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1. Side Effects

Step right up and see her — Miss Clio Moock! The Amazing Side Effect Girl!!

Yes, Clio continues her streak as the kid who gets rare and sometimes mysterious reactions to chemo. This past week at the cclinic she had a reaction to something called Peg-asparaginase. Her face got suddenly very red and a little puffy, and her head and mouth started hurting.

Actually, allergic reactions to asparaginase are not uncommon, but they apparently don’t usually look like what Clio had, or happen as quickly. (Plus there’s the fact that she’s had the drug twice before with no problems.)

Add this to the mysterious Ara-C fevers, the scary seizure-ish episodes, and the surprisingly slow rate of hair loss (bonus!) and that’s our girl! Special in every way.

But damn, is she a trooper. One minute she’s throwing up, an hour later she’s out in the backyard playing with her sister. And she seems to be weathering the disappointment of not starting kindergarten or soccer fairly well. But a few times, recently, we’ve wondered if on some level she’s taking it harder than it seems.

(Umm….now we’re transitioning into 2.) Kindergarten. And other stuff.)

The other day Clio went over to school with Elsa in the morning and stayed for a couple of hours while Alastair waited in the parent volunteer lounge. She seemed to have a really nice time, and won the coveted “most helpful at clean-up” award. (Although between you and me, I think it might have been rigged. I mean, it was her first day there. What are the chances?)

But later that afternoon she was apparently acting out a bit with Alastair. And that night, when I was giving her a shower she suddenly got very upset when I told her it was time to get out, and started not just crying, but weeping. I held her on my lap, bundled up in her towel, and she cried and cried while I rocked her.

She wouldn’t say what was wrong. In fact, she denied that she was sad at all. Eventually she calmed down, and I got her to smile by doing that sneaky, “Don’t smile! Whatever you do, don’t smile!” thing that annoying parents like me do.

It’s funny; she’s a very articulate kid. But I suspect there are all kinds of feelings about this experience that she just doesn’t know how to put into words. So they occasionally come out in crying jags and limit-testing and clinginess. Most of the time, though, you’d think she was just a normal, happy kid.

Elsa, meanwhile, seems to be doing great overall lately. The jealousy that she felt over the summer when Clio was getting loads more attention (and loot) than her isn’t as much an issue. And when she does, occasionally, say she’s jealous of something, or it’s not fair — for example, the fact that Clio’s going to get to have ice cream when she’s in the hospital in a couple of weeks, because Children’s Hospital has “sundaes on Saturdays” — Clio is quick to remind her: “It’s not fair that you got to go to Ocean City” or “It’s not fair that you get to go to kindergarten.”

As for kindergarten, and Elsa — she’s making the transition much more smoothly than we expected. I guess I was anticipating (with fear) more exhaustion / acting out / general misery. (Although on Monday night the second week, she asked, “Do I have to go back to school tomorrow? Why does it have to be every day?” Welcome to the rest of your life, kid.)

I think there are two main things, in addition to Elsa’s adventurous nature, that have eased the transition:

1.) She knows two other kids, daughters of friends of ours, also starting kindergarten at the school AND she discovered a third — a kid she and Clio knew from day camp two years ago — who is in her class, and is now her official BFF. In fact, on the first day, as the walked in together, I heard Elsa say “Do you want to be best friends for the rest of the day?”

As for reason #2…..drumroll please…. Our pal cancer! Hooray!

Yes, this is one of those weird examples of something horrible having an upside. Last year, when we decided that it would be a good idea to put the girls in separate classes — something Clio was very much in favor of — Elsa was not happy. In preschool, she tended to lean on Clio quite a bit socially. Because while Elsa’s pretty outgoing, she also has had some issues with sharing and compromising. Clio, while a bit shy, tends to play well with others.

But once this whole cancer thing went down, Elsa was suddenly forced to be a lot more independent. She was at day camp on her own — the first time she’d ever been in any activity/social situation whatsoever without her twin sister — and spending a lot of time on her own with her grandparents and various friends.

All of which, we think, really prepared her for being on her own in kindergarten. Three cheers for cancer!

And, actually, as it turns out, we decided to keep the girls in the same class, given the circumstances. So, Clio’s technically enrolled in the same class, even though she doesn’t actually go. And if/when she goes back to school in the spring, they’ll be together. (Which may end up being a little tricky…)

In the meantime, she’s got a monkey from the Monkey in My Chair program holding her place. Monkey in My Chair provides school-aged kids with cancer with a giant stuffed monkey (plus a storybook and teaching guide and one of those little pencil cases that clips into a binder, which I used to think was AWESOME when I was in 6th grade). The monkey can literally sit in for the child who’s out getting treatments or is in the hospital so he/she still has a presence in the class.

The girls’ teacherr has done an awesome job with Jeffrey Moock so far. Oh yes. That’s the monkey’s name: Jeffrey Moock. (Last name always to be included). When we first got him Clio said she wanted to name him* Jennifer. I said, actually, Jennifer is usually a girl’s name. So she asked me for some boy names that started with “J” and the one she settled on was Jeffrey.

*I find it a little troubling the way my kids assume that all stuffed animals are male. Unless they’re pink or purple.

I wish I could post more of the Jeffrey Pictures, because there are some awesome ones, but I don’t want to get any angry letters from parents who are less exploitative of their children than I am, so you’ll have to take my word for it.

Phew! What a long, rambling post. Sorry ’bout that.

Here’s Jeffrey Moock, turning off his computer in disgust (feel free to do likewise).

 

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18 Comments

  • Mimi Lewinger says:

    I love reading your blog. It makes me feel that I’m getting to know both girls better . I ‘m also so impressed with what wonderful parents you two are. You have been through so much with Clio and seem to have handled it all so well,judging by how well Clio and
    Elsa are behaving. Hats off to you and big kisses to your fabulous daughters.
    Love, Mimi

  • Patty says:

    May your silver-lining/dark-cloud ratio always be large.

    I love the Monkey In My Chair idea. Especially at this age, it reminds the other kids that there IS another person in the class, and that way she’s not a “new” kid when she does turn up. Which I very much hope she gets to do in the spring!

  • EG says:

    Aw come on, we want you to exploit other people’s children just so we can chuckle at Jeffrey Moock!

  • Michele says:

    Oh Jane, it’s a wonder you are not pulling your hair out. I wish I could do something to comfort Clio from afar…your whole family has been so brave throughout this. Love the pics of Jeffrey and the fact that you can keep your sense of humor! Prayers sent your way.

  • Gail Erdos says:

    Love this. Beautiful. Hoping to come visit this week. Got some cool stuff to bring.

  • Rosstwinmom says:

    Quit making me cry!

    Seriously cannot get over Clio having chemo and throwing up from it and missing school and all of it. It is so surreal. Maybe because your twins are a year or so older than mine, and I always use their stories as a preview of my life. Do I subconsciously think one of mine will get sick? God, I’m weird.

    Anyway, the Monkey is a fantastic idea and something kids that age can really get into, especially with a teacher who does it well. I love it.

    You are doing so great. The girls are doing well. You are a trooper.

  • Rosstwinmom says:

    Okay, I wanted to donate to the Monkey in My Chair, and the boys are sitting with me looking at the pictures. I had a brilliant idea to use it as a teaching moment and told them that maybe it would be cool if they donated a monkey. I explained what it was about and that they could help by having less birthday presents and letting mommy use that money to buy a monkey for someone. They were very excited. Until they realized they would not personally be delivering the monkey. Or that they were not getting extra birthday money.

    I guess I suck at teachable moments.

    alex
    jack
    And they also demanded to type their own names in this note.

  • robin says:

    Great post!

  • Oh, Clio weeping just breaks my heart. This post makes me look forward to your blog a few years from now when all of this is safely behind you.

  • Ewokmama says:

    We’ve had similar moments where Jack won’t tell me what’s going on but he is obviously bothered by something. He is normally a very well-behaved kid who kind of self-disciplines, so it’s kind of a shock when he suddenly acts out. He doesn’t like to talk about his feelings or about cancer, which is also a change – he was very much into feelings and such prior to this.

    I’m so glad you were able to see the upside in preparing Elsa for kindergarten and more independence! There are actually quite a few upsides if you look for them – although I can’t bring myself to say it’s worth it! But I think Jack is gaining some confidence that he might not have had otherwise, and this process has made him tougher. Two things that are nice to have earlier in life!

    Clio sounds like a strong little girl and I’m sure, like in our situation, it’s kind of a blessing to watch her handle everything with more grace than you’d expect. Jack is absolutely the one getting us through this – he never stops fighting and so we can’t, either. These kids are amazing.

  • Jen says:

    I just found your blog and started reading because our daughter was two weeks into K when she was diagnosed with t-cell ALL. She’s two months away from being finished with treatment (yay!) and it’s interesting for me to see another example of a mom detailing the struggle. Our daughter, Zoe, also is unique in the side effects she’s had from chemo…upon getting her third dose of PEG her throat started to close up and she broke out in hives for the next three days (spent turkey day in ICU for that!) along with other strange viruses she’s gotten, a rare bacteria in her port, never sedating well for her spinal taps, losing her hair twice. It’s such an arduous journey to watch your child take and all you can really do is sit, hold her hand, and be her voice. Rock on Jane!

  • April says:

    My mom has had breast cancer twice and did chemo and radiation twice and never lost her hair whatsoever. So it does not always fall out for everyone. I think my friend Susie never lost her hair either. That is why I always advise people not to just jump to shaving their head because you never know, you may not lose it.

    I am glad Elsa is doing well in K. My boys are finally after a month starting to do good. Last week was the first week we got through without any major incidences, breakdowns or trips to see the principal. I have never heard of that monkey thing. Cute idea.

  • Sophia says:

    Thank you for sharing your life experiences on this blog. I read your blog hopefully–hopefully waiting to hear that you’ve made it through the worst of it and all is well on the other side. Your experiences make me want to support you and other families with very ill children. I wonder if you would be willing to suggest organizations that have made a difference for you that we might consider supporting–especially any that are local to the somerville/boston area although for non-local readers of your blog maybe any organization that has made a difference would be relevant. I’d love some guidance when thinking about end of year donations. Thanks so much.

  • Lara says:

    Hi, I recently discovered your blog and am drawn to your story. What I’m most struck by is how strong you seem. I don’t have much personal experience with cancer but I do have three kids so Clio’s story touches something in me. And that bit about her weeping? Oh my… And what a beautiful name for a beautiful girl. I’ll be following along and keeping Clio and you in my thoughts and prayers.

  • Guajolote says:

    Oh man, a kid in serious emotional distress. Not because of a toy her sister took or something some kid said at school but really because it’s just TOO MUCH. Poor little girl. Good for her for coping so well but it is an awful lot to cope with.

    I’ve never heard of “Monkey in my Chair” before, what an interesting idea. And how bizarre that Clio’s cancer is… good? for Elsa in some way. Props to you for noticing these silver linings!

  • EdnaKay says:

    She is lovely and amazing! So are you!

  • FSE says:

    Those are two brave kids you’ve got.