The week after Easter was also spring break for David and Austin. We were trying to figure out what David would be able to handle when we received an invitation to join some good friends in the Outer Banks. They have a daughter Austin’s age, and their son wasn’t going to be able to join them, which left David with his own Master bedroom for the week. Austin got to hang out with two other teenage girls, and Richard and I were able to cater to David’s needs.
He felt good most afternoons, but mornings were a little rough. He had some issues with fatigue and minor headaches, but he was able to go to the beach and hang out some. His good friend, Catherine, was staying with her family just one town away, and so the two of them were able to hang out.
Austin used some of her Christmas money to buy a longboard skateboard. A lot of her friends here ride, and she was thrilled to be able to take it out on the nice flat streets and sidewalks in the Outer Banks. This time of year it isn’t very crowded, so the girls were able to get some quality riding time in. Austin already looks like a natural.
Richard, David, and I came back from the beach early to go to NIH. They did an MRI on Thursday evening and we met with the doctor on Friday morning. David’s dad met us there.
The news wasn’t great. The cancer has spread in David’s brain. The tumors themselves are only negligibly larger, but there are signs of new growth in a lot of areas. This wasn’t terribly surprising since he hasn’t been on any cancer fighting drugs for over a month. (He had to get the shunt put in, so that put a halt to his other treatment.)
We talked to NIH about possible treatment options, but he doesn’t qualify for any of the trials that they currently have. He will need to go on chemo for at least a couple of months. The NIH recommended that David go to a hospital with a brain tumor clinic. We asked for recommendations in the region, and they gave us five adult hospitals. ( I had asked them previously about Children’s National in DC and they approved of that hospital, however, they don’t treat children at NIH, so they don’t know a lot about other children’s hospitals.)
Anyway, I have done a lot of research, and it is hard to find info on which hospitals are best for brain tumors. US News and World Report ranks hospitals, and you can read who is good for cancer, but it’s important to find a specialist who deals predominantly with your type of cancer. So in order to help others in the search for good brain tumor hospitals, I’ll share the recommendations they gave us:
Duke, University of Virginia, Johns Hopkins, Sloan Kettering, and Columbia.
David has said that he wants to fight this cancer, and we stand ready to do whatever we can to get him the best care.
In the meanwhile, we have registered for the Race for Hope in DC the first weekend in May. There is an organized visit to the representatives a day or two after the race, and David said that he wants to go help raise awareness for cancer research funding. I’m very proud of him and how he is always looking to help others.