Way way way back in September at Transplant Clinic when our team told us we didn’t have to come back for six whole months we all did a little happy dance. While there was still monthly blood work (and will be forever) and a couple of check-ups with her pediatrician for various assorted cold, cough, snotty nose type illnesses, Addison was blissfully hospital-free. Of course it’s when the road ahead appears so beautifully smooth that you are bound to encounter a little pothole you never noticed, until the very last second.
So a couple of weeks before her MOT (Multi-Organ Transplant) appointment, I noticed a bump behind Addison’s right ear. When you have a transplant child, there is no such thing as a regular lump or bump. Once I realized there are lymph nodes right behind the ears (thanks Dr. Google), I ramped up into full freak-out mode. Fresh on my mind was PTLD – post transplant lymphoproliferative disorder – a cancer that’s a side effect of transplantation. It doesn’t happen that often but it does happen. And we know this first-hand because one of Addison’s transplant buddies has spent the past several months on a tough regime of chemotherapy to fight PTLD. Needless to say I had a little bit of a panic/meltdown. You spend so much time crawling your way out of the deep dark hole of paranoia, fear and worry that sometimes you forget it’s right behind you. One step in the wrong direction and you could easily be back at the bottom.
After a flurry of emails and calls back and forth with her transplant nurse, cardiologist and pediatrician, within 48 hours they got the Princess in for a check up. I’m happy to tell you everything is just fine. Her labs were excellent, most importantly her virology is all clear (most PTLD is caused by the Epstein-Barr virus), and the characteristic enlarged lymph nodes of PTLD are actually lower down underneath the ears on the neck. I can’t tell you how thankful I am we have such an amazing team behind us. Everyone completely understood my extreme concern and never tried to minimize my worry with platitudes. Now the lump is gone.
It was almost anti-climatic when we had our full MOT clinic at the beginning of March. Her heart is looking fantastic. Her Tacrolimus trough level was a little bit low, which makes sense since she is growing, so that was increased a little bit. We are due for another biopsy in a few months. Bleh…not looking forward to that whole routine. And Addison will also have a GFR to test for kidney function this year. I can’t help but feel anxiety around those big procedures. But not going to dwell on that right now. Coming up in less than four weeks now, we have a big birthday celebration to plan!!
Elaine, Aaron and Addison