Thursday, May 31, 2007

Hannah woke this morning at 10am with pretty severe swelling in her face, especially the right eye. It appeared to be ptosis-which is droopy eyes, which can be caused by Vincristine. It was hard to tell, because the eyelid wasn't just droopy it was pretty swollen. This upset her because she had trouble keeping her eye open. Her eyes were functioning properly, but showed some right sided nystagmus again (a pulsating of the eyes at their peripheral limit), which she had after the initial surgery, but had gone away sometime ago. Vincristine effects usually don't show up until 3 days to 3 weeks after treatment, so it would be unusual for her to already be showing any side effects. But, she had unusual neuropathy with the cisplatin (our first dose) too, so it wouldn't surprise me.

Eventually the swelling dissapated and her eye looked normal again, by about 5pm. However, when she was weighed in today, she had gained one full kilo, which is 2.2 pounds. There is absolutely no way this could have occured due to her food intake because she is not eating much. Today she ate nothing until 5 pm at which time she ate one entire piece of pizza. She must subconsciously know what my mental breaking point is (although I try to hide it from her), because sometimes she seems to come right to it, then something changes. Her blood pressure is also up a bit. They gave her a diuretic to help flush out some of the fluid retention, which most likely caused the swelling and the increase in blood pressure, along with the weight gain. We'll see tomorrow if it worked.

Her spirits are pretty good still. She asked me tonight how many more times she has to do this. I was hesitant, but told her the truth, that is was 9 total, so 7 more, if we make it through the whole protocol. I told her she would be done by Christmas, and she thought that was a long way off. But we also talked about how she will be then able to walk and run again like she used to, without the balance issues and ataxia that she has now. After continued physical and occupational therapy and time, we hope that she gets back to where she was before the surgery physically.

Hopefully we will be discharged tomorrow night, around 7-8pm. We'll keep you posted!

XOKim