Tuesday, May 12, 2009

ROHHADNET - Ganglioneuroblastoma Cancer

ROHHADNET - is ROHHAD with a Neural Tumor.

This is my daughter - she has been alone with this specific disease until Mother's Day! I was contacted by a mother in NY whose daughter has been diagnosed with ROHHADNET. While I am excited to find another - I am also sad about it. Knowing there are more out there and no one knows what to do for us.

This girl (I can't give names until Mom says it's ok) started showing signs of ROHHAD at age 4. By age 5 they found a Ganglioneuroma in her abdomen. Happily though this is not the cancerous type - YEA! One good thing right????

Everything this girl has gone through is the same as Haven and sort of gives me a look in to the future as to what is coming. When you think about all of these kids and what can happen to your baby it's extremely overwhelming. I can tell you it causes severe migraines! :)

Now our doctors believe all of the children with ROHHAD have had or have a tumor as I said before. But it's never been found.

The girl in NY is going through a rough time and they have now found a small Adenoma on the pituitary. Which has always been my concern with Haven - her prolactin is mega high which could be a sign of a hidden tumor on the pituitary.

There is so much going on....I know I've been slacking on emails and posts but I'm too tired when I get home. I have been doing some of my own research which I want to THANK ALL OF THE ROHHAD MOMS!!! I have been working on some spreadsheets for the doctors that I know they will just enjoy! There could be a link in my "theory" or it could just be me grasping for something.

We don't know what ROHHAD can do or become - I know my daughter is listed as seriously lifethreatening, some mom's have other children and are concerned of the possibility of the other child developing ROHHAD.....we just don't have the answers.

I also had a mom of an almost 3 year old boy contact me looking for answers.....her child hasn't been diagnosed yet but the doctors are so confused and her story is exact to all other ROHHAD children so far. I just gave her a bit of information to take back to her doctors to review.

I'm am researching and looking for something.......I just haven't found it yet.

I will get some photos up from this weekend's events - I hung out with Haven the entire time.


  1. You are an amazing Mom! I think of Haven often and wonder how she's doing. I continue to pray for her often as well!

  2. you are a great mom! and haven just seems like such a great little girl....
    continued prayers from PA

  3. Still thinking of you and Haven every day. Nikki still in hospital but been home about 7 nights off and on. Praying for you and all ROHHAD kids out there! Nikki's doctor is over in USA at the moment hopefully talking with Dr Weese-Mayer!
    Karen & Niketa Brown