Feeling Better

Hey there,

Well they moved Natalia up to 6mgs of dexamethasone a day from 4mgs and it is helping a lot. It is so much easier now that she is doing better to tell how different the hydrocephalus effected her this time compared to back at the end of June. Back in June when they were bringing her down off the steroid she only made it to 2mgs a day before she could not swallow, had difficulty with her thoughts, could hardly walk and was one constant tremor. She had to be hospitalized for a week before she began to improve even a little bit. This time she was off the steroids for 3 days before the hydrocephalus was bad enough that we had to take her to the ER. She was boosted to 4mgs a day for 5 days and because she wasn't gaining strength in her legs we have been on 6mgs for the past 5 days. She is doing much better but not up to school yet. Monday she will do her labs at Valley Children's and then we're all leaving in the early hours of Tuesday for San Francisco for a CT scan at 9am and clinic at 11:30am. From this meeting with Dr Banerjee we should have another game planning for the reduction of steroids. It is Natalia's wish that Sophia go with her. Sophia keeps Natalia's mind off the treatment and makes her laugh like no one else can.

Those of us who know Sophia the best, understand that although she has a will of solid steel and the total ability to do the opposite of what you want, she will do everything in her considerable power to make her loved ones feel better. She has the instinct to know when you're feeling down or feeling sick and will do all she can and some stuff she shouldn't to make everything right in your world. Right now she is playing catch with her sister trying to keep her occupied because Natalia is bored with siting around.

Love to you all,
Roni

The Roller Coaster

Sorry, I haven't written in a while. It is hard to know what to say sometimes. Natalia is experiencing a setback right now. She was coming off the steroid 1 mg every 5 days and all seemed to be going well until she hit 1 mg a day. About the 3rd day in the cycle she began to get really tired and then when she went off the steriod she began to sleep the majority of the day. She did her chemo and clinic on this past Tuesday and they discovered she had a urinary track infection. By Wednesday she still was not doing any better, in fact, now she was so weak she could barely walk. We called up to UCSF and they told us to take her to the emergency room to get electrolytes & steriods by IV and get a CT scan. The CT scan showed she had hydrocephalus or "water on the brain". This happened the last time she was coming down on her steriod dose and she ended up in the hospital for a week then. We brought her home late Wednesday night. She is now back on the steriod at 4mg a day and we have seen a slight improvement. UCSF should get the scan today and contact us about what we should do but still...everything was looking up then we hit the down of the rollercoaster ride, it rather sucks. Her spirits were so high about going to school and starting to do things on her own steam again now this.

Love to you all,
Roni