July 10 & 11, 2012

Two days and four rounds of radiation down; five more days and ten more rounds to go. Right now, we get to the hospital every morning at 7 am before starting radiation at 8 am. Clayton is usually finished with radiation and transferred back upstairs to the Peds floor to wake up from sedation by 8:30ish; waking up from sedation actually takes the longer than the radiation. Afterwards we go to the day hospital area and settle into our couch to start preparing for his daily low-dose chemo. We spend the next few hours prepping for the chemo and meeting with the neuroblastoma nurse practitioner before we head back downstairs for the day's second round of radiation at 12:45. Afterwards it is back up to the Peds floor for recovery from sedation, then over to the day hospital for his oral chemo. Then we're done! We usually make it back to the Ronald around 2:30ish.
Clayton has always handled everything very well, but doing things outpatient up here is a very different environment than anything else and I have been super proud of him for how he's done with it. He is doing good with this chemo too. No bad nausea right now. I am anxious to see if the effects of the chemo and the radiation catch up to him next week like it has been suggested they will; and if so how bad it will be. The chemo we are doing is not suppose to be enough to affect his counts to much, but they have dropped since Monday. Monday his WBC was 5.5, today it was 3.5; his hemoglobin was 8.9, today it is 8.4; and his platelets were 232, today they are 192. So they are definitely going down. I am hoping that they (mostly platelets) will not drop low enough to trigger any more hemorrhagic cystitis. This chemo does not affect his bladder, but if his platelets drop too low, that could affect old lesions. Also, George has been sick, and I am starting to not feel well myself, so if it is anything other than allergies, we have to be OCD about germs because Clayton will more than likely be neutropenic on some level; though not as severe as with previous chemo regimens. Problem is we don't know if it is a cold or just allergies; George did go to the doctor yesterday and got some medicine, so hopefully he is on the mend.
As far as Clayton's spirit, it's still intact. For the most part he is still very active overall. While we are in the hospital he tends to be sitting in he stroller or laying on the couch, but back at the Ronald he is all over the place. Playful, happy, active, eating, drinking; he's doing great! Oh, and last Friday he weighed in at 42 lbs; he was 40.9 lbs before chemo and that was with a massive tumor in his belly. It's all him now! And his precious little knees no longer look knobby. Since putting weight back on, his legs are filling out again and they look so good!