Friday, March 13, 2009

Pre-Op appt

Haven and I met with her Pediatrician today. It was a great meeting - we talked with her doctor for about an hour about everything that has been going on and how I feel and how Kris is doing.

Haven's Pre-Op exam was good. Mainly it's to review all of her medications, anesthesia she is not allowed to have, any past issues we've had with surgeries or anesthesia.

I received some info from Haven's medical files. Which is always nice to have them in our files.

It's weird......the doctors tell us that Haven has a serious disease and all that. But it's not until I read it in her files from last week where her doctors states "serious illness which is life-threatening" that it actually hits you. ROHHAD is a disease my daughter could easily die from --- not her Cancer.

All of our children with ROHHAD are in a life-threatening position that we have no control of. Our children may look fine today and be in the hospital for months at a time tomorrow.

Miss Haven is in Chemo all day today. This will be her 2nd dose of the Rituxan. We have been closely monitoring the toes for Tuesday's appointment.

Hope everyone has a happy Friday the 13th!


  1. TerriAnn and Elizabeth GaustadMarch 16, 2009 at 7:17 AM

    Dear Haven,
    Just wanted to leave a note to say we are thinking of you and your family and praying for you every night. We hope you got the letter from Elizabeth & enjoyed the pictures of her. We are wishing good things for you and hoping you are having a good day. Give your mom & dad a hug for us and all of you hang in there. God bless you & your family, The Gaustads, Lebanon, Indiana

  2. I just stumbled upon your blog today after researching neuroblastoma...
    I am so sad to hear your daughter has two diseases she is fighting.
    I will be praying for her from this day forward.