First off We didn't learn much from Tuesday appointment other than Kevin needs to eat!!! Kevin's Dr. wouldn't give me a definite date on releasing him as he is trying to work out some issues with Kevin's medicine. But one of the PA's told me more than likely it will be sometime in 2 weeks as long as Kevin's bone marrow starts kicking in building his immune system up. When I started asking questions the doctor started backing out of the room, I knew he didn't have the answers yet. So we are in a wait and see holding pattern. I do want Kevin's line pulled before we go home. It is just one more place for him to get an infection and I certainly will not allow him to go to school if it is still in when we return. The double luman has been a source of half of his infections through this whole thing.
When Kevin had the tumor in his head, it had been there so long and had grown large enough that it caused damage to his brain to the point where the fluid we all produce in our brains couldn't drain properly in his. So after his emergency surgery to relieve the pressure that had gotten dangerously high then 24 hours later he had his tumor removed in another surgery, a week later last February Kevin had to go through another brain surgery to have a shunt placed permanently in his head. The shunt is the bump on top of his head that everyone can see since he has no hair. From the shunt down to his stomach is tubing that runs under his skin which the fluid drains into his stomach. The shunt surgery was worse than the other brain surgery to remove the tumor. Kevin had more issues getting adjusted to the shunt, but now he seems pretty adjusted except for one big thing. He can't ride on rollar coasters or any amusement park ride for the most part as long as he has the shunt. It can kill him. About 2 years ago we took Kevin and Scotty to Cedar Point for the first time. Kevin was just big enough for the Raptor Ride. He loved it, he road it several times that day. Kevin surprisingly has a dare devil streak in him.
Yesterday as we were waiting to meet with Kevin's doctor, Kevin started talking about not being able to go on rollarcoasters. He was pretty upset about it. He was a little mad at me for not getting him an MRI sooner when he first started showing signs so that the tumor wouldn't have permanently damaged his brain and he wouldn't have to have a shunt. He also wanted me to promise no one else in the family would go on rollarcoasters since he couldn't. He was upset that whenever he goes to the boardwalk or any amusement park that all he can do now is win prizes.
I also caught him staring at himself in the mirror. I am pretty sure Kevin hates his shunt, he is just such a good kid he tries not to show it.
But this brings up another conflict. Kevin qualifies for Make a Wish since he has fought a life threatening illness. Kevin keeps picking amusement parks for his trip. It really hit me hard that going to one of those places for his wish might not be the best thing for him emotionally until he has peace within himself about his new limitations. One of the places on his list was Disney World, which I remember there being alot of rides as the highlights. The other plan was to go to California and go to Lego Land, Disney Land and San Diego Wild Park. Even though he has his wish submitted he still is uncertain about his final choice but he only had until November to change it.
So I need idea's from all of you. Kevin loves fish (him and Eric have aquariums at Eric's house), he wants to be a paleontologist when he grows up and loves being around other people. We have taken Kevin to the Smithsonian since he could walk and he seems to enjoy anyplace with a story. So please send us any vacation, destination ideas that stay away from amusement park ride type stuff. We need any and all ideas you might have. You can email (michigan_herrs at yahoo.com) them to me or post them in the comment space.
Sarah, a little 3 year old St. Jude patient is in need of lots of prayers. She has so many tumors growing inside her little head they just did an operation to put a shunt in which she seems to be struggling to adjust to. Sarah has been given until Christmas to live. Please say a prayer for her parents. They are doing a great job dealing with this nightmare of a situation they have been dealt but they are losing their daughter before their very eyes. No child should ever have to go through what these children go through. Sarah also has two older brothers who are having to go through a very grown up life situation (they are near Kevin and Scotty's age). If you can, please leave Sarah's family a short message of support. As a mom with a son with cancer I watch their situation and know that this can happen to any one of us. This just makes me sick that these kids and parents go through this.
Thank you for all of the love and support. You all have really blessed our lives.