Tumour donation a silver lining after losing a child to cancer

Donating a child’s brain tumour has been found to help more than science, with Australian-first research discovering a positive emotional and therapeutic impact on parents following the devastating loss of a child from brain cancer. New research undertaken by Kids Cancer Centre, Sydney Children’s Hospital, Randwick (SCH) and University of New South Wales (UNSW) in association with Children’s Cancer Institute (CCI), has been released in the Journal of Neuro-Oncology Advances.

Brain cancer is one of the most common forms of childhood cancer and despite ongoing research, remains the deadliest. This study focused on the children with the most aggressive and incurable brain cancers, for which the need to identify new and more effective treatments is critical. Study co-lead Dr Eden Robertson, Postdoctoral Research Fellow and Fulbright Scholar at UNSW, and team surveyed parents six months after the death of their child, finding that all parents expressed an altruistic reason for deciding to donate their child’s tumor.

The overwhelming feedback was that parents wanted to help future children diagnosed with cancer and their families. By donating their child’s tumour to research, they found solace in knowing that their child would bring scientists another step closer to one day find a cure,” says Dr Robertson.

Associate Professor David Ziegler, Oncologist at SCH, started this national study in 2011, allowing parents to donate their child’s tumour for research after they had passed away. This was the first program of its kind in Australia and it has helped to set up the first research program for these brain tumours in Australia, facilitating new discoveries and advancing treatments in the battle against children’s brain cancer.

Remarkably, our research shows that tumour donation can be a silver lining for parents in an otherwise devastating situation. Having the conversation at end of life is never easy, however knowing that families appreciate the opportunity to support research will hopefully encourage more conversations. Tumour donations have made it possible to establish Australia’s first research program into the most aggressive childhood brain cancers, leading to new treatments and clinical trials,” says A/Prof Ziegler.

Kathryn Wakelin was faced with the decision to donate when her son Levi, just eight years old, died from Diffuse Intrinsic Pontine Glioma (DIPG). With all that Katherine, Levi and their family faced during the 372 day fight, she, like all respondents, does not regret the decision to donate.

Levi was able to take part in two clinical trials, but treatment options are limited and couldn’t save his life. So, I didn’t think twice. Our hope is that Levi can save the life of another child. Hearing about break-through research and new treatment options gives us hope, and small comfort, that Levi’s life has contributed to something so important,” says Mrs Wakelin.

The majority of respondents stated that they would ‘do it all again’. Parents were grateful that they were given the opportunity to make the donation and were keen to make sure all necessary resources were available for parents to help ensure a smooth process.

“As children’s cancer specialists we hope to offer treatment options for all children with brain cancer, or better still, prevent it altogether. Donated tumour tissues provide us with an incredibly valuable opportunity to test new, cutting edge and novel therapies. We are getting closer to finding answers to this devastating disease every day,” adds A/Prof Ziegler, SCH.

This research has been made possible thanks to National Health and Medical Research Council, Cancer Institute NSW, the DIPG Collaborative, the Cure Starts Now, Tour de Cure Foundation, Cure Brain Cancer Foundation, Levi’s Project, Benny Wills Brain Tumour Research fund, Dainere’s Rainbow, and the Kids with Cancer Foundation.