This will have to be short as I am exhausted and the ever so comfy sofa bed is calling my name.
Pipers bone marrow aspirate from last week was inconclusive due to a lack of white cells due to the prior weeks chemo... Keep in mind no one was expecting to not find leukemia but because this is experimental stuff here, there are many T's to cross and I's to dot... On Monday she had a repeat aspirate done and while that sample was also difficult to read due to clotting seen in the machine, they were able to manually look at the sample and see "a large amount of disease"... Which is what is necessary to begin and so yesterday afternoon I signed many consents as both Pipers donor and as her mother.
In following the eligibility of this study she would have been able to begin today but they are still awaiting results from the battery of infectious diseases she must be screened for...nothing to my knowledge as a specific concern. Because there are so many things to screen for, there are so many vials
of blood necessary...and this has to be done over a few days in order to not deplete her body of too much hemoglobin at a time. As it is she has been getting blood products every few days. Thankfully this is not uncommon and surely doesn't phase me.
Tomorrow we should be good to go. Five days of three different types of chemo; cyclophosphamide, clofarabine and etopisode... All pretty intense so the week post chemo should be rough. And I will be doing my NK cell donation on Tuesday for her infusion on Wednesday. Post this NK transfusion, Piper will receive a shot of a medication called interleukin 2 ( used to stimulate the nk cells to seek and destroy cancer cells it comes in contact with) every other day until there are no traces of my NK cells to be found, up to two weeks or so. I'm more than scared...while I know this treatment is intended for children with a lot of disease like Piper and that she is an ideal candidate, this whole process is new and foreign and more than anything we are literally at the end of treatment options for her.
If this doesn't cure my girl, there are no other rabbit trails to follow.
This very fact has made my whole soul hurt lately... The unfairness of it all can slam me in the face and yet there are no moments for wallowing in it all.
It must work.
Meanwhile Piper continues to perk up. After a few rough and quiet and moody days she has begun to show this facility what most of us already know...that my Piper is amazing. She is quickly becoming a favorite here on the floor and is wooing most doctors and nurses and therapist who come in contact with her. She has eaten like crazy today and I hope she will continue to have a few good days before the chemo catches up to her. The rash still is bad looking but it is clearing up on her face and she has begun to peel. If indeed, it is GVHD we will see an improvement when chemo begins to attack those pesky cells. If not I have no clue... They are still pretty baffled about it all.
I hope I make sense when I ramble on. My heart hurts today... It marks one month that fellow infant leukemia friend Paxton has been gone from her mommy and daddy. And I also heard from a fellow cancer family back on Ga whose daughter recently relapsed. I grow so very weary of this fight sometimes. Of crying with other mothers and worrying with other families. Of smiling at children who you know have little chance and of making myself chose Hope each day despite the massive odds that are stacked against not only my own child but most of the children we see here each day.
My soul is firm but my flesh is weary.
Come quickly Lord, come quickly.