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Aaron McMahon: International Chondrosarcoma Patient Story

Aaron McMahon: International Chondrosarcoma Patient Story | UPMC

The Challenge: A Terminal Prognosis

Aaron McMahon was a typical teenage boy living in Cork, Ireland. He played rugby and soccer, enjoyed video games, and sometimes faked an illness to get out of school.

But in his early teens, he wasn’t faking anything. Aaron quickly gained weight, lumps appeared on his neck, and he dealt with frequent dizziness, headaches, and sensitivity to light.

Over the next few years and after many medical appointments, doctors diagnosed Aaron with a thyroid issue and vestibular migraines.

Despite trying different medications and seeing many specialists, nothing seemed to help. Aaron and his family were frustrated that they couldn’t find a solution.

“Enough was enough. I just wanted someone who would take heed and do something to help Aaron,” says Gail McMahon, Aaron’s mother.

When Aaron's ears started to bleed, an endocrinologist sent him to get an MRI and CT scan. “As we were leaving the MRI unit, the radiologist asked if Aaron had any earlier MRIs because they wanted them to compare. When they mentioned comparison, I just knew they saw something,” says Gail.

Doctors diagnosed Aaron with a brain tumor and sent him to Dublin, Ireland for advanced neurosurgical care. Aaron had a craniotomy — an invasive operation where surgeons temporarily remove a bone flap to access the brain.

After surgery, doctors came back with bad news. They weren't able to remove the whole tumor. “They told us they were sorry, but they couldn’t completely remove the tumor because it was in the bone. Its location was impossible to reach,” Gail says.

Test results indicated the tumor was a chordoma, a rare type of bone cancer found in the skull or spine. Doctors diagnose this type of cancer in just one in one million people a year.

With limited treatment choices, Aaron had proton radiation therapy in Germany. But, his health continued to decline.

Aaron’s doctors told him there were no other options, and that he had only months to live. That prognosis didn’t deter Aaron and his family. “I laughed at that. It just wasn’t good enough for me,” Aaron says.

The Path to UPMC: A Family’s Tenacity and Worldwide Support

Desperate for help, Aaron’s father, Paul, contacted the Chordoma Foundation and connected with others going through similar situations.

“Someone in the group reached out and asked why we had started radiation therapy when Aaron hadn’t even had a full resection. My antennas went up, and I thought maybe something wasn’t right,” Paul says.

Paul asked the group to recommend the best neurosurgeons to treat chordomas. He kept hearing about an American neurosurgeon, Paul Gardner, MD, co-director of the UPMC Center for Skull Base Surgery in Pittsburgh, Pa.

In March 2018, Aaron and his family traveled to Boston to attend the International Chordoma Community Conference. Dr. Gardner was also there and met with the family to talk about Aaron’s case.

Prepared to talk through medical documents, the family was pleasantly surprised when Dr. Gardner closed his laptop. He turned to Aaron and asked him to tell him about himself. “I felt really comfortable and calm with him. He actually listened to me and spoke to me like a person,” says Aaron.

After returning to Ireland, the McMahon family got word from Dr. Gardner that Aaron was a good candidate for surgery.

“Here you have a child who others told there was no hope and nothing they could do. Then we find a hospital that is miles ahead in technology, and a doctor who says he can help us. It’s amazing,” says Paul.

Aaron’s family and friends set up a Go Fund Me campaign. They raised money to help with the cost of surgery and travel to the U.S. Aaron wrote lyrics to a song called One in a Million, highlighting the emotional journey of facing a terminal diagnosis. The song surged to the top of the Irish charts.

After a little over a week, the campaign raised more than $100,000 from the people of Cork and across the world. With added support from the Gavin Glynn Foundation, Aaron and his family headed to Pittsburgh for his surgery.

The Solution: UPMC and the Endoscopic Endonasal Approach

Dr. Gardner and Dr. Carl Snyderman, a UPMC otolaryngologist, removed the tumor through Aaron’s nose using the Endoscopic Endonasal Approach (EEA). Pioneered at UPMC, EEA is an innovative technique that lets surgeons remove hard-to-reach tumors without trauma to the brain, face, or scalp.

The McMahon family was impressed with UPMC’s advanced technology.

“Never in my life had I seen robots in a hospital. It was amazing,” says Paul. “There was a screen that kept us updated on Aaron’s status through surgery. That information made a massive difference and helped us feel more relaxed.”

After the procedure, Dr. Gardner met with the family. “We could tell even before he spoke that it was a success because he was smiling ear-to-ear. He told us they removed the entire tumor,” Paul says.

Aaron turned 18 two days after his surgery. To celebrate, the staff brought in a cake and sang to him. “The nurses and staff were amazing,” says Aaron.

The expert neuropathologists at UPMC were able to give a more precise diagnosis of a chondrosarcoma, a tumor much like a chordoma.

The Results: A New Beginning

After spending five months in the U.S., Aaron was healthy enough to go back to Ireland.

Now home, his recovery continues to go well. He will need continued treatment and routine check-ups to make sure the tumor doesn't return.

Aaron is feeling stronger every day. He's eager to get back to school and finish his certifications.

Aaron's family is eternally grateful for the care he received at UPMC and hopes to help others in similar situations.

“Aaron celebrated his 18th birthday, which is something other doctors told us was an impossible feat. Our wish is that Aaron’s story will give hope to other patients and let them know not to give up,” says Paul.

Aaron’s treatment and results may not be representative of all similar cases.