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Welcome to Winter's Web Page. It has been provided to keep everyone updated about Winter's progress.
 
Winter was diagnosed one month after turning 3 with a very large low-grade astrocytoma in the hypothalamic/optic tract region of her brain (which is in the center). She was also diagnosed with hydrocephalus (water on the brain) due to the tumor blocking the floor of the third ventricle of the brain. Since her diagnosis in February 2003, she has undergone 10 shunt surgeries resulting in a VP (ventriculoperitoneal) shunt, she has a Mediport in her chest (which was just recently replaced for the 2nd time), she went through 2 1/2 yrs of Carboplatin (single agent chemo), 6 weeks of radiation therapy in the summer of 2005, had a conservative tumor resection in May 2006, was on the TPCV (Thioguainine, Procarbazine, CCNU and Vincristine) chemo protocol from June 2006 through April 2007 and had a 2nd tumor resection (major debulking) June 11, 2007. To date, she has had a total of 15 surgeries. According to the MRI in September 2008 there is still no evidence of disease which means...no more tumor! She is doing very well. She is considered legally blind now with left visual field loss, has DI (diabetes insipidus) and panhypopituitarism. She will remain on medications for the remainder of her life....however; that will hopefully be a much longer life now!!! A small price to pay to keep our little miracle! She is now 8 yrs old (well... 25 in a 8 yr old body!)
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Journal
Sunday, October 19, 2008 1:16 AM EST Whew!!! Glad that is over! We came home from the hospital on Friday night. I can't tell you how good it felt to sleep in my own bed for the first time in 20 days!!! Yes, we were held captive for 20 days...lol. Winter escaped having another shunt surgery; for now. She will be following up with the neurosurgeons office on the 23rd for a CT scan. They will see what her ventricles look like at that time.
Sara didn't know we were coming home, I asked Misty not to tell her so we could surprise her! When she walked in she ran to Winter and hugged her then came to me and hugs me; she was glowing. You would have thought that she had just won the lottery! I know this has been extremely difficult for her too; it was for me too. I hate being away from her during these trips to the hospital. I sent her balloons and a teddy bear while I was gone and a very good friend of mine ordered her a VT Teddybear and sent it to her from me; just to let her know I was thinking about her. Phone calls every night don't replace being with your child, giving her a good night kiss and tucking her into bed. She slept in my bed last night and as soon as the light was out, so was Sara! She was all snuggled up to me. I am glad to see her so happy. That makes me happy.
Now what other child can go into a hospital with Meningitis and sepsis and come out with Diabetes Mellitus (Type 2)? Yup, that would be Winter! She is now on 2 types of insulin (Novolog and Lantus) and we have to check blood sugar 4 times a day. While she was battling the infection, they had to increase her steroid (hydrocortisone) dose by triple from 3 times a day to 4 times a day. They told me that while she was on the increased dose of steroids that her blood sugar would become elevated and she would need insulin; but as she came back to a normal dose of steroid her blood sugars would go back to normal; which they did. Then all of a sudden about a week later out of no where, her blood sugars went up and no one was sure why. So the docs ordered her to have Accu-checks (blood sugar monitoring) again for 24 hrs just to watch it, it never went back down. One night she had a blood sugar of 362. Now we are monitoring at home. Yippee~~NOT!!!!! This is a pain. Winter hates shots and not that I can blame her. She went from getting 1 shot a day for growth hormones to a definate 2 shots a day with the possibility of 6 shots a day if she needs the sliding scale doses.
I am trying to look at this in the positive. I now have to watch her diet (not that it was out of control or anything) because what she eats can potentially effect her sugar. Since I have to learn about calories and carbs and all that other stuff, it will hopefully help me lose weight too. Sara could stand to gain a few herself. I have books to read to learn about all this stuff; my brain is overwhelmed at this point. I feel like I did when Winter was first diagnosed with cancer. We will survive this too. If cancer couldn't kill my baby then Diabetes doesn't stand a chance! She isn't going anywhere until God is ready for her and I believe He has put her here to be a testimony for all of us to see. She is a walking pillor of strength and endurance and the fact that she has like 19 lives (as one of her docs put it) probably helps a little.
I will keep everyone updated over the coming weeks as we go to see neurosurgery, oncology and endocrinology.
Please remember that there are so many other kids out there fighting....cancer, diabetes and so many other things....these kids are fighting to LIVE!!! I encourage you to go volunteer at a local childrens hospital; I promise you will not look at life the same again. These kids have a way to encourge and inspire you like nothing else in the world. They will make you realize that the trivial problems of the world are just that....trivial to what they face on a daily basis. It will really make you wish you didn't take life for granted as so many of us (myself included) tend to do.
Love & Blessings to all!!!
Michelle
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