Dec. 2, 2022 — Michael Gustafson was an athlete and state gymnastics champion before being diagnosed with brain cancer at age 10.
Although the diagnosis meant he had to give up gymnastics, Michael continued to play basketball and baseball, cross-country running and, later, golf.
“Even though he could only go four or five holes, his coaches made him a part of the team and he made such an impact with his incredible stamina, perseverance and positive attitude,” said Michael’s father, Allen. Gustafson said. “So, his journey as an athlete continued through his cancer until the end. It was part of who he was.”
But Michael, who died at the age of 15, had more to offer. He is also very kind. “One day he woke up from his nap and called his mum and me into his bedroom. He said, ‘I get it — I know what I’m going to do. I’m going to donate my body to science and they’re going to Use me to find a cure for cancer. He calls it his “master plan.”
Not only did Michael’s commitment lead his parents to eventually create a foundation for pediatric cancer research, it also illustrated a troubling but important problem: Researchers need access to tissue from children who have died of brain cancer.
“He always wanted to be a scientist,” Michael’s father said. “He thought it would be a great way to make the world a better place. He thought science could do that.
“I think that sparked part of his passion for donating. It was something that aligned with the vision he had for his life from a young age,” he said.
“Have you considered tissue donation?”
Vijay Ramaswamy, a pediatric neuro-oncologist at the Hospital for Sick Children in Toronto, said those five simple words could have a profound impact on pediatric brain cancer research and on children with brain cancer and their families.
But he said families whose children died of brain cancer were often unaware that they could consider donating autopsy tissue.
Ramaswamy, along with a group of parent advocates and colleagues, aims to change that.in the most recent peer-reviewed article inside Journal of Clinical Oncologythey provide a reason and a way to inform patients and families about donation options.
“A cultural shift is needed in the pediatric brain tumor community, as has happened with organ donation, with the goal of providing every family, anywhere in the world, with the option to donate,” they wrote.
This article summarizes the many thoughts and stories shared at a conference in 2018 by more than 120 parents who lost their children to brain cancer. That meeting in Philadelphia aimed to identify real and perceived barriers to autopsy tissue donation.
Bottom line: Many patients and families are unaware of the benefits and importance of tissue donation, and many would consider donating if they had known about the option; some expressed dissatisfaction because they were not told if they would decide to donate.
The hospital where Michael was being treated couldn’t offer cadaver donation, so they turned to other parents and his pediatrician for guidance, and they found a way.
But they know it shouldn’t be this difficult.
Just before Michael’s death in 2015, when they realized there was no coordinated nationwide effort to make this type of tissue donation and “bring this precious gift into the labs of researchers,” the Gustafson family formed up swift foundation, a private organization benefiting pediatric cancer research. “Swifty” was Michael’s grandfather’s favorite nickname for someone he liked, and Michael chose it as a “positive and fun” choice for the name of the foundation.
This effort culminated in a collaboration with researchers, healthcare providers, and other families who have lost children to brain cancer and created the child’s gifta postmortem central nervous system tumor collection procedure.
gift from kids is a network of six center of excellence Across the United States, these are regional autopsy sites that coordinate and process tissue donations and generate preclinical models for research.
Donated tissue is deposited in Children’s Brain Tumor Networka national repository for researchers working to improve care and outcomes for children with brain cancer.
“Our mission is to make postmortem tissue collection an option for any family in the United States, no matter where they live or receive care,” Gustafson said.
Being able to fulfill Michael’s wishes and plans and make his plans available to many others has brought comfort to him and his family.
“This is an important step in our own grief journey,” Gustafson said, adding that Michael’s siblings, as well as cousins and friends, were involved in the work. “One of the wonderful things that happened was when we started hearing back … about how Michael’s tissue was used in certain studies and certain publications.”
The goal now, he and Ramaswamy say, is to change the culture in the pediatric brain cancer community and make tissue donation a more widely available option.
“In a journey that takes so much from the family, the family deserves the opportunity to make a thoughtful decision about this potentially life-giving choice,” the authors wrote in the journal article.
“While donation is not for every family, asking families of the deceased to consider posthumous donation should no longer be an exception, as families should have the right to choose for themselves,” they concluded.
A central theme for Parent Advocates is the family and the patient Do Would like to be asked and given the opportunity to donate tissue to aid further cancer research.
“Specifically, there was widespread agreement that processes need to be embedded, asking clinicians to raise the topic and asking all families,” the authors wrote.
Failure to ask, they point out, deprives these families of important opportunities.
The authors acknowledge that health care providers may feel uncomfortable discussing this topic and may experience challenges with logistical, timing, and religious considerations.
“If clinicians don’t ask, they are depriving families…of their tragic loss, further research, support for their children’s legacy, meaning/purpose for adolescent patients, and help with the family’s grief process,” they emphasize.
“It is the clinician’s responsibility to provide these families and their current patients with avenues for further research. This gift can only be made by these families … Therefore, since no autopsies were requested, they decided to allow these families not to donate.”
In fact, choosing to donate can be a meaningful step in the grieving process, they point out, sharing the words of one bereaved mother: “Being able to donate something that can prevent another child from suffering the way our daughter did is great for us. The end of her life is crucial. It is good for our family to know that she is still making a contribution after her death: knowing that after she took her last breath, there was one last thing she could do.”