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Jared Vance


Jared Vance

May 29, 2002 – Nov. 29, 2009

Jared was a happy normal boy about to turn seven when just weeks before his birthday he was diagnosed with a clival chordoma tumor. Jared's battle with this terrible cancer ended only six months after diagnosis. Despite the roller coaster of a time we had, it was the most memorable, wonderful time of our lives. We lived memories with our son that we will cherish in our hearts forever.

Our journey

Jared began experiencing regular headaches. After a couple weeks of this and seeing his pediatrician, a scan was scheduled. But in waiting for the scan more symptoms came within just days – impaired speech and vision. Then, the awful diagnosis was made: a rare clival chordoma tumor.

Surgery was scheduled at Primary Children’s Hospital, but the approach of the surgery and little experience with this type of tumor led our family to search and pursue other routes. We fortunately were connected with the Nemelka Family, whose daughter shared this same diagnosis. They, in turn, were able to connect us with medical help in Boston, who had much more experience with chordoma than the doctors in Salt Lake City. After much discussion, we canceled our surgery here locally and rushed on a plane to the Children’s Hospital in Pittsburgh, PA where Jared had his tumor resection surgery. They were able to resect 95% of the tumor, except for a small bundle surrounding Jared’s nerves to his tongue. Following surgery and recovery our plan was to go to Boston for proton beam radiation to eliminate the remainder of the tumor, but to the shock of everyone, at Jared’s six-week post surgery visit the tumor was back! Not only was it back but the tumor had doubled in size. We rushed to Boston for help. The doctors in Boston said this tumor was truly in a ‘league of its own’ and so aggressive, unlike other chordoma tumors they had treated.

Upon arriving in Boston, we met a fantastic physician and researcher, Dr. Thiele, who specializes in Tuberous Sclerosis Complex (TSC). Upon being diagnosed with a clival chordoma, Jared was also diagnosed with TSC. Dr. Thiele felt that TSC and chordomas could have a strong link and felt Jared’s case was worth researching further. There was evidence that the medicine rapamycin can help shrink tumors in people with TSC, so this is what we decided to do. We knew that chemotherapy had not proven to be very effective towards chordoma, so we decided to give this medicine a try and be ready at a moment's notice to start chemo if we did not see improvement.

Upon starting the rapamycin, Jared was going downhill quite rapidly. Once he started this medicine his symptoms seemed to stop getting worse. They were still present and he was not improving like we hoped, but this medicine did seem to us to help Jared for a time. Jared was doing quite well so we decided to leave Boston and come home. After six weeks at home we noticed a lump protruding out of Jared's throat; our worst fears were confirmed, it was tumor and it had grown. Another MRI was performed and it was very evident just how aggressive this tumor was. This tumor had grown so much that our options of further surgery, radiation, or chemo would only make the remainder of Jared's life miserable. All of his doctors concluded that it was just a matter of time, and unfortunately it was.

Jared spent the last weeks of his life assembling shelves full of Legos donated to him by the Make A Wish Foundation. This was a blessing to see him engaged in something that he loved so much and to be distracted from his sickness and able to get his mind off just how lousy he felt.

Spiderman, Superman, Batman, Ben Ten, Transformers, you name it, Jared loved them all. He dressed like them, acted like them, drew them, and wrote about them. We love him, we miss him, and we love to share him with everyone. He truly has been a hero in our home and will always continue to be one to all who know him well.

The Chordoma Foundation and those associated with it are making big steps in understanding chordoma. We thank you for all your efforts!

-The Vance family

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