Monday, May 28, 2007

Queen Hannah in Vermont
With no internet access for the past 4 days, I haven't been able to update you on Hannah. We are back home now! Since our last post on Monday, Hannah has been able to attend school a couple of mornings. Her energy level has been up and down, so it's been difficult to tell if it's from the radiation, or the chemo, or something else. Even though she went to school for half days, I had to pick her up early one day last week, she was just too tired to participate. She came home and slept for 4 hours. She is happy while she is in school and likes to be there and participate.

We went to clinic on Friday to get her blood levels checked, anticipating no changes, and hoping they had gone up. Since it was our first round of chemo, we didn't know what to expect as far as trends on her levels. She had lost more weight at weigh in. The doctor explained to her that it was her one and only job to eat, even if she didn't feel hungry, or they would have to try and stimultate her appetite with medication, which of course we would prefer not to do. If that doesn't work, then they look into tube feeding, which we really hope doesn't happen. There are different ways for her to get nutrition, either through a naso-gastric tube (NG tube through the nose into the stomach), PEG (percutaneous endoscopic gastrostomy) a feeding tube that is placed directly into the stomach or a TPN (total parental nutrition) -a way of feeding through an intravenous drip, which is usually only done while in the hospital. Obviously, none of these are great. They usually start to consider one of these options when a child has lost 10% of her body weight. However, Hannah started off with little weight to lose, so they will begin to consider other options sooner than the 10% threshold. She started off at 18.9 kilos (which is 41.58 pounds, you multiply by 2.2 to get the pounds) and she has slowly decreased that to 18 kilos (39.6 pounds) so she has lost .9 kilos/1.98 pounds. It's not drastic, but it is still disconcerting.

They drew her blood and she came back with:

WBC 1.77 Very Low
ANC 533 Very Low
HGb 10 Low
PLT 178 OK

I was so surprised when I got her results. They immediately gave her a shot of G-CSF (Granulocyte Colony Stimulating Factor) which is a medicine given to stimulate the production of white blood cells. This was the first time she needed it, and it wasn't quite expected. The doctor thought she was probably at her nadir (ie her lowest point) so he only gave one shot, and we didn't have to give them at home. We had planned a trip to Vermont for the weekend with Aunt Kathleen and Bill and were leaving right after Hannah's appointment. The doctor advised us to go, but keep Hannah away from crowds of people and anyone who was sick. He also wanted us to know where the nearest hospital was, and gave us special needles for her port in case she needed to be hospitalized at a place where they didn't normally access ports. This made us think twice about going. If she spiked a fever and we were not close to home, we were nervous about someone accessing her that didn't normally perform it, since it can cause complications if not done right. We did a little research, found out that the nearest hospital to us in Vermont was a cancer center, so we decided to go, and be very cautious about her activities and hand washing.

I'm glad we went, after making the nerve wracking trip up, thinking of all possible bad scenerios, we had a wonderful weekend, and all was absolutely normal. We built in plenty of rest time for her, and tried to get as much food into her as possible without being too obvious about it. We're trying to pack on the weight before she goes for chemo again this Wednesday.

So here are a few pictures from our weekend.Hannah with a Doberman and a Spaniel at the Dressage Show at Saratoga Springs. She looks like she is enjoying the little one a bit more, don't you think? Besides the horses, they had a dog breeds display, so both Colby and Hannah were in heaven. Keeping her away from the people there was much easier than keeping her away from the dogs!

At the restaurant last night, the only thing she would eat was corn (this was her 4th ear of corn) and breadsticks. After dinner, she thought she was the waitress and went to ring up the bill.
We hope everyone had a great three day weekend!
xoxo Kim