On October 13th, 2022, CHPCA in partnership with the Canadian Network of Palliative Care for Children led the “Make Every Day Count” campaign in honour of National Children’s Hospice Palliative Care Day 2022. We knew that the only people who could truly testify to how children’s palliative care can make every day count for families with children with serious illnesses were the families themselves. That’s why we hosted a webinar where a panel of three amazing mothers each shared their family’s unique experiences and journeys with palliative care. The webinar was filled with heartfelt testimonials to each child’s life and legacy and touching stories of the impact that palliative care teams had on each of their families’ experiences.
The panel included:
- Barbra Mohan, mom of Jasper, who died at age 15 of cancer and received palliative care for 2 months through Canuck Place in British Columbia;
- Kerena Letcher, mom to 5 boys, her middle son Heston received palliative care through Canuck Place for 8 years after he was diagnosed with Sanfilippo Syndrome at age 3 and who died in June 2022 at age 12; and
- Amy Manning, mom of Grace, who lived for 7 days and spent 5 of those days at Emily’s House, a children’s hospice in the Greater Toronto Area.
As each panelist told their story, it was undeniable that though their journeys with palliative care were very different, they shared a common thread: once the palliative care team was involved, things got easier. Kerena recounted how the Canuck Place team were the first medical professionals they encountered who had experience with her son’s rare health condition – becoming an essential source of information and reassurance for the family. She also spoke about how Canuck Place played a vital role in their family’s ability to enjoy quality time together.
“I was trying to process [Heston’s diagnosis] and I’m like: ‘How do we make every day count? This is too much – it’s too hard!’ So, one of the greatest gifts was how early we went to Canuck Place. […] I am just so grateful that at a time where I didn’t have the energy to even think about how we could get out, they were able to allow us to get out [for family activities].”
The early involvement of the palliative care team in Heston’s care made a world of difference not only for Heston, but for the whole family. She later reflected: “We’ve had years of making every day count, and Canuck Place has been a huge part of that.”
For Barbra and her family, the transition from curative treatment for Jasper to a palliative approach to care came with significant adjustments, both in the family’s perception of palliative care and in learning to navigate a more collaborative and family-directed approach to her son’s care. Once they accepted and adapted to these changes, the family grew to appreciate the new level of care that the team was providing for Jasper and the whole family. Barbra shared for other families navigating this transition from curative to palliative care: “The sooner you can make that transition to embracing that form of care the better, because it’s just an amazing level of care.” She recounted how when Jasper was receiving in-patient care, she was able to focus on being his mother rather than his caregiver – something she was deeply grateful for, especially as he neared end-of-life.
As for Amy’s family, Grace’s birth and subsequent two days at the hospital had moved so quickly that they hadn’t even had a chance to look up Emily’s House online before arriving. While Amy was second-guessing their decision on the way to the hospice, she knew they were in the right place as soon as they arrived. She went on to say: “Once we got there and we walked through the door, it was this night and day moment. It was the first time that I felt like a mom through those days.”
The team at Emily’s House provided Amy and her husband with the opportunity to enjoy being a family with Grace in the ways that mattered most to them. The staff helped them host a birthday party for Grace where friends and family celebrated together. They also set up a big screen so that Grace could watch a hockey game with her dad, a devoted Montreal Canadians fan. Amy put it best when she shared: “They gave us a space to live and create memories, instead of waiting and watching our daughter die.”
The entire hour was filled with vulnerable and authentic moments with each of the three panelists, who shared how palliative care helped all their children and their families navigate illness, care, and loss. What was undeniable to all who attended was the incredible love they each held for their children, and their deep and ongoing gratitude for the palliative care providers who supported their families through the hardships during their child’s life and after their death. The depth of the impact that palliative care had on these families underscores why every family who is facing a child’s life-limiting illness should be able to access the same level of care and support when they need it most. To hear more of Barbra, Kerena, and Amy’s stories in their own words, you can watch the FREE recording of the webinar here.
To learn more about pediatric palliative care, click here to access CHPCA’s new Resource Repository on Children’s Hospice Palliative Care.