Post Transplant: Where do we go from here?

Saturday / Sunday
June 28th - 29th
Days 2-3 post transplant

Camryn continues to do well. She is exhausted, in fact we all are, which is why I am combining two posts into one. Casey spent Saturday night with Camryn at the hospital so Lee Ann and I could just go home to sleep. Lee Ann slept 10 hours, she never does that; and we're not the ones who had marrow extracted or had the actual transplant. Morgan slept last night 10 hours as well. She was hurting pretty much all day yesterday, but things seemed to improve last night. Saturday morning Morgan had her massive bandage removed from her lower back, which revealed two "red dots" on both sides of her upper hip where that long needled was inserted to extract the marrow. I know that Morgan is so relieved to finally have the procedure over. She has known since February that her marrow was the perfect match for Camryn; that is a long time span to manage your fears and anxieties regarding the procedure, which she did exceptionally well.
So now the waiting game begins for Camryn and for us. With the marrow in place, we now manage the expected side effects of the transplant, and residual effects from chemotherapy. First the chemo, the side effects linger despite last Thursdays being Camryn's last day of receiving the toxic treatment. As I have previously mentioned, mouth sores are the biggest culprit. Think of a canker, not one, but dozens inside your mouth and raw. Ever eaten ketchup or mustard while you had a canker? That is only a fraction of the resemblance of the potential mouth pain that Camryn faces. Which is why her four-times-per-day oral cleansing routine right now is so critical. Being vigilant in the cleansing routine can help reduce the severity of the sores. Second issue, from an emotional perspective, is hair loss. Both of these issues are expected to begin this week. We have been quite open with Camryn regarding this issue, and she has seen many of the other children in the unit who have already hit this phase in their own treatments. We are prepared with a couple of options, which Camryn has chosen. They will be revealed in time, at her discretion.
Camryn has a stay of four more weeks in the hospital. That time assessment is based on numerous parameters, but primarily the average time it takes a bone marrow transplant patient to produce a minimum level of white blood cells, still low, yet enough to be considered a functioning immune system. During this time frame, Camryn's body is highly susceptible to infections from bacteria or viruses. As she rests beside me right now, she literally has no immune system. It takes time to rebuild. Also, even though Morgan's marrow is a "perfect match", Camryn's body may still reject the transplanted marrow, which presents an entirely set of additional complications. So, to help the "acceptance" process, Camryn is on varying doses of anti rejection ( my term) medication and is being closely monitored for any signs of rejection. For us as parents, and for Camy, the emotional roller coaster of all of this is never ending. That is one reason why we experienced relief, if but for a few moments, from Friday's successful bone marrow transplant. As the day has progressed today, Camryn has become more lively, talkative, and active. Now, let's hope this trend continues...