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Cayla's Web Site .jpg)
Welcome to Cayla's Web Site. Halloween '08BR>
Journal
Thursday, March 5, 2009 8:08 PM CST I know, it's been a LONG time since I updated.
Well, Cay's been off her chemo (oral VP-16) for 5 months. This was the first scan since she decided to go off. We got the results today. No new enhancements.
She's had two small enhancements for over 5 years at the bottom of her tail bone. They're still there, but haven't grown in a very long time.
Our only concern was they said there was a slight fracture (once she said slight compression, once she said fracture) on her L-spine at the original surgery site. The doc said it could be osteoporosis due to radiation and chemo. She said it doesn't look to be a big problem, but she would do some more research on it before we come in for Brain Tumor Clinic on the 16th.
I was just so happy to get a good scan. I've always said we would just fight any long term side effects of radiation if they occur. She has to have lived long enough to have the side effects, so in a way, this is a good thing. That probably won't make sense to a lot of people, but if you've had to look at your childs life in months and not years, it changes your entire out look.
Cay's doing great. She's been on her lovenox (blood thinner) to help reduce the clots. That's going well. She'll probably be able to stop that in 3 months.
She started growth hormone about a week and a half ago. That's going as well as can be expected. The shots hurt, but she does them every day by herself. Quite a trouper!
Cayla has been volunteering at Special Care for about a month now. She loves it. Special Care is a daycare facility for special needs kids. Cay actually went to there from the time she was 6 weeks until she was about 3. My Aunt worked in the baby room so it was so easy to go back to work. When Cay was there she was considered a "typical child". Now she's special needs, but still able to volunteer in the same class she left 11 years ago. (Even the same teacher!) She plays with the kids, gets lunch from the kitchen, pours milk, cleans tables and just helps with whatever the teacher needs done. Cay loves it and the teacher seems to be happy withe the extra help. I feel like this will help her learn responsibility and social skills. So far it seems to be working out for all involved.
anyway, just wanted to pass on a good scan. Hopefully it won't be so long for the next update.
Please, keep praying for Cayla's health. I believe with all my heart prayer is the only thing that has kept her here with us this long. Please don't give up the fight.
-Angela
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