Susan and Cassie
|Hi! My name is Susan. We live too far away from each other to get together for a cup of coffee and discuss the things that concern us about our children, the things that may worry us, make us sad. I can't stop by and ask you things I'd like to know about my daughter, Nicole's, upcoming surgery. Nicole can't sit in a room with your daughter and ask how she explains MHE to her friends at school. . What we can do, though, is get together here....
"Here" is MHE and Me - a place for children to express themselves and for their families to get together. We are new at this - we will be doing the best we can as we start this journey together and we will probably make a few mistakes along the way, so bear with us!. We are here to complement the existing support groups. We are here to offer emotional support to children with MHE, regardless of geographical location. We want to offer families links to each other, to sites that have good information, and to groups involved in research and the search for a cure.. We want to reach out to as many families as possible that are affected by MHE and to let them know that they are not alone!
So, grab a cup of coffee and sit down at your computer. Tell us your story, ask your children if they'd like to tell their story (we will need your permission to publish any information on the web site). Is your child looking for a penpal with MHE, are you looking for people to write to? Please let us know what we can do for your children, and for you. Let us know how you would like to help us! Your ideas and suggestions are welcome.
I am so glad to meet you!
|My name is Cassie and I'm the co-founder of MHE and Me. I am the mother of a six (almost seven) year old boy with MHE. He was diagnosed at two. Nobody in our family has this, or had ever heard of it until he was diagnosed. When he was an infant I noticed lumps at the base of his feet as I would put socks on in the morning. Well, I was young and infants are lumpy, so I let it go. Also, he had had a serious medical problem when he was a month old so (naively) I thought we were safe from other medical problems. I thought we'd had our turn. Well, when he turned two I noticed that one of the lumps was still there, and then a few days later I felt one in his wrist when I was holding his hand. I was terrified. When we finally got him to an orthopaedist and got his diagnosis, we were relieved that he didn't have cancer, but we didn't have any idea how difficult this diagnosis would be to live with. His doctor said that Conor is the youngest spontaneous case he'd ever seen. Somehow, that didn't translate to severity to me at the time. Now it does. He is monitored at least twice a year to measure baseline growth and sees the orthopod in between if there are problems or surgeries. He also has a musculoskeletal tumor specialist that he is currently seeing every three months to monitor a particular tumor until it will need to be removed. So far he has had two MHE surgeries, effecting four body parts and removing five tumors. The last surgery was almost a year ago, and the first was when he had just turned four. The next could be any time, depending on that particular tumor.
The worst part of this diagnosis, by far though, is the isolation. It is only within the past six months or so that I have found other people to talk with on the internet who have firsthand experience with this diagnosis. I can't believe how much better I feel and how much easier this is to live with just from having people who understand to talk to. My family understands, but they just don't get it. And nobody has exactly the same experience as me, even if they do love me and Conor and want to be of help. They really don't know how difficult it is to have this perfectly healthy, happy, fun, and outgoing child, who needs constant medical monitoring. I am the one who makes and keeps the appointments, and I am the one who does the scheduling of surgeries and such. My husband is very involved and supportive, but the job has kind of fallen to me. This experience is very isolating, so I am glad to be able to reach out and help someone if I can.
Now the most important part: Conor is the sweetest, smartest, funniest, and awfully darned good looking kid I have ever met. He is really incredible. I don't think he knows there's something "wrong" about him, only something unusual. He's happy and well adjusted. I am so proud of him and am so happy with the way he is that I am glad that this diagnosis has been harder for me than him, because if that's the case, then it really isn't that bad at all. I can live with this.