Today we met with Helen, the lead consultant dealing with Casper’s care. She’s based at the children’s hospital in Bristol, but visited Exeter to meet with all her cases at the RD&E. To put it simply, Helen seems to set the strategy and Simon and Corinne, the RD&E consultants, seem to run the tactics – they see Casper every week, administer his drugs, and deal with the blips and awkward moments, like when he gets a temperature and needs to go in for antibiotics and observation.
Which happened last Thursday after his chemo and has happened again today! With hindsight, we think last week’s temperature was just teething; he’s up to six teeth now, his cultures came back negative, and the way it played out makes it seem likely that teeth is all it was. Which sucks, but it’s better than the alternative – which is him getting an infection and being really ill.
Today we think it’s likely he’s just got a mild cold virus; Nora’s temperature spiked yesterday, but a dose of Calpol and a good night’s sleep later she was fine to go to nursery where she had a good day. My throat is a bit tight this evening. 2+2 usually = 4.
But that’s an incident, temporary. A blip. How’s the big picture with Casper’s LCH? How’s he responding to treatment?
With fingers crossed and wood touched, things are going well. Helen is pleased with Casper’s progress, and we will continue with the plan we always had: 6 weeks induction, 6 weeks re-induction, then on to maintenance. Today was week 2 of re-induction. We’ve not had a sickness bout in 5 weeks. His albumin levels have consistently stayed in the high 20s for the last month or more, having been in the teens initially. The rash is all but gone, and what remains is petechial staining, likely a side effect of his low platelets rather than the scaly LCH rash. Given that bone marrow came back clear last week, it’s all going well.
Which isn’t to say that we’re coasting; Em and I are on tenterhooks every day in case he vomits and it turns out to be his gut slowing down, in case the rash surges back, in case his temperature spikes and it turns out to be a serious infection. His blood counts are still chronically low; he goes through platelets like nobody’s business, and his red blood is seldom close to good. Had he not had a temperature that needed an overnight stay tonight, the plan was to go in at 9:30 in the morning for a transfusion anyway.
But he is happy, he is smiley, he is charming, he is doing well. Having been steadily on the 91st centile for the first few months of his life (how?!) he’s now dropped to the 50th but remained there consistently; a much more sensible size for a baby of ours. Helen jokingly described today as “the best consultation ever”, because Casper just sits there grinning at you and eating his own socks like nothing is or ever was wrong, and he is delightful. He’s the kind of baby people stop you in the street to comment on. He’s ace.