It's cliché, but cancer, and any major disease really, regardless of its fatality, is a taker. I try to focus on all the good we have, but sometimes it really hard when there seems to be so much more loss.
My daughter is having surgery again next week to remove as much of the new tumor as possible before it becomes entangled with her brainstem. Cerebellum tumors cause issues with gross motor skills. Brainstem tumors cause difficulty with vision, speaking, swallowing, and breathing among other things. I have to imagine that if this disease takes her life, it is kinder minimize that kind of suffering.
She, obviously, does not want surgery. We are incredibly scared about the risks. The last time she had surgery, we were in shock without time to really understand it all. We know so much more now. She could lose her personality, lose her ability to swallow, move her tongue, and talk, or lose even more cognitive abilities. I carry those potential losses around, even knowing that the only other choice is to do nothing.
My daughter isn't aware of those risks. She just knows how bad she felt after the first surgery and how much her life had to change. We talked about being brave. We talked about how so many kids have tumors that can't be removed and the symptoms they suffer because of that. She understood.
Then I had to tell her that she wouldn't be able to be in the play she has been rehearsing since October. She started sobbing. A major loss for a 9-year-old. And us too honestly because we lose an opportunity to see her do something she loves.
My daughter has also been losing her hair, a side effect of the Mekenist she was on. She has lost all the hair on the sides of her head and the back has thinned considerably. She will lose more after her next surgery and re-radiation, so much so that we will probably have to cut the rest off. I have purchased some silk caps to help with pain and for her to be more comfortable. I also showed her pictures of women with the sides of their head shaved. She thought they looked awesome. At a recent event, she saw an older Girl Scout who had her head shaved on all sides with a ponytail on top. My daughter tapped her on the shoulder and told her that her hair was awesome. She gave my daughter a sticker. Small things to make the changes easier to swallow.
After the surgery, we are planning to do craniospinal radiation - something that was deemed too harmful for a 9-year-old last summer. Immediate side-effects include fatigue, hair loss, and difficulty swallowing. A feeding tube was offered as a possibility. At first I said only if it is absolutely necessary, but knowing the way this disease progresses, it might make sense to do it now. I don't know.
Last week I asked our doctor about proton vs photon radiation because proton causes fewer long-term side effects. The long term effects of photon irradiation to the brain and spine include cognitive decline, hormone deficiencies and infertility, thyroid issues, reduced spinal growth, and more cancer. With a pointed look, her doctor made it clear that proton was for kids who had a high probability of long-term overall survival and whose diseases weren't as aggressive.
I write all this knowing the likely outcome. We've never asked for a life-expectancy projection from any doctor. They aren't fortune tellers. But, still, I know. I can hope for stability and for as much time as possible, but none of this is a cure, especially with leptomeningeal disease. And how do you explain that to people who haven't bothered to look up anything about her disease or who ask if she is good now? I can't say any of this out loud because I feel like speaking it will call it into existence sooner. Still, every time my daughter talks about something she's going to do in the future, a little part of me breaks.
As I look at the week ahead and maybe even the week after that, I think about how we should spend that time knowing what could lie ahead. This weekend, we slept in, we watched a movie, we had friends over, and we went to Sweet Frog. We tried to be as present as possible.
When people talk about bucket lists, it's often about going to far flung places or doing something they've never done before. But, how would you want to spend your last few weeks if you knew the end was coming? Perhaps just being with the people you love the most is enough.
I know this is morbid. I have to write all this out to stop it swirling around in my head. Optimistically, she will come home from the hospital after a few days, breeze through radiation fine just like she did the last time, and have an awesome 10th birthday in May when this is all done. I've already got some ideas for the karaoke party she wants to have.
A Song When You Need to Process Your Angry Feelings
The Linda Lindas, "No Obligation"
