Wow, what a busy day today!
We were out the door by 7:20 this morning, for a 7:45 radiation treatment. Only 18 treatments left to go! It’s funny – as horrific as it is to have my 6-year old go through radiation treatments, the team at Backus is so nice, so good to Amber, so good to us, that it doesn’t feel as bad as it should. I guess that’s a good thing – it’s just the dichotomy that strikes me so much.
Then off to Children’s Medical Center in Hartford for a 10:30 check-in. By noon, Amber had her new g-tube in place, and had a couple dozen stiches removed from her scalp. All those Stinkin’ Stiches, as she liked to call them, are gone – and she is healing up really well. Again, the contrast between the very visible healing of her scalp and the unknown of what the GBM may be doing inside her her head strikes me deeply.
And then, after sleeping off the sedation for almost 2 hours, we headed upstairs for a combo visit with Oncology and Nutrition. Amber’s weight is doing very well, so we are starting to cut down the supplemental overnight feed. Even after the sedation and procedure, Amber was asking for a snack, so there are definitely no appetite challenges there! And no changes with Oncology, continuing the course with radiation until the end of June.
So we continue with this new status quo, each step showing positive progress, taking progressive bites of the whale (with much of the elephant carcass now behind us), but knowing that we are far from out of the woods. We pray to be shown that path out of the woods, no matter how many twists in that path, and no matter how often we stumble.