Jared had his second treatment today. We were told that this treatment would take an hour. With the kids being out for summer, I figured we would all go and just drop him off, then go find a McDonalds or something with a play area to kill time. I figured an hour couldn't be too bad. We got the kids up at 7:45 and headed out at 8:15. He got to his appointment at 9:00, and we found a McDonalds. At about 10:00, I texted him to see what the plan was. He hadn't even started getting the Avastin yet. I thought he was kidding. The kids were already sick of the play area. So I got gas, cleaned the windows REALLY good to take up more time, and at 10:30 they STILL hadn't started. So I rented a movie at Redbox and drove back to Huntsman Cancer Institute and parked in the parking garage. I figured the kids could just watch the movie. Averie started crying after we parked. At 11:00, 2 HOURS later, they still hadn't started. So I decided to take Averie with me and go and find out the problem. I left the other kids in the car to watch the movie. When I got to the Infusion check-in desk, they told me I couldn't go back because kids under 12 weren't allowed back there. So I told them I had been waiting for two hours with four kids and wanted to know why the infusion hadn't started. They said the pharmacy still hadn't given them the medicine. (The pharmacy that is located ONE FLOOR below them!) I was about to go and push the pharmacy along, but realized I needed to get back to the car. I was worried DCFS would be waiting for me!
At 11:45 I got a text that they had started the infusion. For those of you who aren't good at math, that is 2 HOURS and 45 MINUTES of pure waiting to get the treatment we knew would take an additional hour!!! So I got the kids out of the car and took them all inside Huntsman to go to the bathroom and look out the windows of the entire Salt Lake Valley. By this point they were all worn out and fighting and causing problems. And everyone in the building was staring at us. So we got back in the car and I decided to drive around since Averie didn't like just sitting and watching a movie. I found a little park right across the street from the U of U Frat Houses, so I stopped to let the kids out. A lady came up and told me that they give free lunches to kids at the park until 1:00pm, so my kids got a little sack lunch and thought it was great! So finally when I had the kids completely content, he texted and told me he was done. It was 12:45pm. By the time I picked him up and drove home it was 2:00pm. Six hours of torture for a one-hour infusion.
And to top it off, his lab work came back showing his calcium was too low, so he doesn't get to start his Vorinostat today. We have to go BACK to Hunstman Monday to get more labs, and if they're okay he can start a partial dose.
Sometimes I wonder how much more of this I can handle! Obviously if it works, it will all be worth it.
