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Dad was diagnosed in July 2012 when an MRI identified a tumor on L1 – L2. I reached out to the Chordoma Foundation via Facebook in search of advice on how to proceed. The Foundation responded very quickly with your phone number. During our one phone conversation, CF was able to provide me with some meaningful and actionable guidance. Some of this included the importance of seeing a doctor with specific experience in treating chordoma, such as the surgeons at Johns Hopkins. The Foundation also advised us to seek out multiple opinions on treatment plans and to not necessarily go with the first surgeon we met.

Together, the two surgeons, a radiologist, and a team of other doctors devised a plan for pinpoint radiation (cyber knife) followed by back-to-back surgeries in September 2012. During the first surgery, which took about 11 hours, they put two titanium rods through eight vertebrae. On day two, the surgeons removed the tumor and two impacted vertebrae and installed a mesh cage to fuse the remaining sections of his spine. This second surgery lasted about six hours. Dad stayed in the post-surgical unit for a few days, then recovered in the rehab wing for about two weeks. His total stay at the hospital was only three weeks.

The operations were deemed successful at removing all signs of cancer and minimizing collateral damage. Dad was walking carefully on his own when he left Hopkins. By Thanksgiving, he was fairly mobile and going up stairs. By Christmas, he was back to cooking as usual and hosted our family for Christmas dinner! Today, 10 months after surgery, he still has numbness in his quadriceps, some swelling in his lower legs/ankles, and stiffness in his back. But he remains in control of all bodily functions and is back to his optimistic, sarcastic self. Actually, I think he remained optimistic and sarcastic the entire time.

While we aren’t sure if Dad will be able to play tennis again, he can certainly drive a car, fly fish, cook delicious meals, enjoy a good microbrew, and teach his granddaughters to sketch beautiful drawings. We are blessed by the results of his surgeries and rehab, and I am so thankful for the guidance and support CF gave me last summer. Thanks to the Foundation’s encouragement, we were able to meet this frightening, intimidating situation head-on … and beat it.

Tell us your Uncommon Story

Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.

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