Thursday, March 1, 2012

BMT, coming up....

Okay, so that totally sounds like a sandwich order, but for those who aren't as hip to the lingo, BMT is short for Bone Marrow Transplant, and in case you haven't heard, Miss Boots has found a 10/10 perfect match--something they told me was next to impossible from an unrelated donor. A few weeks ago when I spoke to the BMT coordinator (STILL sounds like a sandwich!) she said that they had found a donor who was a 9/10 match, and a back-up who was an 8/10, and she assured me that the 9/10 was "as good as it gets". It was the best we could hope for from a non-related donor, and we were happy with that, as long as we had a shot. Then yesterday, I get the miraculous call from the BMT coordinator, delineating a bunch of tests they want to run on Miss Boots pre-transplant, and she says, "Oh, by the way, did I mention that we found a 10/10 donor?" I ran through the previous details she had given me, and she confirmed that, yes, while the 9/10 was the best that we could hope for logisitically, a 10/10 miracle came through sometime in the last week, and we are ready to go.

Today has been a blur of tests and thankfully, Miss Boots got a good night's sleep last night and was in a good mood, so she handled it all beautifully. When the technician came to do her ECHO, basically, an ultrasound of her heart, she chatted jovially with her and insisted that she turn her heart pink (last week, Sarah had another ECHO done, and the same technician amazed her with the many different colors in which she could display her heart on the screen. Guess which was her favorite?) She played with the physical therapist without throwing a tantrum or complaining. She lay extremely and uncharacteristically still during her EKG, even though the 20-some-odd wires they had stuck to her were kind of freaking her out. She sat quietly and as patiently as possible waiting for her x-ray, only asking me twice what was taking them so long (a RECORD, if you know Miss Bossy Boots) and didn't freak out at all once we were in there. She even posed for a picture while we were waiting!

It was only when I had let her stay up a half an hour past her bedtime and I asked her to clean up her toys did she start to throw a fit, because her very complicated Lalaloopsy story line would just have to wait until tomorrow. I don't understand why this upsets her so much. I mean, Rosy Bumps n Bruises can still change her specialty and be a vet tomorrow, right? So, a quick sponge bath and two stories later, she is finally asleep, as well should I be, because they want to wake us up at dawn (okay, 8:30, which is just as good) to perform a kidney function test. At the very least, it is the final test and then we can just go back to waiting for the unnecessary CDIF results to come back (again) so we can get the hell out of this room.

A Word on the CDIF, in case you're confused. CDIF is short for Clostridium Difficilie, a bacterium that resides in the intestines and causes diarrhea when competing bacteria are wiped out by antibiotics. It is resistant to alcohol gel and highly contagious. But here's the thing. Sarah had it once, a long ass time ago. This time around, they are giving her high-dose Ara-C, which is known to cause fevers. Not to mention that Sarah is prone to fevers anyway. But, since they can't be sure that it's the Ara-C that's causing the fever and they want her to be covered in case she has something else, so they start her on antibiotics automatically. Now, certain antibiotics have a natural side-effect of diarrhea. So, she gets the fever, they give her an antibiotic, she's okay. But the fever persists (because of the chemo), so they add another antibiotic on top of the one she's already taking. Her diarrhea gets worse. Now, they think it's CDIF and they have to run tests, but while they do that (and might i add that the tests take FOREVER to come back) we have to be in isolation which means my little social butterfly who loves her walks in the hallway and playing with other kids in the playroom is confined to her room and doesn't see anyone but me and medical staff for days. FUN STUFF. And I know she doesn't have CDIF. I know my daughter, I know the effects these meds have on her, and I am even more vigilant now that what I notice or don't notice could threaten her life. But they have to be sure, and I suppose I'd rather be safe than sorry.

This cycle of chemo was much shorter than the two others, just three days, so the chemo part is over, and now (other than the @#$%ing CDIF) we are just waiting for her counts to drop and come back up again, so that hopefully we can spend at least a few days at home before transplant. Sarah is scheduled to be admitted for transpant March 19. Then, according to the packet that was left for me while we were down in X-Ray and further explained to me on March 8 when we meet with the doctors, it looks like they prep her with a regimen of drugs before the actual donor transplant takes place on March 28, 2012. A day that will forever be a holiday to us, because it will be a day that a random stranger gives us a miracle.

It all seems surreal and somewhat overwhelming, but so did everything else; her initial diagnosis with ALL at just twenty months old. God. Twenty months. She was still a baby. But we made it through all of that. Then, a few months ago, she was diagnosed with a secondary cancer, AML. And it all seemed scary and new and overwhelming. But here we are. We made it through that. This is it. This is the phase that will save my baby, just one more thing to get through, but the most important, the most grueling. We can do this. Bring on the BMT!

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