He always had a big grin on his face, despite everything he had gone through. Several open heart surgeries as a young child. A stroke. The long wait for his second chance at life. A tough battle with a flu infection that landed him in hospital again and damaged his gifted heart. The last time I saw him was in the hospital around Christmas time. He was hooked up for several hours of plasmapheresis, he had a wound that wouldn’t stop dripping blood, yet he was still smiling.
It’s a fear that never leaves the dark corners of your mind. Will that be us one day?? No one has that answer to that. But I do know for certain this will not be the last memorial service we attend for a member of our transplant community or BC Children’s Hospital family. This is the stark reality of transplant life and life with a chronically ill kid.
The protocol at SickKids in Toronto, a much bigger transplant centre, is to keep children who have had no issues with rejection, at a trough level between 4-6. Addison has been running around 3, sometimes even dipping below 2. Our cardiologist feels that it’s time to get her levels back up to normal because her kidneys have been doing fine and there is real concern that continual low immunosuppression can lead to chronic rejection. Aaron and I were very wary of this considerable jump in Tac, but we had a good discussion with him – ironically just before we left for Cody’s service – and are moving forward with it. This means extra blood work in the short term to keep on top of it, and possibly pharmacokinetics testing down the road if things go wonky.
There is never a clear path on this transplant journey, and sometimes it just freaking sucks. But I am so incredibly grateful we are still here. I’ll take all of this heartache and uncertainty for the opportunity to keep going with Addison. At Cody’s memorial service, his mom Elena talked about how there was one thing she didn’t regret. They gave Cody everything he asked for, even allowing him to cash in his RESP to buy his first car. This was just at the beginning of January. Cody was so thrilled with his big purchase.
He never even got a chance to drive it.
Elaine, Aaron, Addison and Charlie