Keith enjoyed his first full day home the way a plant enjoys water – he sucked it up. It wasn’t all fun and games however as the text books did come out in an effort to make a dent in all of the schoolwork he has missed over the past couple of months. He admitted that even though it wasn’t as fun as watching cartoons he really enjoyed seeing his teacher Mrs. Morris again after such a long stay in
Looking ahead Keith will need to complete a series of standard diagnostic tests that comprise what is called a ‘work-up’ to determine his new baseline as treatment has progressed to this point. These are all tests he has undergone several times before but that doesn’t mean they’re fun. Next week he will need to be at Stanford’s nuclear medicine department on three consecutive days for MIBG scans followed shortly after by a bone scan, CT scan and bi-lateral bone marrow aspirates and biopsies all performed at Children’s Hospital Oakland. Many of these procedures require him to be NPO (fasting) for a period of time before the procedure making it a bit more challenging for him to maintain his caloric intake. These ‘work-ups’ apparently will need to occur every three months or so for quite some time.
We are administering overnight hydration for him and that seems to be working very well – he just isn’t a big drinker so getting 750ccs of hydration while he is sleeping goes a long way. Keith now needs to take several medications orally on a daily basis with a couple of extra pills twice weekly. I wish I could say that it is a non-issue, but he is still very particular about what goes into his mouth and until they make pills taste like John Cross Fisheries Whitefish Spread he will continue to put up considerable resistance, making it difficult for everyone involved. He is quite able to swallow pills but he needs to psych himself up to do so and then needs 30 minutes to ‘recover’ before he is ready for the next one. With so many pills to give him now, we realized tonight that waiting until just before bedtime was probably not such a great idea.
We are in a monitoring & maintenance phase right now but will soon discuss with our doctors follow-up regimens that they will recommend depending on the results of Keith’s latest work-up.