Well Kris has been on the phone with doctors most of today - I have only talked to one. Seems as tho there is a rumor that surgery will be next Thursday January 31st. There is still more testing that they want to do before surgery. Again her doctor reminded us that she has an extremely rare case of this type of cancer so they want a lot of before and after tests to observe her.
During surgery they will be performing the following:
Removal of tumor - as best they can
Hickman Line - tube inserted for chemo
Bone marrow extract
Spinal Tap
We are not confirmed on surgery nor do we have a time. Just a rumor right now.
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