The past two days have felt long and have come with an overwhelming amount of information. Yesterday my stomach was in knots all day anticipating our meeting with the oncology radiologist - why are they talking about radiation on her leg if the biopsy was free from tumor cells, will it effect her growth plate, why does she have to be put under essentially 11 days in a row... all of these questions and more were swirling around in my mind. We arrived and waited, walked around, and waited, I thought about what questions I wanted to ask, and waited.. the doctors were over an hour late seeing us. I had never met the radiologist so when two men walked in the room I assumed one of them was the Dr. Douglas we were meeting with.. they came in, made a quick introduction ( both residents) and stared talking about radiation, Georgia's condition, recent biopsy and finally we looked at him and said, so you're not suggesting radiation? We had been told by several attending doctors over the last couple of weeks that the recommendation that had been made by the SCCA transplant team was radiation, we were told dates she would receive radiation, the dose, and now was it possible that my wish, my prayer was coming true that they were telling us that they weren't recommending it.. yes. After a very confusing conversation with the residents we were finally able to talk with the head oncology radiologist, he said the benefits didn't out way the risks, that they were very pleased to see the biopsy results and how active Georgia is, that radiation to her leg would almost certainly shorten her leg somewhat... for the first time since all of this began I finally heard a doctor say "if this were my child"... he said, if this were my child I would not do radiation.
Today we had a long meeting at the SCCA, our first visit of many to that location. People come from around the world to receive transplants here, they literally gave the first transplant ever and the office is about 20 minutes from our house. The waiting room was filled with adults, not the lively group that I am use to seeing on the SCCA floor of Children's Hospital. We were shown to a room and in came one of the attending doctors on the Transplant Team. She was very nice, calm and seemed to asses us as she came in the room. I felt like we went into this meeting knowing quite a bit of information - or should I say more plainly, we'd already heard the big and bad details so I didn't have to put my head between my knees like the first time I'd heard them.
From a very high level transplant is like a reset button - Georgia's immune system isn't what we'd like so we're trading it in for a better model so to speak. For myself and Brian, we need to know it on every level - there will be seven days of intensive chemotherapy to rid her body of her current bone marrow, the new bone marrow will have to in graft over a long period of time, she will be on immune suppressant drugs for about a year (up to three years) the doctors will look for signs of graft versus leukemia (a good condition) and graft versus host (a bad condition). Every single thing in this process comes with a possible side effect - too many to list or remember. There are drugs that counteract the side effects of other drugs, pain medication, nausea medication, IV drugs and on and on. When we are done and home again we will resume life as it is now, in somewhat of a bubble, a cold that would give one kid a little sniffle could land Georgia in the ICU. We will be trained on giving Georgia IV drugs, she will be very closely monitored for the first year and assuming all goes smoothly the time between visits will become longer.
All of this heavy, heartbreaking information and Georgia was letting out her loud happy screams, smiling, waving and doing her latest trick - when I say hooray she raises both hands up over her head... she is thankfully totally oblivious to everything that is being discussed. Someday, long from now maybe she'll read this and understand that we will do anything, walk through fire if that's what it takes to cure our baby girl.
The AML tumor cells are dead and gone... watch out JMML, you're next.