David and Austin flew out to Kansas to spend Thanksgiving with our family and friends there. We were blessed to have both of Richard’s brother’s families in town for the holiday. We hung out at home a lot (thanks in part to a lot of homework), but we did sneak out to the movies and bowling. The kids were both thrilled with their rooms being decorated for Christmas. It was really special thanks to some artistic help from our friend, Michelle.
The kids flew back to Virginia yesterday and Richard and I are following today. Mark is driving David to DC today for an MRI, and we will be with them tomorrow to get the results and start the new treatment tomorrow. He will be on Avastin, which isn’t a chemo drug, but can have some similar side effects. It is administered via IV, and will take about 90 minutes to drip in. In typical David fashion, David pointed out that he will have 90 minutes to read! He will get the treatment every two weeks, so he’ll be zipping through those books!
I’ll post again after tomorrow’s treatment. Please keep Dave in your prayers as he begins this new phase.
The doctor’s visit in DC went as well as it probably could. We are really appreciative of their guidance and deep knowledge about brain tumors. They checked David over, and he had a perfect neurological exam. They said that his tumors are so small they wouldn’t expect any trouble out of them any time soon.
David was very involved in choosing his next course of treatment which should start sometime after Thanksgiving. We had a funny moment during the discussions. After listening to David for a minute, the younger doctor looked him straight in the eye and said, “You are weird.” if you’ve ever met David, you would know that this made him beam with pride. He now has official medical confirmation that he’s weird!
As for the treatment he chose, he will go to the hospital every two weeks for treatment. They don’t anticipate any major side effects and we are thankful for that. This treatment should keep the tumors from growing for a while, and give us some time to weigh some other options.
I’ll probably ramble in this post. I’ll just go ahead and apologize for that up front. There are so many thoughts running through my mind that it’s hard to settle on which one to write about first. I guess the obvious is to say that David’s MRI did not go as expected. The radiologist found two very small spots in his ventricles. They are so small that the doctors didn’t even think they would have spotted them without the radiologist pointing them out. But there they were. Two tiny little dots that changed our course. You see, the treatment David has been receiving is experimental, and while it has given us months without chemo, we can’t continue it if there is any tumor growth. So now, the treatment that has given him such good quality of life is no longer working and we will have to seek other treatment.
So the first question is, “How is David?”. In typical David fashion, he was cracking jokes. He looked up at Richard and said, “We get to go hat shopping again!” Dr. Jakacki even thanked him for lightening the mood. That’s my sweet boy. He is the king of brave faces.
The next question is, “What’s next?” This treatment was so cutting edge, and we were so convinced that it was taking us where no patient had been before. And it did. For a while. But now we are back to square one – or so it feels. Treatment decisions are before us that we had hoped we wouldn’t have to deal with. We will be meeting with the team of doctors at DC Children’s tomorrow to see what they recommend. We have read about a lot of other similar treatments, so we are hopeful that David will qualify for another vaccine protocol and that this one will be even more successful.
I have made a lot of friends throughout this process. Some of whom are fighting this battle with their loved ones as well. Heck, some of them are fighting this battle themselves. It’s ugly. There are no easy answers, but we aren’t giving up. There is an answer out there, and I feel like we are closer to it every day.
As the holiday season approaches, please do these things for me:
1. Spend as much quality time as you can with your family. Enjoy the days of “rainbows and roses” if you have them, and look for the silver lining if you don’t.
2. Look for meaningful ways to help others this season. Don’t just go for a run. Run in a charity run. Don’t just buy gifts for your family. Find someone in need you can buy a gift for. And if you are thankful that you aren’t in our position, please support cancer research. Our favorite 501❨c❩(3) right now is Accelerate Brain Cancer Cure (http://www.abc2.org/). They are funding cutting edge research that will hopefully save lives like David’s.
3. Please pray for David and all of those who are battling cancer, and those of us around them trying to make the right decisions. Please pray for wisdom, calmness, strength and a sense of teamwork to get through this battle. Please pray that we are led down the right path so that we can beat this thing.