Since late last week Raul has not been feeling quite as well, but he still managed to have a good weekend with his grandparents here. On Thursday and Friday evenings we took short trips to the Ronald McDonald House. Then Saturday we went to the fire museum, and Raul got to check out all the old fire trucks and equipment. Saturday we went to the aquarium, where Raul's favorite animals seemed to be the alligators!
Raul's weight has been staying much more stable lately, but his BUN/creatinine still get very high in between dialysis runs. He has been getting platelets daily, but went four days in between getting blood. Tomorrow he is scheduled for a possible esophogeal dilatation and a scope of his nose with ENT, so today he will need to get several platelet transfusions in preparation.
Unfortunately, Raul's HLH-related labs are still not good this week. His Ferritin was down a little from last week, but still higher than when he started treatment. His LDH, Fibrinogen, and Triglycerides were all higher. We should get his soluble IL2 results back on Wednesday, and then will decide if we need to move to the next line treatments. There are several possibilities for treatments if the current regimen is not working.