Ben Brewer's Blog

For the most part, things have been relatively quiet on the Ben front this past week. That is, if you consider 5 days (I think it was 5, I lost count after 3) in the hospital nothing. We were finally furloughed Sunday morning and made it back home around 11:30AM. We’re very fortunate that the hospital visit wasn’t bad, mostly boring, but we did find out that Ben’s white blood counts are not improving as fast as they were previously. This might mean we need to get him on the GCSF shots, a daily thing. Ben, as most kids his age, hates shots. Imagine, those of you who don’t already have to do so, giving your child a shot daily… possibly for the next month or so. Oh, and we have to do it for the antibody study, too. Thank God for emla and Ben’s strong will to live!

So, in other news, Ben did miss Halloween. When he realized it, while in the hospital, he cried. Real tears. Yes, he was loaded up with candy in the hospital, but missed out on the other stuff, like wearing his costume and trick or treating with friends. That being said, Ben did manage to treat others while we were in. He asked that we take a large bag of candy back out to the nurses station and put it in the bucket so others could have it. He also handed out pencils and treats to the other kids and nurses on the floor. Even in the midst of this terrible pain and suffering, Ben still manages to let his heart guide him. (Let this be a lesson to those of you who horde the best candy for yourselves…)

Ok, on to the treatment plan: Ben has an MIBG scan tomorrow. This is so Sloane Kettering can get a baseline for his treatment prior to our trip out there. Since his counts aren’t rebounding, we’re not sure when the next round of chemo is, but it will be followed by two more. Then it will be 4 weeks of localized radiation therapy, then New York. We’re honestly not sure when this craziness will end, as it’s now one day at a time, but we’re looking at May before Ben is maybe, possibly NED.

So, on to the pictures. I know you’ve been waiting breathlessly for new pics of our family, so, go here “Our Great Photos” or click on the large photo above to get to the gallery. (Ok, not all of you have been waiting, just a few…)

Best,

The Brewers