Spending warm summer days indoors

The big kids had to tag along to clinic last week. They brought books and electronics to keep them occupied for the expected two hour appointment which entailed vitals, labs, an exam and two quick chemo infusions. As quick as these appointments get. Unfortunately, the best laid plans infrequently work out. Hope’s port was a little slow – maybe some clotting somewhere on the line – so they had to put in the Drano (of sorts) and wait an extra hour, then we ran into lunchtime, and… somehow two hours turned into five.

But Quinn and Celia were champs. No whining, no complaining, no fighting. They don’t like coming to clinic, not only because it’s boring (someday I’ll write a whole post entitled: Cancer Is Boring), but also because even if you are used to having a bald sister who takes lots of meds and worried parents, you see and hear a lot in the clinic that is scary. Celia noted later in the day that the worst thing for her is overhearing docs and nurses talking to families who are just beginning treatment. These days we can look in the rearview mirror in wonder at all we have come through already, but it’s easier to put your head down and plow ahead. Newcomers are a reminder of the totality of the journey – and how many unanticipated bumps and turns there are.

Hope is back on steroids again. And this week is shaping up to be more intense than the first week of this phase. Greg noted the week off in between the two pulses felt impossibly short – she never went back to her normal appetite or an even temperament. I’ve heard some kids need Ativan to deal with the side effects of high dose steroids and I can see why. She clearly feels horrible and can’t figure out why or what might make it better. It’s devastating to watch. As of this moment, we are 7 doses in, with 7 doses remaining…

The good news is that we don’t have a scheduled clinic appointment until September 5 – when she starts the second month of Delayed Intensification (if she makes counts).