Well we had hoped it wouldn't happen but then again we don't know anything about this horrible syndrome.
I am going to describe what we did this summer with Haven's immune system in terms of a flower - as this is the best way the doctor explained it to us.
This summer we did a High Dose treatment of Cyclophosphamide - which is an extremely strong chemotherapy. This was used to destroy her immune system in hopes of rebuilding a new one with new cells that had no memory of ROHHAD or Neuroblastoma. We have been watching and monitoring Haven since then with any changes positive or negative.
She has been slowly progressing in the right direction - her pottying is awesome, she even wakes up out of sleep to go potty now. Her personality is so much more animated and she is talking to everyone. She loves to play now and wants to do so much more. We are completely off the blood pressure medication.
BUT all of that is stuff that happened later in the disease. The areas of the syndrome that happened around age 2 have not been affected by the Hi CY. So maybe it's a sign that if you catch it soon enough you can reverse the affects of ROHHAD - wait too long and you get screwed.
Thankfully our doctors don't like to sit and wait for the next bad thing to happen and even though it makes us crazy we know what they're thinking.
What didn't change on Haven was the weight gain, eating, drinking, sweating, and sleeping. ALL of this began surfacing around age 2 years old and was in full force by age 3. These are the items that have been with her the longest.
I can't begin to explain the immune system.....it's an amazing system. There are so many areas of the immune system. So I will explain it to you like it was explained to us.
Imagine a flower.........now spray a chemical at the root and you can see over time it slowly dies.......now you no longer have a flower but you still have small remains of what was originally there. Now you need to go back and spray down the remains to destroy all of it.
This is Haven's immune system. We destroyed the "root" of the immune system and now we need to go back in and destroy the "petals". Get every bit of remaining original cells possible before it's too late and too irreversible.
On Friday morning, Kris and I will be going in to the Oncology office for a formal conference to review the new treatment and go over all possible side affects (pretty much everything you don't want to hear about) and sign the consent forms.
Once we know when this will start we will update more. Thank you everyone for always praying and thinking of Haven. Love to all