They believe Angels transplanted small intestine are in severe rejection. Today he will begin massive immune suppression to try and save the transplant - and Angel. It is very rare for a transplant to reject after 6 months of chemo and radiation, but that is Angel. Rare. In all the most wonderful and terrifying ways. What caused Angel to get cancer was the amount of immune suppression they did last summer when he was in rejection. So doing MORE immune suppression is..... well.... :( No words. Possibly the most difficult thing at this time is how awful Angel feels. We have faced a lot of things with him, but seeing him in pain is unbearable and, thankfully, pain has been a rare thing. His quality of life, EVEN through chemo, has been good. This is not good. The battle has begun. Rejection. The steroid pulse (crazy, insanely high amounts of steroids IV for a week) they will use to treat the rejection has made the pain improve in past rounds of rejection. We are praying it is the case again and that he will be FEELING better within a few days. Everything feels less desperate when he is feeling better. In the meantime he is lying in a dark room, in and out of sleep and in great pain. He has spiked a temp and we are willing him to keep his blood pressures and oxygen saturation stable. He is still stooling large amounts of blood all blood products. But for NOW, he is stable. He is on his pediatric floor with all his people and even in the same room as 2012 transplant and the last 6 months of chemo. In his words he is safe. My younger children, upon hearing the word rejection asked wide eyed But.... will we be home for CHRISTMAS?! :( I do not think so my babies. They both agreed Christmas at home without Angel would not be fun anyway. So we prepare ourselves for birthdays (both boys in December) and holidays in the hospital. Our hearts are heavy. Our hope is not gone. He is not dying. He has just engaged in the next big battle of this epic war called Angels Life. Need to get him back to that quality that matters to HIM. The rest of us can all hang in and deal with the disappointments, living away from home for nearly a year, and whatever else being at his side entails. We have a lifetime to be comfortable. Fighting alongside this hero which God has entrusted us is worth every difficult moment. You do not grieve unless you love... and there is GREAT LOVE here.
Posted on: Fri, 14 Nov 2014 00:00:17 +0000
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