Haven spent half of today at the hospital having her chemo levels taken - she was at a toxic level earlier this week and today was in good shape. They met with her Oncologist for about 40 minutes and went over any questions we had. I had a few sleepless nights this week and sent a few emails to the doctors.
As I was driving home this evening her doctor called (he actually called 3 times today but I didn't answer). Remember April 1st! ...... well things change fast around here
During the 15 minute conversation her doctor informed me that he is very concerned and extremely anxious about Haven. He has reviewed all of her tests she has undergone the past couple of months and all the blood work. As noted by him (as best I can remember):
I have been working closely with Haven for 2 months and reviewing everything from the past 1 1/2 years of treatment. Haven is regressing too fast. There are new areas of concern and some of the recent damage can not be repaired. We have lost too much time and ROHHAD is progressing. We need to move to the next step. Cyclosporin is too slow for ROHHAD. I need to stop everything now before it gets worse. I need to see results and I need to see them now. Haven will begin Rituximab next Friday at 9am. We will discuss next week when you come in for her Cyclosporin levels.
Haven will begin heavy Rituximab starting March 6 and will continue on Cyclosporin at the same time. She will be on for a longer period of time now. This is one month sooner than originally scheduled. We will start her back on the Zofran - as this will help to keep her from being too nauseous.
Haven will also have an MRI on the Ganglioneuroblastoma tumor next Thursday at 9am.
As this is now our last weekend before this immediate increase in chemo, we will be taking the weekend to relax and hang out. We have crafts to make and lots of thank you cards to send out. Haven will be sick on this chemo - we know how the lower dose of it made her last year.
Thank you everyone for always sending cards and gifts to Haven. We truly appreciate everything. Haven has been working on small gifts to send to her new friends out there.