How Hope, Community, and a Single Comment Saved One Man's Life

When a stage 4 cancer patient faced impossible odds, a chance online comment became his lifeline.

Don and Ann Jackson

In November 2017, Don Jackson and his wife Ann received devastating news that would change their lives forever. Don was diagnosed with squamous cell head and neck cancer in his right parotid gland—a particularly aggressive form that had already spread to his facial nerves, causing partial facial paralysis. His doctors delivered a grim prognosis: zero hope. They advised him to prepare for hospice care, warning that the cancer would likely spread aggressively to his right brain and lung.

Don's own research confirmed the bleak outlook. Most medical websites agreed with his doctors' assessment. The most optimistic source he could find gave him just a 5% chance of surviving a year.

Yet today, more than seven and a half years later, Don isn't just surviving—he's thriving. At 89 years old, with his 90th birthday approaching in May 2025, he's even planning a return to the Senior Games (formerly known as the Senior Olympics) for singles racquetball, where he previously won gold medals at both California state events and the World championships in Utah.

"I have no illusions of winning," Don says with characteristic humor. "But just participating would bring a wonderful conclusion to 2025 for both Ann and me when she could join me again in the World's Parade of Athletes."

The Journey Begins: Becoming a "5% Guy"

Early in his diagnosis, Don made a pivotal decision. Although he accepted the possibility of his passing, he vowed to maintain hope, establish goals, and become what he called a "5% guy"—one of the rare few who beat the overwhelming odds.

During that first year, a surprising twist of fate changed the trajectory of his journey. His "zero hope" oncologist unexpectedly went on sabbatical, and a new oncologist entered their lives. The new doctor's approach was transformative.

"Forget the negative predictions and believe in miracles," the new oncologist told them, sharing stories of stage IV cancer patients who had defied all odds. He even offered, if they were comfortable, to pray with and for them—a gesture that deeply moved Don and Ann, strengthening their faith.

"Whenever we've had a clear lung PET scan or brain MRI, our oncologist would let us know we'd had another miracle," Don recalls.

Contrary to the early prognosis, Don's cancer didn't progress as quickly as expected. When tumors eventually metastasized to his right lung that first year, an invasive surgical procedure resulted in his losing the use of two lung lobes. Although his cancer was now Stage 4, they had avoided hospice, and Don had succeeded in becoming a "5% guy."

The Comment That Changed Everything

Early in his journey, Don began extensive online research, visiting numerous medical websites. He signed up to join Smart Patients, an online community for patients and caregivers. It was here that he came across something that would later prove crucial to his survival.

"I read one patient's helpful comment that later helped save my life," Don recalls. Though he can't remember the patient's code name, their message mentioned "a rumor there were a few new medical laboratories doing special cancer DNA testing on tumors" that might someday be useful with advancing cancer treatment technology.

This single comment spurred Don to action. He searched for cancer research labs and found Personalis in Menlo Park, California, near his home. After a phone call to the lab, he learned that he only needed his VA doctor to approve the test and send a biopsy of his tumor to them.

The test was quickly approved, and a report was generated. It lay unused for almost four years—until it became the key to his survival.

Facing Hospice Four Times

Over the years, Don has faced hospice care on four separate occasions, each time finding an unexpected path forward.

During his fourth year post-diagnosis, Don faced what seemed like the end. A PET scan showed two inoperable tumors on his lung that were attached to his trachea and esophagus. There were no FDA-approved drugs available or experimental treatments to try.

Then, as if by divine timing, the FDA approved the immunology drug Keytruda specifically for Don's type of cancer that very month. However, to qualify for the treatment, Don needed a "cancer tumor biopsy DNA biomarker test" to determine if he had the required DNA markers for Keytruda.

Getting a new biopsy was impossible due to the life-threatening tumor locations and the limited time Don had left. This is where the Smart Patients community's impact became clear—Don already had the report from four years earlier, when such testing wasn't common practice.

"Just when Keytruda needed me to have the cancer report and it was not possible to do it, we already had the report!" Don writes.

Even with the report in hand, the odds were still dramatically against Don. To even try the drug, for it to successfully trigger his immune system, and to survive beyond six months—each step carried small probability of success.

Yet once again, Don defied the odds. He had all the right biomarkers; the tumors disappeared shortly after his first couple of Keytruda infusions; his immune system took charge, fighting his cancer without additional drugs for over four years.

The Irony of Survival

 

In a strange twist of fate, soon after Keytruda saved his life, Don became sicker than at any point during his cancer journey. Ongoing bad shakes, vomiting, imbalance issues, and a high temperature led Ann to take him to the emergency room.

After consultation among three Stanford medical teams, his endocrinology team determined he was suffering from a life-threatening Adrenal Crisis—shockingly caused by Keytruda, the very drug that had saved his life. A twice-daily regimen of hydrocortisone pills now keeps him alive and his adrenal insufficiency under control, although imbalance issues requiring daily balance exercises continue.

"Although this is one of Keytruda's worst side effects, we both remain deeply grateful to Merck Labs and their life-saving drug," Don says.

 

Coming Full Circle: A 370,000-to-1 Surprise

Fast forward to June 2024. Don received a surprising call from the head of laboratory research at Personalis. They wanted to know how he had heard about their company, as they didn't market individual testing at that time. When Don shared how their test had saved his life, they invited him and Ann to speak at an employees' meeting.

Don learned that Personalis had performed over 370,000 tumor tests for pharmaceutical companies, yet he would be the first patient the staff would ever meet. About 300 staff members attended his talk—200 in person and 100 via video from labs and remote sites.

"That day was an incredible four-hour experience with the staff laughing and crying during our talk. A lengthy standing ovation with clapping and shouting at the end brought tears to our eyes," Don recalls. "Afterwards staff members were giving us hugs, prayers, handshakes, and wonderful heartfelt comments telling us how much our being there meant to them. It's a memory that will live in our hearts and minds forever."

A Champion's Perspective

Throughout his life, Don has approached challenges with the same determination that made him a gold medal-winning athlete. His background in competitive racquetball taught him discipline, perseverance, and the value of setting ambitious goals.

Don's survival and ongoing blessings, he and Ann believe, can be attributed to a combination of factors: amazing new medical discoveries; first-rate care at Stanford Hospital and the Palo Alto VA Medical Center; prayers from loved ones; maintaining faith; and his own positive attitude, fighting spirit, personal research, and healthy lifestyle.

One of his doctors recently told them they've "dramatically beaten the odds." Their oncologist believes they've had "many miracles" and recently told Don he's an "inspiration to him." Two friends have called it karma for how Don has lived his life. His thirteen years of volunteering at the Palo Alto VA Chaplain's office visiting patients with few visitors, plus raising money for cancer and arthritis research, might support that idea.

His General Practitioner also recently told Ann and Don they were an inspiration to him and wished more of his patients would have such a positive attitude and fighting spirit.

A Message of Hope and Action

Don and Ann's experience has led them to become vocal advocates for proactive cancer testing. They believe everyone with serious cancer should consider getting a cancer tumor biopsy DNA biomarker test.

"So many new drugs are on the horizon that may save your life or even cure your cancer that will require you to have certain DNA biomarkers," Don explains. He reminds others that tumor tests focus on identifying biomarkers within the tumor cells to improve treatment and should not be confused with genetic cancer tests, which analyze inherited DNA to assess an individual's predisposition to cancer. "But both tests can save your life!"

Their story has resonated deeply within the Smart Patients community. Many fellow members have expressed gratitude for Don's willingness to share his journey, with one member noting, "When one is facing a cancer diagnosis for the first time, they need a Don in their life to provide encouragement."

Another member, who identifies herself as a caregiver, wrote: "This place [Smart Patients] has been my comfort, medical journal, suggestion board, leaning post, happy place. Every oncologist for every type of cancer should tell their patients to sign into Smart Patients today."

Ongoing Challenges and Goals

Gratefully Don and Ann continue their blessed journey while also hoping to inspire others to maintain hope. However, they've both been experiencing survivor's syndrome (guilt complex) when hearing so often of family members, neighbors, or friends who have not been as blessed as them. Individual counseling has been helpful and will continue for them both as their medical journey moves forward. When asked, they continue to share their story to emphasize that there is always hope and that cancer miracles do happen.

Just recently Don has been asked by the national non-profit Head Neck Cancer Alliance to become one of their Ambassadors and Stanford has asked him to give a speech on the Power of Hope at their annual all-day 2025 Head & Neck Patient & Caregiver Education Symposium for patients education. Don, preferring behind-the-scenes work to the spotlight, first refused both requests. But after meaningful encouragement from one special friend plus the fact he learned that paying it forward is one of the best ways to combat Survivor Syndrome he's agreed to accept both requests hoping he can be of positive help in some way.

The Power of Connection

Don's acting on a comment in an online community proved that it can literally save a life. It demonstrates that medical miracles do happen—sometimes beginning with a simple conversation among strangers brought together by shared challenges. As one Smart Patients community member eloquently summarized: "We should never underestimate the value of connecting with others. A single comment, a shared experience, or a piece of information could make all the difference."

Coming Full Circle

Many Smart Patient's members reflected on their story and this one really stood out: "I cannot tell you the number of times that some bit of information I picked up from someone along the way turns out to be exactly what someone else needs to hear. Coincidence, luck, karma, or miracle? I know which word I choose for it."


Anyone wishing to reach out to Don and Ann can contact them at: donannj@icloud.com

If you or someone you love are affected by head and neck cancer, please use this link to join the Smart Patients online community.

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