Saturday, September 12, 2009

Haven Update

Preparing to access the port!

This time we were ready and put Haven's numbing lotion on her port about 1 hour before it was accessed. Haven never used to use the lotion but now she is feeling some pain and really wants the lotion.

Kris and I both went to this appointment as it had been about 3 weeks since seeing her doctor. Haven had been seeing available doctors during that time and we don't usually go in to specifics with them.

Our concerns were her blood pressure, sweating, and eating. The doctor pulled up all of Haven's blood pressure stats since April. After reviewing them we decided that it isn't her BP that is making her sweat. All of her stats have remained about the same. So what is it? We don't know. It could be something to do with ROHHAD. Maybe the symptom subsided for 2 years and then decided to come back. Who knows. Now I am required to take her temp when she has the sweating and when she says she's cold to rule out any fevers. If her temp remains constant then we will venture more in to this side of ROHHAD.

Sleep walking - although Haven has had some major sleep walking issues we noted that it was both nights that we gave her Benadryl for mosquito bites. Doctor confirmed that since Haven has a tendency to sleep walk the Benadryl could amplify it. She only did it those two nights so we will cease the use of Benadryl.

Eating - this is the main part that has not been affected by the Cytoxin yet. BUT as the doctor said yesterday - all of them were pretty disappointed after Hi CY because they saw no results. It took about 2 months of having the Hi CY in her body before she was back to being potty trained and having a completely different personality.

Since Haven is the first to undergo a chemotherapy treatment for ROHHAD there is no map to follow as to when certain things will be affected. Haven is creating this map. We discussed possibly another chemotherapy treatment but since it seems that Hi CY is slowly reversing some affects of ROHHAD we are going to wait a bit to see if anything else reverses on it's own.


  1. ROHHAD just sounds awful. Poor Haven! Hopefully she is feeling well!

  2. Hi, Misty,

    Still praying that treatments can be found to help Haven. Please tell her I said hello and that I'm sending her bunches of hugs!

    (((((((((((((((((((((((BUNCHES OF HUGS)))))))))))))))))))))

    Still praying for Haven, you and your husband.

    With caring prayers,