February always starts off dreary, but as we get to the end of the month, there is a renewed excitement as spring is getting closer and closer. The excitement of renewal carried over into Cincinnati, Ohio over the last weekend of February, as many families who all hold at least one similarity came together to bond and work together to make a difference in one rare area of the pediatric cancer world.
Because Hepatoblastoma is considered a rare pediatric cancer, it is frightening as a parent to dive into trying to find resources to help your child. During treatment, you are often the only case at your hospital and you feel so alone. You want to be able to talk to other families on a similar journey and most of the time, you do not know where to turn. The vision of the Hepatoblastoma Community Conference was to bring families of patients together into one room, along with the medical and scientific communities to meet, creating connections and networks so no one has those feelings of being alone.
‘The Hepatoblastoma Community Conference was more than I ever imagined. For the first time I met other parents of children with the same disease as my child. The connection we shared over just a few days was amazing. We learned, we laughed, and we teared up together. Also, being in the same room alongside world renowned physicians and researchers was incredible. I now feel armed with more knowledge and support to help my daughter’.
- Kathy Cundiff (mother of 3yr old Layla, survivor)
The conference had over twenty families in one room, listening to about twenty internationally renowned oncologists, surgeons, and biologists report on the most up-to-date research on this rare liver cancer. Presentation topics included novel therapies for Hepatoblastoma, the development of a relapsed/refractory registry, parent initiatives in Europe and Japan, epidemiology studies for Hepatoblastoma, and research beyond a cure. As meeting co-organizer (along with parents) and host, Dr. James Geller shared his reflection on the conference:
‘Advancements in pediatric cancer care are not all going to take place in the large national cooperative group structure. To optimize advancements in areas where there are gaps, be it knowledge or treatment options, or access to and advancement of either, or community support, it is important that all stakeholders listen to one-another and organize so that we can collectively push forward. This must include patients and their families as the key stakeholders.
It is for this reason that the critically important Hepatoblastoma Community Conference was conceived and linked to the 3rd International Pediatric Liver Tumor Conference, and the former co-organized by parent stakeholders alongside clinician/researchers, supported by a ‘Patient Centered’ Outcomes Research Initiative grant.
The energy and insight shared by parents was awe inspiring; their voices were heard by all the key leaders in the pediatric liver tumor field, internationally. It was also a thrill to see all vested parties enthusiastic about the potential of ongoing collaboration, in numerous forms, and the general optimism surrounding what’s next. Together we can advance knowledge, research, mutual support, and sharing of all, and together we will work to enhance cure and survivorship for all families affected by hepatoblastoma.'
- Jim Geller, MD (Medical Director, Liver Tumor Program, co-Chair AHEP1531, Cincinnati Children’s Hospital Medical Center)
Some clinicians expressed just how much of this disease takes their focus as they conveyed each case is not a one size fits all. Each family was able to participate in break-out sessions in the afternoon, allowing their voice to be heard. These priorities were then brought back to the group to be discussed as a whole. Some of the ideas that came from these break-out sessions inspired the group of clinicians to act immediately on them, all to help the greater good. Parent priorities for relapse/refractory disease included published guidance on AFP trends, post treatment monitoring (scans, hearing, AFP), genetic testing standards, nutrition, information sharing between large institutions, and novel therapies. Parent priorities for survivorship and outcomes included bone density studies, nutritional considerations, standards for follow-up care, developmental/school related outcomes, secondary malignancy concerns, and hearing loss. Clinician/researcher, Dr. Allison O’Neill of Dana-Farber, comments:
‘As a physician-scientist and pediatric oncologist, one of my greatest passions is treating patients with hepatoblastoma and furthering scientific advancements for this rare disease. The opportunity to form relationships with patients and families affected by hepatoblastoma, to more intricately understand their concerns and priorities, and to unite in the collective mission to advance the field, was exceedingly powerful. I look forward to and am inspired by our continued, collaborative work.’
- Allison O’Neill, MD (Clinical Director, Solid Tumor Program and Liver Tumor Center, Dana-Farber Cancer Institute/Boston Children’s Hospital)
One of the biggest accomplishments of this conference was a sense of unity. We have a strong Hepatoblastoma community now, and no parent should ever have to feel alone. Many parents learned about the Hepatoblastoma Resource Network in detail, which is the resource website started by Christina and Cody Stiverson whose daughter Addie passed away from this disease in 2016. They are supported by a dedicated team of parents and leading Hepatoblastoma clinicians to develop credible content in this consolidated resource for families dealing with Hepatoblastoma. Some of the ideas that were discussed in the break-out sessions will be used to help the resource network publish articles on what the parents want to hear about most.
‘As a parent of a child who had such a rare and unique disease, I can’t emphasize enough how important it is to have a community of other families and medical workers that communicate with each other and work together. Having a one-stop-shop resource for Hepatoblastoma families with the latest treatment and research developments is priceless. This disease is such a rare beast and requires all of us working together to give kids the best chance to beat it.’
- Jessica Woolwine (mother of 4yr old Charlotte, survivor)
The community conference backed up against the 3rd International Liver Conference in which nearly 100 professionals came together to give 42 scientific presentations all related to creating better outcomes for pediatric liver cancer patients. This was inspiring to see as a parent, and we plan to communicate the most updated information out to the community via the Hepatoblastoma Resource Network in the upcoming article on novel treatments.
After a long day of presentations and work, the conference wrapped up with a dinner which allowed the parents and clinicians to socialize in a relaxed setting. Everyone was able to mingle and get to know each other while eating a delicious dinner. The night ended forming tighter relationships and the long-term connections will make the disease landscape brighter for everyone.
The morning after the conference, a core research team of parents and clinicians came together to digest all of the events and parent priorities. We created action items to grow our community and deliver the most educated treatment to Hepatoblastoma patients. Dr. Geller, Dr. O’Neill and a few international collaborators are leading us towards a patient registry to better understand the relapse and refractory disease community, something we have needed for a long time. When we left the conference, our hearts were full and a renewed sense of excitement was felt amongst all of us, ready to make our community one that others follow and want to join.
Our most sincere gratitude goes out to Dr. James Geller and his staff for co-organizing, hosting, and funding (via PCORI) this world-class event in Cincinnati, Ohio. In addition, we want to send a shout out to Momcology for their partnership and guidance to help us build a strong community of families. The next Hepatoblastoma Community Conference is planned for Spring 2021. Location to be determined. We look forward to seeing you all there!
Written by Erin Locke & Christina Stiverson
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