In an effort to not become totally and frighteningly overwhelmed with what we have planned in the next two weeks I chose to ignore a lot f the details that I was forced to hear about earlier this week.
So far so good.
Unfortunately what I hide away always come back out and makes itself known.
I found this out today when I was laying down with Piper for her afternoon nap. She is doing fine, happy even...still, she has the cancer look. The tired and red eyes. The pale tone. The skinniness despite eating well and pooping normally. I make myself not focus on these details by covering her head with a pretty hat or throwing food at her all day but still the facts remain that within this beautiful child that I love so passionately is leukemia. It is hiding. It is going to be fought against with a vengeance but still it lurks and affects so much.
And when I laid next to her in her bed and she smiled at me and clasped her hands under her chin, as I do when I sleep, she broke my heart. I tried to keep the tears at bay because it's not the best thing for confidence boosting if mommy is lying prostrate on the floor sobbing like someone spilled my Cheerios. But still they leaked out. And continued to despite my best efforts of smiling and kissing. And she smiled and kissed me back but her forehead was furrowed and she was using her little fingers to trace the tears down my cheek. And my heart would not stop breaking.
So that was the cautious beginning of a breakdown that I surely deserve but have no time for. The appointments on Tuesday were just labs and meeting with Dr. Haight who will be one of the transplant doctors managing Pipers care. We also met with social work and a psychologist who was impressed with my families support system...which really is amazing. On Wednesday I begged my mom to come with us as we had appointments beginning at 7:30am and finishing at 3pm...everything from testing her liver, to meeting with child-life specialist, to chatting with the financial advisor, to an echocardiogram and completing this day with the frightening meeting with the radiologist. So much information and so much fear ...they are calling Piper a complicated case because she has had active CMV and because she is still not entirely disease free. Her lab work showed a slight elevation in her liver numbers so they have chosen to not give any more methotrexate or vincristine until she admits in an effort to have then heal before ravaging them. They are pleased that she is walking much more and that she is just so blasted good. And happy. And totally oblivious to all that is heading her way.
One thing that I found interesting from my meeting on Tuesday was that Piper, though she looks genetically common, actually was not an easy child to match for this transplant. I believe she had multiple options but for some reason or another they ended up with a match in Europe. Yep, Europe. The whole process is very, very, very private but we do know she is a 32 year old female. Hopefully this transplant will go as smoothly as possible and someday we will be able to get in contact with her and thank her for this amazing gift she is giving. Until then we just pray she continues to clear all the genetic and infectious disease testing. See, details that suck a person dry.
So now we continue to make big memories and take so many pictures. Irregardless of how successful this transplant is we will not have happy and healthy Piper back for a while. And Linley will not be able to love on, sleep with or boss Piper around like she should be able to...all in due time we pray. And we really, really, really pray for this to be only a dry, painful season that is followed by rejoicing and testimony.