Wednesday, September 17, 2008

Hannah and I made the trek into the hospital yesterday for her monthly checkup. It just seems like such a long way now that we are not making it every day or every week. So this time we did not head up to our usual clinic area, we went into the Brain Tumor clinic. It was so strange. We didn't know anyone-kids or staff. We were happy to see Rob (finger stick man) there waiting for us, he knew we were coming and wanted to stop in to say hi. It was nice to see a friendly face. Not all of the kids there are brain tumor kids...not all of them their are even cancer kids, I'm not sure yet whom they see exactly, it's more than just the Brain Tumor clinic.

We saw Hannah's oncologist first, who was very pleased with her overall status. He thinks her hand eye coordination is a bit better (of course he hasn't seen her in a while), and her gait remains about the same. After he left, we got up to go, but were told to wait for the neurologist to stop by. I guess at Brain Tumor clinic you see all the doctors you need to at one time (oncologist, neurologist, endocrinologist, psychologist, etc.) which is a nice idea. However, Hannah's endocrinologist is at Stony Brook Hospital, and we don't really care for the psychologist at Schneiders, so we are still trying to find one out by us.

So, then the neurology fellow came in to assess Hannah. She left to go get the attending neurologist, who came in and did the same exam that the fellow and the oncologist did (almost). It seems a bit redundant to me (and to Hannah), but we went with the program. Everyone seemed to think she was doing very well. She is still on the anti-nausea med in the morning, otherwise she will vomit (more on that fun fact later.) And there are the cognitive and emotional issues to deal with. And the bone density issues, and growth and hormone issues. Oh well.

We also saw Alyssa, the doctor's PA, who we see more often than the doctor. We really like her, so it was nice to see her too. Alyssa is sensitive to the fact that Hannah is actually in the room when speaking to me. It seemed like the other doctors acted like she wasn't there half the time, and asked me a few pointed questions about her cognition.

This morning I woke Hannah early for her very first chorus practice before school. She seemed fine, sat down to eat breakfast when I hear her coming quickly up the stairs...she had to throw up. I just hate that, not only for her, but because it's so reminiscent of the "old days" when she used to throw up nearly every morning. She was fine after that and ate some crackers on the way to school. I got a call early afternoon that Hannah was in the nurse's office with a headache. Now I really have deja 'vu. This is exactly what happened before she was diagnosed. I rationalize that it can't be, since she just had an MRI only a few weeks ago, but it's scary nonetheless.

A few more pictures to share, here is Hannah on Sunday, trying to get a Chickadee to eat out of her hand. We had just filled the bird feeders though, and I told her it wasn't the best time to try to get them to come to her instead. She last a while, no success though, take a look at the pictures.

Hannah in the garden

Look at me waiting for birds

Starting to get a bit tired here

Let's just try this fake Chickadee instead

This isn't working

How about we switch hands

Doing my own bird calls

I think I'm DONE!!

♥Kim