We were wrong.
Although my last post mentioned Maddie’s CT scans showing very little chance of her having Post Transplant Lymphoproliferative Disorder (PTLD), recent tests prove otherwise.
PTLD is defined as the following:
Post-transplant lymphoproliferative disorder (PTLD) is the name given to a B-cell proliferation due to therapeutic immunosuppression after organ transplantation. These patients may develop infectious mononucleosis-like lesions or polyclonal polymorphic B-cell hyperplasia. (Wiki)
In other words, it is a precursor to Lymphoma and is treated like a cancer. Fairly soon, Maddie will begin chemotherapy treatments to eradicate those EBV infected B cells before they become masses throughout her body. Here is a journal article on PTLD discussing the cause and treatment in more depth, if you’re looking for something to do to waste time.
As it is, the PTLD has already begun destroying parts of Maddie’s healthy cells and tissue. Yesterday, we finally had the scoping procedures that we hoped would provide answers for her stomach pain and endless fevers. Otolaryngology, Pulmonology, and Gastro-Intestinal units scoped through her sinuses, lungs, and intestines, respectfully. Each team found something of significance but the GI doctor found the source of the internal bleeding. She has giant ulcers in her large intestine. The biopsy of the tissue taken from that confirm that Maddie has PTLD.
There is more to explain but I am nodding off as I try and type this update. We’re all exhausted. I know that I left you all on a happy note, believing that we’d be home for fireworks on the 4th of July. But the truth is Maddie has been struggling all week. Pain and fevers and more pain. It has been miserable for everyone.
This isn’t the news I wanted to share and I’m sure it’s not the news you wanted to hear. But this is our reality. We will be here for an indefinite amount of time as we now begin work with the Oncology team. Tests and more tests are planned and treatment schedules are being worked out to begin on Monday.
At least the waiting, living in limbo and feeling helpless about all the unknowns, is over. We still don’t know what will happen in the coming weeks but we take comfort in putting a name to what we’ll face and are grateful knowing there is treatment for it that can be successful.
Again we ask for your faith, positive energy, and prayers. Knowing is much better than not knowing.