Tuesday, January 12, 2010
Day +286: A Reflection
It's day +286...a big day around here in a weird kind of way. One year ago, just about this time, we were in the Hematology/Oncology Clinic at Children's Hospital for the first time. I had taken Max to our Pediatrician that morning, only to find out from a blood test there that his blood counts were extremely abnormal and that he needed a Hematologist to determine what was going on. I clearly remember the looks of concern on the doctor and nurses faces at the Pediatrician and the doctors words, "You need to be down at the Hematology/Oncology Clinic at 1:00 today. You should pack a bag and expect to be admitted. They are going to want to keep Max until they figure out what is going on." I also remember the look of shock on my mom's face when I went back to her house to see Alex and Ellee and tell her where we were headed. Max had played basketball only two days earlier in a crowded gym and had a great game! We had all watched him run up and down the court, loving every second of it! How could this be?!?
You all know how things went from there...a range of possibilities by that evening (ITP, Aplastic Anemia or Leukemia); a bone marrow biopsy the next morning; a diagnosis of Aplastic Anemia that afternoon with the doctor saying, "worst case, it would mean that Max will need a bone marrow transplant but, we don't think that is likely at this point"; weeks of CBCs and blood/platelet transfusions; numerous genetic tests on Max, Alex, Ellee, Matt and I; a brief period of time when a genetic disease, Fanconi Anemia, appeared to be the cause, followed by the relief that it was ruled out; preparation for Max's bone marrow transplant including a PICC line, a central line, EKG, CT scans, chest x-rays, ultrasounds, more blood work, etc; admission for the bone marrow transplant; chemotherapy; Ellee's bone marrow harvest; the actual transplant; discharge; and a long, winding road of recovery that Max remains on today. Wow...what a year it's been!
I have included the picture of Max at the top of this post because I think it speaks volumes about what a year this has been for him. This picture was taken by our friend Emily Mengel just this past October. She also took the picture of Max at the top right of the blog home page in the fall of '08. I hope when you look at the Fall '09 picture at the top of this blog entry, you will see what we see...he looks fantastic. We say all the time how amazed we are at how good he looks, given what he has been through this year. My typical comment to people is that he looks and acts more and more like the old Max all the time, yet there is something very different about him. He has matured a ton. I am sure that some of it is just the maturation that happens typically for a boy between 7 and 8 years of age...between 1st and 2nd grade...because I have seen it with many of Max's buddies in the neighborhood and with our nephews. But, there is more than that for Max. He has matured beyond his years and has a new zest for life. He notices and appreciates the little things much, much more than he used to. He loves traditions now and really enjoyed celebrating many of them over the holidays this year. He cherishes his brother, sister, mom, dad, dog, cousins, grandparents, aunts and uncles. He has just really changed in big and good ways. It has been a transforming year for Max in many, many ways.
Our hope for Max in this journey remains the same...that this year has just been one chapter in a very long, full and wonderful life. I have dreams about the day that he will be sitting on his couch with his children, looking back at his picture from the fall of '08 and then at his picture from the fall of '09 and telling them about the life saving adventure he had between those pictures. Then Aunt Ellee and Uncle Alex will walk in and add their memories to the story to finish painting the beautiful picture in Max's kids heads. I know they will be amazed and awed by their father's journey, just as we are today.
Max - we are so very, very proud of you. Your courage, strength, laughter and never-ending optimism thoughout your difficult journey this past year has taught us things about life that we never would have learned otherwise. Along with your brother and sister, you are our greatest gift. We are blessed to have you as our son and eternally grateful for having you in our lives. We love you.
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)