Leaving on a Jet Plane

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

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

 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

 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

 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

 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

 "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."