We had a great time at the Balding for Dollars fundraising event on Saturday. Eric held a snake and petted a turtle, won a stuffy and some candy, and ate 4 sno-cones. I won a lovely basket with wine and snacks in it; Eric immediately claimed the sweet and salty popcorn. I told him he had to share his popcorn and I would share my wine. Apparently, I am not funny 🤷
Sunday the kids both went out to a birthday party where they watched the Minecraft movie. It was nice to have a few hours kid free!
Eric didn't want to go to school Monday. Apparently, Balding for Dollars and a movie was a busy weekend and he was tired. He planned to go to school Tuesday, but then didn't sleep well Monday night, so didn't go Tuesday either. He doesn't seem to be feeling nauseous at all, which is great, but the treatment does make him quite tired.
Wednesday we headed into clinic for Eric's check up. We didn't have to leave until 9am, but traffic was still brutal and we ended up a few minutes late. Appointment was same old: port access, bloodwork, wait, platelets ordered, wait, pre-meds, wait, platelets, home! Though, Kristina from Child Life had purchased a roller coaster toy that she thought would be fun for the play room and it turned out that it actually had to be built, similar to Lego. She enlisted Eric to build it for her and told him she would reward him for his efforts with a Lego set. He was more than happy to help! The set is pretty big, over 1000 pieces, so even though our appointment was over 4 hours, he didn't quite half finish it. Kristina put it on a big tray so he can keep building at his next appointment.
We had a Fellow come in to do Eric's exam and then his Oncologist came in to chat with us a little. Chuck and I had a follow up Zoom call with his Oncologist at 5pm on Wednesday as well, so that we could have a more detailed conversation. These conversations are always hard, even though we decided literally nothing and didn't even learn much more than that.
First, Eric's bloodwork continues to show a much higher than normal number of reticulocytes. This is an indication of functioning bone marrow, making these baby red blood cells. However, they are not (yet) materializing into an increased hemoglobin count, which is a bit confusing. They ordered some additional tests on the bloodwork and a urine sample to ensure nothing nefarious was happening, like his body attacking and breaking down his red blood cells, but everything was negative. Eric's doctor says that the increased hemoglobin may still materialize and reminds us that he hasn't had a blood transfusion in over a month, so we are seeing some stability, even if it is at a low number. With all the caveats, his doctor says this might possibly maybe be a positive sign.
At the beginning of this cycle, I had mentioned another treatment that we had planned to add in. This was called a Donor Leukocyte Infusion (or DLI) and basically is a "top up" of cells from the original donor. However, in discussion with Eric's Oncologist we've determined that doesn't make sense at this time. It has a relatively low success rate, especially for someone who has all their donor cells in the T Cell lineage, which Eric did when we last did the split chimerism test back in January. I'm always willing to give things a try, even with a low success rate; however in this case, there is a fairly large chance of a negative outcome. The DLI could spark GVHD (graft versus host disease) in any of Eric's organs and especially in his lungs, where he had it previously. We would then have to treat that, which complicates matters, and there's the potential that treatment would not be successful. Another bout of GVHD would also limit our ability to engage in other potential treatment options down the road. All this to say, at this time, this is not the right option for Eric.
Eric's doctor ordered a split chimerism blood test on Wednesday. Between that and the results of the bone marrow biopsy that will come at the end of this cycle, we will be able to decide on next steps. I believe that if things stay the same or get better, we will repeat another cycle of IV and oral treatment. If things are worse, either lower donor cells or increased leukemia blasts, we may be forced into a more aggressive treatment.
Eric finishes this round of oral treatment on Sunday and has appointments Monday and Friday next week. Friday will be a bone marrow biopsy.
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