I wish I could manage to post more often. So much I could write about, so little I actually have time to get down here (or anywhere) in the midst of it all.
But here’s the latest: As of last week, after much hemming and hawing, we switched Clio’s care over to Dana Farber / Children’s Hospital of Boston. All of her outpatient visits for chemo will now happen at Dana Farber’s Jimmy Fund Clinic — which, I’m sorry, is a really dumb name for a clinic. I know it’s funded by the Jimmy Fund, but it’s so weird to include the “fund” part in the name. Right?
Anyway. The reasons we switched are various and subtle, and I won’t get into them. But we agonized over the decision, and went back and forth on it a zillion times. We were in many ways very happy with where we were — we especially loved the small and intimate nature of the place, and the individual attention we got as a result — but in the end, there were one or two more “cons” than “pros,” and so we made the move.
In some ways I feel like, in teenage terms, we’ve dumped our slightly dorky but very sweet boyfriend for the captain of the football team. Dana Farber is one of the world’s leading cancer treatment centers, and Children’s Hospital is one of the top (if not the top) pediatric hospitals in the country. But we’re pretty sure he’s not an asshole. The captain of the football team, that is.
I have no idea if we made the right decision or not. (I guess there isn’t really a right or wrong decision…) But I do know this: Both times we have been to the Jimmy Fund Clinic, Clio has been far more animated, cheerful and at ease than she ever was at our old hospital’s clinic, where she already knew the doctors and child life staff.
And I think the reason is absurdly simple: the waiting area in the Jimmy Fund Clinic — and you do a lot of waiting when you’re at the clinic — is just more fun than the old one, which was very small and not particularly cheery.
At the Jimmy Fund Clinic, there’s a big play structure shaped like a boat, and lots of toys, and a big fish tank, and video games and a huge closet full of arts and crafts supplies there for the taking. And perhaps best of all, there are other kids with cancer. Lots of them.
The Jimmy Fund Clinic (Arggh! I hate having to write it over and over again — it’s starting to sound less dumb to me, and I refuse to accept that!) sees anywhere from 50 to 100 kids per day. Our old hospital’s clinic, just a handful. At one point, when we were mulling our decision, I asked Clio, “Would you like to meet more kids your age with cancer?”
“Yeah,” she said. “Where are they?”
So, yes. The clinic is, admittedly, one of the reasons we switched. Which I’m almost ashamed to admit, because it seems frivolous. But one of the hardest parts of this whole experience for me as a parent has been watching Clio suffer. Not just physically, but psychically. I see how the way she feels physically affects how she feels emotionally, and vice versa.
So if one of the benefits of changing hospitals is that Clio feels relaxed and happy and even looks forward to going to clinic — which she’s going to be doing a lot over the next two years — then I’d say it’s a pretty good benefit.
Tomorrow is going to be a verrrry long day there, actually. Clio’s scheduled to get two kinds of chemo, including Ara-C, the one that gave her fevers last time. Our new doctor thinks that it might be enough to pre-treat it with Tylenol, instead of steroids, as was ultimately done last time. So we’ll see how that goes. Meanwhile, she’ll need to be getting fluids all day to prevent bladder issues due to the other kind of chemo, Cytoxin.
Elsa is going to come and visit and hang out with Clio at some point during the day, which she’s very excited about, having never gotten to go to the clinic at the old place. And Clio is excited to show her around.
“It’s really fun, and has a lot more toys than the old place did,” she explained yesterday. “That’s why it’s called the Jimmy Fun Clinic, right Mommy?”
Ha!!
I told her that should be the name. It was much better than what it really was.
On another fun note, as many of you may have seen on my Facebook page, yesterday was “Elsa and Clio’s Sale with Lemonade and Yummy Stuff and Crafts to Buy Toys for Kids With Cancer.” A bunch of our friends and their kids helped out, we had a blast, managed not to get rained on (just barely) and raised over $300!
We’re going to donate the money to the child life program at our old hospital. Because the Jimmy Fund Clinic is plenty fun already.
Both photos by Elena Clamen. More pics of the sale on my Facebook page.
Sounds like you are making the right choices for you and your family! And yes, I think Jimmy “FUN” is a way better name. It does seems so surreal to want our kids to have “fun” while having cancer but…hey….it works. Hang in there! (And P.S. our clinic is called the MACC Fund Clinic, so I think it’s some kind of weird cancer trendy thing in clinic-naming.)
I think it’s great that you made a switch to a place that is more inviting for Clio, and even better that you raised money for fun things for the old hospital. You guys rock.
I’m sure this was not an easy decision. I wish you and Clio the best of possible scenarios at the Jimmy “fun” children’s hospital. I agree, i like that name better too. Will continue to keep your family in my thoughts and prayers.
That sounds like a great decision! Kids need peers. Other kids (with cancer) at the “fun” clinic will help Clio feel less different perhaps. Can’t imagine how weird it is to have your twin starting school while you stay home.
I did see your posts on fb and what a great idea you guys!! Both girls were adorable!
The reasons for the switch make sense to me. It seems if I was in your place, I’d be most concerned about my kid’s spirits. The needles would suck, but losing a genuinely happy kid would really hurt.
The sale looks fun! We would have come if Poland was a bit closer.
As always, sending peace and humor.
Just to clarify: the clinic wasn’t the only reason! The primary reasons had to do with quality of care. But yeah, the clinic helped clinch it.
Thanks for the peace and humor and lemonade wishes. 🙂
My husband has been a regular at DFCI for almost 4 years and neither one of us has had a bad experience there in all that time. Kind staff. Smart professionals. Good decision.
Hooray for the Jimmy Fun Clinic! And prayers for today’s treatments.
thinking of you all often – loved seeing pics of the girls busily raising money on a sunday afternoon. yay. may the day be smooth and the treatment healing. xo miri
My husband will be checking into Dana Farber tomorrow for a stem cell transplant even though we live in New York and he’ll have to be in Boston for months, recovering. It’s just that good of a hospital. I’m glad it’s also more fun for Clio. Keep on doing what you’re doing, Jane.
Best of luck to you and your husband — sending healthy thoughts your way. Please let us know if you need any help finding your way around Boston. And we’d also love to bring home cooked meal to you/your husband at the hospital while you’re here. Let me know: jane@janeroper.com
DFCI and Children’s offer top quality care. The other place is good, but you want the best, right? No one can fault you for that. And the fact that Clio feels more at ease there is a big bonus.
TOTALLY NOT EVEN CLOSE to the same level but for my hearing care I choose to go to a small audiologist with just two doctors in the practice rather than the very large awesome hospital. Reason? I hate walking into a waiting room completely jam packed with old people and being the only person under 40 in there. I hate how loud all of the employees talk to you and how everyone acts surprised to see someone so young.
So… I think it is very great to pick a place where she is happy.
We’ve had such good experiences at Children’s Hospital, as have all the kids with cancer we’ve met when staying at the Yawkey House in Brookline–really comfortable patient & family housing.
Did Clio end up shaving her head? Or did I miss that?
Not yet….it’s getting pretty thin on top, but she’s still got a good amount of hair left. It will probably fall out a lot during her next phase of chemo, starting in a few weeks, so at that point she might shave it….we’re letting her take the lead.
(PS: I owe you an email!)
Love the Lemonade stand idea. I hope she enjoys the Jimmy “Fun” clinic and makes some new friends there.
When’s your clinic day?