Yesterday was quite possibly the most difficult day that I have had in ages. More difficult that diagnosis, more difficult than relapse even. Difficult, dark and despondent.
While out to lunch with Piper and some family, I received the results of the bone marrow aspirate from Tuesday. Pipers little body still has 2% cancer cells roaming about. She had 68% when she relapsed so there is a definite improvement but not enough that they consider her in remission. Because they were hoping that Piper would be in remission they have now begun calling St Judes and the National Cancer Institute to get additional opinions as to what is next.
We have a few options on the table:
1) more conventional chemo to achieve remission then a bone marrow transplant asap.
2) go to bone marrow transplant even with the few leukemia cells we see.
3) attempt experimental chemo and then a transplant.
All of these are possibilities...Dr. Bergsagel began making the calls on Friday and Chad and I have a consultation with the bone marrow transplant team on Tuesday at 10:00am to review Piper and to hear what plan they have all come up with. After that appointment at Egleston we will go over to Scottish Rite and have a clinic visit in which they will do the typical CBC and if there is leukemia showing up in her blood work we will be immediately admitted and chemo will begin again. If there is not suspicious cells within her blood work we will proceed aggressively with the treatment decided by the transplant team within a few days.
When I spoke with Dr. Bergsagel on Friday at lunchtime I felt a wave of pure terror roll over me. Physically my head began to throb, my chest began to ache and my fingertips became numb. Somehow I managed to ask more questions and I managed to confidently relay all of this information to my mom and sister and later, to Chad. I remember little of what I said. My fingertips did not regain feeling until dinnertime and my sobs were hugging the back of my throat with a ferocity that only fear can retain.
For the first time ever I allowed my thoughts to go there. To think of losing Piper. To acknowledge that the chance of losing her outweighs the chance that I will cry tears when she walks into her kindergarten class someday. And once I began to imagine how I would feel or how things would be without Piper Jean Needham growing in my care I lost it. It took 3 glasses of wine, one nighttime cuddle on a balcony with Piper, the company of dear friends, almost an entire bowl of chocolate, a warm fire on a chilly night and the way my Linley likes to dance to rise me out of my funk. When I crawled into bed with both girls and Chad I had calmed myself. I was no longer imagining how I would respond to people asking if Linley was my only child or what I would do with all of Pipers toys. I had forgotten the words I would speak over Pipers small body and how I thought I would handle seeing other children grow up while my own daughter was not given that option.
Let me be clear now. Nobody is saying this is the end. Medically speaking there are still many options...and we will do what it takes. She is not failing...she is fighting. Pipers oncology team is still tentatively optimistic for a cure, but the longer Piper fights the smarter her cancer grows. If I ever viewed leukemia with rose colored glasses ( and I don't think I ever have) I no longer do. I have seen too many families struggle, to many children die before their time and too many times I have hoped and prayed to not be tested that much.
Yesterday and today I cried. I allowed myself to feel the depths of my fears and I do not like it one bit. There is no time for whining or complaining. No time for fretting or fearing. All we have is the moments...hopefully, these moments will connect and Piper will have a long and beautiful life ahead of her. It is possible.
What is not possible is allowing those dark possibilities and plans to come to hinder my only goal. To love God. To serve Him. To attempt to be truly faithful despite what my heart feels...my soul rests in Him. I have a trust and an intimacy with God that I do not believe is possible before experiencing the head throbbing, chest aching, numb fingertips blatant knowledge we are nothing without Him. My emotions and whimsy have no place when I profess to trust Him.
"Trust in the Lord with all your heart
and lean not on your own understanding
in all your ways submit to Him
and He will direct your paths"