My new word...I just learned about it a couple weeks ago.
We're waiting news on Haven's macroprolactin levels.
As described to me by Oncology: Haven started chemo at a prolactin level of 70 - during the strongest chemo medicine time she went down to a 20 - since stopping Cytoxin in September she is back up to about a 40. Normal level is 10 or below.
Oncology is at a stand still right now on where to go. They were not able to give me much information as this is an Endocrinology area. So we have been contacted by Endocrine and our appointment is Nov. 10th at 2pm.
We do not have any information on her Macroprolactin as of yet. This is a rare test that is usually never done so it takes a while. They should have results by the time we go to Endocrine.
What I know is Haven has:
GanglioNeuroblastoma Cancer
Hypothalamic Dysfunction
Paraneoplastic Syndrome
Low Opsoclonus/Myoclonus
and now possible issue with the Pituitary gland.
So you can see where the doctors could be baffled....heck - I can't even believe she has one of these let alone all of them. How can one person at age 4 have all of this. It's just .... I don't even know what it is.
I will update everyone after Nov. 10th.
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