I have written at least ten updates in my head over the last few months but none of them have managed to make it to a keyboard. I promised myself though that I would write a post today as it is now "one of those dates" that will forever stand out on a calendar for us and it seemed like we needed to honor that. Exactly one year ago today we were admitted to the ER from our pediatrician's office after Sam seemed unable to "shake" what we thought was a routine virus. In many ways, that first night that we learned something was terribly wrong is such a blur. In other ways though, so many details remain gut wrenchingly vivid. I'll never forget the look on the ER attending doc's face as he walked into our room and tried to explain what Sam's blood work was like and what her "numbers meant". So much of the medical explanation I didn't understand at the time, but his sad eyes and the way the fellow could only stare at the ground while a nurse put her hand on my shoulder, told me so much. My hand shook uncontrollably as I called Brandon as he was at home with Kaeden. "They think something is REALLY wrong with her and they are taking us to the oncology floor right away" was all I could get out. He had so many questions and I had so few answers. I remember staring in utter disbelief as bag after bag of blood was hung on a pole next to our bed that night. Sam would receive three transfusions over the next 10 hours. Little did I know at the time that transfusions would soon become as frequent and routine as grocery runs in our life. Two days later, she had her first bone marrow biopsy and received her first PICC line. The next three days were a waiting game as there were several steps following the biopsy process before a definitive diagnosis. My initial shock and denial began to give way over those days to the reality we were facing and the fear and sadness begin to creep in like a tidal wave. The irony and twisted beauty of having a critically ill child though is you soon learn there is simply no time for those feelings.
The next five months, Sam and I spent more time at the hospital than we did at home. When you are told your child might die, every hour, every minute is spent researching and learning more about your child's illness, coordinating care, monitoring symptoms and pain control etc. Many kind friends would ask me "how I was holding it together?" It did not (and still does not) feel that way a lot of the time, but my only honest response was "because I don't have a choice." There really is just no room for tears or fear at that time, so you detach from the emotion of it and just focus on doing what you have to do to make your child better that second, that minute, that day. I remember asking a fellow AA mom I met online "when does it get better?" She told me her daughter was medically better a year after transplant but that it took her and the rest of the family at least another year to begin to "emotionally heal." I remember at the time, that statement kind of just washed over me because I really wasn't in a place where the emotional aspects of critical illness were even registering. I couldn't and wasn't "going there." Now 9 months out from transplant and a year out from diagnosis, those words are ringing so true. The anger, fear, and sadness that were pushed deep down start to surface and catch you off guard because things should be getting better right? It's often seemingly little things that trigger memories, ignite fear and doubt, and can send you into a tailspin, and unlike before they aren't so easily chased away by the pace and chaos of hospital life. In many ways this is a wonderful thing, but I get why so many other parents have told me that "it's never really over, but it does get easier."
In SO many countless ways it is infinitely better and we are utterly grateful. Sam's counts have remained relatively stable and safe. She was put under and got a new G tube right before x-mas and did really well with that surgery. The GI surgeon felt this was the first time that it was easily replaced and that it could be considered to be done without anesthesia the next time (every 3 months). After a relatively brief frustration with insurance that denied several claims for Sam's IVIG transfusions, it appears that this has been sorted out with the help of an insurance liaison from Brandon's company. All good things! The remaining "waiting game" as we look ahead is for Sam's t-cells and b- cells to recover. We have learned so much about the immune system over the last year, but it is such an amazingly layered and complex system that we have probably only scratched the surface of true understanding. My best explanation is that there are two types of t-cells that are vital to a good immune system. There are "helper t cells" and "fighter t-cells" that are responsible for triggering an accurate and targeted response to infection. So at this point even though we are incredibly grateful that Sam's WBC and immune system overall is "stronger," we are still waiting for it to become "smarter." She now has the number of cells needed to fight an infection but she does not have the appropriate "management crew" to direct these cells in an optimal way if that makes sense? We are back at clinic this next Monday and I plan to ask more pointed questions than I have in the past about recommendations and options if t-cells and b cells continue to show limited to no recovery as we approach the year mark. My current understanding is t-cell therapy does exist (although not at our hospital) where t-cells would be taken from Kaeden's blood and transplanted again into Sam. The benefits of this therapy would need to be carefully weighed against the risks though as it opens up the possibility of a GVHD (graft vs. host disease) response. GVHD is highly unpredictable in it's severity and is not a risk we are eager to take on again unless absolutely necessary.
As I stared at my phone this morning at the January 30th date, I was caught off guard and overcome with emotion. Some of it was anger, some of it was sadness, and some of it was fear. But as I watched Sam and Kaeden "rock out" tonight to some "Just Dance" videos before bedtime, I was so thankful that this January 30th was full of new memories. Twirls and spins replaced transfusions and giggles replaced cries of pain. I honestly can't believe how far Sam has come or how hard she has fought since one year ago. For awhile we really hoped that all or most of the painful memories of the past would just fade away with time, but now I'm not so sure that's even what we want anymore. They make those family moments of dancing, laughing, or just "being" all that more sweet! My heart truly feels like it will explode with joy sometimes when Sam and Kaeden are laughing hysterically together, but my heart also aches with such pain knowing that almost everyday a parent will have to experience their own "January 30th" with their sweet child. As always, thank you so much to all of our family and friends who have supported us in so many ways over the last year and thanks so much to those of you who still follow Sam's story. As she would say with a sweet smile, "Kanks!"
