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.
Thursday, June 29, 2017
So it's been years
So it's been a while since I updated this thing. Since October 2015 Haven did have surgery. She had surgery to removed the tumor in her abdomen. We ultimately found out that it was not another Neuroblastoma tumor - which made us extremely happy. We did find out that her reproductive organs had somehow floated up out of place and that is actually what had the tumor on it. So the tumor was removed and she made a nice recovery from that. We were very lucky on this one.
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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...
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