Celebrating the Caregivers of Children with Cancer

 

November is National Family Caregivers Month, a time to recognize and honor family caregivers across the country. We are proud to be an official non-profit partner supporting the Caregiver Action Network’s annual campaign to raise awareness about and increase support for the nation’s 90 million family caregivers.

This year’s campaign theme is #CaregiverAnd, which encourages family caregivers to celebrate the passions and interests that enrich their lives - beyond caregiving. For parents of children with cancer, we know there’s nothing more important than providing love and care for their kids — but we also know how critical it is to not lose sight of who you are as an individual. Keeping your own sense of self is crucial toward preventing caregiver burnout, depression, and isolation.

Taking care of your own health, seeking support from other caregivers, and taking respite breaks to recharge your batteries are a few of Caregiver Action Network’s top tips for family caregivers.

We also love this advice from Stephen Pecevich (@StephenPecevich), dad of brain tumor survivor Sydni:

Sydni was diagnosed with an immature teratoma of the brain when she was just two months old. “That was also the day when I wrote her first eulogy on scraps of paper and napkins in the hospital waiting room,” Stephen wrote to us for a feature on our site.

Sydni is now a teenager and Stephen knows his caregiving journey is a life-long commitment. “Sydni will never walk. She’ll never talk or eat, other than through her feeding tube. I could tell you about her countless seizures, or her sporadic breathing struggles, or how often she must be suctioned. I could tell you about the ongoing physical and emotional toll thrust upon our entire family. But I could tell you this, too: I get through my days by over and over again reminding myself that life does not have to be picture-perfect in order to be experienced as a most magnificent journey.”

Stephen is a #CaregiverAnd a songwriter and an author. We celebrate Stephen for his caregiving strength, his inspiring words, and his artistic talents.

In President Biden’s proclamation declaring this National Family Caregivers Month, the steep burden of caregivers is addressed - a burden that has been even heavier since the start of the pandemic: “Millions of Americans have sacrificed jobs and altered careers in order to perform caregiving duties. Workers, their families, and our economy suffer when workers are forced to choose between their jobs and their caregiving responsibilities or between putting food on the table and caring for a relative.”

We heard this from childhood cancer families we surveyed at the height of the pandemic, with two-thirds of families reporting a reduction in income as a result of COVID-19. Nearly 30 percent reported a loss of employment.

COVID-19’s financial blow to families and survivors is devastating, as many of these families were already overburdened with medical bills and household expenses. “Income is the biggest issue for us right now,” one parent told us. “We have four kids, one with cancer. Only one parent is able to work. Not being able to afford rent, fuel, car payments, and insurance is very difficult.”

The Caregiver Action Network provides a wealth of resources for caregivers with their Family Caregiver Toolbox. For childhood cancer families, we also recommend the Hope Portal, where you can sort organizations by specific needs such as emotional support, in-person support, and help with home/living expenses.

If you’re a family caregiver, we want to hear from you: What tips would you share with other family caregivers? We may share your advice and/or story by email, on our website, and/or on social media (using your first name only).

 
AwarenessJessica Keancaregiving, caregivers, family support