So we spent pretty much all of yesterday at Johns Hopkins. We had a great visit with both of Haven's Oncologists. We had a lot of questions and we received a lot of answers. I will have to post an update probably next week sometime when we have a more clear picture of the immediate future for Haven. Here is what I do know:
1. She is very tricky and very complex - ROHHAD and Cancer mix
2. Chicago doesn't have a "treatment" or really a test as no one really knows about this syndrome
3. Her Oncologists have a plan of attack however, they will meet with the conference again next Tuesday to confirm this is the way they want to go and then will get our approval. Once we approve I will let everyone know what they are doing.
4. We are still waiting on the sleep study results!!!!!! It's now Day 10!
Something we are doing right now - which we hope will show us a good sign. Haven will be off the steroids by January 1st. We are weening her off starting yesterday. I will take her in to the hospital on the 2nd for an 8:00 am Cortisol test. If her body starts making Cortisol on it's own we will be HAPPY - if it doesn't then we will go back on steroids.
I want to say one thing that made me VERY happy. Yesterday we met with the social worker at the hospital as well to review anything that we need and to discuss assistance with Haven. As we all know - unless you live with a ROHHAD child you really don't understand what the heck we're talking about half the time! :) Not a bad thing it's just the way it is. The SW, Lisa, came in to the room AFTER reading about Haven and studying ROHHAD. She even read Haven's blog. I was very happy about that. It seems like most people come in and don't check on her before hand and ask questions that we really feel they should know already. THANK YOU LISA!!!
Oh - Thank you to the Ped. Oncology and Nurse Katie for Haven's Christmas present! Of course, anything about the Princesses is a favorite!