As she gets older it’s not going to get easier
I think it’s take it day by day, but I’m really very worried, and Caitlin knows this already. With puberty coming on, I read that patients can have lots and lots of problems as their bodies start changing. Then she also has a leg length discrepancy I’m very concerned about. Age 12, 13 is around the time that the orthopedic doctors would think about going in operatively to stop that growth of the one leg if it was a significant difference, and that’s coming up. As she gets older I hope there’s more things out there that can help her but it’s not going to get easier, it’s not going to go away as she gets older. It’s probably going to get worse as she gets older, and hopefully by then there will be more treatments, and better drug therapies. So we just work to keep managing.
Mother of Caitlin, pre-teen, Klippel-Trenaunay syndrome
I want to teach her how to manage her health herself
Mom: When she gets to be an adult, I want to teach her how to manage her health herself so that she always can take care of herself. This is just my opinion, she can do whatever she wants when she’s an adult, but when she lives in an area or a place that can…
Caitlin: Like here, where they have a good hospital or somewhere that has a good hospital or something.
Mom: Or somewhere where she can get the right treatment if something happens, or where she can go to the doctor and feel comfortable, “Oh, Okay, they know what they’re doing, they’re going to take care of me.”… She just needs to have enough knowledge to know, “This is what I need to do, and I need to make sure I stay on top of everything and take care of myself.” And I just want to give her that, and I know it’s always going to be a challenge.
Caitlin, pre-teen, and mother, Klippel-Trenaunay syndrome
I do always have a concern that it would come back
I do always have a concern that it would come back. I know our doctor tried to confirm with us that it is a very, very rare chance that it would come back. When it went from being called an arteriovenous malformation (AVM) to Kaposiform Hemangioendothelioma (KHE), we learned that with KHE the chances of it coming back and causing continued problems was different , so that was an awesome thing too. I try not to stress about it, and we pray every day that it doesn’t. We made it through and Derek was wonderful with it and I couldn’t have asked for a better child going through all that, but I definitely would not want have to go through it again.
Mother of Derek, child, Kaposiform hemangioendothelioma
It’s just a part of your life
I think I feel pretty good about progress that they’re making with treatments, they’ve all told us to be pretty hopeful when her airway looks good. We know that she’s never going to be 100% lymphatic malformation-free, that that’s not going to happen, but I think so far she’s a pretty confident person. I kind of see her going the same route as my other daughter. Obviously there’s going to be challenges, especially because you’re judged by your appearance with jobs, all that kind of stuff but I think as long as she associates herself and surrounds herself by the right people, she’ll be fine… I guess my advice is just to advocate and to, as much as possible, not let your whole family and your whole day be completely surrounded by the disease. It’s just a part of your life because it can completely consume you, overwhelm you, so as much as possible, surround yourself with the right people, whether it be the right doctors or friends.
Mother of Ashley, teenager, Lymphatic malformation
It is there and it doesn’t really go away
There is an underlying worry in our family of the pain coming back. Because they haven’t found a treatment that would completely obliterate the malformation, so there is this underlying worry and concern that I think we deal with as a family. And sometimes we talk about it and pray about it and we talk about it with other friends, but it is there and it doesn’t really go away. Part of my mission is to give away what I have learned over all of these years of living with this, and part of what I wanted to do was be able to help other families and be able to give them more of a direction than what I ever had.
Mother of Steve, teenager, Lymphatic malformation