Been a while since we’ve posted but I think that’s how it goes as we get farther from the transplant. Cara’s blood work has all been good since day 100. The panel of testing they did around day 100 all came back as expected for the time in the transplant process. Her lymphoid cell lineage is still a little bit low (~30%), but they expect that to go up once she’s totally off of the immunosuppressants (tacrolimus). Cara was on track to be off of the immunosuppressants by the end of March, has hd some GvHD pop up (more on that below).
Cara got her feeding tube out which was super fast and went well. She had stopped using it for two weeks and then they went ahead and took it out since her weight was steady. The stomach lining heals incredibly fast and the bandage they put on the hole had nothing on it - pretty amazing. We’ve stopped counting calories which has been really nice to be able to just have Cara eat whatever sounds good with a baseline of what we know she needs to eat to a good high calorie day.
They’ve stopped taking CT scans because the slight ground glass appearance they kept seeing was not changing. They think it’s nothing from an infection and Cara was able to come off four large Posaconazole pills for a while (again GvHD messed this up).
Cara is still having the mouth numbness and it has even seemed to get a little worse since getting a little better sometime in December. Not sure why the change but the timing is somewhat lined up with when she’s taken Tibsovo. She started taking Tibsovo in round 3 of chemo about a week before it started, and then it go a little better after the transplant and she came off of the Tibsovo during the transplant. Then she went back on it again to keep the cancer at bay and a little later the mouth numbness got worse. There’s so much going on all the time with meds and symptoms though it’s hard to tell. Neuropathy is not one of the side effects listed for Tibsovo. We’ve reengaged with the Palleative care team and they had already done some ground work to come up with a potential diagnosis: ideopathic burning mouth syndrome. There are some things we’re trying to counteract some of the symptoms, so we’ll see how that goes. Some of the things we were going to try are on hold until GvHD is treated.
Last week Cara started having rashes on her chest, back, arms and legs. After looking at them the nurse practitioner said it looks as expected for GvHD so they started Cara on prednisone (steroids) to suppress her immune system and stop it from attacking her body. They also moved her dose of tacrolimus back up. Additionally, she went back on the antifungal (Posaconazole). Hopefully the rash clears up soon and she’ll taper off the steroids, stop the Posaconazole, and then start the taper off of tacrolimus again. It’s a balance because we want the new immune system to attack and remove her old immune system, but we don’t want it to attack any of her organs.
Cara is getting stronger every week. She’s been doing some kid pickup/drop off stuff, some of her meal prep., and organizing some things that we’re driving her crazy but she didn’t have the energy to get to earlier.
