Friday (Day 4)

Today's ANC = 50. 

We wait some more...

My little caged bird

We're back in the belly of the beast - inpatient at Hopkins for an unknown duration. And my little caged bird is doing her best to sing of freedom...

Hope wasn't feeling well all last weekend. She didn't eat much of anything, had that sick kid breath and was generally low energy. Quinn was feeling even more rotten, including a fever starting on Saturday morning. By Sunday he felt so bad we took him to an after-hours doc and found he had strep. So... Monday afternoon Hope and I visited the ER for a strep test (negative) and to make sure she wasn't getting dehydrated because by then her lack of enthusiasm for food had been extended to refusing to drink.

Tuesday we had a regular clinic visit. The plan was to do blood counts and discuss the next phase of treatment, Interim Maintenance, which includes four 2-3 day hospital stays. She took an early nap because her appointment was at 1:30, and when Greg picked her up after nap she felt hot. We waited a few minutes and then took her temp: 100.5. At clinic her blood counts came back with an absolute neutrophil count, or ANC, of 0, and that combination wins you a one-way ticket to 11South, the inpatient unit for pediatric oncology. Any temperature over 100.4 requires a call to the doctor, and if you are neutropenic (have an ANC of under 500) you have to get checked in while they do a blood culture, rule out and/or treat infection, and wait until your ANC is 200 and rising.

Could be 2 days, could be a week, could be more. Sigh. But the good news is, she feels pretty good. She spent Wednesday exploring the playroom and chatting up the nurses. In the afternoon she got moved to a general medical unit because they needed our oncology room for someone else. It's always good news when you are the most boring patient in oncology, so we are trying not to complain about missing the free coffee and familiar faces of 11South...

Cultures are all negative so it was probably a virus. And more good news: She finally ate something this morning. Her first food since Saturday! Good old Cheerios.

Now we wait. Her ANC finally cracked double digits today: 20! More soon.

Go Phoenix teamwork - for Hope!

Last Sunday, Celia finished her eighth season (3 fall, 2 winter, 3 spring) with the Charles Village Phoenix soccer team. It’s been an extraordinary experience for her for the last three years. She’s made some incredible friends, learned so much about good sportsmanship and being a team player, had so much fun – oh, and gained a ton of soccer skills. And the bonus is that we have made some wonderful friends too. The Phoenix families like to cheer and chat and throw one hell of a end-of-season party.

When Hope was diagnosed, this crowd got jumped right in. Lots of rides and playdates and meals have been shared with us. But this community wanted their number one fan to know they would be rooting for her even harder than they have rooted for our big girls all these years.

First, the team made an amazing card for Hope while she was in the hospital. We love it so much it is still hanging in the dining room.

Then, Coach Jennifer ordered HOPE patches for all the girls’ jerseys! They were distributed at a Saturday morning practice and by Sunday afternoon’s first game, everyone had them on.

Then Hope received her very own Phoenix shirt (which she loves to wear to the games).

At their last game on Sunday (a win!), Hope insisted on running through the tunnel with her team!

Click here for amazing video of the Phoenix and Hope running through the parent-constructed tunnel!

And Coach Brad told me something I didn’t know. Before taking the field at each game, the Phoenix players do a cheer and this season they have said: “1, 2, 3… Go Phoenix teamwork for Hope!”

What a beautiful group of girls and families. We feel so lucky to be a part of it.

When I was 8 years old, my sister had cancer.

“This is the kind of thing that could be in my biography: When I was 8 years old, my sister had cancer.”

I guess we are still struggling, all of us, but this is the way Quinn expressed it. It’s big, what is happening here. And even though we have gotten used to some aspects of it, we still are overwhelmed by the enormity of it, and by the fact that its course seems to lead as far as the eye can see. If you are 8 years old and hear that the treatment for your sister’s cancer is going to last more than 2 years, I guess that must seem like forever. How can he imagine this being over when he is 10 ½? He can hardly project himself to the end of the school year in a few weeks, or comprehend the stretch of time until his next birthday in October.

I wish he could tell me what that chapter of his biography would say. What details he would include. What themes he would elaborate. Reading it would reveal so much about how he is feeling.

What I know is that he’s weary of the whole thing. He misses playdates at our house and the surety of knowing I will be the one taking him to school and picking him up. He misses some of the structure and rules that often fall by the wayside these days, when they are meant to scaffold his day-to-day life.

I think I know how he feels. I’ve been thinking about why I look forward to clinic days. Like Hope, I like the routine of it, the vitals and lab work, the regular faces and inside jokes. And the feeling that we are doing something to rid her of this invisible menace. On the other days, Hope and I entertain ourselves at home, try to figure out what food will go down easy today, and watch the inevitable Barney episode du jour. And I find myself missing our old routines – school drop-off and pick-up, the grocery store, the library, preschool, the playground, speech clinic – and dwelling on the enormity of it all.

When I was 41, my sweet baby girl had leukemia. I hate writing this chapter and can’t wait to reach its final page.

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Hope Update:

Hope finished her second big round of cytarabine on Monday. It was two four-day stints and it’s supposed to make you really sick. It pummeled her blood counts to their lowest levels yet, but she miraculously had loads of energy despite being profoundly anemic. And though she had days when it was a struggle to figure out what she wanted to eat (which we usually chalk up to nausea), she never vomited or seemed uncomfortable. With low counts, we’ve been inside a lot lately – with lots of stuffed animal bowling, Nerf soccer, giant block tower building, and dancing to pop radio. All that energy and activity plus low platelets equals lots of bruises! Yesterday she spent the day at clinic getting tanked up on red blood and platelets, to give her a little bump before Friday’s chemo (PEG-asparaginase and vincristine, in case you’re following along at home!). 

It's alright

It was hard to go to clinic yesterday. Hope has been feeling so good, eating so much, talking a blue streak, and playing so happily. Walloping her with chemo again seemed wrong. It was a feeling familiar from those early days in the hospital, when it just didn't seem possible that she was actually sick; we had to resist the urge to disconnect all those wires and tubes and just take her home. Each new round will be hard to face, but at least we know now that she'll bounce back.

In her new cowgirl hat (courtesy of David Gerdy - thanks!!)

In any event, we did go - and she made counts, so it was a long day at clinic. Hope made the most of it - following the clowns through the halls, holding an impromptu meeting in an empty conference room, watching some Barney, eating yogurt and ham and pizza (significant diet expansion recently!), and playing catch in the playroom.

Today through Monday a home health care nurse will come by to give her chemo. It's a short visit - about an hour - and Hope likes the company. So far, she is tolerating this round well. After her treatment, she asked for some music for dancing. Does this look like a girl in the middle of chemotherapy?