Traveling for medical care
Traveling for my medical care has gotten more logistically difficult now that I’m at college. Anytime that I go and have to have something done, I have to miss class, I have to commit to a 6 hour drive out and back, and am I spending the night? Those sorts of things… Anytime I have an emergency, certainly I can always go to the emergency room, I will be seen, but when it’s kind of a borderline thing, where you want to be seen but you don’t want to rush out and do the whole emergency room thing, you’re kind of just left with what they can give you. Those are your choices and that’s where I get the best care; I need to be seen, so you just have to go with that. It’s the same sort of thing with surgeries, If they tell me they can see me on a date, that’s the day I’m being seen, and everybody else, school, whatever else I have going on in my life, volunteering, work, kind of just have to be shuffled around that.
Sarah, young adult, Klippel-Trenaunay syndrome
His case being so unusual has helped
Mom: Well, [it was challenging] just because we had to travel, but other than that—our doctors always worked around us. Joe is so lucky. I think in some respects, his case being so unusual has helped us out a lot. When he comes in with a medical issue, his treatment will advance whatever research is happening and that hopeful helps other children.
Joe: Back home, we could just call and they’d be like, “All right, when’s your flight? When are you able to come up?”
Mom: And they would get everybody they would need to be in that surgery, whether it was different departments to make sure that everybody was there and that he’d get seen and the tests would get done and we would just have a couple days.
Joe, pre-teen, and mother, Reticular hemangioma
It hasn’t been too bad
Mom: Coming to Boston does get difficult, especially right now that we’re coming so frequently. We’re only about five hours from home, my husband’s not here this time because of work, but it hasn’t been too bad.
[Later]
Ashley: I’ve kind of got it down to a routine, so…
Mom: I don’t think coming here’s stressful, though, right?
Ashley: No.
Mom: We usually try to plan a fun day beforehand. I’ve learned that that really helps instead of driving five hours and going right into the hospital. Do some sight-seeing, do some fun stuff, kind of ease our way into here. That’s really helped. I think when she get nerves, it’s right before she go into the OR, she gets scared then, but other than that, it’s just those few minutes before.
Ashley, teenager, and mother, Lymphatic malformation
“Deer in the headlights” kind of look
My husband and I are still in our house right now. But I said to him, if there’s the slightest chance that we could move closer to NYC or even closer to Boston or halfway in between, I would do it. He could find another job; I mean this economy is really bad, but I would do it to be closer, because right now it takes us 6 hours to get to Boston or 3 hours to get to NYC. I would move there in a heartbeat if I had the means to because that is how much more faith and trust I have in those doctors. I’m trying to educate people around here, it’s like pulling teeth. In one ear, right out the other. They look at you with a “deer in the headlights” kind of look.
Lucy, adult, Blue rubber bleb nevus syndrome