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. 

Mtx: 4, Hope: 0

Skunked, 4-0. Even her amazing super girl ballerina outfit didn't protect her.

It was just too toxic for her, even at the 50% dosage she got a mouthful of nasty sores. We came home after 5 days, but ended up back in the hospital for 2 more nights because of pain and low blood sugar from no eating. Home for good on Wednesday, with a few nights of IV fluids here to see her through the rest of the mucositis. 

But the good news is that, after 41 nights in the hospital since Memorial Day, she's finally done with methotrexate in that form. (There will be weekly oral doses of mtx during maintenance, and many more lumbar punctures with mtx...)

Now she has two weeks to recover before the last intense phase of treatment, Delayed Intensification (aka Everything But the Kitchen Sink).

Toes

H: I paint

M: OK, do you want to paint with your fingers or a brush?

H: Feet!

So this happened...

The big thaw

We left the hospital Friday afternoon. Coming home is always a bit of a challenge. Hope is excited on arrival but then clingy and tentative for a few days. We've spent so much of the last two months in the hospital that I think she misses its routines, rhythms and personalities.

I find the transition a challenge too. The first 24 hours feel like a great thaw. It's always jeans-and-sweatshirt weather at Hopkins. We've watched winter turn into spring and spring to summer through the giant windows - but we haven't felt it much. I like to come home and sit on the stoop in the blistering sun.

But there's another numbness that I need to melt away - and it makes the quick transitions more difficult. The beautiful toddlers and preschoolers with wispy bald heads don't seem out of the ordinary to me anymore. With other parents and hospital staff, we trade stories about the cute things they say, weird foods they eat, their little kid "crushes" on a favorite nurse or doc. Their diseases, the scheduled poisons or complications that led to their admissions, are forgotten to make the days and weeks in the hospital bearable. The teens whose diagnoses I can only guess at stay behind closed doors, while their tight-lipped parents smile at the little ones doing laps around the unit. 

These few days at home allow for a thaw of this protective shell - to feel the sadness and fear of these realities before we jump back in. 

Wednesday. It's her last scheduled admission, for a 50% reduced dose of methotrexate. 

It's like déjà vu all over again

Yesterday was not a good day. We had a hard time getting on top of the pain. She had some nice distractions though - and that helped. The Child Life Specialist brought in shaving cream and finger paints for some messy fun.

And a music education student from Peabody brought some instruments and musical games.

But really it was this kind of overwhelming today:

Looks like maybe her counts are starting to creep back up, so healing may follow...