fact that Jesus has not fully brought shalom to this world yet, I also know full well that if He doesn't bring it, it isn't coming. I can play at the idea that i can fill my longings in other ways, I can even try it out, but you and I both know it doesn't work. The reality is that I long for Eden but, when I strike out on my own, I only seem to find my way back to Egypt. The way to a world without pain and sin and cancer and tears and death is through Jesus. And so, like the Israelites, I will follow the cloud during the day and the flame at night. I will stumble and fall and need help standing. I will, at times, not be able to do much more than crawl; but this vacuous space will only be filled in the land to which the pillar is leading and so I will keep crawling. In the meantime I will live in this strange place where my longings are answered but only in part, where I still have to deal with my issues and the issues of others, where I have to take time so that I'm not "too busy to deal with [my] own feelings."

Thanks Erinn, I guess I needed permission.

10 days and Counting

2010-02-10T15:41:00.000-05:00

I am writing to give you all another quick update. Andrew continues to amaze us with his strength, energy, health and joyful spirit. We are 10 days away from round 3 of his chemo treatment and we have not experienced any side effect this time being home. Andrew had his blood drawn two days ago and those results showed that his counts are up again and he is "in the clear'" from hopefully getting any sickness and returning to the hospital. He continues to eat lots, sleep through the night, jump out of his pack and play (a new, not so wonderful thing that he has learned), and just amaze us with his humor and life. We are so thankful to God for His mercy on our little man.
My mom and stepdad will come back into town on Wednesday and Rick and I will pack our bags to return to UVA on Thursday at 10am. Andrew will have a three day chemo treatment. The chemos are ones he has already had so don't anticipate any major side effects. Please continue to pray for that situation. We will have two more rounds of chemo and than another scan to determine whether or not surgery is the next step. We are guessing that it will probably happen sometime around April, but can't be sure the timing. The interesting thing is that the cough that we originally took him in for has returned in a lesser degree. He has been coughing off and on at night and at times throughout the day. It is nothing that we are concerned about, but it is very interesting. This is because our ongologist told us that the cough could have been caused by the tumor pushing against the lung. When it pushed it would cause Andrew to cough since it was an abnormal lump in his chest. The doctor also told us that when the lung became "used" to having the tumor there, the cough went away because his body learned to adjust. His other thought was that the cough might return when the tumor began to retreat because the lung would then expand again and have to adjust to breathing "normal" again. This could all be theory, but part of me rejoices in the coughing, thinking maybe that wretched tumor might be disappearing. Praise God for treatments that will help my boy have a long life without too many lasting side effects. We again are not completely out of the woods yet, but we sure are closer.
We are doing okay here on the home front. The snow has kept us homebound and that can drive anyone a little crazy. We haven't had church in 3 weeks so that has taken its toll on our spiritual well being. We long for the Word to remind us of God's faithfulness and love as well as the fellowship of other believers to share our trials and joys with. Our kids are doing well and reminding us of our need for grace and forgiveness. Our weaknesses even in our daily, normal lives bring out our need for a Savior that lifts our eyes to Someone in control. Someone who loves each of us and knows our hearts and needs. Thank you for praying for us. That is the greatest gift you all can give to our family right now. We need it often and we love each of you for your love and support. Please pray for the next week at home together. Pray that we might enjoy each other and love each other well. Pray for Andrew's third round of chemo....his time in the hospital, the side effects, and his heart through it all. Please pray for the other kids while we are away. Pray for their little hearts to be secure and know they are loved. Please pray that transitions will be mild and they will get back on track when we come home. Pray for Rick and I in our marriage that we will draw closer together and make wise family decisions. And please pray for this tumor to be retreating especially from Andrew's spinal cord...that maybe we wouldn't even need to have surgery to remove any of it.

The Gong

2010-02-06T14:04:00.000-05:00

"Andrew has a tumor," our doctor said. That was almost 2 months ago that we heard those words. My son has a tumor? Isn't it just a cough? I have been scrapbooking our family album from 2009 and have begun to put in the pictures right around the time that the cough began. It is amazing the new emotions that are hitting at this stage in the journey.
A pastor of ours once gave a great analogy about pain. He said that the pain we feel inside when we hurt is like a gong. The initial "bang" hurts like crazy and throws your world into confusion. That is the way it felt when we first learned about Andrew's cancer. Our world went blank during those first few weeks. It was hard to function, to care for the normal things we do everyday. We were not sure his outcomes, his reactions to treatments, or how we would survive as a family. The "bang" alerted all those around us to help and rush in with meals, cleaning, cards, phone calls, gas cards, services, and love. It was a wild time.
We are now in a chapter of this story that is calmer. Things are pretty "normal" and Andrew's health seems like it did before all this began. However, the noise of the gong still resonates in our heads and hearts. Rick and I have sat for the last few nights and tried to put our finger on why we are so disrupted. Why do we still feel stress and confusion even though life is going on as before? The obvious answer is because the cancer isn't gone yet, but we feel there are deeper issues at hand. People are still bringing meals and helping with chores. We have a few extra cars in our driveway most of the time. A nurse comes over a few times a week to give shots, draw blood, and help change dressings. Our girls are acting out and regressing in some forms for some extra attention. Life is still not normal. The effects of the "bang" are still scary and troubling. We still don't know the answers to the way this story will play out. God has been so gracious to Andrew and our family with the side effects and legistics of all the details. He has reminded us of His love and faithfulness, yet we still feel unnerved and lonely.
It is a strange place to be. We should be joyful and excited that we are halfway done (and we are). We should feel the love of God around us by the hands that continue to provide (and we do). But we still doubt. We still doubt that Andrew will be completely restored to health. We still doubt that people truly want to enter into the chaos of our hearts and not just read our blogs to find out about us or stare at us like hamsters in a cage. We are still in some ways unable to even articulate how people can love us well....so we long for people to just be bold and try. We long for those evenings of friends on our couch or others that pull us out of this place just to "take our mind off of the fears." We still have needs that we are realizing go deeper than the spreadsheet on the computer. Needs of shepherding and grace. Needs of counsel and marital wisdom. Needs of pursuit, not out of guilt, but out of care and true friendship. We need to be reminded that we are not alone, or even not too much to handle. That it is okay, even though things seem to be okay on the outside, to still struggle with the news of having a child with cancer. The weight is still heavy and we still feel the bangs of the gong. They do get less as we move closer to the end, but they still throw us off balance daily. The day will come when we hope to be on the other side and even able to help others that suffer through pain and confusion, but I guess this is our time to be weak and allow others to help bare the weight of the banging gong.

Just Checking In

2010-02-02T19:53:00.000-05:00

Andrew is on Day 6 of his second round of chemo. He is.....well.......acting just like a two year old boy. He is eating, drinking, running, playing in the snow, jumping off of the couch, playing with his sisters and brother, listening to stories, skipping naps because he is doing summer saults in his crib, and sleeping great at night. We are so pleased with his health and state of things. So far we have had none of the side effects that we had last time or the ones we anticipated for this round (vomiting, no appetite, leg pains, mouth sores, or just sickness at all). He had his blood drawn yesterday and his counts were great. The nurses are pleased and he is in the clear so far. His counts will continue to drop this week and his lowest will probably be this weekend or the beginning of the week. But, so far, things are going well. We still have 16 more days though until round 3, so he is not in the clear yet, but today he is doing well.

Rick and I are thankful. We got to go out on a date last night to Ruby Tuesdays. We shared a blondie and some ice cream and just talked as husband and wife. Some of our conversation revolved around chemo and schooling and kids and potty training. But some of it was spent laughing and hearing each other hearts about one another's lives. It was nice. We have loved having my parents here to help out with our kids. They have respected us and done above and beyond their "call of duty.' We will be sad to see them go, but also are ready to just try life again as a family of six. The Lord has been faithful to us. He has answered prayers about side effects and transitions. He has protected Andrew and helped him get through a household of sick people (my parents and girls are with colds) without getting sick. God has given us strength each day to spend time with each kid, if only for a few quality minutes. And He has kept Rick and I strong with each other. All those are true miracles. Unfortunately we still struggle with wondering when the other shoe will fall and the "bad" will happen, but we need help with our faith each day to believe God is good and He loves each of us.

So that is where we are right now. Rick is ahead in sermon writing due to last week's snow. Madi is enjoying snow days home and time playing with princess dolls. Becca had her second music class today and can't stop talking about it. Luke is eating like a champ and getting into everything the way a 9 month old should. Andrew continues to amaze us each night when our home care nurse comes and gives him a shot. He cries and dreads the experience, but afterward loves to chat with her and share his toys with her. His heart is amazing and his spirit is uplifted. And me, well, I love the ups and the downs of this crazy life. The stresses have not been from my little boy with cancer, but from the normal stresses of being a mother of 4. I can't seem to find the time....to be creative, to get chores done, to just be what impossible standard I have set for myself as a mom. Some moments I wish I was back at JMU with no "major responsibilities" and other moments I love the life I have that reminds me each day that I have an abundant life that God has given to me.

Two days ago when another snow storm came and brought about 12 inches of snow, my heart was anxious. The last time it snowed here it was the day before we found out Andrew had cancer. I could still envision the things we did as a family before we took him to the doctor. A part of me dreaded going out. So much had changed in our lives. But the other part of me smiled. I smiled because two months later, my son who had been diagnosed with a Stage 3 neuroblastoma was suiting up to go back into the snow with his sisters. When we left the hospital last week we never imagined he would be doing so well and able to play. God has allowed these scary situations to occur in our lives, but He has also shown us the "beauty in the ashes." We have seen His hand carry us along the way and really bless us with wonderful surprises. We do not know what tomorrow holds. There is still worry in our hearts at times that things might take a turn for the worst, but tonight I will go to bed knowing that my kids got to be kids today and we are one day closer to the end of this chapter.

So Far So Good

2010-01-30T11:24:00.000-05:00

I sit as I type watching the snowflakes fall from the sky. The kids are all playing with each other and their grandparents and everything seems to be going well. Andrew was discharged yesterday around 2pm. He had a good night in the hospital and had a blood transfusion Friday morning. The doctor wanted to make sure his hemoglobin was up before sending us home so we wouldn't have to turn right back around a few days later and come home. When I returned that morning to pick Andrew and Rick up, Andrew was reclined in his crib watching some show. He smiled when I walked in and immediately wanted to know where his lunch was. He has been eating and drinking great. In fact he had 3 pancakes, yogurt, eggs, fruit, and milk for breakfast. Andrew had a great sleep last night. I was the paranoid one waking up every few hours to check on him. At 3am I heard him make a noise and immediately jumped out of bed, loaded the medicine dropper with nausea medicine, and ran to his bed only to find him sound asleep. He was like that until 7am this morning. So my dear friends and family, we are doing well. This time home so far has been completely different than last time. Andrew is playful, happy, hungry, thirsty, energetic, and well...himself. Last time he was sore, miserable, sick, lethargic, and appetiteless. We are thankful. Thankful again for the report that Andrew will only have 2 more chemos and possibly a surgery. That means we are looking/hoping to be done by May...not November. We are thankful for our sweet boy who is fighting well and hard to win this battle and he seems to be winning right now. We are thankful for our family to just relax with today. We are thankful for my parents who continue to serve us and love our kids so well. We are thankful for the snow that keeps us inside to just take it easy and stay in our pj's all day. We are thankful for the prayers that have definitely been the main reason we are in this great situation. And we are thankful to our God that continues to remind us He loves us and is for us! We will keep you updated!

A Long Exhale

2010-01-28T21:19:00.000-05:00

For the majority of my childhood during the summers I spent more time in the water than I did on dry ground. From early in the morning till my parents dragged me out in the evening I existed in the muddy waters of a central Virginia lake. Of the many games that filled those summer days, the one I could always play, as it was a solitary competition, was how long I could hold my breath. There were two main ways of playing this. The first was attempting to sit on the bottom while holding my breath... never very long since too much effort was expended staying on the bottom. The second was simply floating on the surface of the water. Though these two methods differed in execution they both ended in the same way, with an explosive release of air held captive for countless... uh... seconds. That feeling was unmistakable; relief and exhilaration commingled into those precious moments when your head breaks the surface and cool air rushes back into your lungs. That is a feeling I was reacquainted with this evening.

Many of you probably know that there was one last test that we were waiting on. The actual description of it is more than I can really explain; if it had something to do with hermeneutical method or Greek verb forms I would be better off but it deals with details of two chromosomes that simply makes little sense to me. The "brass tacks" of it all really comes down to this, if everything looks normal our treatment plan is four cycles long. If something looks abnormal the treatment is double that.

Though he is a pleasant man Dr. Waldron rarely enters the room with a smile on his face. I suppose that is the years of dealing with pediatric oncology patients... either that or med students. His demeanor is normally one of quiet calm and steady resolve. He is careful, weighing his words and judging reactions to balance disclosure to the parents of his patients with the reality that too much information... or too complicated a description... can quickly overwhelm couples whose minds are already spinning with the stark reality of their situation. This evening though Peter Waldron entered our room with a grin.

As it turns out the tests show that the chromosomes they were looking for in this tumor were normal and so Andrew's treatment plan is four cycles of chemo and a probable surgery. That sound you hear... that is the air rushing back into our lungs. You see what we're looking at is four cycles total, not four additional. Andrew just finished receiving his chemo for round two, that means we're half way there. Instead of thinking about chemo for the length of an academic year, we're talking about a semester in which we're already at midterms.

I would imagine that good news... or even slightly good news... is something that oncology doctors rarely get to give. If not rarely at least not often enough; that is the hard reality of this broken world. In that light Dr. Waldron's sly grin makes perfect sense, here was an opportunity to give great news to parents that only a month ago were crying while he told them about what was happening in their son's body.

Tonight we will sleep easier, but not at ease. It isn't like this story has ended, it hasn't. There is still poison pumping through the veins of my boy making him "well". There will be days and nights ahead where Andrew will be sick and grumpy and tired. We will probably have to bring him back to the hospital at some point because of fever or too few or not enough hemoglobin or... well you get the picture. We will still have to cancel our 10th anniversary trip, the first vacation we've taken without kids since Madi was born. We will still watch our boy deteriorate, our girls struggle with insecurity, our marriage suffer from too little energy and too little time to be alone. Yet, at the same time we have a semblance of predictability added into the mix. There is a plan with a (more or less) clear finish line. Sure, anything can happen in the next few months but we'll take what we can get at this point. When you're driving in a fog even the smallest break to see the road ahead is a welcome one.

I guess I should be excited but honestly I feel exhausted. Holding your breath is a tiring business and I'm feeling a good bit of it right now. At the same time, as I reflect on the events of today I know that I should feel more drained than I do, more uncomfortable here in this hospital, and more scared of what is still to come. The fact that I don't could mean that I'm numb... a good possibility... or it could mean that there are lots of people praying for us. I know the latter to be true even if I don't have the perspective yet to discern the former. For any Christian prayer is a problem. If you lean heavily on the side of God's sovereignty then you find yourself wondering why you should pray if God's will cannot be frustrated. If you lean heavily on the side of human responsibility then you should find yourself wondering why you should pray since God is too much of a gentleman to actually overcome any creature's "free" will. I'm not going to attempt to parse the complexities of the way God rules the universe, I have not the intellect nor the wisdom, I will say only this; many of you are praying and God is working to calm our hearts, strengthen our faith, and tame the rebellious cells in my son's body. You decide how to work the spiritual calculus of causality; I have an opinion but not the heart to engage the debate right now. All that is really to say, thank you. The care that our family is being shown, both from near and from afar, is more than I could have imagined. And for those who struggle because "all they can do is pray," I cannot thank you enough.

Roping the Wind

2010-01-27T09:42:00.000-05:00

When I was growing up I remember that I had a storybook of American folk tales. Honestly, I don't remember anything about that book except for one picture. It is an image that, for whatever reason, is burned indelibly in my brain. A rugged cowboy stood in the middle of the classic old west main street, his hair blowing wildly in the wind. Across from him was his adversary, a mighty tornado. This image was made stranger by the fact that this cowboy had somehow roped this cyclone and was wresting control from it. I remember nothing of the story that accompanied this picture (some of you might know it). All I remember is how much this image appealed to me. It is a little known fact that I am terrified of tornados... perhaps one too many viewings of The Wizard of Oz when I was very young... and the idea that someone could take such a chaotic force of nature, face it, and become its master was something that made a lasting impression on me.

I say all this because this image has come back to mind in recent days as we've been preparing for the second round of chemo. We are living right now just on the edge of that eye I spoke of a few days ago and the shadow of chaos has been growing in my mind like the distant sound of an approaching twister. What has defined the boundaries of this twister for me the last two days has been watching my son's hair fall out. Monday afternoon it began, the fateful leaving behind of wispy blond locks on every pillow, shirt collar, and shoulder his head touches. I wasn't prepared for this new reminder of Andrews condition. Of course I knew it was going to happen but we had been told to expect it after the second cycle. Suddenly the reality that we're dealing with a disease, side-effects of treatment, and frankly a world that is completely outside of our control. The tornado arrived and apparently I forgot my lasso.

I'm not sure I can really give justice to the maelstrom of emotions that run through your heart when you watch this happen to your child. I have a beautiful son... simply beautiful... and I am watching part of that beauty taken from him. I have a wonderfully active son and in a few days that will also be taken from him as the "medicine" does its work. I have a family that finally seems to be adjusting back to life and we have to turn everything upside down again to go into the hospital for the next treatment. At the core of my heart is the striking sense of powerlessness, the bitter taste of my finitude, and my sadness at the rebellion going on in Andrew's body. What comes to the surface though is none of these things. Since I saw the first fine blond hairs left behind on a pillow I've just been angry. Anger doesn't really cover it. Anger doesn't explain my ridiculous screaming at 7:30am at a car seat that wouldn't go in right. Anger doesn't quite flesh out the annoyance at every interruption or the coldness that I've shown towards every innocent question.

I'm sure I've said this before but it bears repeating, the rage that I feel is not only rage at what is going on, but rage at my own helplessness. I hate it! I hate that I can't do anything but watch this. I hate that have to witness my son's slow deterioration. I hate that I can't preserve this period of peace. I hate that soon our trips into public will be marked with stares full of question and pity (though honestly we have gotten those before just being a family with four kids from five down). I hate that there can be no explanation of why no matter how much I might want it.

I suppose that isn't all that different from the anger of Job... perhaps only in degree. He had lost everything, his kids, his livelihood, his health even though even God had declared him to be the best of the best. That book is one long attempt by both Job and his friends to find some answer to his suffering. In the end he never received an answer. Job wanted to find a simple equation, do this and you will get this; this he never received. God's only answer to Job was, "Things are more complicated than you know." In the end Job received not answers but a presence, the presence of God. In a way Job's search for answers, for an explanation, like our own searches, is just another attempt to lasso the whirlwind. The hard truth is that I was not created to be able to rope the cyclone, measure the grains of sand on the shore, or will that hair should fall from my son's head. I was created to be dependent on the One who can do all these things. The beauty of Christian faith in this is that, through Jesus, I am offered something so much stronger than answers... I am offered Him. Because all hell broke loose on him on the Cross he can be truly present with me when it breaks loose in my life, knowing what it is like to ask questions for which your only answer is deafening silence. More than that though the real beauty is not found only in Jesus suffering, but in his resurrection. When all hell broke loose on Jesus it did break him, but it didn't win. When Jesus rose from the dead he declared that chaos would not have the last word, that suffering would not have the final say. The silence of Friday afternoon was overcome by the shouts of Sunday morning. Thus the Christian Gospel proclaims to me even in my anger that chaos and brokenness and sin won't win, that Jesus will do for the world what he did in his own body, remake it without futility, grief, pain, and chaos.

Honestly though, that doesn't take away my anger or my tears. A future hope is just that, a hope of the future. Today I still have to deal with watching my boy lose his hair... something I didn't anticipate would be this hard. I don't do it alone though. In the midst of my rage and my fear, and my weakness there comes a nail-scarred hand on my shoulder and around my waist, holding me up, and a voice saying,

"I do know that this is hard but it won't win... I am with you and I've lassoed the cyclone."

Clinging

2010-01-25T23:41:00.000-05:00

The nights are the worst. The darkness is both physical and emotional. Part of me wants to cling to the day so we don't get one more day closer to chemo while the other part of me wants it to hurry up and get here.
    Today was another one of those days of all my plans being smashed from the very beginning. We had an animal break into our trash this morning and scatter it all over the yard. Somehow our automatic door on the van opened in the middle of the night. That isn't usually a problem unless we are having flooding rains and it soaks your van's insides as well as all the carseats. So from the very beginning things were not as I had planned. A dear friend came and got Andrew and Becca for a playdate and Madi was at school. I was alone with Luke and he takes a morning nap. I had great plans of organizing closets or purging baby clothes we didn't need or rethinking our downstairs dining room that is covered in toys. I had two hours and normally....that is the key word in most of these blogs, normally I am a powerhouse in two hours in my house. Well, not since Andrew's had cancer. My world has been tossed upside down. I can't think straight and the bare minimum gets done. The kids are clothed and fed and bathed. Everyone is safe and the house functions, but there aren't many extras. After naptime, when I usually get clothes out for the next day and things straightened while kids play, we all just sat in front of You Tube and listened to praise songs. Andrew now loves the song by Laura Story "Mighty to Save" and will ask for the Jesus song. He is so cute belting "Author of salvation" out with his sisters. So we sang and just rocked together. Oh and I should have mentioned that I had another rude awakening when I picked Andrew up from this nap. His shirt was covered in cat hair. I said, "Buddy, when were you wrestling with our cat?" He couldn't remember and as I was brushing it off of him I realized it wasn't our cat's hair but his!! No matter how much you prepare yourself for this side effect it rips through you like a knife. I found myself just staring at his precious head and its beautiful blond strands that are still there. I must have taken 5 pictures of him while he ate his snack. Anyway to get back on track, today was just filled with other plans and agendas. I am beginning to learn to be okay with this.
The kids went to bed great and Rick and I settled down for some good "24" shows. It is easy to get lost in that show and forget all reality. Until it is over and reality hits again. As I got ready for bed and began looking around my room for the supplies we will need for the hospital, the darkness hit again. Can't we just run away? He is fine isn't he? But no, the tumor still screams from within and we must go back on Thursday to continue to blast it.
     The worst day of my life was hearing the words "Andrew has a tumor." However, we are not defeated. We still make it through the day smiling most of the time. I feel the weight of this battle on my heart now, but the sun will come up tomorrow. I still want to emphasize the part all you readers play in this journey. Please don't think you are bothering us....call, email, send notes! We love hearing from you. It reminds us we are not alone and we have help. I am also reminded truly, daily, when my plans all evaporate that my days are not my own. I must hold everything loosely and give them to the Faithful One who loves us and is fighting for us. As I lay in bed thinking how can a mother allow this pain and suffereing to happen to her son I was reminded ever so quietly that my Heavenly Father had to watch while His Son suffered. He could have stopped it but He knew the greater plan. Techniquely Rick and I could stop this treatment and all its side effects. We could just go on and pretend it never happened. But people would think we were crazy. Its the only thing saving his life right now. We just have to remember the greater plan. So, I will keep clinging with my fingernails another day. I will keep remembering when the fears set in what a dear friend once wrote on her blog during a dark time, "We must remember not the What Ifs, but What IS." We have a lot to be thankful for in the midst of this trial.

The Good, The Bad, and the Ugly

2010-01-23T21:54:00.001-05:00

Well, we are on Day 17 of Andrew's first chemo cycle. He is doing great in all aspects. He is eating like a champ. Guzzling down tons of milk and applejuice. Playing everything from He-man to Strawberry Shortcake. Sleeping through the night. Enjoying no shots because his counts are up. We couldn't ask for a better situation with him. We are so thankful that God has had mercy on our little guy and given him a great couple of weeks. He is asleep downstairs and will be joining us for church tomorrow, Lord willing.
The funny thing is, although Andrew is doing so great, the whirlwinds continue to blow through our peaceful house. The girls have reverted with some of their behaviors and just been a little more anxious about where mom and dad go when we walk out the door. The meals are still being brought by wonderful servants to just keep me afloat throughout the week. And the visitors have still been here to keep us company just in case something would happen. As we said goodbye to dear friends this afternoon who had come to take care of our kids last night and stay with us, I fell apart. Not because they had left but because my world is still so out of control. Everything may look good on the outside with our house but we are still dealing with the turmoil that comes with the news of having a son with cancer. We feel stress of the week to come and what side effects may come down the pipe. We feel stress not knowing exactly how to shepherd our other kids with their fears. And I feel stress because I still feel like I am walking in a fog at times not knowing where to begin wtih chores, phone calls, or organization. It is a very strange place to be.
Yesterday we had a great time out as a family. We loaded the four kids up and went to McDonald's for Happy Meals and burgers. The kids were great. We received the usual smiles and stares in amazement at the juggling act Rick and I do to get everyone's coat off, seat settled, and food in front of them. Luke even got to sit in a high chair and eat with us for the first time. I sat watching my kids munch on their fries and converse with one another and just smiled. This was wonderful. Time together as a "normal" family. As I glanced around the room at the sweet faces looking at us I felt proud. I also had this strange feeling inside because on the outside no one around us knew my son has cancer. It looked cute and normal.
The outside looks okay but the inside is raging. Both Andrew's body and our hearts. We want the battle to be won already. Part of me wanted to just get in the car and drive and ignore all that we have to still face. I dread Thursday coming but know that if we don't walk through it, Andrew will not get better. This is the "bad" part about it. We must go through at least one more round of chemo just to determine the next step in this journey. We must face the side effects and weather the storm that will come home from the hospital. We have to do all this and raise 3 other kids, pay bills, preach sermons (Rick), and just function through each day. This is hard and very challenging to be reminded of each minute of every day. Cancer isn't just an ear infection that will go away with some antibiotics. It is a disease that will destroy Andrew's body if we don't fight. The bad part about it is that on the outside everything seems fine and we inject poison into him and it then seems awful. We have seen no outward effects of the cancer wrecking his body but we have seen the effects of the chemo-poison causing him pain and sickness. That is part of the irony of this whole thing.
The "ugly" comes in with the way we respond to this trial. As you can imagine we are under a great deal of stress and have many more things on our plates than we know what to do with. We snap at our kids. We push each other away. We run to things to escape the "out of control" feelings. I have seen sides of me that I never knew existed. I have had thoughts, fears, and feelings that might shock an average person if a "pastor's wife" were to share them from up front. There is great ugliness in my heart. I am not naturally wired to respond in love or kindness to those around me. I resent people for being kind to me and wish this had all never happened. The more I try to create a calm, normal world, the messier and uglier I make it. It is a helpless, discouraging feeling.
What is my hope? How can I make it one more day? I sat in the midst of the ugliness during the kids' naptime today and asked these very questions. I tried to pray and read Scripture to pull me up from these depressing thoughts. As I sat there just trying to make heads or tails of just this afternoon and the stress it carried with it the words that spoke to my heart came from the Heidelberg Catechism that says:
1. What is your ONLY comfort in life and in death?
That I (and Rick and Madi and Becca and ANDREW and Luke) am not my own, but belong-body and soul, in life and in death to my faithful Savior Jesus Christ. He has fully paid for all my sins with his precious blood and has set me free from the tyranny of the devil. He also watches over me in such as way that NOT A HAIR CAN FALL FROM MY HEAD without the will of my Father in heaven. In fact, all things must work together for my salvation. Because I belong to him, Christ, by his Holy Spirit, assures me of eternal life and makes me wholeheartedly willing and ready from now on to live for Him.

Amen. Someone else holds my life and my families' life and especially Andrew's life in His hands. In a week Andrew will go through round 2 of his chemo treatment. He will be injected with more poison that will run through this body and try to destroy everything it can. He will probably lose his beautiful blond hair and begin to look a little sicker. When we go places he will no longer be looked at as just an ordinary boy but instead a little guy with cancer. And that makes me sad. However, I find great comfort in knowing that my God is aware of this. Cancer hasn't surprised him. Sickness and sadness doesn't overwhelm Him. In fact, He will be there with us when we cry over the loss over Andrew's outward appearance and know every hair that falls from his head. And our personal, loving Savior will walk next to us and help us get through another day. He will remind us that He is still in charge of the bad and the ugly and that He is fighting for Andrew to give our little man an incredible story to tell the world.

Living in the Eye

2010-01-21T10:22:00.000-05:00

During our last year in Orlando we lived through four hurricanes. The first, Hurricane Charlie, was easily the worst. Charlie came in off of the Gulf small and fast. His approach to central Florida over the course of the day was preceded by thunderstorms and tornados. I hate watching the weather but that day I was glued to the TV. He finally arrived in the evening. Honestly I can't remember the details about Charlie's rating when he finally made it to O-town, all I remember is the howling of the wind. Outside of our apartment it raged throughout the evening as we hid in the only room without a window... our guest bathroom. Then, all of the sudden, in the dark of night, it stopped. The raging maelstrom was replaced by a gentle breeze; we were in the eye. It wouldn't last of course. Shortly the wind began again and the damage that Charlie caused across central Florida is well documented. That is what made that short period of calm all the more strange, almost deceitful. It gave a false sense of peace in the midst of a terrible tempest.

In a strange way that is how we are feeling right now. This morning I pulled out my journal and noticed that the last time I had actually gotten to write in it was the morning of December 22nd, the day that Andrew had his CT and was diagnosed. The next two and a half weeks are almost a blur... I had to look at a calendar just to figure out how long it was. Those days passed as if time were swirling just as quickly as the gales of Charlie. The last week though has been characterized by a strange calm. The only real reminder of Andrew's treatment, his daily shot, passes quickly because it is done by a friend who is a nurse. When I come home from work I am met by three children running to me screaming my name. Pillow fights and wrestling matches occur with frequency. Meal times are governed by the noise of three kids competing for their time to talk. It feels right, but it feels wrong. It feels like the eye.

When the eye of a hurricane passes over it provides the opportunity to come out of hiding and appraise the damages, knowing of course that more will come. This last week has allowed that as well. The damages though aren't what I would have expected. Apparently my heart has found new and creative ways of struggling with these trying circumstances. As an example, Jess wrote yesterday of the many blessings that we have received over the course of the last month. As I have had time to breathe I have realized that these blessings have caused no small amount of disruption in me. To put it frankly, this kind of care really messes with me. When two people show up at my door with a gift of a new bed that has nothing to do with my child who has cancer but is simply a gift of love to those that are hurting, I want to run out my back door. When people I've never met, in a state I've only been to twice send me cards saying that they are praying for us daily and want to encourage us, I don't want to read them. When people who make far less money than I do give of what they have to us because they want to help us, I want to find something else to talk about. When I hear reports of people talking about the impact of sermons that I preached that were under-prepared, I want to bury myself in some escape from reality. The truth is hardly difficult to grasp, I can't deal with gratuity, with care, with love.

Honestly, I'm far more comfortable with trial than I am with blessing. I know that sounds counterintuitive, but it is true. In trial I feel a sense of control even if it is only the control of expectation. In blessing though, especially in the blessing of the last month, I am completely taken off guard. I have assumed for most of my life that people stay around me because they find me useful; I offer something to them. Gifts or care then becomes a kind of business transaction; I receive something when I have been especially useful. Right now I am of no use to anyone. I have cut back on my workload, I am less available to friends, my mind seems to always be clouded, not allowing me to formulate thoughts well; in short all of the ways that I have traditionally seen myself as valuable to others have been taken from me. Yet, at the same time, gratuity comes.

Yes, one might say, but you have a kid with cancer. That is true, but you wouldn't know it right now. This means that, along with the desire to flee the grace we are being shown, I also feel a tinge of guilt. Will someone read our posts and say, "It doesn't seem all that bad. Maybe they exaggerated the situation."? In reality there are many kids, even in our area, who have a worse prognosis than Andrew, some that are struggling far more than us. Will people see this and suddenly leave or withdraw their care? If you knew my story you wouldn't think that was so crazy a thought.

All this is really to say that the one of the biggest areas of struggle during this time of relative calm has not been chemo side-effects or the stress of pastoring a new church along with being a cancer parent. What I am struggling most with right now is love. I find myself asking the question, "Can you receive a gift, unearned, given simply because someone loves you and sees you in distress?" Great question... I'm not sure... it's hard. But then, that isn't just a Gilmartin question; I suppose it is a human question. I'd be willing to bet I'm not the only one who struggles with receiving, truly receiving, a gift. Our pride and our fear want to claim that we've earned it. That way we can claim credit and take control; if you know how to earn something you know how to get it again when you want it. But if we really wrestle with gratuity then we have to move from a posture that reaches up to grab to a posture that opens our hands waiting to receive. That, friends, is terrifying.

I guess all that is to say that this period of relative calm, this eye that we're living in right now, has opened my eyes to how scared I am. I already knew I was scared of Andrew's cancer and the repercussions of it. Now I see that I am also scared of the love that we're being shown through this. I'm scared that it isn't real, scared that it will suddenly disappear, scared that there are expectations on me that I don't know... pretty much all the things I'm scared about when it comes to believing the Gospel. Next week at this time Andrew will begin his second cycle of chemo and the winds will begin to howl again. Until then we'll just have to keep wrestling with life in the eye, trying to enjoy what we have been given instead of looking to what is coming.

Mercies are New Every Morning

2010-01-20T15:23:00.000-05:00

I thought I would take the time to share both the blessings that have flooded our family during this time and also the prayers that we still are praying. Thanks for following our blog and for loving us so well through this tryimg time.
Over the past few weeks I have learned in a new light the meaning to "mercies being new every morning." Each day brings about stress and questions as well as many answers to even the smallest details. God has carried us through each day and lavished us with surprises and blessings of love. As I was rocking Andrew before I put him in his crib the other night, I kissed and just said, "We made it through another day and God's mercies will be new in the morning." He helped us that day and will help us tomorrow no matter what may come. Here is the brief list of some of the amazing blessings!!
*Andrew's health right now....his eating, sleeping, playing, and basically seeming normal
*Luke- sleeping through the night in his new crib in Andrew's room
*Madi- doing great in school/ wonderful friend that is willing to help her with her therapies while mom is "out of comission."
*Becca-has been offered a complimentary Musikgarden class and transportation to and from
*Nanny and Papa- retired grandparents that selflessly give up their time, energy, and resources
*Aunt Robin-selflessly gave her time and energy to come stay with us these past few days/adores our kids
*an IV nurse who happens to live 2 streets over from us that comes over every night to give Andrew shots, draw his blood, take it to AMC, and help with our questions and concerns
*a mom of 4 that I have never met who willingly makes two meals for us, drives them to our house, and spoils my kids with AWESOME craft supplies
*meals from friends
*people that clean my house better than I do at times
*a surprise of a wonderful pillowtop mattress and boxspring that showed up at our door because someone had heard we were in need of a comfortable nights' sleep (it is AMAZING for two exhausted parents)
*unexpected money and gift cards
*friends from church that know cancer, cancer research, side effects of chemo and ways to prevent them in Andrew. Their time, love, affection, and pursuit has humbled us
*a friend that gave up her comfortable bed to have a slumber party with me in the hospital room
*friends that kidnap me for coffee
*emails of encouragement and support
*hats for Andrew
*transportation to the airport for my mom and to the hospital
*friends that are willing to babysit Andrew so I can go to church
*a nurse from Grottoes that works on the 7th floor of UVA hospital
*Grace Christian families that have been amazing
*our dear babysitter Ash, who took our girls last Saturday and spoiled them with dress up clothes, the Little Mermaid, library time, lunch and love
*a sweet doctor that was willing to do a house call to check Luke's ear's for infection
*phone calls from old friends-their pursuit and reassurance
*the Gilmartin Assistance Army and the "GENERAL" who rocks my world

--These are just some of the ways our family has seen the Lord through this trial. We would love for it to be over and go back to "normal," but if we have to keep walking this dark path it is wonderful to have friends and family that remind us our Shepherd is still by our side. Thank you to all who have cared, prayed, called, emailed, and shared your lives with us. You are NEVER bothering us. We love to hear from you and thank you for just allowing us to be who we are through this. It has been so freeing and comforting to know I can be at my weakest and still not scare you all away.

As you know though, our journey with cancer continues. We have another week at home and then we check back in on the 28th (I think) for round 2 of chemo. Andrew has done well with this round, but the next one may be worse because his body will be more tired. Please pray for the side effects (hair loss....a mother's heart as I watch this happen, mouth sores, sickness, fatigue, and anything else that may rear its ugly head). Pray for our time as a family that we can love on one another often and forget the things that don't matter. Pray for the girls as they prepare to have mom and dad away again. Becca is already anxious if Rick and I just go out for a soda. Pray for caregivers while we are gone and a short time away from home. Pray that Andrew doesn't get sick in anyway and have to return to the hospital. Please pray that a miracle might happen and we would only have to do a few chemo cycles and nothing else. It could be possible. Pray for sleep and peace for our hearts and bodies.
Please also pray for other decisions our family has to make on top of the cancer decisions. We are trying to shepherd our girls' hearts through this time. Their fears are real as they wonder how Andrew got sick, if they will get sick, and if mom and dad will leave again. We need wisdom to give simple, yet meaningful answers to their questions and concerns. We are also dealing with discipline issues as they have had several caregivers and a world thrown upside down. Rick and I want to be consistent, yet also full of grace knowing that their stress is real too. The last thing we are praying about, and covet your prayers, is schooling for Madi next year. Right now she attends Grace Christian School for pre-K. She loves it, her teacher, and her friends. We have seen her grow in ways that she would never have grown at home (socially, emotionally, godly) and feel like this would probably be a great situation for her next year. However, with the medical bills that are beginning to come in, we are not sure we will be able to pay for private school for her and/or Becca who will be in preschool next year. We are trying to decide what would be the best for the girls. Madi will need some therapies for speech, OT, and PT in the months to come so that will be a cost consideration. We don't think that home schooling is the best for her at this time or for me with all we are still involved in so public schooling is possibly a consideration. Anyway, please just pray for wisdom, direction, and guidance during this time. Each child of ours has specific needs that we want to meet the best we can although we know that during this time we will all have to sacrifice. We need the Lord's guidance to help us with all these decisions.
We love you all and will keep you updated on the next steps.

A Brief Update

2010-01-19T06:23:00.000-05:00

Because it has been some time since we've posted I wanted to just update everyone on how Andrew is doing. Much of the reason why it had been some time since we've written is because things have been going really well. We're beginning day 12 of his first chemo cycle. The last few days have seen a wonderful return of Andrew's energy, appetite, and personality. It has been beautiful to watch. The Lord has been kind to us in that we haven't yet had to even flirt with taking him back in because of fever. His blood counts have dropped as expected but the nurses think we still are a day or two from his lowest. If everything keeps going as it has we will begin cycle two on Jan 28th.

Another entry will come soon. There is much to talk about but finding the time is difficult. Thank you all for your thoughts an prayers. We are humbled by so much care and concern.

A New Normal

2010-01-16T14:01:00.001-05:00

As I write this, Andrew is sound asleep in his pack and play in our room. That is the one of many changes that has taken place over the last few weeks. As a parent before the children are born you make lots of statements about how you will raise your kids and things they will never do. My child will not watch tv until age 5. My child will not have soda or stay up past 8pm. My child will sleep through the night by 8 months and not end up back in our room. Well, over the past few weeks all of those statements have blown away in the wind. We are giving Andrew anything to boost his weight gain and give him energy, including M & M's for breakfast or ginger ale in his sippy cup. We have allowed him to watch movies with us until 10pm when he is scared in the stark hospital room. And his pack and play now resides in our bedroom right beside mommy and daddy. We decided it would be easier if he needed us in the middle of the night. So Andrew is now sound asleep in his crib with his Mickey Mouse.
The last two days have been interesting. I have tried during many parts of the day to wrap my arms around a new schedule or daily plan. There must be some consistency or regular behaviors. However, as many of you know with kids alone, plans change. With a little guy with cancer things change CONSTANTLY. Andrew seems to have great mornings full of food and Candyland game playing. Today we even took him out to Target. He is on day 10 of his chemo cycle and the doctors thought this would be his lowest time. So far he still seems to keep going. Part of me is wondering if we haven't reached this low point and another part of me smiles because I think it is your prayers. Andrew had a pillow fight with Rick, read books with his Nanny, and enjoyed playing Little People in the playroom. It has been a good day. A day that might urge my actions and thoughts to return to "normal." Maybe this isn't that bad I think. I can handle this. I can clean my own house. I can make my own meals. I can be a mother of 4, right? However, after thinking those thoughts confidently a large part of me sinks. I still have a little boy with cancer. It isn't gone. The road is hopeful, but not over. If this afternoon is like yesterday it might be filled with crying from all parties here at home, stress, and discouragement. Our battle is not won yet and the cancer is not gone. I love schedule and routine. I am seeing how much of every part of my day is planned. I know when I will do chores, make phone calls, bathe babies, snuggle and have couple time with Rick. But now, I have no idea what the next hour holds. I try to enjoy each minute while at the same time feeling anxious about what is about to come. Will I be able to handle it? Is it okay that I am not "up to par?" Am I am burden to those that so willingly want to serve us? It is hard and the struggle is real.
I think some of the hardest things to get used to in this new normal are the feelings of numbness. Shock that this is happening. I am numb with gifts that are given. I am numb with great periods of time we have as a family. I am numb about what is in the future. I want to be elated or joyful or hopeful but the weight of this experience can just numb me. Sometimes I even appreciate the sadness and fear that remind me I am still living and walking through this.
We are doing okay. We are on day 10 of this chemo round. So far Andrew hasn't gotten sick and needed to go back to the hospital. We have had amazing help from family and friends with meals, cleaning, childcare, and love. Each day brings its own challenges and needs and I am learning and that is just the way it will be for a while. I will be needy and weak and not able to pull myself back up. I will need people to carry me and remind me often that we are not alone and there is help. I will need others to remind me in the darkness that God is still in control and not disappointed in me because I can't help Madi with her speech therapy or spend hours each day with each child. It is a very new place for an extraverted, organized, type A personality to be. But the Lord is showing me that this is where He wants me to be and possibly remain. Our lives are not our own. He alone plans each day and can change all of our schedules if He so chooses. I am learning to hold my hands loosely around my family, friends, time, pleasures, and each moment. This is our new normal.

Glimmers of Grace

2010-01-14T20:50:00.001-05:00

This morning I began writing a blog entry about chaos and the futility of trying to tame it. I didn't finish it before Jess and I packed up Andrew and headed to the hospital for his first scheduled clinic visit and the MBIG test. The MBIG is a scan in which an isotope is injected into the blood stream which apparently can make cancer light up like a Christmas tree. It is the final diagnostic tool and at this point probably more of a base line marker for future tests than anything else. Long story short we spent the better part of the day in Charlottesville and, when I returned to my writing, I found that I couldn't finish the entry I began, I was just not in that place any more.

Over the last few days I have struggled with my powerlessness to help my son who hasn't really been able to keep much down, my inability to spend adequate time with my other kids who are still feeling the lack of attention of the past two weeks, my lack of answers for my wife who is seeking them, and what seems like the impossibility of keeping any sort of mental focus while I'm at the office. The more I tried the worse things got. It was as if I heard the words of Princess Leia in my ear, "The more you tighten your grip Tarkin, the more star systems will slip through your fingers,"... except my name's not Tarkin and I'm talking about day to day life issues not conquering the galaxy, but you get the picture.

Those who know me well know that one of the consistent ways in which God presses upon me is in showing me my finitude. You know, that little attribute of ours that says that we are only creatures, that we are limited. Yeah... I hate that one. This week has done nothing but bring that into living color. Add to my own struggles the string of miscommunications and lack of communication from our doctors in regards to medications to combat Andrew's nausea that clearly haven't worked and you get one stressed out dad. Last night I felt as though I was trying my best to rope a whirlwind and it just kept spinning out of control.

Tonight I feel different. On the one hand that is circumstantial; the docs gave us some clearer plan with Andrew's nausea and it has worked. On the other hand some of it is relational. Andrew's MIBG test was a two hour procedure in which he was sedated. For cancer parents that means you have a babysitter and we took advantage. My wife and I sat and ate lunch together and talked some about business and some about nothing at all. Then, seeing that we still had plenty of time and the warmest day in weeks, we decided to take a walk around UVA. It was a wonderful gift. The chaos was still going on but, in the midst of it, was the place of repose. It was like sitting in the eye of a hurricane and having a picnic. For some reason that I cannot quite explain I left that time more comfortable with my finitude, more at home in my creatureliness.

I suppose if I were to be pressed for an answer I would say that, on an experiential level, the Gospel was preached to me today. What is the Gospel if not the message that, because of the work of Jesus, the shalom of God can break into the chaos of our fallenness and that it comes not as a wage to be earned but a gift to be received? You see my sense of chaos wasn't all based on our situation. More than the situation, my panic at the whirlwind came because I knew that I could rope it, that I should be able to rope it, but I couldn't. I wanted to be more than I was, a creature dependent on Another. Today my wife and I received the gift of rest and we weren't drawn out of the situation, a kind of gnostic escapism, but instead the rest came to us in the midst of the wreckage around us. That, in a very real sense, is the Gospel. Jesus comes into the wreckage of our lives, wreckage often created by our own resistance at being dependent, and gives the gift of rest to the weary, pardon to the guilty, strength to the weak. This gift though is not just some experience, a kind of existential warm fuzzy. This gift is his very life and death and resurrection. Because of this gift, its ok to be finite. If the Gospel is true then I don't have to wrap my arms around every whirlwind because the chaos won't win. Right now I believe that... right now.

When Andrew came home he ate two pancakes, some cucumbers, and a cupcake and a half (sorry the food pyramid goes out the window when you are trying to get your kid to get as many calories as possible without hurling). After dinner we all sat around the living room reading and playing... Andrew even won at Candyland. In the midst of all the chaos of this week some shalom broke in. I can't speak for tomorrow but tonight I was willing to receive that as the gift it was, the gift of the glimmer of grace.

An Open Letter to Monday

2010-01-11T21:12:00.003-05:00

Dear Monday,

It is no secret that you and I have had a tenuous relationship at best. At times I am excited to see you arrive and at other times I rather dread your predictable routine. I feel bad for you really it must be difficult to be so unloved by so many, the object of ridicule and disdain. When we met today I really wanted to be glad for your arrival, as if your coming would bring memories of better times back. Alas, it was not to be.

To be honest it really isn't you, its me. Everything I normally enjoy at your arrival I just couldn't. From the morning spent reading to time in the quiet stillness of the office, none of it had the same feeling of order and comfort it normally does. In truth, the safety you promised me in the return to "normal" felt wrong. I don't like making accusations but I have to say Monday, I really feel lied to. You promised me the intellectual stimulation of quiet reading time but I ended up reading the same paragraph over and over my mind always drifting away before I finished it. You promised me the escape of my office, a worthy distraction from the tears of life but there I found my heart longing to be home and the tears flowing anyway. This is of course without bringing up the uncomfortable event at your first arrival; you had promised rest for Jess and me but there we were in the same place we were at when Sunday arrived holding a sick boy. If we are going to have any kind of relationship, you and me, I really need you to deal more honestly with me. The false promises simply must go.

You know though Mon, may I call you Mon? You know it wasn't all bad. There were a couple of things you showed me throughout our visit together that I had never really seen before. Do you remember when I called home from the office and I expected to hear panic and fear on the other end and all I heard was courage and calm? If you hadn't come I wouldn't have seen how much Jessie has grown through all this; how she continually surprises me with the strength of her tenderness and the audacity of her vulnerability. Or, do you remember when Margie came by to give Andrew his nightly shot? If you hadn't come I wouldn't have seen how he can be afraid of pain and yet still find rest in my arms or how he can carry the burden of this illness with so little complaint and so much dignity. Then there was that time when Madi tried to comfort Andrew during dinner because he was crying. His weariness and his lack of appetite were combining to create quite the meltdown but there was his sister trying her hardest to comfort her hurting brother. Then there was that picture I had when I came home of Becca playing Candyland with Andrew and upset when she won that Andrew couldn't win too. Yes Mon, if you hadn't come I'm not sure I would have seen how proud I am of my family. They are responding to this nightmare in ways I couldn't have imagined.

I'm not sure where that leaves us... perhaps somewhere between tolerated necessity and respected adversary. I do hope that your exit tonight is a quiet one, that Andrew will sleep through it without any more... unfortunate episodes. My heart hurts for him when I see him so sick. What would be great is if you could leave completely unannounced... is that rude to ask... without even a whisper. You see we're so tired here; tired physically, tired emotionally, tired spiritually, that I'm not sure we'd do well being awake for your departure. I'll just say my goodbyes now if you don't mind... it'll be easier that way.

I will see you next week. Lord willing our meeting then will look completely different... in a good way. Truthfully I don't know what to expect, which is one of the hardest parts of this whole thing... the unknown is scary you know.

Sincerely Yours,

Rick

p.s. for those praying, please pray that Andrew will sleep through the night without being troubled by any more nausea and that his appetite would return as well as any other side effects of chemo. We're nervous that too much weight loss will result in the need for a feeding tube. We are thankful for your prayers.

On Being Loved

2010-01-10T14:18:00.001-05:00

Last night was tough. For some reason Andrew's anti-nausea medication was given to us in pill form. That isn't such a big deal during the day, but how do you give a kid who needs meds every four hours to keep him from getting sick a pill when he's asleep? The answer of our nurses while we were in the hospital, "Just let him sleep, he probably won't need it." They were wrong.

At about 11:30 last night (roughly an hour and a half after he should have gotten his next dose of medication) Andrew woke up crying. What came next I won't describe only to say that there was clean up involved and holding a scared little boy. We felt many things, fear over what to do, panic over how to get an anti-nausea pill in the stomach of a child who is extremely nauseated, frustration over the fact that even our oncologist thought it strange that we hadn't been given IV Zofran, and exhaustion since yesterday was so intense in so may ways. In the midst of the weariness and confusion though something else cut through. As I sat there on the edge of the tub holding Andrew what cut through all of the fear and anger was love. As Andrew looked up at me in some state of half sleep all I could say was, "I'm sorry. I'm so sorry." In that moment my fear didn't matter, my frustration didn't matter, and certainly my lack of sleep didn't matter. I suppose what I am saying is that at midnight last night the heart of this father was captured by another, a son who was suffering and didn't know why.

Eventually, like most children, Andrew wanted to return to his mother's arms. It is a valuable lesson in how each gender uniquely reflects the image of God that kids will normally seek their mother for comfort and nurture and their father for protection and shelter... I digress. We crushed a pill into a teaspoon of water and it was quickly swallowed. Shortly thereafter Andrew fell asleep there, being held by the arms that first held him as Jessie and I looked at each other and grappled with the new "normal" we were living in. We laid him in bed and found our way back to our place of slumber pausing only long enough to set an alarm for 4:20am... we didn't want this happening again.

This morning, while all this was still bouncing around in my now very exhausted brain, we set about the task of preparing to get as many of us as possible to church. Given Andrew's night we were not sure what was in store for today except that the girls would come with me for Sunday School (I preached today) and Jessie, her mom, Andrew, and Luke would follow later if everyone was feeling up to it. I honestly didn't expect to see them.

After several mis-starts, which caused me no small amount of consternation, the girls and I were on our way. The morning hadn't gone as I'd planned; we were late out the door, I didn't get to review my sermon at all, and I was wrestling with the probable disappointment of not seeing my family, whole again, and worshipping together. Like many Sunday morning trips to church the drive consisted of repenting to my girls for being short and grumpy with them (the outgrowth of said consternation), and praying desperately for the service. Among the many things I prayed for, that my family would be there and that we would see some first time visitors (a group we haven't seen much of over the holidays).

To make a long story shorter, not long before the service was going to start I turned to see a beautiful sight, my bride carrying a blue eyed boy, thumb in mouth and blanket in hand. I want to take a minute at this point and simply praise my wife. I'm not sure if anyone will recognize the amount of courage it took to walk through those doors. Despite the assurances of our doctors that large group gatherings are fine so long as people keep their general distance, the lure of a safe, controlled environment like home is a siren's song difficult to resist. There are less variables at home, less chances for things to go wrong, and yet they came. It may seem like a small thing to some, a foolish thing to others, but I see amazing courage in my wife to look her fears of being out of control in the face and tell them they won't have the last word.

As we began the service I watched as the seats slowly began to fill... it seems no matter how late you begin 10 minutes later is always a better time. I noticed some movement out of the corner of my eye and turned to see two people I have never seen before come in and sit down. I looked down and immediately began to cry. I will be the first to admit that my prayer life leaves a lot to be desired and many times it takes a whole lot of effort to simply believe that what I am saying is being heard beyond my drywall. It has been a rare thing in my spiritual life to see immediate answer to prayer, though perhaps I should say it has been rare for me to recognize immediate answer... you decide. This morning, as I cried the one thing that was resounding in my head was simply this, "You love me Jesus, you really do."

Now I'm a pastor and so that would seem to be a pretty elementary principle, and in terms of concepts it is; in terms of experience it is not. This morning I was confronted by a God who knows that I am struggling, tired, weak. This morning I was confronted by a king who understands my feelings of helplessness, of stress, of chaos. This morning I was confronted by a Father who grasps the sight of a son who hurts and wants him only to know he is loved. Because of my own stuff, the strange mix of ugliness and beauty in my story, I have often (always?) understood God in various degrees of angry. At my best God tolerates me because I tricked him by wearing my "Jesus-suit" so that he really sees Jesus and not me. This morning I saw something more. This morning I saw a Father who knew that I was stressed over lack of preparation for my sermon, afraid of having to take my son back to the hospital because he won't eat, sad because my life will never be the same, and knowing this wanted to give me a gift. It wasn't a huge gift or one that would be readily recognized by anyone else. Nonetheless it was gift so personal to where I was living this morning that I couldn't miss it. It was a gift that said to me what my weak words tried so hard to say last night,
"I'm sorry that you're hurting. I love you"

Pinch Me

2010-01-09T19:55:00.000-05:00

Well, it is 7:40pm and all our children, ALL our children are in bed. We were able to bring Andrew home today and that has been a wonderful experience. He woke up this morning and smiled at me when he saw me. I said, "Guess what? I have a secret. You get to go home today!" He smiled real big and said "okay!" His mood was a little lighter today and he ate a little bit more. He finished his first round of chemo at 12ish and we were on our way at around 2. Rick had to take a load of things home and pick up Andrew's carseat before we left so he also got to share with the girls the news we are coming home. It was a great farewell to that hospital.
We arrived home and Andrew immediately ran over to his toys. He played with his sisters and gobbled down some more goldfish and water. I just sat in the midst of the interactions and got teary. We were home. Pinch me...we aren't in a hospital room waiting on nurses or eating cold pizza. My boy is curled up asleep on his sesame street sheets with his nightlight and Mickey Mouse in his arms. And for the most part, this is how it will stay tonight. We may have some early risers or a baby that decides he needs to eat again. But tonight Rick and I will sleep in the same bed, under the same roof with our kids. It feels a little overwhelming.. another miracle.
The funny thing is, as wonderful as this is, it is still scary. We are not sure how long we will be here without fevers or complications. Our son still has cancer. It is not gone and although one treatment is done, we still have others to face as well as the side effects. He is so sweet with his siblings and with Rick and I. He just watches, plays and cuddles. His little body is working so hard and fighting for his life right now. I love being home, but I am a little scared about the next step. I hope all things go well and we don't have to check back in until the 29th, but this battle continues to be a one day at a time. We still have to change his diapers with gloves on. We still have to give shots and medicine to keep the nausea away. We still have to bribe him to eat so a feeding tube isn't in the future. And some of our library books are about hospitals and siblings with cancer. It feels like home but things are different. I still struggle with believing I can make it one more day. I still want to rush downstairs and put everything away that we brought home because what if we have to go back tomorrow. I still pray that God will have mercy. However, I cling with my fingernails again tonight that God loves us and will continue to carry us tomorrow. He did today. And He worked another miracle...He brought Andrew HOME.
Please continue to pray for several things. Many of you, like ourselves thought for sure Andrew would only have to have 4 chemo rounds. That may be the case, but we are still waiting on one more lab from the biopsy. If this comes back positive we will have to do 8 rounds (because of the shape or something with the tumor). If it comes back negative, then 4. Please pray for 4 rounds of chemo. Also pray for the side effects of this awful poison we are pumping into him. So far he is just not hungry and a little sluggish, but other than that it is okay. The doctors believe this round might be fine b/c he is so healthy but as time goes on and his body weakens, then things will get harder. Please pray for God's mercy with those side effects. Pray also that his appetite and thirst will come back. We can give him a day or so and then we need to be a little worried. They mentioned feeding tubes and things like that if he can't keep his body weight up. All things a mom worries about. So please keep the prayers and love coming. We will keep you updated.

Cycle 1, Day 1

2010-01-07T21:52:00.000-05:00

It is a strange feeling to watch a health professional hook bags of poison up to your child knowing that it is the only thing that can save him. Technically I know not all chemo is "poison" per se. This evening a very knowledgeable friend explained exactly what some of these medicines do. I couldn't repeat it if I tried... not the kind of knowledge that I play well with... but I do understand it. At the same time I'm watching chemicals that, while shrinking this tumor in my son's chest can also cause significant harm to him, slowly dripping into the central line that now comes out of his chest and I'm feeling rather convoluted. On the one hand I am eager to begin, to see this disease defeated and to "move on" with life (whatever that means). At the same time I want to wait as long as possible to begin because I don't want my little boy to suffer. Yesterday evening and this morning I finally began to see my boy return with his playfulness and energy and now he's back to grumpy and lethargic... the roller coaster continues.

All that said Andrew did great with his first day of chemo. He was tired this evening and relatively grumpy but other than that no major side effects. I suppose the great news from today was just the fact that we will go home on Saturday evening. I'm not sure I've ever longed for home the way I do right now. I don't just mean my house, though sleeping in my bed is a plus, I mean my home. I want my home back where I wake up in the morning to a five year old coming down the stairs at an ungodly hour. I want my home back where right before I take the girls downstairs for breakfast we hear "Get me UUPPPP!!!" coming from Andrew's room. I want my home back where when I come home from work three little voices come running through the kitchen screaming "DADDY!!" I want my home back where my wife and I struggle with issues like potty training and discipline not white blood cell, hemoglobin, and platelet counts. I guess what I am longing for is the glory of the mundane, that same thing that at times can drive me crazy and yet feels like a warm blanket. Now I find myself wondering in darker places whether that glory will ever return.

I suppose there are two options you are faced with when you experience the disruption of the sanctity of your personal Eden; you can either despair and grow angry, covering yourself in cynicism which really is just the inbreeding of rage and paranoia, or you can see that this disruption should be pointing you toward an Eden too great for you to create. When I say I long for my home the reality is that I see that mundane now through glasses that are forever rose colored, like a stain that you can't quite get out. Life, pre-cancer (PC) will always be idyllic and serene, like a flip book of Hallmark cards or an endless gallery of Thomas Kinkade paintings. In reality though what I see through those glasses is not life as it was but life as I longed for it to be, life as I still long for it to be. I long for a life where love and fellowship within my family is not broken by my anger or my kids' selfishness, or my wife's fatigue, or cancer. I long for a life where relationship is always fulfilling and nourishing and where futility is nothing more than a Scrabble word. The problem is that I can't find that world by looking back, no matter how long I look through those glasses stained red by the pain of Andrew's cancer. I can only find that world by looking forward.

In saying that I don't mean that after Andrew's cancer is in remission that life will attain to some Platonic form, an ideal that surpasses all shadows here. What I mean is that when all hell breaks loose in your life, you finally realize that what you really have been longing for is a world remade. I guess that is why faith in Christ is such a comfort in the midst of this. It isn't because Jesus promises escape from the pain of the world... he didn't try to escape it and doesn't promise to take his followers from it. It is because he promises to come and renew the world, to remake it without futility, without death, without disease, without strife, without painful relationships, without unrealized longings, without tears. Our faith sustains us not because we have an assurance that Andrew will be healed but because we have an assurance that this disease will not have the last word, that even death is not the final equalizer that it claims. There will be a day when even death turns backwards because there has been a day when it did, when Jesus turned even death inside out.

Cycle 1, Day 1 complete. Andrew is sleeping soundly. We are still clinging to Jesus. You decide which is the greater miracle.

The Shadow of the Fall

2010-01-06T23:00:00.000-05:00

"We live in the shadow of the Fall. But the Cross says these are all places where grace is soon to be so amazing. They may be unfulfilled. They may be unrestored. But when anything that's shattered is laid before the Lord, just watch and see it will not be unredeemed."
We sit in a hospital full of brokenness. Lives suffering with pain, disease, injustice, fear, and hopelessness. On our floor we can here little ones crying, equipment being pushed in and out of rooms to help bring life, and tears. Why do children have to suffer? How can parents leave their little ones for days by themselves in the hospital? How do I reassure my 2 year old son when he looks at me with his big blue, scared eyes that I didn't bring him here to harm him but to help him? The walls of this place close in on you. The cafeteria food gets old. And there are only so many shows on tv that can engage you. If I sat in this heaviness and brokenness I would go under. I would not be able to break free from all the evidence that we live in a fallen, sinful world. So I don't. I call a friend. I listen to music. I take a walk with Andrew in a wagon. I laugh with my girls on the phone. I even organize my food collection (my drug of choice as many of you know-organization). I feel a little lighter. I remember this journey may be trying, but I have One that has gone before me. I have a God who holds all these days in His hands and has plans to redeem His people from darkness. He loves me and He loves Andrew. There are times I think how could He let this happen to my baby, but I am reminded of all the ways He's spared him-his MRI was clear. His bone marrow was clear. His bone scan was clear and we have a chance to reduce treatment. True miracles. I hate that Andrew has cancer. I hate that I can't be at home doing my normal things with my precious family. However, I see miracles happen. Some say what miracles....he is not healed. The miracles of friendship, meals for our family, service beyond our imagination. The miracle of grandparents that are retired that dropped everything to come up here to love on our kids and provide as much normal for them that is possible. The miracle of marriage between Rick and I that has confirmed that I couldn't have married a more amazing, selfless man. The miracles of doctors, nurses, and staff that love my little boy well. The miracles of technology, research, and medical advances that will save Andrew's life. And the miracle that my heart can sit in the midst of this horribly, scary hurricane and hope. I hope in the God of the universe who not only made the heavens and the earth, but also knows every hair that has or will fall from my little one's head. He is still in control of every detail, redeeming his Creation. It may seem crazy, but it is true. I thank you all once again for walking with us. You, each and every one of you, are a miracle from God. Your prayers MATTER. They are making a difference in the test results, in our attitudes, and in our ability to make it one more day. Thank you and please don't stop.
We ask your prayers now for Andrew as he begins his chemo treatment tomorrow. He will start around noon and be on and off for about 3 days. We are hoping he will be healthy enough to come home on Saturday.Please pray for the side effects of the chemo, his sickness, his little spirit, and our endurance through this round. We also ask that you would begin praying for his time at home. We want that time to be normal and comfortable, but also a place free of germs and reasons for him to be sick. We want to be home as much as possible and if he spikes the slightest fever, we are back in the hospital. Thank you for your love and support. We will keep you updated!

A Message From the General

2010-01-06T11:09:00.000-05:00

Most of you who read this know that I am the pastor of a church plant in the city of Staunton, Virginia. Previous to being the organizing pastor of Holy Cross PCA I was the associate pastor of Tabernacle PCA in Waynesboro, Virginia. Over the last two weeks as we have gone through this these two churches have risen up and supported us in ways that I never could have dreamed of. We have not had a need that hasn't been met, some that are met before I'm even aware we have them. For all of you who are a part of this you have our deepest thanks.

The person who has been coordinating the effort for us is Janelle Elliott or "The General". This morning Janelle asked me to post a link for those of you who might not know her or either of these churches and yet might want to be made aware when we have needs. Apparently there is a website that functions as a central hub to coordinate these kid of things. Janelle has set up a page for us that she intends on using from here on out. If you are interested in helping, this is the link http://www.lotsahelpinghands.com/c/621254/.

Again thank you all for your thoughts, prayers, and support. The Gospel is being made visible to us through you all as God cares for us through you.

New Tears

2010-01-05T23:08:00.000-05:00

I had just gotten my laptop and books unpacked unto the cafeteria table and had begun the futile attempt at working again. 7pm is a strange time to work on a sermon for me but in this strange world you take the minutes you can get. Tonight however it was not to be. The call came rather unexpectedly. On the other end, my beautiful and strangely chipper wife. "Doctor Waldron is here," she said. "He says he has news." I don't remember what my response was, something like, "I'm on my way," and I folded up my phone, chuckled to myself at the ridiculousness of carting my Greek New Testament and three commentaries around a hospital cafeteria, packed them all up, and darted for the elevator. This was news we had been waiting all day, if not all week, for.

I arrived to find that Dr. Waldron had left to see another patient to give me time to return... once again hurry up and wait. Ten minutes later he walked back into our room, looked squarely at us... or at least as squarely as one can look at two people sitting three yards apart... and in the most understated way possible said, "Andrew's bone scan came back completely normal." I say understated since this was the last of the tests, the final piece of the puzzle that we had spent the last NINE DAYS in the hospital trying to put together, and yet his delivery of this particular piece of news came with all the flair of limp trout. We would later find that Dr. Waldron had had this information for some time and had forgotten that we were not aware of this critical piece of data. Perhaps it would be best if I further explain the gravity of this night for us.

When we woke up this morning we knew that Andrew had, at least, a stage 3 neuroblastoma. This cancer so far was contained in the tumor that resides on the right side of my son's chest running from right below his collar bone to the beginning of his diaphragm. The MRI had confirmed that all his organs were normal, the bone marrow biopsy had confirmed that his marrow was clean, there was just one last place that the cancer could have spread... his bones. To further complicate matters, after Andrew had his chest tube removed he came down from his Fortress of Solitude, also known as his hospital crib, with a roaring vengeance. He ran, he jumped, he did all those things that for five days had been denied him by his parents and his pain. The problem was shortly after coming down he began complaining of pain in his left leg. For the last two nights the pain has been enough to keep him... and us... awake off and on all night. The hospital staff could not find a cause for this pain; two year olds apparently don't pull muscles or tweak ligaments. The nagging shadow of doubt for everyone involved was that it was possible that the cancer had spread to his leg and was now presenting itself.

We dropped Andrew off at his bone scan around 2:30pm (when it was scheduled for 12:30pm) with much fear and trembling. If the cancer had spread to his bones this would not be a stage 3 cancer any more but a stage 4 and high risk. High risk neuroblastoma does not have a good survival rate and the treatments would be longer and more difficult. Thankfully that will not be our road.

Andrew's cancer is a stage 3 but it is in the intermediate risk category which has a close to 90% survival rate. What's more is that Andrew qualifies to take part in a Children's Oncology Group study. Apparently there is a whole lot that we have yet to learn about this particular type of cancer since it was discovered relatively recently. One of the realities is that oncologists believe that they have been over-treating some patients, especially in this intermediate risk category. Being a part of this study means that, instead of going through 8 cycles of chemo (roughly 8 month's worth) Andrew will have 4. At two months they will evaluate to see if surgery is an option and then operate and then go through with the rest of the cycles. If it isn't an option yet they will finish the cycles and then operate. Either way we just saw our boy's chemo time cut in half! The last phantom had been revealed. The last shadow had finally been dissolved in the light of knowledge.

When Dr. Waldron left I grabbed my wife and began to weep. These were different tears than before though; they were tears of joy, tears of relief, tears of thankfulness. These were the first happy tears I had shed since this whole terror began. As my shoulders shook and my arms automatically clung desperately to my wife I felt so much of the stress of the last week work its way down my cheek and onto the floor. the only words I could muster, "Thank you."

That is a "thank you" I'd ask that you all share with us. It isn't a thank you to some nameless vacuum or faceless force, but a thank you to the Lord and Giver of Life, the One who rules over heaven, and earth, and the grave. This is a thank you for sparing us... for sparing my boy... the full weight of this disease. I know in my head and even in my heart that no matter what the outcome had been to this test, God is good. I can tell you though that tonight I want to shout that truth from the mountaintops! I feel like Christmas has finally arrived... or better, like Spring has finally come to Narnia. We have been given a gift, one that we didn't deserve and one that others did not receive. I don't know why, and quite frankly I don't care. When you have been given such a gift you don't sit around and wonder whence it comes and why to you; you simply fall to your knees, open your empty hands, and say "thank you Lord."

This is not all to say that our road from here will be easy, it will not. We will still wrestle with the weight of this "medicine" we call chemo and its effects on our son. We will still have to make sudden trips to the hospital because he has spiked a fever. We will still have to rearrange our lives around a disease that should never have been a part of God's good creation. Tonight however we were given the gift of hope. The hope of less struggle, less pain... more... the hope that there is Another who fights for us. That is a gift whose worth is beyond imagining and one that I will relish for some time.

Yes, We can call our house Florida

2010-01-04T22:18:00.000-05:00

I must add not only serious, real blog entries, but also the funny ones to keep you smiling.
I was home Sunday evening for my birthday and spent the night in my own bed. I awoke the next morning to Madi climbing into bed to snuggle with her mom and Becca's feet walking past to greet Nanny in the kitchen. After my shower, I went to sit in the dining room with Becca and Madi while they played with their princess castle.
The girls began asking lots of questions about Andrew and the hospital. They wanted to know where he was and if he was better. They wanted to know where the lump was in his chest and why it hadn't gone away. They had some wonderful thoughts and questions to ask me.
Finally Becca said, "Mom, are you going to have to leave and go back to the hospital today?"
I said, "Yes, but I will be here for breakfast, taking Madi to school, lunch and some of your naptime."
She seemed okay by that but a little disappointed that I had to leave. So I told her, "Becca, you know the great news about all this? Nanny and Papa get to move in with us. It will be like this is their house for a while. Won't that be fun?"
Becca smiled and looked at me and said, "Mom, can we call this house Florida? (since my parents live in Florida)"
I smiled back, hugged her and said, "Yes, we can call this house Florida!"

For those praying

2010-01-04T21:07:00.001-05:00

Greetings blog-readers!

I'll take a break from the existential angst of cancer parenting to pass along a prayer request and update.

Andrew got his chest tube out on Saturday and immediately began running around like a crazy man. Unfortunately we think maybe he strained something or hurt his leg somehow because now he is complaining about pain in his leg and favors it a little when he walks. X-rays were all negative and our oncologist does not think it is connected to the cancer at all. Other than this the little man is doing great right now.

Tomorrow is Andrew's bone scan. This is a procedure to see if the cancer has spread to his bones. This is the last system to check. His bone marrow biopsy came back today and was perfectly normal. Along with the MRI results and the genetic test, all tests so far show the cancer is contained in the tumor. If the bone scan comes out clean then Andrew will qualify for a study in which intermediate risk children are given a different regiment of chemo which involves less chemo. We are asking that you all pray that this scan would come up clean. Dr Waldron (the head of pediatric oncology) does not believe that we will find any disease in Andrew's bones. That is good, but it is still an opinion. Please ask the Lord of life, our Great Physician, for the grace to see a clean bone scan. This could mean a significant reduction in our treatment time.

Re-Experiencing

2010-01-04T14:14:00.000-05:00

This morning I spent some time communicating the news with some folks that I realized that I hadn't told yet. As I did I found that the experience of telling people is a lot like reliving the events of the last two weeks. I suppose that is part of why I am thankful Jess talked me into setting up this blog. No offense, but I'm not sure I could take having the same conversation 1000 times... it is too emotionally taxing. Apart from this however this morning was full of a new feeling for me, anger.

When Andrew and I woke up for the morning (I say that because we "woke up" several times last night and early this morning including one visit from a pediatric neurosurgeon who came to do an evaluation on my two year old at what must have been 4-5am) I found that my little boy didn't much want to talk to me. I am used to getting Andrew up in the morning. Back in the land that we used to call normal I would get him up and dress him before coming downstairs in the morning. He would greet me with a smile and we'd have some back-and-forth about whose Drew-boy he was. This morning though there was nothing. He didn't talk, he didn't smile, he didn't even give me the salutatory "uh-huh". He stayed that way through breakfast until we finally made it down to the playroom for him to have a go at the toys there. As I've reflected on this I've found a disruption growing in me; I am suddenly aware that my boy isn't speaking to me not because he can't, but because he doesn't want to. Andrew is upset.

I'm not sure if he's upset with me, the world, the doctors, or all of the above. What I do know is that today he has been withdrawing. I cannot begin to tell you how hard it is to watch a boy who is so full of life begin to hide away. I can't say I blame him; since coming to this place there has been a revolving door of nurses, doctors, and techs that want to take his blood pressure, prick him with a needle, wake him in the middle of the night to do some evaluation or another, and generally make life difficult for him. He has been separated from his sisters, his brother, his parents, his grandparents, his home, his life, his church, everything he has found comfort and regularity in. So, like many of us would, he is closing in on himself wanting it all to stop. No, I can't say I blame him.

Yes, as I sit here writing this I am angry. It wasn't bad enough that this disease had to take my son's health but now it is working on his heart, his vivaciousness, his joy. I look out the window from our 7th floor room and I see the roof top of another wing of the building and I want to take that little half ladder that goes up to it, stand in the middle, and let loose with the loudest primordial scream I can muster, "LEAVE HIM ALONE!!!!!" I hate this disease and I hate what sin has done to this world!

I am a firm believer in God's sovereignty and his control over all things, it is the basis of all of our prayers and the foundation of all of our hopes. I know that this neuroblastoma did not catch him off guard, take him by surprise, or knock him from his throne. At the same time I have to admit that this is a hard providence to endure. This experience of God's sovereignty is a hard pill to swallow. And so I find myself looking up toward God with the same kind of eyes I see looking up at me from my son; eyes that question, eyes that are confused. When Andrew has looked at me with those questions I have no answer for him, only my presence. When I look up with those eyes I am not met with answers either. I know he is present. I know he is walking with me, leading me in fact, but my questions remain.

Some might say that my questions and even my anger are signs that my faith is faltering... not so. I yell and question and argue not because my faith is weakening, but because I know that God is the only one who can do anything about this; that in fact this is a part of our story that he has written. There was a time that in doing this I would be afraid that God would smash me like a bug for daring to question him, but no longer. Grace is bigger than my questions and unlike any other world system the Christian story proclaims a God with absolute power conjoined with humility. In other words he ego isn't bruised by me. What's more, now I have experienced those eyes as a father; those eyes with their fearful questions and their terrible confusion. I have experienced those eyes and found that when I do all my heart wants to do is draw closer to them, to gather my boy in my arms and cry with him and say, "I am sorry." And if I, being evil, know how to give good gifts to my child, how much more will my Father in Heaven give.

Losing all Control

2010-01-02T11:23:00.000-05:00

As many of you know, I am an organized (little obsessive) person. I like my routines, lists, schedules, and plans each day. I like my kids to take naps at the same time each day and go to bed around the same time each day. Until about two weeks ago, I had chore days and weeks that pretty much followed the same flow day in and day out. Tuesday, December 22nd changed all of that.
Since we have learned of Andrew's cancer and the amount of time it will take to hopefully take it away, my world has been anything but predictable. From the first day of dropping everything we had planned to checking our boy into the hospital, I have had to go with the flow. I have always said that one, then two, then three, the four children are going to force me to just be flexible. I think I have grown in that area since having all my wonderful children, however, I have been forced to just take it a minute at a time.
I lay in bed this morning, listening to the roll of the breakfast tray, the nurses bustling by, and the breathing of my son next to me and I just cried. I cried for his pain. I cried for my other children that don't have me here with them. I cried for my heart that just breaks over having to be here watching the pain of Andrew and the others around us. I even cried for my normal. What does that mean anymore? How will Madi get to school? How can I make a food list for my house when I am not home to even see the food go away? How do I even get to scrub my bathroom just because it is mine? All these things are very overwhelming and I have no answers. I have to idea what tomorrow holds as I am in the hands of the doctors' orders and Andrew's health. It is unnerving and scary. I feel completely out of control and it is scary. But I do have Someone that is in control. Sometimes this thought seems trite, but when you are in a situation that has totally unarmed you and you can do nothing else to create calm, it is wonderful to know I have a God that has "ordained" all the days for me. He is holding my hand and He will help me with this moment. I have always been a planner and for the first time am seeing that He alone can be my planner. I must depend on Him and other people for EVERYTHING. I think until this morning I even believed that I could do some of the things and micromanage from afar and I have been humbled again to see I can do NOTHING. And that is scary. I am scared of things not getting done. I am scared to disappoint others especially my family. I am scared of being alone. And sometimes I am scared that the faith I have clung to before will not be real. The sweet news for this morning is, today I believe God is good and in control and loves me and my family. I will cling to that because I have lost all control of everything else.
Thank you to all who read our posts. All that pray for us and our scary situation. Thank you for your service to our family and for holding us up when we fall. This will be a long journey full of fears and unknowns, but with the Lord Jesus and His "helpers" we will make it one day at a time.

Happy New Year?

2010-01-01T12:43:00.000-05:00

We were awake at midnight, but we certainly didn't want to be. We're not really sure whether to welcome the new year or not, whether to say goodbye to 2009 or not. The end of 2009 has been pretty rough but the next year presents many difficulties as well. Many things have become clearer but the road ahead isn't looking easy. Here is what we know.

As I said yesterday, the cancer has been upgraded to a stage three which hasn't taken him out of the intermediate risk category. The pathology did come back that it is a neuroblastoma but a very mature one which means that it is not aggressive. Best guess from the oncologist before the bone scan is that we will probably to four cycles of chemo beginning as soon as Tuesday afternoon (depending on the bone scan) then surgery. If the doctors feel confident that they have gotten all of the tumor and cleaned it all out we wouldn't need any more chemo. If not it would probably be three or four more treatments. Total time with chemo, surgery, recovery, etc would probably be 8-10 months.

In the grand scheme of things 8-10 months isn't bad; cancer treatments can go on for years. At the same time this is a daunting schedule for us. We feel overwhelmed at the thought of three to four days a month being lived in this hospital as well as all the changes we will need to put in at home. The thoughts of then having to return to the hospital should his white blood cell count drop even during those spans at home, of living in an ultra sanitized house, living as single parents with the rest of our kids, constantly being torn in two between our home and Charlottesville; it feels like a large mountain to climb.

The other big story from today is that Andrew is done with this place. Up to this point our little boy has been completely compliant as people have poked, prodded, and pulled him every which way. Today however his tolerance seems to be up. He is feeling better with less pain, which means that he wants to get down from this infernal crib and run around, but he can't because of the chest tube. Today a doctor came in who needed to test to see if the tumor is having any effect on a group of nerves that deal with a small strip of skin that runs along his rib cage. She tried to just touch him but Andrew's answer to every question these days is "uh huh"... so the best way to test is by pricking him. With the first prick he did fine, with the second he started to get agitated. With the third prick he was in full on ticked off mode. No one reading this has probably experienced this with our boy but when he gets mad Andrew holds his breath. We're not talking a little holding but a full on, blue lips, mad-fest. This particular display is becoming slightly more regular... he's done.

This particular post has taken me a couple hours to write between doctors coming in, nurses beginning to teach us how to care for the central line, phone calls, etc. Over the course of that time we have begun feeling a little more encouraged. 2010 is going to look much different than 2009. There will be many trips to the hospital, a lot of hand sanitizer, and probably a lot of tears, but not everything will change. Even if everything else changes the one thing that won't is the presence and care of Jesus. Through His body, the Church, and through His Spirit we have felt supported and cared for. The new world that Jesus will bring with His return is one without disease, one without pain, one without death. That is the world that we long for, but it is not this world. This world is one where we struggle and suffer but we do so not in a state of abandonment, but in fellowship with One who is acquainted with our suffering because He suffered. He bore the weight of the brokenness of this world, our brokenness. He bore our corruption and our guilt. He is the one that we have fellowship with in the midst of all this and we are experiencing that even right now because of the prayers of the saints. Thank you for upholding us.

A Mixed Bag

2009-12-31T15:21:00.000-05:00

(This is Andrew eating for the first time after his biopsy... the mittens are because he complained that it was cold)

I think I've mentioned on here how one of the hardest things about this process has been trying to hope. You want to hope for the best possible thing but, at the same time, you hate disappointment. There is something in most of us... me at least... that feels foolish for hoping when disappointment takes place. Hope is good and right but it is that because it is a leaning into the world made new, the world without death, disease, and sin. Today the mixed bag of news we received brought this back to mind.

We have been waiting on pathology reports and the report on the MRI. We finally got some news about an hour ago. Pathology reported that one of the indicators, a gene whose name escapes me, was negative... very good news. The MRI showed that the cancer has not spread to any organs... very good news. The MRI also showed however that the tumor has crossed the midline which takes Andrew's cancer from a stage 2 to a stage 3... not so good. So far he has not changed risk levels (still intermediate) but we are still waiting for the bone marrow pathology and we are waiting for a bone scan. Further looks at the histology by the pathologist has led her to believe that there is a chance that this is not a neuroblastoma but a ganglioneuroblastoma (say that three times fast). If this is the case it would be very good news as this type of cancer is far less aggressive.

All that is simply to say we are still waiting, still trying to hope. It is hard. The soonest we will get the bone scan is Tuesday which means spending the weekend in the hospital. These walls are getting old. Your continued prayers are appreciated. This is wearing on all our family. I spent some time at home yesterday and the reality that I was leaving again brought both girls to tears. The plain fact is that in a few years, if the Lord is gracious, Andrew won't remember any of this. The girls however will probably remember how difficult this time was. Please pray them as well as for us. Cancer really does affect the whole family.

The Waiting Game

2009-12-31T12:01:00.000-05:00

Imagine the still of a winter's morn, the quiet slumber of a weary family, suddenly and swiftly brought to a stunning end with, "GOOD MORNING! CHEST X-RAY!" "Here's your breakfast!" "Bone scan? I haven't heard anything about a bone scan." This is the way we were roused from our sleep this morning. We are learning very quickly that life in the hospital is full of surprises, painful waiting, and the miscommunications common to man.

We awoke yesterday to the promise of an MRI and a bone scan, the last two pieces of the puzzle that would help the doctors stage Andrew's cancer. The MRI would begin at noon and the bone scan after that... or at least that is what we were told the night of the biopsy. We soon learned yesterday that, because of a protocol error (I have no idea what that means either) the bone scan wouldn't happen that day. A little disappointing, but not a big deal, at least we'd have our MRI done midday and maybe get some answers by the afternoon.

Noon came and went with no MRI. Apparently we were on radiology's schedule for 2pm. I guess it wasn't a biggie... but things were starting to add up. We took our little boy, still slightly doped up from pain meds from the biopsy down to the MRI room a little before 2. Once we got there we found out that the patient that was in the MRI room was, surprise surprise, taking a little longer than expected. They finally sedated him at 3. "This should probably take 2 to 2 1/2 hours," they said as we left.At 6:15 we thought it would be a good idea to check to see what was going on with Andrew since we hadn't heard anything. He came through fine but the results would have to wait since it was already so late. Then came this morning.

Apparently we won't be having a bone scan today... no explanation yet, we're still waiting to hear from the oncologist in regards to that and the MRI results. It looks like our New Years Eve will be rather uneventful, but who knows. We have learned that in this alternate universe we call Hospitalopia that schedules don't mean a whole lot, you take things when you can get it, and you generally don't try and plan your day.

For me personally I am finding that my frustrations are mounting. I guess I can understand that today is New Years Eve and thus business as usual won't be possible here and yet I can't. I know intellectually that my son's cancer isn't aggressive which means that being a day late... or 10... on his bone scan probably won't make much difference. At the same time I feel like I am wrestling with his amorphous entity, a shadow that we still haven't identified and because of that it is even more terrifying. Personally if we couldn't get his dental x-rays scheduled I wouldn't much care. What we are dealing with though is my son's life, the staging of his cancer, the plan of treatment. I find myself growing angry at the fact that we can't get answers because people have to get ready for their year end celebration and so there aren't as many people working. I find myself getting more and more frustrated that the lives of others goes on while ours is grinding to a halt. It makes me want to find myself in the middle of the peds unit screaming at the top of my lungs, "DOESN'T ANYONE REALIZE DEATH IS GROWING IN MY SON!"

I think though, at the end of the day, what really angers me is not protocol errors or overworked nurses, delayed scans or even the constant waiting. What angers me this morning is my own helplessness, my own creatureliness, my own finitude. My very genetic make-up is designed to be a person that moves out into the chaos of the world to bring order. Chaos is raging in this room, in my heart, and in the chest of my son and there is nothing that I, personally, can do about it. Perhaps I am learning a bit of the mind of Abraham who, when ten years had passed since the promise of a son was given with no sign of a child, he took matters into his own hands and had one by his wife's maidservant. Ten years of waiting and wondering. I wonder if we look down on good old Abe because we miss that phrase of him living in Canaan 10 years when his patience ran out. We think, "tsk tsk, he should have trusted in the Lord." Easier said than done.

Today we wait... all the tests for the day are already done. Today I have to rest in the arms of a greater Father, one who doesn't have my limitations, my lack of power, my ignorance. Easier said than done I think. Thankfully God doesn't ask us for perfect patience... Abe's story bears that out. The Gospel for us is that Jesus is faithful to us in our struggles of faith, in our impatience, in our seemingly powerless tears. In addition to praying for our son, please pray that we can live with hope and faith in the midst of this period of waiting.

A Mother's Touch

2009-12-30T10:41:00.000-05:00

"Mommy! No...no...no...." Andrew is crying out in the middle of the night in our hospital room. "Shhhhh, baby it is okay" I say. His breathing calms and he goes right back to sleep after hearing my voice.
At 5am I hear his little voice again, "Mommy? Where are you? I can't see you?" I rise up off my air mattress to rub his head and cuddle him. "Mommy is right here with you my sweet Drew-boy." Again, he quiets with a smile and goes back to sleep.
I am amazed at the peace my words can bring to a little man that is disoriented or scared. There are days as a mother that I just question what difference I am making. The time, energy, and sacrifice I make only to crash into bed at night wondering where the day went and what I did. The sun rises and we begin again. But here with Andrew in the hospital it is very different. He wants closeness, comfort, and reassurance that at times only his mommy can bring.
He came out of surgery yesterday and the docs called Rick and I to go sit with him until he woke up. When we arrived he was sleeping so peaceful. We just talked to him quietly and waited. However, once that medication wore off he became restless and fitful. "Mommy, I need mommy. Mommy, hold me. Mommy hold me" is all he kept saying. He was scared, disoriented and all he wanted was him mom. I scooped him in my arms very carefully (and nauseous because God has given poor Andrew a mother that is very queezy around blood and needles) and put him on my lap. He settled almost instantly with his momma's singing and hugs.
This has already been the hardest journey a mother can go through. To hear the words TUMOR from the doctor and know that at that moment I had lost all control of my life and schedule. My little boy was very sick and I had to place him in the hands of others that could heal him. I have been so used to being the one to bandage boo-boos, dry tears, and make the pain go away. But here I feel so helpless and numb. In order for my baby to get better they have to make him feel worse. They have to cut, poke, prod, jostled, wake up, and bother him to make sure his cancer goes away. And I sit back and let them. My heart breaks. My head spins with light headedness. My world has stopped in many ways. But I am still his mommy and my job has changed for him in some ways. The sweet news is is that in some ways it hasn't. I am still the one he wants to comfort him. To hold him. To remind him in the darkness that I am still there with him walking through this trial. I would do anything for this sweet son of mine.
As my precious Drew boy was recovering in his room last night, after a fitful evening. we were sitting with the nurse checking his vitals. He seemed to be a feeling a little better and wanted his apple juice. As the nurse gave him his cup, he looked at her and said, 'This is my friend Mommy." His spirit is so sweet and his "friend Mommy" will be by his side through this entire battle. He is a strong fighter with an amazing attitude. I will let the doctors, nurses, surgeons, oncologists, and residents do their job and I will keep doing my job...offering him a mommy's touch.

Walking Each Step

2009-12-29T23:51:00.001-05:00

For those waiting to hear... and propping their eyes open... I will give the executive summary before the expanded edition. Biopsy has shown that Andrew has neuroblastoma (as suspected). The initial pathology shows that it isn't very aggressive (favorable histology) which is very good news. The surgeon put in a central line (more permanent IV that comes from the chest) which has allowed his other IV's to be removed. He also has a chest tube that will take a couple of days to heal. He is on some pain medication to take care of the pain from surgery. Right now he is sleeping soundly. MRI was pushed to tomorrow along with a bone scan, full staging will need to wait until after the MRI and the path reports return. Now, on to the more annotated version.

One of my favorite Christmas time stories growing up was Dickens' A Christmas Carol. I would love to say I had some deep spiritual appreciation for the story of redemption but in reality I loved the ghosts and the picture of the snowy streets of England. Central to the story is of course the fact that Scrooge needed to be led through the different facets of his story, or rather his impact on the story of others, by three different ghosts. The journey Scrooge went on needed three different guides to take him through each crucial step towards redemption. Today we found ourselves guided in a similar way.

We woke this morning from a pretty good night's sleep. Andrew slept through all but the attaching of the IV... and then he fell back to sleep quickly. Truth be told, we seem to wake up later here than at home where Madi opens her door on the left side of 6 a.m. most days. Our spirits were pretty good and we were ready for, what we thought, would be a fairly routine day. Around 9:30 a member of the oncology team came by to talk us through the day and to sign the legion of forms for the surgery. Her words were helpful, but brought with them a heavy dose of reality again. There were many unknowns still present, many possible outcomes to the day. Our confidence was beginning to shake. No sooner had she left that two good friends from church arrived. Their presence, just their presence, was enough to keep our chins up; that is of course until they called us to go down to surgery.

We left for surgery with Andrew with emotions swirling. We left our friends back in our hospital room and traveled to the 2nd floor. By the time we reached Surgery Admitting panic began setting in; I became ambivalence personified. I wanted to begin this process and start down the road that would end with my son running and jumping, pursuing his dreams and growing old, but I also didn't want to put my now drugged little boy into the arms of this stranger who would take him to the OR. Before we had to do that however another stranger appeared dressed in scrubs like so many others, all others really, on this floor. She was the daughter of one of our members who was told that we would be coming and came by to visit with us. She stayed, talked, listened, and then prayed. Her prayer was not full of eloquence but it sang with conviction and the melody of the Spirit. It was a prayer that made putting my dear sweet boy into the arms of another man not easy, but bearable.

We left the second floor shaken. We were preparing for at least 2 1/2 hours of waiting but had already received word that more friends were awaiting us in the cafeteria. We entered the cafeteria to find four people waiting for us, friends that had made the drive over the mountain to sit with us as we waited to hear about our boy. Before the end of our waiting another would arrive as well. We sat and ate, talked and laughed, chatted about Andrew and about nothing; it was marvelous. The call came at about 4pm that we could come get sit with him as he slowly woke up. I'm not sure what we would have done if we had been left for 3 hours to sit by ourselves with our fears and uncertainties.

Andrew awoke slowly as we sat by his bedside in pain and pretty disoriented. Neither of us were prepared for the number of tubes that seemed to be coming from every part of our boy. It is a strange thing when you drop off a child who was rambunctious and difficult to contain to those sworn to heal and you receive him back wounded and sluggish. The oncologist came and talked through the results with us. The news that it was malignant was tempered only by the news that the histology was favorable (apparently meaning that it wasn't aggressive). The long road ahead began to open out in front of us as we transported our crying boy back to our room. As we got off the elevator a familiar sight greeted us, friends waiting outside the elevator as they did the first night we brought Andrew here. Once again we would not be alone in our chaos.

We entered the room and began to get to work setting things up for our boy who was still upset and probably in pain. In the midst of all this Jess left the room and reentered with a couple I had never seen before. Her face was overwritten with the language of relief as if these two whom I had never seen before were a gift unlooked for but much welcomed. As it would happen these two were neighbors, neighbors who lost their two year old son to a rare form of brain cancer, neighbors who labor in the ministry, neighbors who could give some light to the dark road we had been cast onto. As the couple who greeted us at the elevator prayed with us and headed home our neighbors remained. We shared stories, we shared emotions, we shared our lives. I do not have the skill with words to adequately communicate the power of their presence with us, especially tonight.

Every step of our journey today we were provided others who would journey with us. Every one of them was important, every one invaluable. This to me is a wonderful picture of the gospel. I didn't know that today I would need the presence of others, I didn't realize I would need company along my journey. Yet, before I even knew what my need would be God provided for it, and not in some existential sense, but in real flesh and blood, hands to hold, voices to hear, tears to see. "All I have needed Thy hand has provided" is how the song goes and tonight, as I reflect on His grace to the Gilmartins today, I join with those lyrics (and I invite you to as well) to say
Great is Thy faithfulness, Lord unto me.

Re-entry

2009-12-28T22:00:00.001-05:00

Driving east on 64 was a little different this time as we headed toward Charlottesville. The last time we made that trip the miles were filled with dread, panic, and disbelief. This time the miles were still filled with disbelief, but also calm; at least this time we had some idea of what we were walking into. We parked in a spot closer to the elevator in the parking deck, walked knowingly into admitting, entered the elevator knowing what to expect, got off the elevator heading toward our room with confidence... only to find our room situation was very different. Here, in this room, was a crib, a chair... and that's about it. No double room with no roommate, no extra bed for a tired parent; no, this was not what we expected. Yet in the midst of all this we were strangely calm... I can only attribute this to the multitudes praying for us.

Apologies to all those who live in Charlottesville, but I can't say I have anything approaching an affinity for this city. My first experience here was a summer camp at UVA that was like many summer camps, that is to say full of insecurity, awkwardness, and general adolescent angst. My second experience was sitting up all night with my best friend and his family in this hospital after his little brother's tragic drowning... the image of the lobby of this hospital is indelibly burned into my memory from that. Next came a visit to the hospital to sit and pray with a member of our congregation who was recovering but never fully recovered. Now my experience of this city (though perhaps only this hospital) is irreparably joined to my son's cancer. I'm afraid nothing short of an honorary doctorate from Mr. Jefferson's University will change my existential strife over seeing the roadsigns for exit 118B (any of you that might be able to see such a thing happen feel free to contact me).

This afternoon passed rather uneventfully. A bevy of doctors came through talking about the procedures of tomorrow, the kind of anesthesia that will be used, the order of events, what exactly they're looking for, etc. Everyone is still very hesitant to say anything definite. I can't imagine what some of these doctors must have experienced with those for whom their first guesses, vocalized with the confidence that comes with inexperience, were proved dreadfully wrong. Whatever it was it is difficult to get even the beginnings of a hunch out of them. Perhaps there is something for me to learn there. Right now Andrew is sleeping... or he is supposed to be. Jess and I are sitting in the hallway waiting for him to drop off so we can reenter the room and prepare for bed ourselves. Tomorrow will come with all of its dreadful surprises and challenges yet tonight for some reason there is calm, laughing, even hope.

I say, for some reason, though I know very well why that is; many of you who are reading this, and many who never will, are praying even now for us. I think prayer is an idea until you really need it. Prayer is something Christians know they should do, even perhaps believe that it is useful, until it is all that is left. When all of your options have dissolved into the grace-filled nothingness that leaves your last hope as the only One you had in the first place, then you begin to understand prayer. This evening Jessie and I sit, like two hobbits on the brink of destruction and small talk because people are praying that we might persevere and that our boy might be healed. Tonight I think I will sleep well because I am beginning to learn what prayer is about and what Jesus longs to do through it as He heals the brokenness of the world through broken vessels like us... doing it all through our prayers.

The Last Day of "Normal"

2009-12-27T22:01:00.001-05:00

The sun has set, the kids are in bed, our last "normal" day has ended. Tomorrow the journey begins in earnest.

All things considered today was not such a bad day. Watching Andrew run around the new nursery as well as the new sanctuary at Tabernacle was nice. So many people mentioned that if they didn't know he was sick they couldn't even imagine it. I don't know why but that brings me comfort.

This afternoon the elders came by to pray for us and for Andrew. There were several points at which I found myself fighting tears; the hug that was held longer than I expected, the vocalization once again of my fears, the realization that when Frank read the words, "Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up," he was talking about my boy, the tears of one elder while he prayed. I wonder how many ways I can think of to say the word 'wrong'... not enough I'd wager. I've found that one of my chief struggles this past week has been what faith looks like in this situation. This disease is pushing against my safe but stunted world of hedged bets in which I ride the fence keeping one foot in the land of faith and one in the land of effort. So I find myself wanting to hope in God's work to entirely erase this tumor from existence but I also don't want to look foolish for hoping or have to deal with disappointment. It is quite the predicament, as you can imagine.

Tonight I am trying hard to have a reckless faith and let the chips fall where they may in the days to come. Saying that though I understand now in a way that I never could before the heart of the man who comes to Jesus to see his child healed professing his belief while also confessing his unbelief. It is a kind of desperation that says, "I believe Jesus. I believe you can heal and if I don't believe enough, can you help me believe more? Whatever it takes, whatever I have to do I will do it."

Tomorrow we head to the hospital at 4pm. they will put Andrew on an IV after dinner and get him ready for his procedures in the morning. Tuesday morning will see both an MRI and a biopsy. Because of the location of the tumor he will need a chest tube for a while after the biopsy. Should he heal up before the results come back we could be sent home again. If the results are quick then we could move right into treatment. For those of you praying, please continue. The glory and beauty of the story that the Bible tells is that the God who created all things is intimately involved in His creation still, acting in time and space out of love. May our mighty king, Jesus, work even tonight to reverse the curse and defeat this enemy for us.

Everything Changes

2009-12-27T18:06:00.006-05:00

Thanks for visiting. This is a tool to provide a window into our family's journey through our son Andrew's cancer. This first post is a repost of something I posted onto my facebook page on December 23rd, the day after we were rushed to the hospital with our son...

Two days ago at this time I was thinking about how I was going to get to the church to work on music for Christmas eve. I was wrestling through some significant shepherding issues in the congregation. I was finishing my shopping for my wife's Christmas presents. Tonight I am listening to the steady sound of my son's breathing as he sleeps in the bed next to me in a room that is hard and cold, a room made for utility not comfort; but then what should I expect from a hospital. I'm getting ahead of myself. Let me back up.

"It's a cough," I thought, "what's the big deal." At worst we're looking at pneumonia and after a brief dose of antibiotics we'll move on. The holidays are coming and these nights awake aren't helping us get ready. We took Andrew for a chest x-ray... sure enough, pneumonia. Glad to have that cleared up let's get to the meds and everything will be fine.

"His cough is gone why do we need a follow up x-ray?" Those are the words I thought but never said. I generally take the advise of those trained in their fields; I appreciate it when others do that with me. the second x-ray showed further lung damage... strange that he isn't coughing. At this point it looks as if maybe he aspirated something. Not surprising, the boy has eaten half the sand box and hasn't quite mastered the fine art of not talking when his mouth is full. Looks like now its time for a CT scan.

"No problem, I'll take him. You'd have a hard time with the IV." That's what I told Jess when the scan was scheduled. Ever since I have known her needles and tubes have tended to bring on a case of the "I'm about to pass out"s or the "uugghh I don't feel so good"s. Four kids and she'd tell you today that the worst part of labor was getting the IV. CT was scheduled for 8am so I wouldn't lose much office time, no big deal. From what I hear the scans don't take long anyway; the biggest part is getting the IV in for the contrast. That part did take some time but we were still out and at McDonalds getting breakfast by 9:45.

"It could be anything, let's not get ahead of ourselves." Those words left my lips as soon as Jess put down the phone. The doctor wants to see us at 2pm to go over the CT scan. I was a little nervous but I saw doubt and fear begin to dance in the eyes of my wife and, to be fair, it really could be anything. Maybe he's got something sharp in his lung and we need to talk about where we're going from here. Other thoughts were creeping at the edges of my mind, wanting to intrude into the more tame and calm areas that were focused on playing the role of stability.

"I'll be home in a minute!" I said that as I closed my cell and headed for the door of my office. Jess had gotten another call from the doctor's office telling us to bring Andrew with us when we came at 2 and bring a packed bag for him since he was going to be admitted to the hospital. As I got into the car I wasn't trying any more to hold the tears... I couldn't. Those thoughts were done playing the margins and had ripped through my stable facade and were screaming so loud I could hardly hear myself pray.

"Thanks again for doing this." I said to Ash when she arrived to watch the kids. I think I was pretty calm but it is hard to remember... even though it was yesterday. So much is already running together. Over the last year or so Ash has always seemed to be there when we needed someone last minute to care for some number of our crazy clan. I'm not sure we've ever needed her the way we did yesterday but she was there and that kept my precious girls from realizing much of what was happening.

"Are you ok?" I could see Mandy mouth those words to Jess at the window of the pediatrician's office. We were so excited when our neighbor got the job at our ped's office, now it was almost painful to see her, more so because she clearly had no idea why we were there. We only waited probably a couple of minutes but I couldn't stop hugging my son. I just didn't want to hear those words.

"...tumor..." I don't remember what came before and I don't remember what came after. All I heard was that word, that word I didn't want to hear, that word I was so scared of. My little boy has cancer. Why? Is it possible it's benign? He's only two. What does this mean? Is he going to die? He's only TWO! So many thoughts and questions were running through my head. Jess was asking questions but I'm not sure what exactly she was saying. The fog lifted and I began my questions. I looked into Dr Mumbauer's eyes... grief... pain... compassion. His composure was not a distant one.

"I don't want to lose my boy!" These words were barely recognizable through my tears. Tears are not foreign to me but this is something new. I don't think I've ever been this scared before. I don't remember much of the drive to UVA except that I was trying to focus on driving. The wait in admitting was awful. i wanted to scream, "Don't you realize my kid has cancer?! Screw the paperwork where is our room!!" Who knows what stories were represented in that room. When you're scared the first casualty is perspective, the second is restraint... so far only one casualty in this war.

Tonight I sit in this dark room listening to the sound of Andrew's breathing as he sleeps. Jess went home tonight to give some normalcy to the other three kids. She will second guess that decision for a week... but it was the right one. It has taken me the better part of two hours to write this with frequent pauses for sobbing, phone calls, and just to go look at him while he sleeps. He is still clueless about what is coming. In this war we are still gathering intel, still seeing how strong the enemy is. We are not even at the stage where we determine the plan of attack. If you had asked me two days ago what my chief worries were, the things that were at the forefront of my mind, the possibility of a malignant tumor in my two year old son was not even close. Yesterday everything changed. We're now that family that you read about, that you hear about and feel sad for. We're now the family that, after reading the update, you go and hug your kids a little tighter. Yesterday everything changed and there's no going back. I have never been more aware of my own limitations, I am not strong enough for this. I have never been more aware of more conscious of my own powerlessness, I cannot change this situation. I have never been more aware of my need for a powerful love outside of myself to carry me, I'm not sure I dare walk this path. In short I've never been more aware of the beauty of the Christian Gospel and the glory of the season that we'll celebrate tomorrow. There in that cave in Bethlehem God showed that he would draw near to the brokenness of the world and not just experience it, but bear it.

Tonight I long for the day when everything changes again, when the brokenness that I feel so profoundly tonight, the brokenness in my body and my son's is done away with. I long tonight for advent. That isn't the pastor in me saying it, its the father. Let everything change again... tomorrow.