Friday, Feb. 29, 2008

Our clinic visit yesterday went well. Hannah's counts were all up a bit, but not much. I was surprised to see that her counts are so slow in coming up. But the doctor yesterday assured me that it was common, sometimes it takes up to one year for the counts to come back within normal range. She gained almost a pound since our last visit (January 24.) That is not much, but she did have the stomach flu and was sick for a full week since our last visit.

So Hannah and I made a deal yesterday about accessing. I told Hannah that if she was quiet-no screaming, no kicking, no yelling, no biting, no holding her shirt down, or pushing the nurse's hands away, no crying, and was very calm that she would get something special. We finally decided on a trip to Build a Bear. So the time came, she started to resist a bit, but I reminded her of that cute Build A Bear waiting for her and she did great! She was holding back so much her whole body was shaking and had tears, but was very quiet. I thought she was going to explode! I don't know what's worse, seeing her like that was almost as bad for me, but I hope it was better for her. I told her how proud I was of her, and that she should be so proud too.

I thought that after her MRI, scheduled for March 11, they would most likely take her port out. Hannah had also already made an advance deal for the next port accessing (she is one smart cookie) for $20 cash. I guess she doesn't know that the Build a Bear is about 3 times that price. However, I learned yesterday that Hannah will not get her port out after her next MRI. They told me that they typically wait until 6 months post treatment to remove the port (just in case). So, considering that the port has to be accessed once a month, that's a few more expensive proposals for me! If only I had known! That's ok, though still a small price to pay for calm accessing, and it seems to motivate Hannah. That means the port won't come out until after her 6 month post MRI, which would be at the end of June.

Hannah was pretty excited that today would be her first day of gymnastics. We had arranged for her to go back into the class she was in, and I would be her personal assistant in the class (I used to teach gymnastics there before Hannah's diagnosis.) The class started with a good warm up for Hannah, then we moved to our first event and she started crying. She said she was scared. Even though she didn't know any of the girls in the class, they were all very nice and supportive to her. After a few minutes, and a couple runs down to the vault, she was complaining of pain in her foot. We moved them to the trampoline, and soon after she started there, she was crying of leg pain. It became quickly obvious that Hannah was not ready for gymnastics. Her blood counts are still half of what they should be, and her muscle tone is so low. It was disappointing, but I tried to explain to her that she can always come back when we get her muscles a bit stronger. We are going to set up special courses for her, things that aren't too trying, but at the same time will build her strength, and I will work with her individually each Friday.

I think I got caught up in the "she looks good, she must be good" thinking that seems to surround kids at this point. I have spoken to so many mothers who say that other people see that their kids are off treatment, they are growing hair, they are in school, so they must be back to normal. Some one had informed me last week that another person had made a comment that they had seen me and my family in church, so everything must be just fine again. I wish it was just fine, I wish we could just go back to our lives BC, before cancer. It just doesn't work like that. People don't see how Hannah can't stand with her feet together without falling over, how she has to take a vitamin mix each morning and evening that she chokes down (but not as bad as the protein drinks), how she still reaches for my hand when we're walking outside, or on uneven terrain because she is still a bit steady on her feet, how she wants to stay up late at night, but can't because she is just too tired, how she can't hold her drink in her left hand because it will spill from the shaking, how she still cries and is emotional about things, or how she is still nervous and uncertain in situations that aren't quite usual for her. Yes, things are better, no, they are not back to "normal." Tonight proved this again.

xoxo Kim