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
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