The Latest Plan
Ana’s getting a ulstrasound of her abdomen this Friday to evaluate the tumor near her bladder. Dr. Yamashiro and the surgeon, Dr. Middlesworth, are concerned that if it gets larger and moves into her intestines, it will be difficult to resect. I’m not sure if that’s more of a concern than the danger to her bladder, but these days any time her stomach hurts my mind goes to a dark place.
Imagine if every time your kid had a stomach ache you thought it was a tumor? I’m going crazy.
If the ultrasound looks okay (whatever that means) we get another week of relative normalcy before the next PET scan which is scheduled for Friday 8/1. This will tell us if the Jakafi is working. If it’s not working…
I’ve emailed a cancer research scientist who speaks in riddles and keeps trying to explain some sort of complex genetic testing that involves growing Ana’s tumor cells into a 3D model they can use to test various drugs (outside of her body). I can’t understand 95% of what he’s saying, so I keep forwarding his cryptic emails to Dr. Yamashiro.
I’ve emailed a neurologist at Harvard who specializes in clinical trials and works tirelessly to help children with rare cancers get approved for compassionate use. I got her name from the father of a child who died of a rare brain tumor four months ago. I don’t know if she can help, but she may be able to get Ana access to some of the newest targeted cancer drugs so it can’t hurt to reach out, right?
I’ve joined a site called Inspire.com which is filled with mostly adults who are living with cancer – or who are caregivers. I’ve posted about Ana and have already met some really amazing people (including the cryptic scientist).
Meanwhile, Ana’s still feeling well and having a pretty good summer. I realized long ago that the most stress I ever feel is when my kids are sick or in pain. The fact that she feels good (except for yesterday’s stomachache) means that I’m okay too – for now. But…
I can’t focus. I feel disconnected from everything. I’m stuck behind glass – while the world keeps turning on and on.
Today I finally gave up trying to concentrate on work. I edited my second book for a couple of hours, then I grabbed Ana out of her room and took her to get Starbucks. This made me happy – having her chatting next to me about her life, her friends…and I realized (as I drove…) that at this point I can only take it day by day. Do you know how fucking hard that is? I’ve lived my entire life looking forward to things – I’m not good at living in the moment. I suck at it, actually. So maybe this is good for me…but it’s a delicate balance. If I don’t structure my days, I find myself staring out the window or lying down…waiting. This is what I’m struggling with each and every day.