Yesterday was a long day…..12 hours of testing and talking to all kinds of hospital staff who represent different aspects of Donovan‘s case. We’re apart of a different hospital now, as they have a more advanced transplant team, which Donovan needs after all.
Our next move is very crucial in his survival. After completing his organ transplant listing work up, we received news he cannot go on the list quite yet due to his Covid-19 test. He tested positive again. Infectious disease thinks he‘s shedding the virus and his cycles of chemo brought it back to the surface essentially. I think some of the swabs just weren’t administered deep enough into his nasal cavity to get to the live virus. So far he’s had 6 Covid-19 tests. Half were negative and half were positive.
His latest positive tests means his transplant will be slightly delayed as they don’t want any complications during or after surgery. This leaves us nervous as we don’t want his cancer to spread to another organ or vessel which would change everything completely.
There‘s a big meeting taking place tomorrow which involves his surgeons, nurses, his old and new oncology team, infectious disease contacts, radiology, and different pediatric transplant teams nearby. This meeting is very important in that the next move for Donovan will be determined. We will find out if his tumor has gotten larger, if it has spread anywhere else, if he can be listed on the organ donation list soon, if he can have surgery despite Covid, and if he’ll need more chemotherapy in the meantime.
My mind is going crazy waiting for the answer. There is only so much Netflix I can half pay attention to without coming right back to my own fears, discomfort, and anxieties.
Everyday I try to find something I’m thankful for. Today I’m thankful for 2 things. I’m thankful I get to be home with my boy away from the extensive testing and not hooked up to so many machines. I’m also thankful we’re in the northeast and have access to some of the most state of the art medical techniques, testing, and professionals. Being apart of a research hospital has given us an extra option for his transplant surgery. Donovan is a candidate for a liver from a child roughly his size who needs transplant also, due to metabolic disease. This is called a Domino Transplant. A child with Maple Syrup Urine Disease can resolve their disease with a new liver, but their liver can save Donovan as it will operate perfectly in another body. Donovan would never develop the disease himself even with that child’s liver because his muscles are different. This could be something truly amazing for my little avocado.