Tuesday, May 11, 2010

Haven's little ROHHAD updates

So last week I got an email from Haven's Oncologist that he needed to urgently talk to me about something but not to worry or be concerned. Isn't he cute???? Oncology says "urgent" but "not to worry" in the same sentence! Anyway, so I talked to him for a while the next day and it really was nothing to worry about. He is working on something about Haven and her ROHHAD and Ganglioneuroblastoma Cancer and needed my opinion. Which is very very nice of him - not all doctors will call to get your approval on something that isn't medically treating your child.

He is a really great doctor and it was very nice of him to say that even though he mocks me, laughs at me, or makes fun of me he truly wanted me to know that I am a great mom and is grateful for the fight in me and how I made people listen to my concerns to help my daughter. But I had to remind him that I wouldn't have my daughter if he, Dr. Badgett, Dr. Cooke, and Dr. Cooper hadn't worked together to diagnose her and save her.

He also asks about the other kids with ROHHAD. He had spoken to Denika's doctors in Canada at Sick Kids. So I gave him little updates on some of the kids.

He informed me of the last 10 months recap:

  • Haven has not gained any weight in 10 months
  • She has grown
  • Sodium levels remain at normal rate
  • CO2 has dropped 5 points
  • She is once again potty trained
  • Personality has changed and she is laughing and singing now
  • Blood pressure is normal and we haven't been on meds for 10 months
  • She is going to school part time

I am very happy he had the guts to make a stand and give her a treatment that no one has ever tried on this disease and it finally feels good to have complete trust in a doctor.

1 comment:

  1. Dear Misty,

    The ten month recap about Miss Haven was so encouraging. I pray that she continues to do well and that a cure for ROHHAD can be found.

    Still keeping Haven and family in prayer.

    With caring prayers,