(thanks to MSKCC for giving me permission to share this photo with you)
At the post-race dinner, the head of the pediatrics unit told us how Fred's Team money is being spent, and the progress they've made in research and treatment. That's part of what makes running with Fred's Team so rewarding -- how many charities give you a rundown of specifically what research programs your money funds, what progress is being made, and the number of children who are benefitting? And then brings you over there to show you in person? This doctor described a technique they have been developing to attach the chemo medicine to modified cells (forgive me, I am the least scientific person around and can't remember the specifics) that targets the cancer and fights only the cancer, instead of depleting the whole body. They have also developed a treatment protocol for a specific form of blastoma that five years ago would have been a death sentence, but now has an 85 percent cure rate. The ongoing problem is that because pediatric oncology is a relatively new field, these amazing treatments have no track record as far as the government's timetable is concerned, and that means limited federal support. Fred's Team money -- the money you have donated -- is funding this research. Not only that, but because many of these treatments are still considered clinical trials (some more than 20 years after their development -- I am guessing this is what it takes to establish that track record) MSKCC cannot charge for them. I learned this at Gretchen Holt's wonderful blog about her son, Liam, who is being treated at MSKCC. That is also where Fred's Team money goes, to fund the treatments that allow more and more children the opportunity to live a full life.
How can you NOT run the marathon for Fred's Team after hearing stories like that? You don't need to run NY -- Fred's Team participates in marathons and triathlons across the country, even Mt. Kilimangaro! Are you interested? Click here for more information.
The day after the Marathon, a bunch of us were invited to come over to MSKCC's pediatric cancer unit to take a tour and visit the kids. A lot of the doctors and nurses run for the Team -- when a couple of them came down to the lobby to say hello in their white coats, we barely recognized them (it's so odd seeing Team runners in their "real" clothes.) One of the unit heads took us upstairs.
The first thing you notice when you come in is how bright and cheerful the place is. There's a big LCD screen by the front desk that flashes messages and activities -- the lady explained that the kids didn't want the place to be "boring." And the whole unit was festooned with Fred's Team signs, they were everywhere! The kids get worked up weeks beforehand about the marathon, they're the ones who made all the signs. Next to the front desk is the day room, where the outpatient children stay when they have to come in for treatment. That's where the picture was taken. It's bright and sunny with lots of nooks and crannies, plus loads of books and games, a kitchenette with snacks, a separate playhouse -- in short, a children's paradise. And I know it will sound hokey when I say it, but unless you could see the obvious signs of illness, you wouldn't know these kids were sick. A lot of that is because of the nurses and the volunteers (like Teammate Michelle) who treat the kids with loving care, but don't make a big deal of it, so that the kids, as much as possible, are never made to feel that they are sick, or a patient. They let the kids be kids.
And boy, were they kids, in all their glory! Running around, playing, complaining about school. I had brought my children's sized Fred's Team bracelets to give out, and some of the kids were really into them. One little boy blocked my way and demanded four. He wanted an orange and purple one for each wrist. We hung out with the kids in the playroom for a while. Two of them wanted to show off their band-aids (Dora the Explorer and Strawberry Shortcake, very cool!) and some of them wanted to play with our medals (we had been asked to bring them.) Again, going back to the amazing staff, all of the children had someone there with them, either a parent or a nurse, and not just sitting back and supervising, they were all actively engaged with the kids in play.
We were then split up into two groups to go visit some of the inpatients. These are the kids who we got to see on Marathon day outside the hospital and they're also the kids who are more obviously ill. Each room we visited, they were excited to see us. Some of them were able to sit outside for the marathon, some had to stay inside and watch. One of the little girls we met was the main sign-maker, and she had a lot of her signs up all over the room. We met one little peanut of a boy, maybe about two, three years old, he was the one (there's one in every batch of kids, you know) who's got the whole place wrapped about his little finger. First off, he was wearing a big fluffy pumpkin costume, which just about floored me. When he took a bracelet and the nurse said, "What do you say?" he walked back over to me and said, "More!" And when it was time for us to go and the nurse told him to say bye-bye, he said, "Bye-bye!" and tottered out of the room. Halfway down the hall one of the nurses scooped him up and took him to the kitchen for a snack.
Where you stay in the hospital is determined by what form of cancer you have. If you have a form of pediatric cancer you are on the pediatric cancer ward, regardless of how old you are (this is standard practice at all hospitals, I understand -- my roommate had a friend in his 20s who had a pediatric cancer, his room was decorated with duckies and bunnies.) So one of the patients we met was 18. When we went into her room, she had the heat shield from the race, a bib number, a medal and the Team shirt. One of the doctors picks someone every year to get all of his race stuff, and she was the one. We all decided that since she already had the shirt and the number, she was a member of the Team and we expected her at Team practices next year. She enjoyed that a lot.
After visiting the inpatients, we returned to the day room for pictures, and then we went out for lunch.
One of the things a number of survivors who were treated at MSKCC have said is that they were treated like people there, not a number or a disease. You were always greeted by name, there was someone around every corner to help you, and no matter how many people your doctor had seen and treated and dealt with before getting back to you, they would walk in and pick up exactly where you had left off. One of the people I talked with is a five-year survivor; she goes back every six months for a check-up, and the doctor still greets her by name and remembers everything she had been up to six months prior. At breakfast today, in fact, someone was saying that MSKCC is one of the few hospitals where the support staff actually wants to help. Even back 20 or so years, in the days when if a family member went into the hospital you paid for a private nurse or else they'd never receive any care, you'd be told, "Oh, you don't need to do that here." And you didn't.
This is the level of care that everyone receives at MSKCC.
Let me tell you, I was kind of nervous going in. I was afraid that I was going to start crying, or something, and I know that's the last thing they want us to do there. But from the moment we stepped onto the unit, the amount of love and warmth and caring there is so overwhelming that you can't help but be HAPPY when you're there. I need to mention a small thing that happened, because it had a major impact on me: as we were getting ready to take the group pictures, one of the little girls came back from her treatment. She was called over to be in the picture, but the person she was with said, "She just came back from treatment, she's still a little wobbly." One of the nurses said, "That's okay, come here, sweetie, I'll hold you up!" and the little girl came over to be in the picture. That was when I wanted to cry -- not from sadness but for joy, that these amazing, dedicated people have created such a supportive and loving atmosphere for the children and their parents, and that I was able to play a small role in helping them.
Next time: race reports, and the final installment of the NYC Marathon race report.