Summer Camp, Sick Style

This won’t come as a shock to anyone who has read this blog before, but I was never a prime candidate for summer camp. (Or any sports involving physical contact, catching round objects, copious running, or inherent dexterity. In addition to a lack of natural talent, I broke too easily and coughed too much.)

In fact, I didn’t even like hearing those two words, “summer camp.” I watched the yellow buses wind through our neighborhood every morning, toting eager campers with lunch bags and bottles of sunscreen, and all I could do was thank God I wasn’t on such a bus.

My one and only bout with summer camp can be summed up this way: five-year-old me got released from the hospital after spending several weeks in an isolation room. A staph infection spread from my ears and was traveling towards my brain, so they shaved part of my head, cut it open, and drained it out. Good times. Lucky for me, I was released just in time to start Summer Session 2 at the day camp near my house. As it turns out, girls with partially shaved heads, IV bruises, and an assortment of meds and inhalers who aren’t allowed to go swimming or run around aren’t exactly popular.

(I should note that this wasn’t a high tech camp—swimming in the lake and running around were pretty much the only things you could do.)

Seriously, can I even blame the other kids—who’d been swimming and running with each other since the early days of Summer Session 1—for avoiding me altogether?

I lasted about two days.

I think the point in sending me was to re-acclimate me into the world of “normal” kids after so many weeks in isolation, but it just didn’t work. I was plenty social, but day camp took every weakness and insecurity I had and magnified them. My mother promised no more day camp, ever, and I spent most summer days playing with my cousins or friends on the beach or reading. When I was well enough to swim, I wore ear plugs and a nose clip and no one cared because they were used to it—or had been warned by their mothers not to comment on it.

To this day the thought of summer camp makes me a bit uncomfortable. I see plenty of kids who love it, and I am amazed by the variety—drama camp, dance camp, techie camp, music camp. Perhaps these specialized programs eliminate that whole notion of exposing vulnerabilities and sticking out.

“If we have kids, they’re only going to camp if they really want it. Like if they look it up and beg us and it’s totally their thing, ” I said to my husband recently, poring over the advertising supplement for summer camps in a local magazine. He was never a day camper sort either, so we were in agreement: if they want it, great. If not, we won’t force it.

Anyway, the whole point of this trip down memory lane is the fact that in addition to camps for sports and drama and academic enrichment and all of those things, there is a growing number of camps for kids with chronic illnesses. From well known conditions like diabetes and asthma to camps for kids with less common diseases like neurofibromatosis (and you know what a soft spot I have for the rare disease patients), there’s an emerging variety in options. And according to this article in the Boston Globe, these camps provide more than just a rite of passage:

“Now fledgling research suggests such special camps may offer more than a rite of passage these children otherwise would miss: They just might have a lasting therapeutic value.”

In addition to learning more about their conditions in hands-on and creative ways, children who may otherwise feel ostracized get to meet others just like them, which can be an incredibly valuable “normalizing” experience, one that can also boost confidence and self-esteem.

Who knows. Maybe if I re-wound the clock about twenty-five years and found a camp for kids with dodgy lungs, runny ears, deficient immune systems, and partially shaved heads, I’d have embraced the day camp experience with less terror. Maybe I would have even liked it.

Or maybe I would have still preferred looking for starfish at the beach and checking books out of the library. (Likely.)

But with so many specialty camps out there for aspiring singers, soccer players, and science stars, it’s nice to know that this generation of chronically ill summer campers have so many more options available to them, too.

It’s for the Kids…

Something I think about a lot is the idea that as technology advances our understanding of diseases as well as our treatment methods for them, seriously ill children will live longer and hopefully qualitatively better lives.

So what should medicine and society be doing to keep up with them?

I’ll admit I have a special place in my heart for peds patients. A lot about the way this health care system works confounds me, but sick kids? I totally get them. I was fortunate enough to grow up as a patient in one of the best pediatric hospitals in the world, and as an adult I had the chance to work at a community home for the families of long-term inpatients at the same hospital. My work there inspired me to apply for a fellowship that helped support my development of a creative writing program for chronically ill pediatric patients.

So yes, I’m always on the lookout for innovative ways to make children’s lives better.

Enter the Medical Day Care Program (MDCP) at the Franciscan Hospital for Children. According to a recent article, the goal of the MDCP is “providing expert nursing care and educational enrichment to help children with complex medical conditions lead normal lives.” Field trips, arts and crafts, games with friends—these are experiences all children should have, and children with serious medical conditions shouldn’t be left out of them.

The MDCP also accomplishes an equally significant goal: helping the parents and families of these children. Caring for children with serious medical conditions is an incredibly strenuous task, so giving these parents a well-equipped place to leave their children during work hours makes a lot of sense, doesn’t it?

Here’s another program that makes a lot of sense: I recently read an article about a new program in Massachusetts that gives palliative support to the families of seriously ill pediatric patients.

As quoted in the story, “We’re trying to improve the quality of life and make the process of going through this type of illness more bearable,” said Stewart Landers, who oversees the program at the state Department of Public Health.

I’ve seen firsthand how crucial the support of hospice care is for patients nearing the end of life, and for pediatric patients, the issues are particularly challenging. Typically, someone can qualify for hospice care if they have fewer than six months to live and agree to forgo curative therapies. Palliative care is less common among pediatric patients because their prognoses are less certain and parents don’t want to give up on potential cures. Now, with less of these restrictions and more understanding of the needs of kids and families, hospice care is available for families at various stages of illness.

Though there are marked differences between the programs, common threads remain: sick children require (and deserve) specialized services to make their lives as “normal” as possible, and supporting their families and loved ones is an essential part of that process…and it’s nice to know there are organizations doing something to make this happen.