“Something good” after a tragic loss: donation of brain tumor tissue
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December 2, 2022 – Michael Gustafson was an athlete, a state gymnastics champion before being diagnosed with brain cancer at the age of 10.
While the diagnosis meant he had to give up gymnastics, Michael continued to play basketball, baseball, cross-country running and later golf.
“Even when he could only run four or five holes, his coach let him be part of the team and he made such an impact with just his incredible endurance and tenacity and positive attitude,” says Allen Gustafson, Michael’s father. “So his journey as an athlete continued to the end during his cancer. It was so much a part of him.”
But Michael, who died at the age of 15, had more to offer. He was friendly too. “One day he woke up from a nap and called his mother and me into his bedroom. He said, ‘I’ve got it – I know what I’m going to do. I will donate my body to science and they will use me to find a cure for cancer.’ He called it his “master plan”. “
Not only did Michael’s promise prompt his parents to start a foundation for childhood cancer research, it also highlights an uncomfortable but important issue: the need for researchers to access tissue from children dying of brain cancer.
“He always wanted to be a scientist,” says Michael’s father. “He thought this would be a great way to make the world a better place. He thought science could do that.
“I think that fueled some of his excitement about donating his body. It was the only thing that resonated with his vision of life when he was a little boy,” he says.
The question
“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 are often not made aware of the possibility of considering postmortem tissue donation, he says.
Ramaswamy, together with a group of parent representatives and colleagues, wants to change that. In a recent peer-reviewed articles in which Journal of Clinical Oncologythey provide a reason and a way to inform patients and families about the opportunity to donate.
“A cultural shift is needed within the pediatric brain cancer community, similar to that of organ donation, with the goal of empowering every family, anywhere, to donate,” they wrote.
The article summarizes many of the thoughts and stories shared at a 2018 conference by more than 120 parents who had lost a child to brain cancer. The aim of this meeting in Philadelphia was to identify actual and perceived obstacles to post-mortem tissue donation.
Conclusion: Many patients and families were unaware of the benefits and importance of tissue donation, and many would have considered donation had they known of the possibility; Some expressed their displeasure that they had not been informed whether or not they had decided to donate.
The hospitals where Michael was treated couldn’t help with the postmortem donation, so they turned to other parents and his pediatrician for advice and finally found a way.
But they knew it shouldn’t be that difficult.
Shortly before Michael’s death in 2015, realizing that there was no national, coordinated effort to make such a tissue donation and “bring this precious gift to the researchers’ labs,” the Gustafson family founded the Fast foundation, a private organization benefiting pediatric cancer research. “Swifty” was a popular nickname Michael’s grandfather gave to those he liked, and Michael chose it as a “positive and fun” choice for the foundation’s name.
The endeavor eventually led to collaborations with researchers, healthcare providers and other families who had lost a child to brain cancer and led to the creation of gift from a childa program for postmortem collection of tumors of the central nervous system.
Gift from a Child is a network of six centers of excellence in the United States, which are regional autopsy centers to coordinate and process tissue donations and create preclinical models for research.
Tissue donations are stored at Child Brain Cancer Networkan archive for researchers across the country working to improve treatment and outcomes for children with brain cancer.
“Our mission is to make postmortem tissue harvesting an option for every family in the United States, regardless of where they live or where they are treated,” says Gustafson.
The ability to fulfill Michael’s desire and plan and to share his plan with so many others brought comfort to him and his family.
“It was quite a step in our own journey of grief,” says Gustafson, adding that Michael’s brother and sister, along with cousins and friends, were part of the effort. “One of the wonderful things that happened was when we started hearing 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.
“On a journey where so much has been taken from families, families deserve an opportunity to make a thoughtful decision about this potentially life-giving decision,” 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, as families deserve the right to choose for themselves,” they concluded.
A key theme among parent representatives is that families and patients do be asked and would like the opportunity to donate tissue to advance cancer research.
“In particular, there was broad consensus that processes need to be embedded that require clinicians to address the issue and interview all families,” the authors write.
A failure to ask deprives these families of an important opportunity, they stressed.
Healthcare providers may feel uncomfortable raising the issue, and there may be challenges related to logistics, timing, and religious considerations, the authors acknowledged.
“When clinicians don’t ask, they are depriving families… of some good that comes from their tragic loss, furthering research, a legacy for their child, a purpose for an adolescent patient, and aiding in a family’s grieving process,” they emphasized.
“Clinicians have a responsibility to these families and their current patients to create this pathway to advance research. This gift can only be given by these families… so they choose not to have the family donate unless they ask for an autopsy. “
Indeed, choosing a donation can be a meaningful step in the grieving process, they noted, sharing the words of a grieving mother: “Being able to donate something that could prevent another child from suffering as our daughter did was crucial to our closure. It was beneficial to our family to know that she still contributed after she died: to know that there was one last thing she could do after she took her last breath.”
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