"When he is in trouble, Riley gives him life."
February 1, 2015
Ben’s lips are blue and when I put my hand in his and ask him to squeeze it, he can’t.
The day before, Dr. Ackerman performed a revision surgery on Ben’s shunt that went perfectly except for a tiny brain bleed that occurred as a result of a sticky substance that surrounded the shunt’s catheter. Ben, being a 5-year-old, was up playing that night and everything seemed fine. The next morning, his left side shut down so severely that my wife called me at home and said she thought he’d had a stroke. By the time I made it back to Riley, the staff had determined that his brain had seized, not stroked.
Four years before this, an MRI had revealed Ben’s brain cancer. In December of 2014, he’d just been declared cancer-free for four years after having had three surgeries and more than 30 radiation treatments. Not two months later, he started having headaches and double vision. The cause turned out to be a clogged shunt, not a recurrent tumor.
February 14, 2015
Ben’s lips are blue again, this time from eating Superman flavored ice cream and when I put my hand in his and ask him to hold it he won’t, but this time it’s because he is running down the beach. Two weeks after his shunt surgery, we are on a family vacation in Florida visiting Ben’s grandparents. He plays with his brother in the water and none of us think about cancer or shunt blockages very much.
Just a few months ago, Ben was taken off his anti-seizure meds and someone with expertise declared his EEG to be normal.
Ben had brain cancer and now he does not.
Ben had a clogged shunt and now he does not.
Ben had a series of seizures and now he is at no risk.
It is cancer awareness month and these are the things I would like for people to be aware of.
I don’t know how many times Riley Hospital can save Ben. I don’t know how many times he can be cut into, radiated, sedated, and medicated before the outcome stops being so positive. I really don’t know.
All I know that is when he’s in trouble, Riley gives him life.
Please be aware of that, and please be aware that Riley saves a lot of kids in Ben’s position and they need you and your funds to make sure that kids are eating ice cream and running on the beach rather than eating hospital food and lying on a bed.
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