This has been the longest week in a long time! In 4 days we've had 5 doctor appointments! We're still waiting on results from everything. We need results from the sleep study, bone density scan, and cardiology. Haven's Cyclosporin levels were good yesterday.
We met with the surgeon on Wednesday this week about the tumor on her back. He said with the size of it he would have to make a fairly large incision in the back and it would make her extremely uncomfortable. He did say it felt like it wasn't connected to anything and that with this type he would have to "scoop" it out. However, in the end we chose not to have it. He said the risk of the surgery to her health far outweighed the benefits right now. Later down the line we will remove it. But Haven has a lowered immune system and in one month her immune system could be completely shut down.
I was hoping to have some updates by the weekend of anything....but these things take time.
Love to all!
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.
Subscribe to:
Post Comments (Atom)
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&...
-
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...
-
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&...
No comments:
Post a Comment