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Mason Chandler Allen
SOURCE

​A Young Football Player’s Legacy Helps Science Tackle Osteosarcoma ​

ALL FAMILY PHOTO CREDIT: Allen Family
Smart and athletic. Kind and creative. Mason Allen was a kid everyone adored. Five years after his passing, Mason’s legacy was a catalyst for Dr. John Doski’s research into game-changing knowledge in diagnosing, treating and operating on pediatric osteosarcoma patients – the same cancer Mason had.​

At 13 years old, Mason Allen was agile and fun-loving on the football field but focused in the classroom. He loved being surrounded by friends but wasn’t a fan of the spotlight. Mason was Matthew’s little brother and the son of Kamala and Martin Allen. But since he passed away in 2017, Mason has earned himself a position in the spotlight with a movement that holds his name –      The Mason Chandler Allen Memorial Foundation.​
“When Mason was born, I told everyone he made our family complete. Pretty early on, it was obvious he was going to be a kid who was constantly in motion,” Mason’s mom Kamala says.  “If he wasn’t playing football, he was watching it or talking about it.”
​

Now, within the field of pediatric cancer, Mason is carrying a new team toward a heroic win: to improve surgical outcomes for kids with metastasized osteosarcoma, a rare bone tumor and the same type of cancer he had. For the last six years, fundraising in Mason’s honor has provided critical funding to the Children’s Oncology Group (COG) Foundation for one very important study.
 
If Mason is the inspiration for an all-star lineup of osteosarcoma researchers, John Doski, M.D., division chief, of pediatric surgery, UT San Antonio Health is the team captain.

​Dr. Doski believes that patients deserve better

 
Years before Mason’s diagnosis, and more than 1,700 miles away from where he grew up, Dr. Doski had a problem. There were two surgeries to choose from for kids whose osteosarcoma had spread to their lungs – and no data to direct him on how to choose the best one for each patient.
 
For the first one, open thoracic surgery is more invasive, and involves opening the chest with a large incision between the ribs. For the other, thoracoscopic surgery, the surgeon makes small incisions around the chest and uses a camera to help guide the removal of the tumors.
 
“As a surgeon, I like a clear plan. Especially when it comes to discussing with a parent how and why I’m going to operate on their child, to remove aggressive tumors from their lungs,” Dr. Doski says. “Depending on which of my peers I talked to, I could get a case for either procedure.” 

​His lack of an answer started bothering him so much that in 2008, Dr. Doski arrived at the annual COG Meeting, ready to raise the question to the largest gathering of pediatric oncology specialists in the world.
 
“That’s when I started buzzing around in people’s ears. I was like a gnat who wouldn’t go away,” Dr. Doski laughs.​
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Brothers Mason and Matthew Allen
But a few doctors did listen to Dr. Doski’s case. And agreed that there was a need to clarify a surgical protocol for metastatic osteosarcoma in the lungs. Why the lungs? If osteosarcoma spreads, it spreads to the lungs about 75% of the time.
 
So for the next couple of years, Dr. Doski doubled down on his buzzing. Around that same time, funding from the Mason Chandler Allen Foundation arrived to help get the research off the ground. 
“Mason’s foundation gave us the financial support to survey surgeons, asking strategic questions about their approach and whether clarifying the protocol was important to them. The response was an overwhelming yes,” Dr. Doski says. “That validation gave us momentum to keep going.”
 
The Allen family felt an instant connection to Dr. Doski’s research. That’s because this study closely reflected their own experience.

“Mason’s cancer started in his leg and later spread to his lungs. We were one of those families trying to navigate which surgery to choose. The burden of this decision weighed on us. Supporting a trial that would give physicians and families more clarity is exactly what our foundation is focused on,” Kamala says.
 
Over the next couple of years, Dr. Doski’s buzzing worked. When the study was determined to justify a randomized controlled trial, Dr. Doski had enough people on the team to fill an offensive line against the osteosarcoma defense.
​​​
 A new playbook to understand osteosarcoma
More than a decade after arriving at the COG Meeting and finally launching the Phase III randomized controlled trial, Dr. Doski often thinks about the little boy whose legacy is playing a defining role in the outcomes of this research.
 
“I’ve only had the chance to write Mason’s family letters of thanks, but one day it would be wonderful to meet them and share my gratitude for believing this study was worth pursuing,” Dr. Doski says.
 
In 2022, the trial to compare open vs thoracoscopic management of pulmonary metastases in patients with osteosarcoma launched with five primary goals.
  1. Inform optimal surgical care
  2. Centralize the radiological review of metastatic lung tumors
  3. Increase biobank samples of pulmonary metastatic osteosarcoma tissue
  4. Obtain Blood samples to identify patients with metastases
  5. Understand patients’ quality of life
 
The goal isn't to figure out which surgery is better. It’s to learn how to know which surgery is best for which patient. Surgeons need more information to do this, and this information could only be obtained through a randomized controlled trial.  

In creating the study, confirming patient enrollment with review of the CT scan was critical to protect the children.  “Adding and involving the Radiology team was essential. COG includes many expert radiologists who analyze images of this cancer more frequently. They know what to look for and help us surgeons prepare for our operation,” Dr. Doski says. “Teamwork is one of the great strengths of COG, it’s why this network exists, to help each other. It doesn’t matter where a patient is diagnosed, we’re in it for every child.”
 
As soon as the patient’s home hospital uploads images, Abhay Srinivasan, M.D., and Helen Nadel, M.D., who lead the radiological portion of the study, gather with other radiologists to analyze the scans.
 
The trial also presents a rare opportunity to collect blood and tissue samples from patients with metastatic osteosarcoma, which the Children’s Oncology Group’s biorepository has little of.

“For the first time, researchers studying the biology of this cancer will have access to a large set of tissue samples. This is a huge piece of the puzzle that’s been missing, without them it’s very hard to develop new treatments for the disease. The same is true for blood samples – many doors will be open by ​
A winning playbook for osteosarcoma patients

In launching the trial to compare surgical options for patients with metastasized osteosarcoma, COG researchers hope to gain new knowledge about cancer in five key areas that will improve treatment approaches at every level.


  • Inform optimal surgical care – Both open and minimally invasive thoracic procedures are used in patients with osteosarcoma that has metastasized to the lungs. However, the decision to pursue either operation is often determined by patient characteristics as well as a surgical team’s experience. This trial hopes to help providers make a more accurate surgical plan that will result in the best outcome for the patient.​
​
  • Central radiological review of metastatic lung tumors – Technology advances now allow physicians to see tumors that are much smaller than were previously identifiable. The trial’s radiology experts will review every patient’s scan and collect data to compare to tumor biopsies and help researchers gain a better picture of the cancer. 
​
  • Increase biobank samples of pulmonary metastatic osteosarcoma tissue – Tumor tissue collection will offer researchers new opportunities to study osteosarcoma that has spread to the lungs and learn how it’s different from the initial tumor.
​
  • Blood samples to identify patients with metastases – By collecting blood samples from trial participants, COG scientists hope to pinpoint variations in the blood that will help them detect metastasized cancer earlier.
​
  • Understand patients’ quality of life – Beyond the surgical and biological data, this trial will gain critical information on how patients cope with each operation,  and allow us to compare the physical and emotional impact of either operation.  
studying biomarkers in the blood and detect even smaller levels of disease,” Katherine Janeway, M.D., a pediatric oncologist at Boston Children’s and chair of the COG Bone Tumor Committee.​
​
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The Mason Chandler Allen Memorial Foundation (MCAMF) was founded to advance the fight against osteosarcoma, the most common bone cancer affecting children and adolescents. 

Learn more here.​
The two thoracic surgeries have very different impacts on patients, with the open procedure being viewed as more painful.  Learning more about how osteosarcoma treatment and recovery affect a patient's quality of life is another key part of the study.  Patient-reported outcomes data on quality of life will be collected and analyzed, with this effort led by Katie Greenzang, M.D. and Susan Parsons, M.D.

​“Osteosarcoma is painful. Many kids have surgery to remove the cancer and then more procedures to help regain use of the arm or leg where their cancer started. Some have limb amputations. Their lives can be dramatically changed and we need to learn more about what patients go through,” Dr. Janeway says.
 
Now more than a year after the study opened, about 20 patients have participated – but they are hoping for many more. The team has become so close that at the 2022 Children’s Oncology Group Meeting, Ryan Roberts, M.D., who leads the biology and tissue portions of the study, created and passed around temporary tattoos with the slogan “Do it for Doski”.
 
With his newfound fame, also comes humility.
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Researchers sport temporary tattoos encouraging sample collection for the study.
 PHOTO CREDIT: Dr. Doski
“We’re running toward some huge breakthroughs, unlocking knowledge that will save lives,” Dr. Doski says. “It’s profoundly gratifying to be part of such a comprehensive trial. But I’m just the person who asked the first question.”
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Martin, Matthew, Kamala and Mason Allen.

​​​Make it happen for Mason
​

In building the foundation that carries their son and brother’s name, Kamala, Martin and Matthew approach giving strategically. Established one month after Mason’s passing, the foundation’s annual fundraiser has raised $150,000 over the last seven years. Kamala also sits on the COG’s Patient Advisory Committee. Matthew has joined the Junior Advisory Board for Make It Better Agents, an organization dedicated to supporting osteosarcoma research. They also provide scholarships to former osteosarcoma patients pursuing careers in healthcare.
 
“This is still really painful. You don't want anybody to forget about your kid – a wonderful, special, beautiful person whose life was cut short,” she says. “We keep going because Mason was a person who wanted everyone to feel included. 

If someone was left out, he’d be the first to notice and pull them in without hesitation. Now, we look out for other kids for him.”


Mason’s cancer was discovered because of a hit he took at football practice. At first, Mason’s parents weren’t too worried – getting tackled comes with the territory in football. When they took him to an orthopedic doctor they expected crutches and instructions for Mason to cheer his team on from the sidelines. Instead, they got a referral.
 
“The doctor made an appointment for us to go to ”a specialist” who could better determine what was going on and why Mason still had pain in his leg two weeks later. Then as the nurse handed me a disc with the X-ray images, she gently rubbed my back,” Kamala says. “When I looked at the referral to see who we were being sent to see, I realized why the doctor made the appointment himself, and why the nurse was being so caring. They were sending Mason to an oncologist. All the breath went out of my lungs.”

​​Suddenly, Mason’s life moved from the football field to the cancer floor at St. Christopher’s Hospital for Children in Philadelphia.

Sitting in that little room getting the diagnosis – your life changes,” Kamala says. “You never think that your child is going to die from it. You think, people have treated this before. Medicine is amazing. Then as you get into the journey, you realize, especially with a rare cancer like osteosarcoma, this is ‘fight for your life’ territory.”
 
His doctors quickly started him on the grueling treatment plan every osteosarcoma family knows. First, months of chemotherapy. Followed by surgery to remove the tumor. Then more chemotherapy to knock out whatever cells were remaining.
 
Through it all, the family watched Mason find things to laugh about and maintain his inherent optimism. A couple of months after completing his treatment plan, Mason was declared cancer-free.
 
“We celebrated with a No More Chemo Party. Every one of his friends came to welcome him back to life without cancer. It was the perfect day and the perfect celebration for him,” she says.
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Mason Chandler Allen

But a couple of months later, Mason’s cancer returned. His family opted for the less invasive thoracoscopic surgery, but ultimately Mason's cancer could not be cured. His family said goodbye on March 11, 2017. 

 
Looking back on Mason’s life and his cancer experience, the family finds hope in the connections between the research and the community building their foundation supports.
 
Like Mason, Dr. Doski’s study has pulled everyone in from the sidelines. This study depends on teamwork. Dr. Doski isn’t a fan of the spotlight and neither was Mason, but Dr. Doski can handle it as long as Mason is up there with him.
 
“We should change the slogan of this study to ‘Make it Happen for Mason’,” Dr. Doski says. “This study is for the patients. They motivate us every day. To have the legacy of a child connected to this study makes it even more special and important.”
​

The AOST2031 Trial team line-up

Honorary Captain                                                                                             Mason Allen
Inform optimal surgical care                                                                            
John Doski, MD, Tim Lautz, MD & Patrick Leavey, MD
Centralize the radiological review of metastatic lung tumors                      Helen Nadel, MD and Abhay Srinivasan MD
Increase biobank samples of pulmonary metastatic osteosarcoma tissue  
 Ryan Roberts, MD, Brian Crompton MD, and                                                                                                                                               Jonathan Bush, MD
Blood sample to identify patients with metastases                                        David Weiser, MD
Understand patients’ quality of life                                                                  Katie Greenzang, MD and Susan Parsons, MD
 
Offensive coaches

COG Bone Tumor Committee leadership     
Richard Gorlick, MD and Katie Janeway, MD
Game plan advisors                                        Mike LaQuaglia, MD and Susan Blaney, MD
Research and strategy                                    Mark Krailo, PhD Children’s Oncology Group Administration and Leadership
Give to Improve the Outcome for All Children with Cancer

read more from this newsletter edition: ISSUE 2, Spring 2024

  • Jade Gibson's Hope for a Future with More Equitable Care
  • One Scientist's Mission to Improve Outcomes for Kids from Low-Income Families
  • A Q&A with Dr. Maria Valez: Chair of the COG Diversity and Health Disparities Committee
  • ​ALL ARTICLES
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