I know that a few weeks ago I gently lamented the excess of toys and other goodies that came our way from the good folks at the Jimmy Fund Clinic in December. But I want to take a few moments now to praise the awesomeness of Dana Farber / the Jimmy Fund Clinic / Children’s Hospital (all sort of interconnected) in general.
I feel so, so lucky to have Clio in treatment there (and to live in a city with a world class cancer center like Dana Farber in the first place). As immensely craptastic as cancer is and as awful as the treatment can be, I really can’t imagine a better cancer experience — I know, that sounds really, really strange — than the one we’re having.
There’s only one thing about the awesomeness that bums me out a little — but I’ll get to that.
First, the awesomeness:
As you may know, we have to go to the clinic twice a week with Clio, for her nasty-ass asparaginase shot in the thigh. But it’s a surprisingly stress-free affair — even for Clio, except during those five minutes just before and during the shot.
The front desk people are helpful and efficient. We’ve never had to wait more than 15 minutes after our scheduled arrival time to get things rolling. (A feat when you’re a clinic that sees 50-80 kids a day.) There’s a kitchenette with free coffee, drinks and snacks, and passably good free sandwiches at lunchtime. The cafeteria down the hall is amazing. And a good place for checking out cute Doogie Howsers. (Raouw! Cougar alert!)
There are plenty of toys and games for the younger kids to play with in the waiting room, and there are always one or two child life interns or staff there to do crafts or play with the kids. If Clio is feeling good, she always dives right in. (Which means I can actually get some work done while I’m there. A huge help.)
There’s also a whole separate Resource Room with additional crafts, activities and a big music therapy area with all kinds of instruments (which Clio loves). The music therapy people even come find her and play for / with her when she’s in the infusion area or lying down feeling crappy, because they know she likes music so much.
The nurses and nurse practitioners we see on a regular basis are caring and patient and they listen to and respect Alastair and me when we have concerns or step in to advocate for Clio’s particular preferences and needs. They also don’t crowd her or touch her or do any of the other things that some less sensitive pediatric caregivers attempt to get more reserved kids like Clio to relax or open up. And they don’t act like it’s some kind of burden on them not to. (Then again, I’ve also gotten a lot more confident and straightforward when it comes to advocating for Clio, and explaining that what may put other kids at ease does the exact opposite for her.)
Bottom line, everyone is amazingly tuned in and on top of their game and the communication between different clinicians and departments — even institutions — is unbelievable. This place is a well-oiled healthcare machine if there ever was one. And it prevents SO much of the aggravation that can happen when you’re dealing with doctor’s offices. Hallelujah. Because that would be the last thing we needed on top of, you know, having a kid with cancer.
And of course, there’s the immense peace of mind that comes with knowing we’re getting some of the best cancer care in the world. (Hey. That sounded like something I would write in one of the ten zillion healthcare brochures I’ve written in the course of my advertising career.)
But wait! There’s more! (I’ve never written that. Thank God.)
There are also the wonderful events and other “extras” for patients and their familes.. There was the amazing Holiday Party and holiday events at the clinic. There were the free tix we got to The Grinch Who Stole Christmas. There’s the sibling program, with fun events and activities just for sibs. There is the lovely social worker that Alastair and I can talk with and vent to about how our family and we as individuals are doing.
Most recently, there’s the Dana Farber Marathon Challenge, where they pair up a runner who’s running the Boston Marathon to raise money for Dana Farber with a patient. We met our runner, a twentysomething dynamo named Katelin, a few weeks ago, and she’s lovely. (So lovely she’s even offered to give us a free night of babysitting! Woo hoo!) There are several special events leading up to the race, and then we get to sit at the 25-mile mark in a special section just for Dana Farber patients and their families.
A Red Sox player visited the clinic a couple of weeks ago, signing baseballs for the kids. OK, OK, he’d just been signed to the team, hasn’t even played a game with the Sox yet, and there were about ten thousand cameras on him, so you sort of got the feeling he was doing his PR duty as written into his contract — the Red Sox are major donors to the Jimmy Fund. But still. (Although I’m waiting for that dreamboat Tom Brady to show up. He’s got some free time on his hands, right?)
So what is it that makes me a little bit sad about all this wonderfulness? Simply the fact that it’s exceptional. While there are many wonderful pediatric oncology programs around the country where kids can, no doubt, get excellent care, only a handful have the resources of Dana Farber.
We experienced this firsthand, having started Clio’s treatment at a much smaller hospital, just a few miles away in another part of Boston. We know that we got great care there. We really liked most of the doctors and nurses, and enjoyed the cozy feeling of being in a small hospital. But, without going into too much detail, it just didn’t hold a candle to where we are now in terms of the efficiency, the support, the peace of mind, and the “sugar.” (And the sugar means more than you’d think.)
The fact is, Dana Farber/The Jimmy Fund is funded up the wazoo. I don’t pretend to know what proportion of that is self-sufficient income vs. private donations vs. government grants vs. funding from Harvard Medical School (with which they’re affiliated). All I know is it’s a lot. And I just wish that all kids, all families, all programs had closer to the same kind of resources.
Because this leukemia thing is a long and sometimes bumpy, pot-holed, ugly-ass road. I feel blessed that at least we get to drive it in a really sweet car.*
(*As opposed to our actual car, which is a 8 year-old, dented Subaru Forester with 98,000 miles on it and spilled milk and juice stains all over the seats.)