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My name is Kyle and this is my twin sister Tess. This is a dog that looks like our dog, Sam.
When I was two and a half years old I got a brain tumor. Now I am 8. I have spent most of my short life trying to stop this tumor from growing. I have had 2 surgeries and have been on chemotherapy (all different kinds) as long as I can remember. I go to school and try to keep up with the other kids. Sometimes I get upset and have outbursts but mom says that happens because of the tumor. I have two shunts in my brain one on each side. Sometimes they get clogged and I have to go to the hospital to get them fixed. Staying at the hospital is cool because they have Playstation 2 in the rooms and it helps you forget why you are there. I get lots and lots of pictures of my head and always tell my mom that I want the mask because it makes you fall asleep. I think my pictures take about 3 hours because I have so much tumor in my body. Sometimes I feel dizzy, sometimes I throw up and sometimes I feel really, really tired. My mom has a really neat lavender wrap that she heats in the microwave and puts on my neck when it gets stiff and hurts. Mom said that is because of my brain tumor too. I have tumor in my brain and spine and sometimes I tell my mom my spinal cord hurts. Sometimes I get mixed up about what is wrong with me. I call my shunts my brain tumor and I really don't think I understand if this brain tumor is a good or bad thing to have. My sister, Tess wants to know sometimes why she does not have a brain tumor too. I guess I do get a lot of extra attention because of it. Oh I almost forgot, I do that sometimes, short-term memory loss I think my mom says. I also have a port in my chest where they put in the medicine. You can't see it because it is under my skin. I hate when I get poked there, it really hurts. My mom puts on a special cream to numb it and most of the time it works. When I was really little (a long, long time ago of course) my mom said when I got poked I would cry and tell her "my self hurts", I kind of forget that but you know what, it still hurts but I am a big guy now and I just don't say that anymore………..Oh yeah, one more thing. When I grow up and this brain tumor goes away, I want to be a cook, a fisherman or a pilot like my dad.
Right now there are about 3110 new cases of pediatric brain tumors each year. It is currently the number one cause of death in children. A few doctors have identified Kyle's as a low-grade astrocytoma with Pilomyxoid features. This feature is most likely what accounts for the aggressiveness of his tumor. Normally children with low-grade tumors do not have the amount of dissemination and spread that Kyle has. Because of these characteristics Kyle's prognosis is not the best and extremely unpredictable. Dr. Peter Burger, a renowned neuropathologist at Johns Hopkins is the doctor that actually identified this feature in Kyle's tumor. It is a rare tumor type but thru Email, I have found some other kids out there who are going through the same thing. Dr. Burger has agreed to help us in researching this tumor and hopefully finding some way to stop it. So us moms who live this tumor every day of our lives are trying to join together and help him begin this search for us. We need your help to let Kyle and his friends grow up to be the cook, the fisherman or the pilot………..
To help - make a donation and specify that it is to go towards The Pilocytic/Pilomyxoid Research Study!