The hardest part is getting there and back
You know, the hardest part about traveling for her treatment is getting there and getting back. Once we’re there, we do stay within a few blocks of the hospital, walking back and forth. Me and my wife usually take turns staying at the hospital. If she’s doing outpatient stuff, she stays with us and it works out great… We’ve always known, when or how long things would last. The debulking is hopefully a permanent thing, hopefully it doesn’t come back. But the sclerotherapy and the lasering we’ve always known there’s a time before those veins will regrow and overtake that area again. It would be nice if we didn’t have to travel for her treatments as often as we do, but there’s nowhere else we’re going to go to have this stuff done… With the KT being so rare, you might find other people that are willing to do it, but they don’t have the experience with the KT. And we have a lot of confidence in our vascular team that if we don’t have to have something done somewhere else, we’re not going to.
Father of Natalie, child, Klippel-Trenaunay syndrome
Logistically it’s challenging, but we do it
We don’t have any family that lives here, so when we go to Boston it is an ordeal. We do have a nanny, so she needs to jump in and work longer hours, and my husband has to get out of work earlier, and I have to go over there so I have to leave my two children behind. I typically go with the grandmother to Boston. So it is a challenge, logistically it’s challenging, but we do it.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
A very big burden financially
We were blessed in that we did have a huge church family that helped us financially at the time, that we had friends and family that helped us, but it was a very big burden financially to get flights, to go up there and to be out of work or to stay that long. I think we’ve traveled to Boston 9 different times, so financially yes, it was extremely stressful. The first time, we went up there expecting it to be like a 3-day trip, it ended up being a 9-day trip and I had a two and a half year old and the other was eleven months at the time so that was difficult. Each trip that we went I had to leave my other two, so that was very tough but fortunately I have my mom here that kept them, that she babysat when I worked, it wasn’t like I was just leaving them with a stranger, so in that aspect it did make it a lot easier.
Mother of Derek, child, Kaposiform hemangioendothelioma
Between the siblings it’s hard
It’s hard because she has a brother back home, so between the siblings it’s hard. Now he’s at the age where he knows mommy’s not here, Emma’s not here, so trying to explain to him. It’s difficult because I used to be at home with both kids, and because financially having to come up here, I had to start working again so that made it tough too.
Mother of Emma, child, Venous malformation
It is and it isn’t hard
Mom: It is and it isn’t hard coming to Boston for treatments. I mean, it’s hard having to leave the girls.
Dad: That’s the hardest part.
Mom: That’s the hardest part. But again, we know, it’s just something we have to do, it’s like second nature to us now. We actually feel that Boston is like our second home, I mean we don’t dread it.
Dad: This is our vacation.
Mom: We can’t afford vacations because we’re up here so often.
Dad: So we do what we can when we’re here…
Mom: We don’t dread it though. Because the staff is so good and we know it’s just something we have to do to get him the help he needs.
Family of Michael, child, Blue rubber bleb nevus syndrome
Financially, big burden
My husband cannot take that many days off, he’s a salesman, so he’s on commission. He can take maximum one week, then he has to come back, then I’m alone there. And my other son is here, I have to worry about him although he has my family, my husband’s family, they’re all so supportive. They’re not going to leave him, but still I tell my husband you have to go back because he’s going to feel he’s left out. It’s hard, you know it’s Boston, I mean I live across the country, from one end to the other end. It is hard, it is not easy to come, but if I have to come 3 or 6 times, I will do it.
Mother of Sammy, pre-teen, Venous malformation
A very big strain
It was very difficult, especially having to travel for treatments every two months pretty much. We’d go for the treatment and we would have to come home and pretty much that following day or Monday I’d have to call and re-book everything, re-book the hotel, re-book our next treatment, because everything had to be booked so far in advance. It was a very big strain having to keep traveling out there. If she was sick or whatnot she couldn’t get anesthesia so we would keep her home from her school for like a week or so just to make sure she didn’t catch anything, because doing all that planning and ended up going down there and then not being able to do it would be a big waste of everyone’s time. It kind of consumed our life for at least a year because it was just constant, back to back medical stuff. It was very stressful, and luckily my husband had a very flexible job where he could leave and go down there, and he’d have to do some work while he was down there. So it was definitely stressful.
Mother of Grace, child, Sinus pericranii