It’s been a whirlwind few days. I always regret not writing daily during these times, but it seems there is so much to do that writing here is the lowest priority. Not that I don’t appreciate the outlet, but just that it seems a little self-indulgent.
David had an MRI on Monday right after the Thanksgiving break. His dad took him up to DC for the scan, and Richard and I flew back to Virginia from Kansas at about the same time. We all met in DC on Tuesday morning to get the results and start the Avastin treatment. We checked in at the hospital, but there was some sort of communication problem, and our doctor wasn’t notified that we were there. This resulted in a longer wait time than normal, but they were very apologetic when they got to us.
The nurse went through the normal round of questions, and David seems to be taking more of an interest in his care and treatment. When the doctor came in, he repeated a few of the questions and added some new ones. He started asking David about back pain, and since the MRI was on his spine, I assumed we were in for something new. Sure enough, when he got around to going over the MRI results with us, he told us that David has a growth in his spinal column around T10. (That’s near the middle of his back.) It isn’t causing any problems for David, and since the spinal cord is a touchy area, they recommend leaving it alone. The treatments that David receives to fight the brain tumors will fight this spot, too, since it is almost certainly the same type of tumor.
Not sure if I have ever mentioned it, but tumors that begin in the brain “rarely” metastasize beyond the brain. So no one had been looking for this type of spread. But our very intuitive doctor decided to do a spine MRI because David’s new tumors were in the ventricles – an area known to cause spread because the fluid there is the same as the fluid in the spinal column.
So our precious boy who has a “rare” type of brain tumor also has the “rare” condition that it has spread. When a different nurse told us later that the side effects of the new medicine were “rare”, I just laughed and told her that’s the world we live in. Then I made her explain what those “rare” things are so we can be prepared if he is once again the “rare” one.
I jumped ahead a little, so let me go back to the doctor. He stayed with us and answered all the questions we had at the time. (We had more later and emailed for more details. They’re really good at getting back with us and making sure we are comfortable with what we need to know.) We are exploring options for radiation or gamma knife on the spine if it is needed, as well as some new clinical trials once David turns 18 in January.
We finished with the doctor and went to the special “pods” they have for chemo & related treatments. David’s treatment isn’t technically a “chemo” but it is administered via IV like a chemo would be, and so we are treated in the same area. It was a pretty draining day to that point, and he had a little trouble with the IV stick. Normally, he manages those things just fine, but this time he got nauseated. The nurse gave him some time to rest and feel “normal” before we started the Avastin, so the process was longer, but I think it was good that he had the chance to recover before they started the drug.
He was pretty tired. All of this is mentally exhausting, and he has been carrying his full load at school (dual enrollment English, Physics, and other advanced classes). As he was relaxing from the IV being started, he fell asleep. He woke up for them to take his vitals and start the Avastin, but slept through most of the Avastin infusion, which took 90 minutes. To add a little insult to injury, he had his flu shot once the Avastin was over. As always, he was very polite, but not as many jokes, despite the best efforts of some good friends who sent us with a stack of silly cards to be opened at different intervals throughout the day. We had some chuckles, but it was definitely a tough day.
When his treatment was over, he was clearly tired, but still wanted to go out to eat. It was getting pretty late in the day by this point, so we didn’t seek out a place in DC. He has several restaurants up there that he would like to go to, but to avoid traffic, we went to our favorite restaurant, Mike’s American Grill. We all ate a lot less than normal, but the food was as good as always. We ordered some key lime pie to take to Austin since she didn’t get to go with us that time.
David didn’t seem in the mood to talk, but was clearly not his normal self, so I rode in the back seat with him back to Fredericksburg. Richard was a good sport about “chauffeuring” us. We watched (mostly listened) to Straight No Chaser’s holiday DVD. They are an a cappella group that David really likes. We dropped him off with his dad, and I’m told that he showered and went straight to bed.
He and Austin got a later start the next morning, but other than that, things are pretty “normal”. Mark, Richard, and I met with the counselor and nurse at the school to make sure they all know what’s going on with David’s care. David is very well liked at the school, and it always makes me feel good to know that so many people care about him and Austin. The counselor even told us that though they have had many kids with cancer through the years, none of them have been as positive as David. She said that David is known around school for his positive outlook and friendly personality – not because he has cancer. That was good for me to hear. I know he doesn’t like to get attention because he has cancer, and it sounds like that is never the first thing people think of when he comes to mind.