Q&A with a Tissue Navigator: Empowering Families to Support the Search for a Cure

September 22, 2020

September is Childhood Cancer Awareness Month. Lurie Children’s is committed to improving child health, transforming pediatric medicine and ensuring healthier futures through the relentless pursuit of knowledge. Research is key to our mission as we aim to advance our understanding of pediatric cancer.

Tissue donation helps researchers identify ways to improve quality of life for children living with cancer and work towards a cure. At Lurie Children’s, Melissa Williams serves as a tissue navigator whose role is funded by the Swifty Foundation through their Gift from a Child initiative.

Here, Melissa discusses her work as a tissue navigator at Lurie Children’s and her commitment to helping children with cancer and to supporting the search for a cure.

 

Q: Tell us about your professional background prior to joining Lurie Children’s. How did your work prepare you for this role as a tissue navigator?

A: I have spent more than 40 years as a funeral director and embalmer. My parents owned a funeral home and both of my parents taught at the two mortuary schools here. When I was finishing my degree and working at University of Illinois Medical Center, I found that there are so many issues that overlapped with funeral service. It seemed as though there was more that I could do to help the living.

I went to work for Gift of Hope Organ & Tissue Donor Network initially as their Funeral and Forensic Liaison to help address concerns with funeral directors, ME/coroners, and law enforcement. I transitioned to a Designated Requester and was going out to have in person conversations with families about organ donations in our local hospitals. It was a very different experience obviously from my work at the funeral home, but it also confirmed my belief more could be done to help the living before they needed the services of a funeral home. 

I left that position and worked at other research related positions and when the Tissue Navigator job came up almost two years ago, I thought it was perfect. Helping to bring an end to pediatric cancers through research-based autopsies was very appealing.  It’s been a great job and I’ve learned so much in the last years.

 

Q: How has the Swifty Foundation empowered you to do this important work?

A: In working with Gift from a Child, a national initiative to increase post-mortem pediatric brain tissue donations through advocacy and education of families, I’ve been familiar with talking with families where death is imminent and asking them about donation. Even with organ donation, you have to help educate people about the need and how what they are doing helps save lives, even if it doesn’t save the life of the person whose family you are working with. 

The Swifty Foundation supports me with encouragement to educate medical professionals and work with them to openly discuss the research autopsy with families. Discussing death and autopsy is a very difficult conversation. Some families know they want to donate but haven’t been able to find the right resource or have been given incorrect information. Ideally, we would want every family where there is end-of-life planning for a child with cancer or any other disease for that matter, to be to informed about the availability of donating tissue and have the opportunity to learn how they can do that. Not every family is going to want to donate, but I would never want a family to find out after the death and final services that they could have donated and have regrets about not being able to do that.

 

Q: It could take several years for an individual researcher or institution to procure a sufficient amount of tissue samples. How does your work enable collaboration within pediatric brain tumor research? 

A: In many instances when a biopsy of a tumor is done, there is not sufficient tissue left after all the diagnostic tests are completed for basic research. Some tumors can’t be biopsied because of their location and the danger it could pose to the patient. At autopsy, we have significant amounts of tumor available. In some situations where we have been able to collect research tissue before death, we can now also collect metastatic tumor tissue for the research physicians to look at. 

All research-based autopsies are done by a pathologist. I have tremendous support from our pathology department with Drs. Perlman, Arva and Wadhwani. We have a great working relationship and they do everything that they can to help us make these research autopsies possible. The autopsy itself is done with respect and dignity for the patient and their family.

Dr. Angela Waanders who leads our Precision Medicine Oncology team is very supportive. She understands both the clinical and research sides. She’s a tremendous resource and very generous with sharing her knowledge and experience.

 

Q: Since joining Lurie Children’s, what changes have resulted from your efforts to build awareness for this area of need?

A: Having worked with our local teams here and JourneyCare, who provides hospice care, I feel like we have a great relationship with everyone. We work together to make this process work when a child dies at home and needs to come to the hospital for the autopsy. We have also been able to offer families out of the Chicago area the ability to donate tissue for research. 

We have a great working relationship with Children’s of Minnesota who have referred families to us and we were able to work with their end of life teams to make this a smooth and workable process. It’s been a great experience for me personally and I have the opportunity work with really great people who help make this all possible.

 

Q: What message would you like to share with the public about your work?

A: In order to make progress with finding better treatments and hopefully cures for pediatric cancers, we need to embrace tissue donation from research autopsies. The process is done respectfully and compassionately for the family. We work with all the parties involved to ensure that the process doesn’t burden families at a time when they need and want to spend time with their child. 

Talk with us to learn more and hear what we do with this program. Many families feel as though this has helped them with the grief they are experiencing.

 

Related link: Tanner’s story