Genna C. - Quilt Finished in 2006

Born: July 24, 1998

Illness: Optic Chiasmic Hypothalamic Glioma, Neurofibromatosis

Genna C.'s Story

written by mom

Genna was born exactly on her due date, July 24, 1998.  From the very beginning she was Daddy's princess.  Everything looked great: she was a little juiceball of a baby, always smiling, developmentally on track.  Then, at six months old, I noticed several birthmarks on her legs and torso.  From our family history, I knew this meant that Genna had inherited Neurofibromatosis Type I, an incurable genetic disorder that can lead to tumor growth anywhere on the body (see www.ctf.org for more info).  We were devastated, but Genna seemed fine.  A visit to the neurologist yielded no real worries, and a baseline MRI at 14 months was clear.  The doctors did advise that we have Genna's eyes checked once a year, as eye tumors are common in NF patients.

Genna seemed fine.  She was a bundle of personality.  Her yearly eye exams always made me nervous, but she always passed with flying colors.  When she started kindergarten in 2003, we noticed a few things that did not seem right.  Genna started acting sort of like a ferocious diva... very emotional and demanding.  She also seemed to have some perceptual difficulties in school.  I brought her to the neurologist again for testing.  After a lengthy wait in a crowded room full of crying children, they did some expensive testing and then they told me that she should be tested by our school district.  My husband and I were frustrated, but I kept working on school stuff with Genna at home.

In May I noticed Genna was having trouble seeing people walking down our street (she would mis-identify them), and holding books close to her face.  I knew I already had her eye check scheduled for August 3, so I didn't worry much.  I got glasses in kindergarten; it made sense she would too. 

At her eye exam, the doctor was puzzled.  She couldn't correct Genna's vision with the array of lenses she had.  On a hunch, she ordered an MRI.  Dave & I were supposed to go away for our 10th anniversary trip the next day, so I scheduled the scan for Monday, August 30, 2004. 

Dave and I had a wonderful trip--one I'm so grateful for, now, knowing what happened next.  We knew, during the scan, that there was probably something there.  What else would explain the weird eye check?  But we didn't think it would be a big deal. 

Genna got to pick a Care Bear after the scan, and we got her lunch at Burger King; she has to fast for sedation, so she was starved, but so perky.  I was barely home (& Dave back to the office) before the eye doctor called.  I was so grateful--I had worried about having to wait.  I've since learned that a terrible scan gets a quick call.

She told me the scan showed some sort of mass, there was fluid build-up, call my pediatrician.  I wasn't too worried, so I let Dave know what the doc had said, and then called our pediatrician.  Then my world collapsed.

Genna apparently had a massive brain tumor that was causing obstructive hydrocephalus; she needed immediate shunt surgery.  I panicked--after a lot of phone calls, insane amounts of crying, and wonderful support from our pediatrician, we were set to go to the Children's Hospital of Philadelphia the next day.

Thus began our journey:  leaving our nine year old son & two year old daughter with relatives...the meeting with the neuro-surgeon, the oncologist, the diagnosis:  a tumor that wrapped around the optic nerves, back through the chiasm to the hypothalamus--this explained both the visual & the behavioral changes. A smaller tumor also sat in her cerebellum.  Meeting the social worker and getting a bag full of stuff meant for cancer patients...getting into the PICU, watching Genna, who seemed fine,joke and play Candyland with the nurses...watching the nurses' faces crumble as they read Genna's MRI report...hearing that Genna told the anesthesiologist before surgery that "it's my first time, so I'm a little nervous"...all these moments are etched in my mind.  Hearing Genna wail that she wanted to go home in the first awful moments after shunt surgery...two weeks later having a port put in and starting chemo.  All at a hospital 2 hours from our home.  It seemed so surreal--like a really unpleasant episode of the Twilight Zone.

Genna did the tried and true protocol for low-grade brain tumors--she felt miserable, could hardly stay at school, and her vision failed dramatically.  In 3 months she went from 20/50 to 20/400.  We were destroyed, but not surprised, to learn that the chemo had failed, and the tumors were growing.  In December 2004 we switched chemo--and things began to improve.  Within a month or so, Genna's vision stabilized, and so did the tumors!  Just in case, she started to learn Braille.  Still, we felt like we were starting to get our Genna back.

By the end of the school year, Genna was back in school for full days.  Medicine took care of most of the behavioral problems and ocd caused by the tumors.  She took swimming lessons, and even went to camp for a few days (with mom) right after an unexpected shunt revision.  That time the PICU wasn't so scary!

In October 2005 we planned to stop treatment:  Genna's tumors were no smaller, but they were stable.  Unfortunately (as always), something new showed up on Genna's scan.  Some small, inoperable spots--not causing any problems now, but with Genna's history, no one wanted to take any chances.  She began her new (3rd) chemotherapy in November 2005.  We scan again in 26 days (January 30) to see if it's working.  I'm so worried...

But right now Genna is hollering "Can I show you something? and happily showing me "The biggest thing of muenster I ever saw!" (I went to the store today!).  She is a joy.  To see her you'd never ever know that she had such compelling and catastrophic problems.  She's a happy second grader who does ballet, loves Christian music, colors prolifically, and loves playing dolls and house with her little sister, Rosie.  She still has all her crazy curly hair (the chemo has straightened it a bit, but she kept it, so we're not complaining!).

Last week her port broke (a rare complication) and floated into her pulmonary artery...so Genna had essentially a heart catheterization to get it out!  And she was back at school on Tuesday.  Genna is mighty, and absolutely convinced that she will be well.  This is what we pray for every single night before bed--that she will someday be fully healed and free of hospitals and drugs and pinches and pokes. 

I hope, too, that some day she can see well enough to learn to cross stitch...which is one of my passions.  Thank you all so much for reading our story.