The importance of tissue donation begins when a parent hears the life shattering news, “your child has brain cancer.” Had we known how important tissue is not only to scientific discovery, but also to a child’s cancer treatment plan, Michael may have had a very different journey. Let me explain.
Cancer treatment is becoming more personalized, meaning it is no longer a one-size- fits-all approach. The ability to efficiently sequence a patient’s cancer genome enables doctors to map the mutations at the root of the patient’s tumor, experiment with treatment options and monitor the response to those treatments. When Michael’s medulloblastoma returned and his odds of surviving were 5 percent, we knew genomic sequencing of his tumor could help doctors identify treatments that might extend his life.
We needed the tumor tissue that had been removed during his brain surgery days after his initial diagnosis. It took some doing to locate it and when we did, we discovered it had not been preserved in a way that genomic sequencing could be done and therefore it was no longer useful for Michael’s treatment. Needless to say, we were heartbroken.
We don’t want other families to feel the guilt and sorrow we endured after realizing we had dropped a ball we didn’t even know we needed to juggle! This is why Swifty Foundation is partnering with Lurie Children’s Hospital of Chicago, investing $300,000 over the next two years, to create the new pediatric staff position of Tissue Navigator.
The Tissue Navigator will educate families on how to be good stewards of their child’s tissue, a precious resource for their child’s treatment. The Tissue Navigator will companion families from diagnosis through treatment and, heaven forbid, the child’s death.
That’s not all. The Tissue Navigator will educate oncologists, hospice workers and others about the need for post-mortem tissue donation, as well as how to approach families about donating. The Navigator will also serve as a regional coordinator for tissue donations in the surrounding area, helping to facilitate donations from
smaller non-research hospitals.
Once the value of the Tissue Navigator for patient care and advancing research has been established, the goal is for this position to become institutionalized at Lurie Children’s with the hospital financing its cost. This position will then be expanded to other hospitals in the Children’s Brain Tumor Tissue Consortium to have the position of regional Tissue Navigators spread throughout the country.
From personal experience, we know how valuable this resource will be to families, the medical team and researchers. This year’s Swifty Foundation Annual Appeal is asking for your help to fund this important, life-giving position for its pilot year.
Together Toward Hope!
Patti Gustafson
Please note that 100 percent of every dollar you give goes directly to pediatric cancer research.
