Sunday, July 20, 2008

Playing the numbers

Tomorrow is KITE camp at the Children's Cancer Center. This is a fun filled day camp that the Center puts on for the younger kids and their siblings. They are going to the Aquarium among other cool destinations. The Center, as I have said before, numerous times, is an amazing place. My kids love it there. To say, I love it is an odd sentence. I do. Though, I wish more than anything we didn't have a reason to go there. I wish none of the other families had a reason to go there either. I wish it had no reason to exist. But, in a world where a new drug has not been approved to treat pediatric cancer since 1958, that is a fruitless wish. So, in light of that, it is a lifeline for us. A safe place, a loving place, a place where the staff, the volunteers and the families "get it"...and I am so incredibly grateful for it's existence.

Alannah is incredibly excited that she gets to be a Junior Counselor to all the little ones at KITE camp. Zachary is jazzed because he gets to go hang and do cool stuff with cool kids. Mandy, however, is not happy tonight. She was. She was very excited. She loves the is one of her favorite places to go. And that is just one of the laundry list of cool things on the to do list for the week. However, right now, if she will be able to go is up in the air.

A few days ago, I posted about her ANC count being low and headed steadily downward. If that trend continues, she definitely can not go be out and about in the world and in all those crowded places. If that ANC dips below 500, she has basically no immune system to speak of and it is just too dangerous to let her be out in crowds and in public places like that. She has been on lockdown at home this week and that will have to continue as long as that count is low. So, she and I talked about it and I gave her a choice. She has so little control over things in her life these days that when I have the chance to let her decide something, I like to give her that opportunity.

I gave a little mini-medical school to my 7 year old. I explained what "having low counts" means. I explained that with low counts she could catch something that otherwise wouldn't give her a fever. I explained that if she got a fever with really low counts like this, it meant an automatic 3 days in the hospital. I said, that with her counts going down the way they have been I had to assume they would be below 500 by Monday and that if they were she could not participate in KITE camp. So, I said, we can do one of two things, we can go in to clinic on Monday morning for an extra finger stick test to get her blood counts and see if they were up and high enough that she could go to KITE camp. Or, we could skip the extra poke and assume they were too low and skip KITE camp. She thought about it. She made and unmade and remade the decision a few times. She is her Momma's daughter after all. She really did not want an extra poke, but really wanted to attend camp. Ultimately, she decided to go get the finger stick and see if she could go.

I have feeling I know which way the counts are going to go tomorrow and I so hope that I am wrong. I hate to disappoint her. I hate to not let her go. But, if that downward trend continues, it is simply not safe to let her go.

It is a simple let her go to day camp. But, right now, in this life that our family and so many other families facing NF and/or cancer, nothing is simple. Please send up a few prayers that her counts will enable her to go and just be a kid and have fun at KITE camp.

Love to all~


Jennifer said...

Praying that those counts start rising and that Mandy can be who she should be...a kid!

Anissa Mayhew said...

Seriously, for REALZ, if she has to go to the hospital, she goes. And she'll have the great fun she had at Kite Camp to talk about while she's there. We can do our best to protect them, but we have to let them have a life as well.

You're making the right choices, you're doing the best you can with what you got.