We're here, we have come to the point post transplant where it is time for a review conference and that feels huge.
Yesterday Georgia had an MRI on her left leg, the place where her body first showed us that something was terribly wrong. For the past several weeks I kept looking at her leg, feeling it, analyzing her movements and praying that we would get the results that we were hoping for. Naturally things at Children's were running late so we found ourselves wandering the halls... I was walking Georgia up and down and on our way back stopped in front of the Radiology waiting room.. I looked into this empty room at the very chair Georgia and I sat in back in October, I still have moments where I still can't believe this is our reality.
After her MRI we had a clinic visit at the SCCA, the current attending is not exactly what I would call a cheerleader.. her comments have been, "so it looks like Georgia has finally gained a little bit of weight," or "are you doing speech therapy, I haven't heard her talk much" ( for all of the 10 cumulative minutes you've spent with her that's shocking isn't it?). Yesterday was no exception she said they'd let us know when the MRI results were in because "we're all very curious what they will be"... this coming from the doctor who really wanted us to do radiation on her leg. All evening I kept checking the clock and my phone - it was too late for anyone to call with results.
This afternoon we went to the SCCA and sat in the same room where we had the pre-transplant conference, now, here we were reviewing all of the work that has been done. We met with the same attending who lead that first conference, it felt good to be wrapping things up with someone who knows all of us so well. He took us from the conference room to one with two computers, there on the screens were two MRI's one from October and one from yesterday. As he reviewed the pictures with us I payed attention to everything, the pictures, his tone, his expression and of course the words coming out of his mouth. He said that ultimately there are still abnormalities but that after closely reviewing them and consulting with the orthopedic surgeon who has worked with Georgia since the first biopsy (and who was called out of the OR to review these results) and with our Oncology doctor, all agreed that this was most likely a healing leg. The tumor that was on her leg was so aggressive it's hard to believe it would be there and not be destructive like it had been. This of course is all a theory, we will need to keep a very close eye on her leg so she will have another MRI in one month.
Now our true review of the data could begin, all in all the attending said the late VOD was the only "hiccup" during the transplant... he acknowledged that we of course likely felt differently about the process. All of her Day 80 results show 100% donor and her GVHD seems to be well controlled with steroids. We talked about tapering three of her drugs, both of the steroids and one of the immune suppressants over the next two months. For the first time I asked how do we move our lives closer to normal. Over the next three months as we taper these drugs it will show a lot about her new immune system and if GVHD will continue to be a factor. We were given the ok to play with our (healthy) cousins which will be so good for Georgia, she has missed out on normal kid interaction. We were also told that because she was able to avoid total body irradiation she isn't at an increased risk for skin cancer which is a huge relief. We will still need to be very cautious for a year after she is off of any immune suppressants as a sunburn can activate skin GVHD but overall we should treat her like any light eyed, fair haired toddler in the sun.
We have one more clinic appointment with the SCCA then will transfer back to Children's Hospital where the docs will watch over Georgia's continued healing. We still have a very long way to go in this marathon but it feels like maybe we're hitting our stride.
