A bump in the road to recovery / Turning 12

August 24th - 31st

The "not so fast" caution sign has been flashing recently on Camry's speedy road to recovery. She has developed a rash, that "comes and goes". The suspected origin of the rash is "Graft versus Host"  disease, which in Camryn's case isn't so much of a "disease" as it is a "reaction". In last week's blog, I mentioned they Camyn was to begin being weaned from the medication "Prograf", the anti rejection medication. Smaller doses had already been initiated a few weeks ago, but this week's blood levels showed a significant drop in the Prograf levels which may have spawned the reactionary rash. So, Camryn had her Prograf doses adjusted upwards to counter the reaction. The docs assured us that this is a fairly common reaction and that while the rash and itching are a nuisance, they are not representative of serious complications or reactions to the bone marrow transplant (BMT). In other words, Camryn remains on track for a full recovery with a target date to be off Prograf at day 100, post transplant. To put everything in perspective, Camryn is at day 65, as of 8/31/14, post transplant and so far, has yet to have any "serious" reactions to the BMT. I suppose that watching her scratch herself like a dog infested with fleas, is a far better graft-versus-host reaction than what potentially could be happening. The reality is, the itching and rashes are manageable; a small price to pay for a new, healthy, and functioning immune system.

Well, she is 12 now. A magical age; no longer a "child" but not quite yet a "teenager", which Camryn's argues she is. Managing this birthday for Camy has been somewhat easy since many things we potentially could have done, had no chance of occurring because her situation. Also, the lifestyle restrictions with which Camryn has been living since the first week of June, has given her a very unique perspective regarding what matters most to her. As you can imagine, she has rearranged some of her "priorities". For example, family time is huge (GASP!) for Camy, because we are essentially her "social life", despite being as "lame" as we are, until January. Playing games (Uno, Pit, Apples to Apples, etc.) is what she cherishes now. As I mentioned last week, just riding in the car somewhere,
anywhere is a treat. For us, the birthday was simple, it had to be and Camryn understood that. What
Lee Ann and I really appreciated about this 12 year-old's reaction to her simplistic birthday party, was her positive reaction to all of it. She completely understood the situation, embraced it, and loved it. Camryn was grateful for just being able to celebrate her birthday, and many more to come. As I lay in bed later that night, having a few precious moments to myself, I pondered the experience and found significant meaning beyond "the birthday party". I humbly recognized the eternal lesson that was taught to me and our family by this precious 12 year old girl. The kid was going to be thankful for the birthday and for her birthday party, regardless of the restrictive circumstances. Not one single complaint. In fact, the "it's not fair" attitude has not once crossed her lips from the day she was diagnosed with GATA 2. Thank you Camryn, for demonstrating to us the meaning of the word "gratitude". May we be wise to implement the meaning of the word "gratitude" in our own lives.