Jude has had a busy day. He got up at 5 a.m. and watched Cars 2 with me and asked 100 times when he was going to see his cousin Ivan. He then went back to bed for 2 hours to make the time go faster. A physical therapist came by to check Jude over. Jude was really dizzy and did not want to get out of bed until I reminded him that he had to get ready to play with Ivan. That sprang him to life and by the time Ivan came at 9 a.m., Jude was walking the halls. He and Ivan drove cars Flinestone’s style up and down the halls of the PICU until a nurse finally told them that there were sick kids who needed their rest and that they had to drive them in the playroom. They played all day. One of their favorite activities was to raid the patient fridge that contained ice cream in 4 flavors, popsicles, pudding, juice boxes and chocolate milk. Jude even wrote a song and choerographed a dance to go with it that goes, “We will never run out of treats!” I bet they made 10 trips to the fridge. They also played XBox and with Jude’s new toys. Jude even jumped off a couch but we had to put a stop to that.
Our oncologist spent about an hour and a half talking with us today. She is amazing. She is going to do some research for us and talk with all the national and international experts to help us decide whether to proceed with the standard proton radiation treatment. It seems risky, given his age and I would like to avoid it if I feel it would be safe to do so. She said that given how smart he is, he has a large buffer and any cognitive impairment would make him normal functioning. But, that is not something I want to sign Jude up for if it can be avoided.
No final pathology yet from Children’s.
The word from the representative of the neurosurgeon is that he thinks he got the entire tumor and all the microscopic cells, but “time will tell.” Certainly not the most comforting statement, but I know they cannot promise anything more.
Jude is supposed to get out tomorrow!