Although we're past the initial shock and fear of Ben's cancer, every once in a while we remember how long this is going to take. Still another 3-4 years to go.
It really is draining. Ben often does not want to take his medicine, he gets grumpy and tired from the side effects of the medicine, and he gets frustrated with the limits on what he is allowed to do. Right now, while he doesn't have to go to the hospital for a few days, he is still neutropenic (i.e., his white blood cell count is so low that we have to take special precautions against germs), so there are a lot of things he'd like to do but can't. Like go to a restaurant, or a store, or play with a large group of other kids. I wish he didn't have to deal with all of this. And frankly it is no fun for Nicole, David and me either.
We are expecting Ben to be able to go back to school in September, but that assumes his counts come up. They are slowly climbing, but I have to admit I am a bit concerned about it. :(
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A marathon this is - every time it seems manageable, you realize that there's so much more to go. That said, I am blown away by your and Nicole's strength, perspective and positivity. That Ben and David are such joyful, amazing, strong kids is a credit to you and Nicole. Of course things will go up and down, but I have no doubt that you all will get through this (with the help of the cadre of people around you and literally around the world who love you and the boys and want to do whatever they can to help, practically or just by sending love and prayers).
Your little sister has always idolized you, but never have you been so truly Great (in the original sense of the word). I love you so much--and remain ready to be there at a moment's notice, anti-cat-astronaut suit at the ready.
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