Ben Brewer's Blog

So, after the fiasco that was last week Ben and Sarah are due home tonight from New York. Essentially, they spent a whole week there so they could spend 10 minutes with the Radiation doc and another hour doing the simulation. While Sarah and I understand why this is essential, we’re both fed up with Sloan Kettering. We were under the impression Ben would start radiation this week. No one bothered to tell us that after the simulation it takes 7-10 days to set up the actual radiation treatment! Ben is already at the 3 month mark after the last round of chemo, which we were told was the maximum for him to start receiving the 3F8. That means, with the extra radiation, which is now scheduled to take place on June 10th (not the 7th as we were originally told), Ben will be well past that 3 month mark when he starts. What this means is that he could HAMA after the first treatment, which would cause further delay or even mean he won’t receive any more.

Tuesday morning is going to be interesting. We plan to call the hospital and ask why treatment through them has been so disjointed. In addition to fighting with the hospital to get them to get paperwork into Aetna (who actually did a great job rushing approval through), we had to actually do their work and call Columbus Children’s and Denver Children’s to get them to send Ben’s radiation records to Sloan. People bitch about insurance companies, I’m bitching about the actual hospital. I don’t think these people actually get the financial and emotional toll this takes on us as parents. I honestly wonder if having the experts in New York is such a good idea. It seems to me that they should move the experts to someplace like Boulder (much smaller in comparison to New York) so they can partake in the good life and reconnect with the good things. Maybe then they’ll actually have a chance to see how hard this is on us, especially Ben.

Enough griping… Ben and Sarah are back home tonight and will be here for a week and a half. Time to get showered and clean up the trail of clothes Madeline has left throughout the house. I might even clean a toilet or two…

If you’re in the Denver area, please make it a point to stop over at the Bake Sale this weekend. The money goes to different charitable organizations to help fight pediatric cancer.

All the best,
Matt