We are on week three of my daughter's radiation treatments, and so far so good. She doesn't have any fatigue yet, and is feeling pretty good. Her treatment in total takes about 10 minutes. We walk back to the radiation machine room. She lays down on the table. They put a warm blanket on her. They put the radiation mask over her head and snap it down on the table so she can't move. They raise the table and make sure it is lined up correctly. I tell her I love her, and we all step out of the room leaving her there. The doors slide shut, and I wait.
I wonder what it is like to lay there with the lights and the noise, not being able to move. I wonder how it feels. I wonder what she thinks about while she is in there, listening to Lindsey Stirling and squeezing her squishy toy.
I was talking to my youngest daughter the other night before bed. I asked her how she was feeling about her sister's treatments. If she felt left out or scared. She said that she was worried that she would have spiderwebs in her brain when she was older. She said that she was worried that it hurt her sister to have her forehead cut open and that it would hurt her too. I told her that what her sister has is really rare. That her dad and I never had that and that she probably wouldn't either.
Its really hard to see your kid going through something that you've never experienced, that you can only support them through. It really hard to tell them that their sibling probably won't have to experience this and have them know how truly unfair it is. I know none of us can ever know what bad things will happen to us in life, but at least I had a full childhood, a young adulthood, and got to determine what my life looks like as an adult. I got to experience having her. And it's hard to face that my daughter may not get those same opportunities.
At the end of May, right after I got the pathology report back, I took her in for her post-surgery MRI. The MRI was sedated because they needed to scan her brain and spine. The nurse who took us back for anesthesia commented on how smart my daughter is and that she would probably go to an Ivy League school someday. I smiled weakly and said maybe, while thinking in my head that she might not make it to middle school.
I know the importance of staying positive, but it is really difficult sometimes, especially when all of the published information measures overall survival in months. A better prognosis just means more months than average.
I try to check in with my daughter to see how she is handling everything, without disclosing too much of my own thinking. What are her fears? Her worries? I wish I could crawl inside her head and see what's in there. So far, she hasn't said much. Just that she tries not to think about it. Maybe that's my problem.
These are all just songs she likes
Daisy The Great & AJR, "Record Player"
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