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). 

Reality bites

Friday morning we headed back to clinic after our 11-day break. Yup, it was hard. According to her nurse, her counts were "beautiful," and so on to Delayed Intensification...

After a lumbar puncture with chemo, she got vincristine and a new chemo for her, doxorubicin. By the time we headed down to the pharmacy to wait for her dexamethasone prescription, she was done. 

Her dex dosage is about 60% higher in this phase than it was in induction, but it's one week on, one week off, one week on - so we'll see how it goes. She's up and down - dancing and singing one minute, whining and clingy the next. These video clips tell the story well:

  

Today's chemo seemed to go fine (peg-asparaginase), but the end of the day was rough. Lots of crying and complaints of belly pain. Anti-nausea meds didn't do the trick and she couldn't keep her nighttime meds down. Hopefully she'll get a good night's sleep and feel a little better in the morning. Day 4 of this 56 day phase...

Down by the bay

Last week in clinic we learned that Hope's next appointment was 11 days away. "What are you going to do?" we were asked repeatedly. With a solid ANC, growing appetite and energy to spare, Hope was raring to go, so we decided to - gulp - go on vacation! Like normal people. Not too far away, and for just three nights, but still. Best decision we've made in a long time.

Pool with water slide, mini golf, s'mores (Hope's new obsession), restaurants, frisbee, and loads of long hallways. It was amazing.

When I was a kid, it used to drive me crazy that on the last day of our vacation my parents would always try to cram in one more activity. "Let's just stop at the beach on the way to the ferry." "We'll get a late checkout so we can take one more dip in the pool." We'd all groan and complain. But this morning I tried every trick in the book to extend our normal family vacation just a bit longer.