Wednesday, November 5, 2008


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

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