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Connecting TSC with chordomas: One mother’s story

Posted by Jeanette Juryea on August 26, 2006

It started insidiously enough with Katie wobbling on her bike as she rode down Main Street, was that a bump in the road or a lapse of concentration? Soon, however, she didn’t want to ride her bike at all. Her mother, Molly, a biologist by training and a confirmed optimist by personality, came out to see what the problem was and became concerned as she watched Katie struggle to get the bike started, hopping around in the road unable to get her balance. Immediately, worries sprang to mind of the brain surgery they had fought through just a year ago. Katie had been born with Tuberous Sclerosis, TSC, a rare genetic condition causing the formation of benign tumors throughout the body.

In Katie’s case she had tumors in her brain that caused epilepsy and, after all the epileptic drugs had stopped working, it was decided the neurologists should remove three superficial tumors from her brain. It had been a traumatic time with Katie bed bound for a week with electrodes attached to her brain; painful, scary and exhausting for the whole family. Katie had come through with her endless good humor, ready smile and strong fortitude rebounding her back to good health. But surely, not again, thought Molly. It just wasn’t fair.
Children’s Hospital ran extensive tests and came back with the terrible news. Katie had a rare chordoma of her spine. A large, cancerous, tumor that wrapped around the spinal column of her entire neck involving bone, nerves and muscles. Surgery was the only option but Katie would risk paralysis from the neck down or even death. If they did nothing the tumor would become more involved and she would lose her balance completely before becoming incapacitated and finally dying. There were no other options.
Molly researched thoroughly and asked questions, she consulted all the experts on TSC and the oncologists at Children’s Hospital. Was this part of the TSC? Absolutely not, she was assured, just a very unlucky coincidence.
How could so much be put on one child? It was so unfair. Surgery was scheduled with the doctors warning Katie all of the possible outcomes of the surgery. Bravely, Katie soldiered on. Surgery was scheduled with neurologists, oncologists and orthopedic surgeons taking their place in the operating room. At the same time, Molly was spending any free time researching on the internet, finally finding a trial that was being held to look at whether there was any connection between TSC and chordomas; it looked like there was. From this, Molly was able to find and reach out to the parents of other children who had suffered from both conditions and here in her moment of greatest need she gained her biggest support to help her through this traumatic time.

While her friends and neighbors knew of Katie’s difficulties and surgeries it was these new found parents who could completely relate to Molly as her daughter underwent the frightening surgery. These other parents, many thousands of miles away, whom she would never meet or even see, were her lifeline during those critical moments. Steve and Mary, Elaine, Stefan and Debbie emailed back and forth. Had Katie had the surgery yet? How were things going? Was she out of surgery yet? Was the surgery successful? Hope and prayers flying through cyber space to help and comfort the family in need.

The surgery was long and difficult, the tumor had wrapped around the nerves in her right arm as well and after 16 hours everyone in the operating room was exhausted and it was decided to close up Katie’s neck and have her come back in a couple of weeks to finish the surgery. Disappointingly Katie had to endure yet another operation to fuse all the bones in her neck because of the extent of the tumor. All the while, the other parents, in the U.K, Germany and Switzerland, were there at their computers supporting and comforting Katie and Molly, reaching out across the ocean to send their love and support.

Katie came through all the surgeries successfully with little more than a sore neck and a scar that is hidden beneath her thick shiny brown hair. A scar with stitch lines that will forever remind them of the strangers from far away lands, that they will never meet, who became friends and helped hold them together in their time of need. Strangers connected by the internet and bound together by their compassion and empathy for a distant child and her mother in need.

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