Friday, Dec. 21, 2007

Today was the last day of school for the kids before vacation. I had originally planned for Hannah to attend in the morning, then be at the class party. Unfortunately, too many kids in the school were sick (and also wanted to attend their class parties). I can't blame them, just have to stay away. She hasn't been in school for over 3 weeks so for her to go just for the party and then get sick right before Christmas would be pretty silly. She wasn't adament about going anyway, and still felt pretty tired, so she didn't put up a big fight. We were able to go to school and deliver the gifts we had prepared for the teachers. We stayed in the office, to avoid all the germs in the classroom, if at all possible. After the delivery and a bit of painting with Mrs. Grossman, she was ready to leave.

She did eat a bit better today. The last two days were almost like it was when she had stopped eating totally. It is very frustrating, for all of us. You don't realize how much in your family life centers around eating. You sit down with the kids in the morning before school to have a quick bite, talk to them a bit before they are off to school, they eat lunch because they are hungry and dinner is a nice relaxed family time (sometimes anyway). When you have a child who covers their face, cries at the mention of food and your whole mealtime becomes a struggle, it is very stressful.

I just keep thinking that each day is one more day away from chemo, so hopefully one more day closer to feeling better. In reality, her counts may still be on their way down, but it's still another day further from the chemo and the cancer. I don't know if mentally and emotionally things will ever change. It takes a very long time, sometimes more than a year for the brain and body to heal after major surgery, full brain and spinal radiation, and months of chemo, not to mention all the emotional issues she has had to deal with.

Hannah still remains somewhat emotionally unstable. She can be content and satisfied one moment, but that change quickly change. Whenever she is faced with a conflict (whether it's a disagreement or a discussion on the particulars of a situation) she can quickly cry or lash out with yelling. She seems to have trouble negotiating anything, and it is all black or white. If she is not right, she gets very upset and quickly. I have tried to explain to Colby that this is a product of the surgery, and the resulting PFS (posterior fossa syndrome), but it's not always easy to remember that. Still if these are the things we have to complain about right now, it's ok. The cancer is gone.

On to better things....Day #8, last night 8 maids a milking was a cute kitten who liked to drink milk and tonight we just now recieved #9 (Hannah was trying to catch anyone outside, but no luck!) which was 9 ladies dancing (how about 1 barbie ornament), and one of them loves barbies. Another important clue! Here is Hannah with our ever growing and beautiful tree. This is still so much fun!

I didn't mean for this entry to be so long. I did want to point out my friend Heidi who left a comment last night on Hannah's blog. Her daughter Jessica, a remarkable young lady (a photographer, artist, incredible writer, etc.) died on June 9, 2007just three days after her 17th birthday from a malignant brain tumor called anaplastic astrocytoma. I have never met Heidi in person, but know her from our online brain tumor group. She is a wonderful lady (as you can tell, leaving a post on Hannah's site, after her daughter has passed away) and handles this whole thing with wonderful grace and frankness. I like that. I am proud to call her my friend. Here is her daughter's site: http://caringbridge.org/visit/jessicarandall

xoxo Kim