Dec. 2, 2022 – Michael Gustafson was athletic, a state gymnastics champ before being diagnosed with brain cancer when he was 10.
While the diagnosis meant he had to give up gymnastics, Michael went on to play basketball and baseball, run cross-country, and, later, play golf.
"Even when he could only walk four or five holes, his coach still let him be part of the team, and he made such an impact just by his incredible stamina and perseverance and positive attitude," says Allen Gustafson, Michael’s father. "So, his journey as an athlete continued throughout his cancer right to the very end. It was so much a part of him."
But there was also more to Michael, who died when he was 15. He was also kind. "One day he woke up from a nap, and he called his mom and me into his bedroom. He said, 'I've got 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 called it his 'master plan.' "
That promise from Michael not only led his parents to ultimately create a pediatric cancer research foundation, it also illustrates an uncomfortable but important issue: The need for researchers to access tissue from children who die of brain cancer.
"He always wanted to be a scientist," Michael's dad says. "He thought that would be a great way to make the world a better place. He thought science could do that.
"I think that fueled part of his enthusiasm to donate his body. It was the one thing that kind of aligned with his vision of his life from when he was just a young boy," he says.
"Have you considered tissue donation?"
These five simple words could have a profound impact on pediatric brain cancer research – and on children with brain cancer and their families, according to pediatric neuro-oncologist Vijay Ramaswamy, MD, PhD, at The Hospital for Sick Children in Toronto.
But families who have lost a child to brain cancer often aren't made aware of the option to consider postmortem tissue donation, he says.
Ramaswamy, along with a group of parent advocates and colleagues, aims to change that. In a recent peer-reviewed article in the Journal of Clinical Oncology, they provide a reason and a way to tell patients and families about the option to donate.
"A cultural shift is needed within the pediatric brain tumor community, much like the one that occurred for organ donation, with the goal to offer every family, anywhere in the world, the option to donate," they wrote.
The article summarizes many of the thoughts and stories that were shared at a conference in 2018 by more than 120 parents who had lost a child to brain cancer. That meeting in Philadelphia had set out to identify real and perceived barriers to postmortem tissue donation.
The bottom line: Many patients and families were unaware of the benefits and importance of tissue donation, and many would have considered donation had they known about the option; some expressed resentment that they had not been informed, whether they would have decided to donate or not.
The hospitals where Michael received care couldn't help with postmortem donation, so they turned to other parents and also to his pediatrician for guidance, and eventually found a way.
But they knew it shouldn't be so difficult.
Just before Michael's death in 2015, when they realized there was no national, coordinated effort to do such tissue donation and "get this precious gift into researchers' labs," the Gustafson family formed the Swifty Foundation, a private organization to benefit pediatric cancer research. "Swifty" was a favorite nickname that Michael's grandfather gave those he liked, and Michael chose it as a "positive and fun" choice for the name of the foundation.
The endeavor eventually led to collaboration with researchers, health care providers, and other families who had lost a child to brain cancer, and resulted in the creation of Gift from a Child, a postmortem central nervous system tumor collection program.
Gift from a Child is a network of six Centers of Excellence across the United States that are regional autopsy sites for coordinating and processing tissue donations and generating preclinical models for research.
Tissue donations are stored at Children's Brain Tumor Network, a repository for researchers across the country who are working to improve treatment and outcomes for children with brain cancer.
"Our mission is to make postmortem tissue collections an option for any family in the U.S., no matter where they live or where they are treated," Gustafson says.
The ability to fulfill Michael's wish and plan, and to make his plan available to so many others, brought solace to him and to his family.
"It was quite a step in our own journey of grief," Gustafson says, adding that Michael's brother and sister, along with cousins and friends, have been a part of the effort. "One of the wonderful things that occurred was when we started hearing back … about how Michael's tissue was being used for certain studies and in certain publications."
Now the goal is to change the culture in the pediatric brain cancer community so that tissue donation becomes a more widely offered option, he and Ramaswamy say.
"In a journey where so much has been taken from families, families deserve the opportunity to make a thoughtful decision about this potentially life-giving choice," the authors wrote in the journal article.
"Although donation will not be right for every family, asking families to consider postmortem donation should no longer be the exception because families deserve the right to choose for themselves," they concluded.
A central theme among parent advocates is that families and patients do want to be asked and given the opportunity to donate tissue to help further cancer research.
"Specifically, there was broad consensus that processes need to be embedded that require clinicians to broach the topic and ask all families," the authors wrote.
A failure to ask robs these families of an important opportunity, they pointed out.
Health care providers may feel uncomfortable broaching the subject, and there may be challenges with logistics, timing, and religious considerations, the authors acknowledged.
"If clinicians do not ask, they are depriving families of … something good coming from their tragic loss, furthering research, a legacy for their child, meaning/purpose for an adolescent patient, and help in a family's grieving process," they emphasized.
"Clinicians have a responsibility to these families and to their current patients to provide this avenue for furthering research. This gift can only be given by these families … therefore, by failing to ask for postmortem, they are deciding for the family not to donate."
In fact, choosing donation can be a meaningful step in the grieving process, they noted, sharing the words of a bereaved mother: "Being able to donate something that may prevent another child from suffering how our daughter did was crucial to our closure. It was beneficial to our family to know she was contributing even after death: to know there was one last thing she could do after she'd taken her last breath."