The power of human connection is needed now more than ever. These are trying times, with exceptional measures, but cancer parents are no strangers to isolation. I clearly remember all the times our daughter was inpatient on the 7th floor of the children’s hospital where I was hoping ‘today would be the day I saw another parent in the break room’, just to share a look of despair which said… I see you, and this is really hard. It wasn’t until a year after our daughter passed away when we finally met another set of parents just like us.
Human connections are deeply nurtured in the field of shared story. -Dr. Jean Houston, Foundation for Mind Research
After creating the Hepatoblastoma Resource Network last year, I immediately knew I wanted to spearhead a personalized support network to connect our community of parents. The thought of any parent feeling as lonely and secluded as we did is heartbreaking. We had a tremendous amount of support from family and friends, but it was not the same as conversing with another parent who spoke our chemo language, knew the roller coaster of AFP emotions, could relate to scanxiety, was exhausted advocating for their child, and had that sinking feeling of worry deep inside. Validating this perspective has become so important to me years after our battle.
It’s more important than ever that we rethink and harness the power of relationships and recognize that they are not just nice to have, but that they are necessary to have. -Former U.S. Surgeon General Vivek Murthy
In 2021 we’ll be launching ‘The Parent Connection’, which is a personal support system built on shared experience, compassion, and community. Often times you may be the only Hepatoblastoma family at your hospital. This program will be an opportunity to have a personal bond with someone who has been through what you are going through, someone who understands that unexplainable feeling of question you can only get from a parent who has been in your shoes. In this authentic partnership, the benefits go both ways. There is a healing component to sharing your experience with others.
Caregivers who register for the program will be paired up with someone who has experience in a similar situation: recently diagnosed, in treatment, relapse challenge, palliative care, or bereaved. Our core team of mentors are being trained this winter, and we’ll follow-up by offering a larger-scale education program this Fall. We hope you all can join us at the Hepatoblastoma Community Conference in Fall 2021 for the ‘Power of Connection’ workshop!
If you are interested in becoming a parent mentor for this program, please e-mail us at Connect@Hepatoblastoma.org
Written by: Christina Stiverson
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