For the month of May, in honor of brain tumor and NF awareness month (so convenient to have them at the same time!), I am trying to tell our family's story of living through both. I hope that by the end folks have a sense what brain tumors and NF can do to a family, why and how we can work for better treatments (and maybe a cure!), and why we should always, always hope.
As a side note before this hard post, today Genna had an MRI that was stable. Her protein levels were off, so no chemo today, but we got some hope today. This is the first time we've gotten to the year mark on chemo without progression (or such toxicity that we had to stop). Hope.
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| the original MRI scheduled. Yes, I am an onco hoarder. Whatever. |
“Genna has massive hydrocephalus, fluid on her brain”, the doctor was explaining to me. “She has brain tumors, large brain tumors that are blocking the flow of cerebral spinal fluid. She needs to get to a hospital NOW.”
Um, say WHAT, Willis?
Tumors? What the…I felt like the floor was literally collapsing under my feet, I had run upstairs, away from my noisy children , to hear the doctor better. He explained G had tumor, lots of tumor. Apparently “lesion” said by eye doctor is euphemism for “crazy gigantic tumor but I can’t bear to tell you so call your doctor”.
“Wait, so is this life threatening?” I finally squeaked out.
“Yes,” he answered. “She needs to get to Columbia Presbyterian tonight.”
I just… I had no words, I just , my brain just shut. Down. Completely. I kept asking the doctor to repeat things, then the nurse, then the doctor again, I had to call New York, I was supposed to go to a hospital in Manhattan? Somewhere in Manhattan? I am phobic about driving on the highway or ordering at the deli counter, Manhattan? G seemed FINE, how could this be? I was trying to write words on little pieces of paper.
I still have that paper somewhere, that shocked scribble of words.
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| patriotic scraps of paper. I found them in my original onco binder. sigh. |
Life threatening?
But optic glioma aren’t life threatening, THAT IS WHAT ALL THE NF LITERATURE SAID.
The NF literature neglected to mention that a big enough tumor pushing back along the optic tract can block the ventricles that drain cerebral spinal fluid and cause life threatening hydrocephalus. Details matter, people.
The next few hours were a disaster of confusion, I know I called Dave, I know my friend Jen brought us a chicken divan (she was one of the few folks who knew about G’s NF, she had offered to bring us dinner on MRI day), I whispered to her “PRAY FOR US. PRAY HARD” as I held the phone to my ear, trying to work out details and doctors.
At certain points I remember just weeping and asking the nurse to please just tell us what to do. Just tell us what to do…
…Because the doc at Columbia Presbyterian didn’t take our insurance. A nurse there suggested we come in through the ER with a “headache”, then they would HAVE to treat us, but she had never met Genna, who had never had a headache. Massive tumor, massive hydrocephalus, NOT one headache or bout of nausea EVER. Not one.
Part of G’s ferocious diva-ness was the compulsion to INSIST UPON TRUTHFULNESS. If we went to an ER in another state saying G had a headache, I KNEW, I knew she’d be yelling, “MOM! I DON’T HAVE A HEADACHE! WHY ARE YOU SAYING I HAVE A HEADACHE? I HAVE NO HEADACHE! MOM! MOMMY! MOM! HEY, MOM! I DON’T HAVE A HEADACHE!”. Like that. And it seemed karmically ill-advised to try and get brain surgery under false pretenses.
By now it was 5 o’clock, offices were closing, I was in a panic, I didn’t know what to do. Finally our docs arranged for us to go to the Children’s Hospital of Philadelphia, they set up an appointment with a neurosurgeon (I have his name and where to park on that scrap of paper), they told us it was probably ok to wait until morning. Maybe. Possibly.
I will say that at 10 pm the neurosurgeon from Columbia Presbyterian called to make sure we were taken care of. I have always appreciated that, it wasn’t his fault that they didn’t take our insurance.
The rest of that evening is a blur. We were supposed to start construction at our house the next day, to convert our garage into a playroom for the kids. We were supposed to be getting ready for a lazy Labor Day weekend.
We were not supposed to be wondering if our daughter would live.
That night, Dave and I just laid in bed and cried. We cried and held each other and grieved and panicked and despaired for our little girl, our diva queen goddess princess Genna.
The next morning we packed some bags (we didn’t know what to expect, how do you pack for “drive to random hospital in another state to see what the hell is going on in your little girl’s brain”?), kissed my 9 year old and my 2 year old goodbye, and drove 81 miles southwest, to the City of Brotherly Love…
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