Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
Friday, July 25, 2008
End of July is busy
Well I haven't felt well all week and finally had my first day this week without a headache. So thought I'd update.
I spoke with Haven's doctor on Wednesday about the spot on her back. It is not Lipoma but rather - this is funny in a not funny way - something they can't explain! Her muscle is growing out instead of across like normal. The doctors have no explanation and can't even say how it happened. They said it's definitely not what they expected to see.
Monday she has her MRI at 9:30am and they will do the abdomen as normal but will also go all the way to the thorax. This will capture the muscle growth in her back. After they have the results from the MRI - which is usually the same day for a cancer patient - they will review it with Dr. Price. If you remember, Dr. Price was Haven's surgeon. From there they will review the MRI and decide the best course of action.
Kris will be taking Haven in for Chemo on Tuesday so he will be meeting with Dr. Badget and I have requested to have Dr. Price come look at her but we're not sure on his OR schedule. Kris will be able to review the MRI and get any questions answered. I also talked to Dr. Badget about Haven's blisters in her mouth and she had a temp of 99.8 -- so close I thought we were headed to the ER again. Remember if she reaches 100 we have to be at a hospital.
Wednesday I will take Haven in for Chemo again.
Thursday and Friday Lauren will be coming to hang out with Haven. She will be busy all week - which makes me pretty happy!
Check out the largest beet ever! There was a Farmers Market at work on Thursday! I found 3 of the largest beets ever! Haven loves them.
Labels:
Cancer,
Neuroblastoma
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ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
Mist; make sure Havey knows that I am checking on her as much as I can. G-Gma has a fracrure and compressed disc on her spine; she has been in a lot of pain. I am doing what I can. Tell Havey G-GMa is thinking about her everyday.
ReplyDeleteIt is 6am I got to the computer before her cousin Ian. I think she looks so sweet in the latest picture. Keep me up to date as much as possible I will try to knock Ian off the compurter; he has only one and a half more weeks
here then I will back on everyday.
Tell Haven I have 5 dogs in my house now; this is way too many.
Love C. Gram wants to know if the clothes she sent to Haven fit?