5 days after Lily passed, I presented an idea to my board that was a new program to support the families at the end of life and beyond. Seeing what Lily’s family was facing and watching our volunteers rally to help her family, I realized not only was the program needed but it was possible. Once the idea was approved by the board, I developed a survey and scheduled a call with our Cancer Parent Advisory board to find out what help they thought would be beneficial. The results were helpful and continue to steer this program. There have been meetings with funeral directors, hospice social workers, Noah’s Children, Capital Caring, Mary Washington Hospice. The meetings will continue so we are certain we are not overlapping with any other local organizations, so that we know the local resources and so we can make this the best program it can be.

So what is this program?

Below is the breakdown of what we (will) do. Thankfully, we haven’t yet had a family face end of life but we are prepared for when it is needed. We have a team of volunteers who are ready and we have the funding to help these families thanks to the generosity of our community. These are the things we offer but it will be up to our families to determine their needs.

End of Life:
When a child goes into hospice and is facing end of life, we put together a team of volunteers to support them. We also provide the following:

  1. Gift card of $500 for errands, expenses, etc
  2. Volunteer support in home (Minimum of 3 hours a week to include errands, cleaning, meal prep, etc.)
  3. Home visits
  4. Assistance with organizing community support (youcaring, take them a meal, etc)
  5. Photos (if not already done) and video done by Kevin Henry Mileposts.

Celebration of Life / Memorial Assistance:

  1. Planning and purchasing items for event (balloon release, photos for display, rock memorial, other requests)
  2. Providing photos for the service
  3. Volunteer support at cemetery, Funeral Home and at celebration of life or funeral
  4. Assistance with cost of headstone
  5. Resources for needed support

Grief Support:

  1. Home visits
  2. Grief Books for Family
  3. Connections to local organizations providing support
  4. Memorial items
  5. Newsletters with resources
  6. Group Activities for families
  7. Random Act of Kindness Days
  8. Holiday help- tree set up, house cleaning, meal help
  9. Cards on birthdays and anniversaries
  10. Continued check ins by FGP volunteers

Thank you to Lily’s family for allowing us in to see the reality of pediatric cancer, what end of life looks like and how hard it all is but most importantly, showing us that opening your heart to people at the worst of times, can change your life.

We can’t change the diagnosis or the loss, but we can try to make it a bit easier even if only for a moment. Because of the light Lily shined on us, we now know that we can shine some light into the darkness of these families as they face the unthinkable.