If you’re gonna have cancer, then you definitely want to have it as a kid. You get SO many perks.
Multiple toys every time you go to the hospital? Done. People whose entire job it is to make you feel happy and comfortable, to play with you, and do art projects with you? (Even ones who make house calls, as shown below?) Absolutely! Books, crayons, markers, stickers? Just say when! Free trips to Disney World? Yours.
I mean, seriously, it’s enough to make a kid want to fake cancer, just for the loot.
I am joking, of course. (Of course!!) But it really is amazing just how much effort is made to make this whole stupid cancer thing a little less miserable and a little more fun — I know that sounds weird, but it’s true — for kids.
Before Clio’s illness, I had no idea that there was such a thing as a Child Life Specialist — someone whose job is specifically to work with pediatric patients (and their families) to help them cope with their illness or disability. And in the case of young kids like Clio, “helping them cope” frequently means providing fun activities and generally kid-friendly companionship, so they feel less anxious, less bored, and more at home in a hospital or clinic setting.
Clio always perks up when the child life folks come around. OK; that’s not 100% true. Sometimes she would just as soon watch a
Clio paints with Gail from Our Space, which does art projects with kids with cancer. Click to visit their website.
video or, if she’s feeling really lousy or cranky, ignore them altogether. But most of the time, even though she may not immediately grin and say “sure! I’d love to paint!” (that just wouldn’t be her style — more like Elsa’s) there’s a good chance she’ll nod, and then gradually warm up to one-word answers and a few smiles. And once she really gets going, she’ll actually engage in something like conversation. And she is cheerful and more at ease for a good couple of hours afterward. Which puts me at ease, too: my daughter isn’t miserable. This is a good thing.
Because being at the clinic or the hospital really does put a damper on her spirits. And, guess what, she got to go again last weekend!! Lucky gal! (And lucky Alastair, who was there with her all three nights, since I was up in New Hampshire with Elsa.)
Yeah. So, she was having some really weird — and scary — side effects to one of her chemo meds, most likely the Methotrexate, which is administered intrathecally (that is, into the spinal fluid, via spinal tap). She had four distinct incidents of something clearly neurological in nature (although the first couple of times it happened we weren’t sure).
It started with her acting kooky and almost drunk-ish, then stumbly and slurry and talking in baby-talk, and then she started flailing and moving her arms and legs around and wanting to be on the floor. And while it was going on, she seemed to be having trouble getting her words out to explain what was happening. All we could get out of her (after the fact) was that her legs felt “funny” and that she felt like they were moving without her doing anything.
Yeah. So, scary. And for the umteenth time throughout this process found myself thinking, good God, what are we putting into our little girl’s body? What if this is permanently damaging her brain or nervous system? What if she has an actual seizure?
Ugh. The good news is that none of the tests they ran while she was in the hospital — MRI, EEG, test of the Spinal fluid, Blood tests galore — turned up anything. And there are apparently “rescue” drugs that can be administered after Methotrexate to prevent adverse reactions. So, I guess they’ll try that next time.
But I am getting off track. Let’s get back to how awesome it is to be a kid with cancer.
Heh.
It really does give you the opportunity to see how kind and how giving people can be. And not just to kids; we’ve been absolutely floored by the generosity and thoughtfulness of family, friends and acquaintances near and far — even friends of friends we’ve never met, fans of Alastair’s music, and readers of my blog and of Double Time.
Clio’s free hat from “Hats Off For Cancer” They sent one for Elsa, too! (Click to visit their website).
They’ve sent activity books and markers and craft kits and hospital-friendly toys; hand-knit hats and socks; gift cards for groceries, etc. (which truly make a difference, given how little I have been and will be able to work over the next six months) and lots of heartfelt greetings — both to Alastair and me and to the girls. We’ve had home-cooked meals delivered to us at the hospital and home, and a “cleaning party” at our house. And then there are the countless good vibes and quick notes that have been sent to us via Facebook, Twitter, email and comments here.
Sometimes I seriously feel like George Bailey at the end of It’s a Wonderful Life.
It warms the cockles of my heart (ha ha, I said “cockles”) to know that so many folks are thinking about us and wish us well. And it gives me faith that as much as there is to be angry and dispirited about in our world (election season and all its attendant b.s. and sniping is currently at the top of my list) there are a lot of wonderful people out there.
Meanwhile, it’s sunny and breezy and 70something here in Boston-land, and I’m gonna go eat a big ole juicy peach.
I read your memoir today and really enjoyed it. I could relate to a lot of what you wrote about even though I am mom to just one (I am a single mom via adoption). Anyway, I thought I would check out your blog and was stunned to read about Clio’s cancer. I am glad to see it has such a high cure rate. I will be sending good, healthy thoughts your way.
Thanks so much, Laurie — for the kind words about the book and for the healthy thoughts!
Exactly the same, here. Just happened upon “Double Time” at my local library and devoured it in 2 days. I’m a long time follower (but rare commenter) of your Baby Squared babble.com blog, as well. So I thought I would check out your website after finishing your book. Was absolutely stunned to read the news of Clio’s illness. I have 2 little girls myself, but singletons: a 3 year old, and a 4 month old. Anyway, I haven’t been able to stop thinking of you all since I read the cancer news last night. Lots of good wishes for health and healing from Minnesota.
I enjoy and appreciate your writing…will be checking out your novel next!
I was thinking about you guys yesterday. Glad you checked in. And glad for all the silver linings!
Jane, I was (and continue to be) floored by the kindness and generosity of all sorts of people during my own health challenge, so I know what you mean. It’s kind of sad that it takes something of this magnitude for us to see it, but it’s one of the positives I’m taking away from my own cancer experience (and really, who’d have thought there’d be any positives?!) – there are a lot of good people out there willing to help when needed. I’m glad you’ve encountered some of them…and it’s great to see Clio’s smile
Just catching up and reading through past blog posts- so very sorry to hear your family is going through this, but so glad that there are so many folks working to help make the experience better for your daughter, and so glad you have excellent care. Beautiful picture of her in the hat!
Love this!! So well said. When I was in treatment I made a list of all the stuff people gave me/did for me and my kids. I still read it. Incredible how big the human spirit can be…
I have been reading your blog since the early days of Babble.com (love the new site, btw), and your girls are a year + ahead of my oldest, so I always felt like your trials and tribulations were a foreshadowing of ours, and when we ran into a hurdle, I knew that it would pass, because Clio and Elsa had outgrown the hitting or the demanding, or whatever. So, without knowing it, you’ve always been very reassuring to me. I guess I just want to say that this trial will pass as well, and someday the Child Life folks will be a fond memory that sticks out from the unpleasant when Clio is a healthy teenager. I think you are doing a really great job getting through this with your family, and I know that it can’t all be pretty, but you seem to be handling this with a cool head and a certain amount of panache. Glad to see your sense of humor shining through, too. Keep us updated, we are all rooting for you.
I’m so glad you’re feeling floored by love and that Clio is able to receive some positive, desired attention in the midst of this. Spinals taps and neuro side effects- oh my goodness. So scary. Something’s got to balance out all that shit. Glad it’s generosity and kindness. (And sheesh- if there’s ever a time you want Elsa to yell something about cancer, I bet it’s when the neighbors are like that. Poor little kid, listening to it all.)
Some day I wonder if I will EVER be able to thank all the people, known and unknown, who have sent us stuff or even just prayed for us….wow. I’m glad you’re feeling the love. I’m glad the tests came back okay. Whew. I can only keep saying it…hang in there.
I cry when I think of all the needles that have been jabbed into sweet Clio. I’m so glad the world is helping all of you get through it. My boys and I send you all the love in the world from Poland.
That is so scary what she had happen with the side effects of that drug. I am glad she came out of it but I know that must have been agony to watch. Poor sweetie and poor mommy.
I love that little girl so much and I have never even met her. I also am so glad that you are getting lots of support. You need it and deserve it! It brightens my day to know you enjoyed and appreciated the package I sent. Thank you and you are welcome. : ) I wish I could do more. I am sure we all feel that way. Hang in there.
Just wanting to say…you are ALL always in my thoughts….sending huge good vibes your way.
Hi, just found your blog (my twins are 31/2) and I fell in love instantly…have been reading back blogs for hours today while my husband has the twins! I wanted to wish you and your Clio and family well. I believe sending good thoughts actually does help… So I’m sending you some now. I hope you keep writing it has been an inspiring day. Enjoy camp with Elsa!
Thanks for the update! Sorry things are still so scary. Thinking of you often.
Thinking of you guys all the time. I love seeing the pictures of Clio. You are both amazing and doing such an incredible job at keeping it afloat right now. Lots of love. XO
Hey Jane, I’m glad to hear they’re doing everything they can to make the hospital a less scary place to be. I hope it takes a bit of the emotional pressure off at least. I’ve got quite an amazing collection of classic children’s books in my attic if you ever want some different material to keep the girls occupied.
We’re sending good vibes and get well wishes your direction.
Wow! I just finished Double Time and thought I would check out your blog. I found I could really relate to your book even though all my children are singletons. I was shocked to see what you and your family have been going through. I hope you all are doing okay, especially Clio. My thoughts are with you and your family!
Thanks so much, Chandel!
We love you!
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