Wednesday, December 31, 2008

ROHHAD / Neuroblastoma Treatment Plan

We have been waiting about 2 weeks to find out what Haven's treatment plan will be for 2009. We were certain it would be an elevated and more frequent dose of Rituximab but this is not the case. I spoke with Haven's doctor on Tuesday and we are starting her first dose of chemo tonight at 8pm. It took 24 hours to get the medicine made and ready for us.

Haven will be on this plan for probably a year but can be longer if necessary. During this time I will keep a journal of everything happening with Haven. This includes her eating pattern, her food requests, her pottying, number of diapers used in a 24 hour period, her temperment, her sleep/non-sleep patterns. Any little changes we notice will be documented.

Just a reminder THIS IS NOT A GUARANTEE that it will even do anything. We have no cure for ROHHAD so we're hoping to see some changes or we know it's just not working.

Rather than go in to all the side effects and details of the medicine I will just let you know it's generally the same as all other chemos: breathing problems, kidney issues, high blood pressure, etc etc. So we will also be keeping close eye on her.

Her schedule will consist of:
  • 2 doses of chemo every day at exactly 12 hours apart - 8:00am and 8:00pm
  • mix with shot glass of whole milk (I wasn't excited about the whole milk part) at room temperature
  • 2 times a week Haven will go to JH for blood work by 8:00am. Her chemo will be brought with her to take immediately after the blood work.

Why are we doing blood work 2 x a week. This medication has the possibility of throwing her "levels" out of whack all over the place. So they need to keep track of it closely.


So going in to 2009 - we are thankful to still be bossed our by our little princess and we are trying to look at the positives as 2008 was filled with so many negatives. This is going to be a VERY hard year. Kris will be taking Haven to 95% of her doctor appointments as I have to work and we'll need to keep on each other to give her the chemo at exactly the same time every day at 12 hour intervals! We're buying an alarm clock tomorrow that will be the "Chemo Clock".


OH - We find out on Friday if she is making Cortisol! I SUPER DUPER hope so!


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