Jeremy Allen Thoms
This is Jeremy's story about his diagnosis of Krabbe Disease and his stem cell transplant. Please read, enjoy, rejoice with us, then click on the links below to read about other children and their stories. Also, please sign our guestbook.
Jeremy's Make A Wish trip to Disney World.
Thursday, March 13, 2008 2:08 AM CDT
NEW PHOTOS ADDED!!!
Hello, this is Randy. Its been so long since we have updated and I apologize for that. I'll try to recap the last few years but I'm sure to leave some out. Sorry.
We got to attend the Hunters Hope Symposium the summer of 2006. It was great !!! We got to see new faces and meet old friends. We got to do a short presentation on Jeremy's Law. We really miss everyone.
Jeremy started kindergarten in the fall of 2006. He Loved it. He made a wonderful connection with his teacher Mrs. Ritchie and a lot of the kids at school, including a 5th grade girl (Alex) who would come and give him a hug every day. He used a walker and then a wheelchair as his legs got worse. His hamstrings and heelcords were tightening and was toe walking. He was scheduled for sugery at Mayo clinic during spring break but Duke University insisted we do it somewhere better. We had a real good team of people helping Jeremy's school life and are are very involved in it to this day. Jeremy is a real trooper and despite great difficulty with walking, he never has been a complainer. We are very pleased with how bright and happy he is.
In the spring of 2007, we got to go to Disney World on a Make A wish Trip. It was so much fun!!! Thanks to others who encouraged us, we applied and were accepted for a wish. We were treated so nice by everyone, Ricardo escorted us at Universal Studios and made it really fun for us. We stayed at Give the Kids the World village and that by itself was great. Jeremy loves trains and we took Amtrak back home-probably the hardest part of the trip because of delays etc. But this was the trip of a lifetime and we took hundreds of pictures.
One day they had a guest reader at kindergarten who was the coach of the Blugold (college) hockey team. He told the class what he did and Jeremy quietly wisperd "I wish I could skate". Coach Strand heard and said maybe you can. So they brought all the kindergarten classes to the local hockey rink and Jeremy got to sit in a special sled the coach had traveled 300 miles to get and be the only one on the ice for 10 minutes. Then the rest of the kids got to skate and there were smiles everywhere. Unbeknownst to us, someone at school had called the local newspaper and TV station. We were on the cover of the Leader Telegram and a very cute 5 min. segment on TV.
In June of 2007 at Milwaukee Childrens Hospital, Jeremy had surgery with 5 different incisions on his legs to lengthen his heelcords and hamstrings. It was a very difficult time. He was put into temporary casts from his toes to his groin with a dowel attatched between so he could'nt move his legs at all. He was miserable for a few days and had leg cramps, we had some medicine that helped and he healed very well. We had to carry him everywhwere and try to keep him entertained, but he never was a complainer. After 3 weeks he got shorter casts that went up to his knees. Then we finally got some orthotics that allowed him to walk with a walker. We made numerous trips to Milwaukee (4 hours away) and we are grateful to my sister Pat for letting us stay at her house in Milwaukee.
When Jeremy went to 1st grade in fall 2007, he was just starting to walk again with assistance. He not only had to concentrate on getting around and going to the bathroom but in all the other stuff they throw at you at that age like reading and writing and math - Oh my.. His classmates love him and that makes it easier too.
Jeremy has done well since then, he's still a little pistol. We still struggle to get good fitting orthotics (3rd or 4th pair) and we still are working on strengthening his legs and his mobility. He's doing well in school. We made our 3rd trip to North Carolina in one year in November for his annual medical tests at Duke University. We always have trouble with anesthia for the MRI and this year was just as bad. He has a hard time coming out of it and also throws up. His tests were mostly good. Everything appears normal or about like it was last time. Some slowness in his nerve conduction and some things on the MRI but nothing is getting worse.
Adam, our 19 year old has had a couple of rough years as he struggles to find his way in the world. Typical teenage trouble. He did graduate from High School (barely) and has kept busy with his music career, playing at many different places and even winning a talent show at the University. If I can keep him out of trouble and he finds a good job, he should be fine.
Tanys is a four year survivor of thyroid cancer, and had a scare a year ago but a biopsy proved she was fine. Those things hurt !! Her Dad passed away last fall (Bob Hambley) and that was difficult as she couldn't get to Colorado as often as she wanted to but she did get some quality time with him before he got worse.
I'm doing OK. I get to watch Jeremy a lot after school as I work on weekends and evenings but still full time. I wish I could get some of the remodeling and contruction projects I started 3 years ago done but I either lack time or energy. I try to put my family's needs ahead of those things. My Ma's health has been declining (she's 92)so that has been difficult. But all in all, we're doing OK.
I'm glad I got to update, I know there's more I could say but this is to long already. I just want to end it by saying Take Care and God Bless !!! And Thank You all for your thoughts, prayers and anything else over the years.
with Love, Randy
Read Journal History
http://www.huntershope.org Hunter's Hope
http://www.krabbes.net Krabbes Family Network
http://www.krabbes.com Krabbes Kids