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My Story

Welcome to Kyles page. Kyle is a 12 year old boy with, Neurofibromytosis1(NF1). He has spent 2 years undergoing chemo treatments for brain tumors, Kiara one formation, and optic gliomia. Kyle will still have to have MRI's on his brain for the rest of his life.

Please check into our new friends site st caringbridge/visit.nicholas11

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Thursday, July 2, 2009 8:08 PM, CDT

Nice long boring day at the hospital. But we knew God was watching over Kyle because all the test came back good. It's still hard on me watching them put him to sleep. It's still hard seeing him come back to recovery hooked up to the few machines they have to put him on until he wakes up. But his doctor is happy with the way he is growing and the way the tumnors are no growing! He doesn't have to come back for one year now. I remember right before he got sick and they waited 6 months for his MRI, rather than the usual 3 months. That is when the tumors started to grow and they caught it to late because they waited to long for the MRI. But now that he is all better we just, know that we know, that the tumors will not come back. Now if he could just get brave and not take sedation it would be so much easier on him. Easier on daddy too!!
We got to meet the other little girl with NF that lives in our area since they just happen to have an appointment at the same time as us.
My doctor needs for me to have a MRI on my brain this week too. I didn't pass my blood test because I have ben a bad boy and was not taking my medicine as perscribed. At times I just hate taking medicine all the time. I figure if I don't take as much it will last longer. But I have RLS( restless leg syndrom), and it has gotten pretty bad. Other than that I am not doing to bad. I don't have to go back for a year either; unless the brain mRI shows something. But God has been taking care ot that my whole life and I don't see my brain tumors growing either.
Sandy has very bad knees with bone rubbing on bone. Her doctor gave her 2 shots in her knees which did not make her very happy. But those shots are suppose to last 6 months and make the pains stop.
Please check out our friend Taryn. site at, www.caringbridge.org/visit/taryngrodhaus, she is the girl that has NF as Kyle has and has been blessed by God too. She is getting better evry day.

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I am reopening Kyles web page today, his 10th birthday, 12-13-06 Having problems signing the book? If it takes you to another site,(probably the site you were at before this site), sign out and re-enter all over.

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