Remembering Mom: A Conversation With JEDI Board Member David Lord

It’s important to honor both sides of the cancer struggle: the scientific research and the emotional turmoil losing a loved one takes on us.

Growing up, David Lord and Jed Taxel were like brothers, lifelong friends whose mothers Linda and Ellen were also close friends. A few years before Jed passed, David lost his mother to rare cancer. In honor of Mother’s Day, David shares his story of losing a loved one to cancer, as well as his hope of how the tides are changing for individuals suffering from rare cancer.

“I always told my wife the hardest thing was that you lose the person that you could never do wrong. My mom always had my back.”

David Lord

Losing the Person Who You Could Never Disappoint

“My mom and I were best friends. I would call her every day on my way home from work,” David reminisces, remembering just how special his relationship with his mother was. When his mother Ellen was diagnosed with Extrapulmonary Small Cell Carcinoma of Unknown Origin, a type of rare cancer, doctors didn’t have answers for their family. “There wasn’t a lot of research into the type of cancer she had, which was non-primary,” David recalls. “They couldn’t tell us much.”

Although his mom was in her sixties when she passed, he admits it was still incredibly difficult.

A Spark of Joy in an Old VHS

For a long time, David listened to his mother’s voicemail to remember her every holiday and sometimes, even on his drive home from work. Devastated when the voicemails were deleted in an Apple update, David was just elated when his friend found an old VHS recording. “I’d just had my 20th wedding anniversary, and it turns out my buddy had videotaped the night before our wedding in Little Italy — my wife-to-be, me, and my whole family were there — he’d recorded the whole thing!”

While it can be heartbreaking to look through old videos of the person you’ve lost, David finds that choosing to do so on a holiday or special Remembrance Day provides a tradition to remember them surrounded by other loved ones who can support you.

Diagnosing the Unknown: Driving the Change for Rare Cancer Patients

When doctors are unable to find the origin of a rare cancer, it can be incredibly difficult to treat and emotionally taxing for the patient and the family. The only treatment available to David’s mother Ellen would have taken six months and there was only a one percent survival rate. She wouldn’t have been able to see her family because she would have been immunocompromised.

During this time, Mark and Linda Taxel reached out to lend whatever support they could to Jed’s lifelong friend David and his family. Little did they know that not too many years later, they would lose Jed to rare cancer in similar circumstances; when Jed had his rare cancer, the doctors did not know where it originated, and treatment options were minimal. Read Linda’s storyThe Challenges of Mother’s Day: Holding onto Love and Loss in Your Heart.

The Struggle for Funding: It All Comes Down to Money

After Jed passed away in 2017 of a rare cancer, Mark sought to figure out why rare cancer was treated differently from more common ones. He discovered that it comes down to money–approximately 25% of all cancers are considered rare, yet rare cancer tends to get less funding than other types. Founded in 2021 as a living memorial to Jed, the mission and sole commitment of the Jed Ian Taxel Foundation for Rare Cancer Research is to bring funding for innovative research resulting in lifesaving treatments for people with rare cancer.

A JEDI Success Story: Connecting Patients with Care

When the father of one of David’s friends was diagnosed with rare cancer, David connected his friend to one of the JEDI board members, who immediately understood the urgency and helped find the best doctors to help them.

“One of our board members was super helpful. My friend sent everything over, and his father stayed local for his treatments, but the treatment plan was reviewed,” David explains. “Thankfully, now he is in remission!”

“As a JEDI board member, I feel a lot of pride in the foundation’s success at bringing rare cancer experts together in a first-of-its-kind conference to explore better answers, better service, and better quality care for rare cancer patients.”

David Lord

A Special Mother’s Day Fundraiser: Together, We Will END Rare Cancer

Together, we can fund vital research that improves outcomes for people with rare cancer. This Mother’s Day, we invite you to donate in honor of someone you love. For every $20 donation received by Tuesday, May 7, we’ll send a Mother’s Day card to your mom, daughter, grandmother, or anyone you designate acknowledging your donation as a Mother’s Day gift in their honor. Thank you!

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