It seems Ava has relapsed only in her skin, according to the pathologists at Lurie's. They saw leukemic cells in the skin and with special staining saw that the cells were consistent with T-Cell ALL. Her marrow and spinal fluid are clear. This is a very rare condition called Aleukemic Leukemia Cutis. I shouldn't have googled it. I feel sick to my stomach and, I'll share vulnerably, it takes everything in me to convert my thoughts to hope rather than the impending feeling that this is the beginning of the end.
ALC can precede any disease to marrow and peripheral blood and by the time it is diagnosed it can be a dismal few months before it becomes fatal. At this time, there is no solid plan in place as we are still seeking a second pair of eyes from Seattle to look at her cells. One treatment plan would consist of a second transplant, and most likely it would be a haplo-identifical transplant which means that they would use either Mike or myself to be her donor. Does this sound crazy and last ditch? It's because it is.
We humbly accept your prayers that Ava's skin would miraculously not show any leukemic cells when looked at by Seattle. We pray that this is a very sick mistake. Our sweet, brave girl has been through hell and we are pleading for her to have a break.
But, if this is indeed ALC, we pray that she would beat the 80%+ odds of failure and that she would rise up against this and fight with all the strength that her little body has left.
We are in Champaign now enjoying our ignorance and spending precious time with family. I went to large group for the first time in years and the sermon was about dreaming dreams for your children until they are ready to dream them for themselves. I admit, the minute I got the call, I stopped dreaming for Ava and I spent time in mourning.
I want to dream big things for Ava. Because no matter how far the fall is and how painful it will be if they are not realized, I want to hope for her and to point her toward joy and love and God. As long as she has breath we will stand by her and choose to live and live and live even if we'd rather just die.
(We have not told Ava anything yet, so please refrain from emailing or discussing any details of disease with her. We want to let her have as many days possible enjoying herself.)
(FB post from Mike):I'm hoping, dreaming, praying for an honest mistake. I've never so desperately wanted an error or mishap to have occurred. I'm imagining all the good that can come out of someone messing up. Thank God no one is perfect.