Pat Mac’s Pack: “We Support Cancer Research so Other Families Don’t Have to Face What We Did”

In 2000 Tom and Dee received news that would change their lives forever. Their 2-year-old son Patrick was diagnosed with a benign brain tumor called an Ependymoma. After a visit to the doctor, the McNamara family later found out that the tumor was located in the fourth ventricle. Tom and Dee took immediate action seeking answers at Lurie Children’s. Patrick received his first surgery at Lurie Children’s (Children’s Memorial at the time) and his parents were thrilled to hear the surgery resulted in a complete resection. Only to find three months later, the tumor returned. By the time Patrick turned 3 years old he already had two surgeries and started chemotherapy.

Six years into his battle, his chance for a cure drastically changed. His parents were devastated to learn a spot developed in a different area of the brain – the third ventricle. Unlike before, this area of the brain is much more difficult to access during surgery. When the tumor was biopsied, it changed grade from benign to malignant. Patrick’s surgeon advised against surgery on this part of the brain because of its deep location and the possible adverse outcomes. By this time, the family spent countless weeks, days, and hours at the hospital. During his 11-year battle against the tumors, Patrick endured more than 15 brain surgeries, multiple rounds of chemotherapy, and various types of radiation treatments. He was the youngest patient to ever receive Gamma Knife radiation. 

Two months later the tumor was back, and Patrick was started on a new chemotherapy, only this time it was a clinical trial. It was at this time that the family learned that none of the drugs available to children in clinical trials were developed specifically for brain tumors, let alone pediatric brain tumors. Instead, it might be a drug designed for adult pancreatic cancer or breast cancer. After countless surgeries and clinical trials, Patrick died in October 2011 at 13 years old, 11 years and 8 months after his first diagnosis. 

“Patrick lost his hair, a portion of his hearing, and occasionally his energy, but never his winning spirit and love for family and friends,” said Patrick’s mom, Dee. “He was a selfless, fun-loving child who never let the diagnosis of a brain tumor burden him or prevent him from living life to the fullest.” 

Tom and Dee decided to embrace their son’s winning spirit and honor him in the most impactful way they knew how. The family turned their long journey filled with ups and downs around and began their quest to raise funds for pediatric brain tumor research and provide financial assistance to young cancer patients and their families.  

From Compassion to Action 

Two years after Patrick’s first diagnosis, his family, friends, classmates, and neighbors would often come together as “Pat Mac’s Pack” to participate in events that raised funds for pediatric brain tumor research and Lurie Children’s. After passing away at the age of 13, Patrick’s family and friends committed to continue to fight in his honor, incorporating Pat Mac’s Pack, Inc. as a 501(c)(3) charitable organization in 2014. 

“We know from our experience with our son Patrick that pediatric cancer research and drug development is vastly underfunded,” said Dee. “Since the inception of Pat Mac’s Pack, we have been on a quest to help fund better treatments for children.” 

Pat Mac’s Pack has raised more than $2.5 million for its dual mission of supporting brain tumor research at Lurie Children’s and providing financial assistance to young cancer patients and families. This includes $1.3 million provided for research and more than 400 families supported.

“We are thrilled to take on a multi-year quest to help move new concepts for pediatric clinical trials for neuro-oncology from trial to treatment,” said Dee. “Our three-year commitment represents the most significant gift Pat Mac’s Pack has ever given and will bring our total giving to the hospital to over $2 million.” 

The Lurie Children’s Brain Tumor Program offers a robust early-phase clinical trials program to give our young patients and their families the best chance at overcoming their disease. Unfortunately, due to a lack of funding, promising studies often can’t get the traction they need to reach the patient care setting. With the support from Pat Mac’s Pack, our team of investigators can advance unexplored research ideas, pilot investigator-initiated clinical trials, and take the next step on pediatric brain tumor studies that are on the horizon. The non-profit's generous commitment of $250,000 per year, for three years, is vital to our efforts to advance pediatric brain tumor research. 

“Pediatric brain tumor research is seriously underfunded. We are passionate about supporting this research so other families don’t have to face what we did,” said Dee. 

If you are interested in making a meaningful impact like the McNamara family, visit our website (link: https://events.luriechildrens.org/community-fundraising) to learn how you can start your own fundraiser.