Where do we go from here?

imageI haven’t updated in awhile mainly because there isn’t much news to update on. Ben has been recuperating from the second round of MIBG and his counts finally started to come back up to normal levels a couple of weeks ago.

He also has started to transition back to regular school, which he was less than thrilled about. During the last 6 months of treatment he has been doing home-hospital teaching where a teacher comes to the house to give him 2.5 hours or so of teaching. The rest of Ben’s day was usually free to do what he wanted, like play video games and watch YouTube videos. Imagine being told that your free time was going bye-bye and was being replaced with school… He was not a happy camper.

The other aspect of this is the social part. Ben is not the most social kid in the world. That is a direct result of the 11 years of treatment he’s been through. A lot of the kids he knew well are either dead or have moved on to other phases of cancer treatment. Some, the ones without cancer, have definitely moved on. Their lives are normal. I don’t mean that to be sour grapes nor am I looking for a pity party. It just is as it is. When you have a kid who’s been through 11 years of treatment, that is just what happens.

Anyways, back to the social part, Ben was a little worried that he wouldn’t be able to connect with anyone. He was super-stressed that first day back, which was really only two classes.

Fortunately when he got out his first words were “I’m having a great day.” That did my heart good. It really said to me that he missed interacting with kids his age. We’ll need to be more diligent about it, at least when his counts allow him to do so.

Other than that, we are still in a holding pattern when it comes to treatment. Ben was supposed to start an experimental vaccine (yes, vaccine) in December but the supply ran low so we’re waiting to hear back from Sloan for news about that.

Once that news is relayed it will be more treatment out in New York, which I absolutely abhore. You see, I’m a small town kind of guy. New York is too big, too noisy and just not the most friendly place in the world. I prefer Denver or Columbus…

Thats it for now. Look for more news on Ben when we get word.

Blessings,

Matt

 

 

 

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