6. Prepare for Financial Uncertainty
Along with medical expenses such as copays and deductibles, caregivers may be paying travel expenses and working less, or not at all, so they can be there for the child. Talk to the child’s care team to find out what resources are available to help with expenses. Employers may also be able to help. Tangible resources such as social security disability might be an option, and philanthropic organizations may provide support, too.
7. Take Care of Yourself
“Something I hear frequently is, ‘As long as my kid is okay, I am okay,’” Molly says. “I understand what parents mean when they say that, but I invite them to think about it the other way around, too: Your kiddo is going to be okay if you are okay. Their resilience is going to be impacted by you being okay.”
It is perfectly reasonable to step away from the bedside to get coffee or a meal, or to ask a friend or grandparent to stay with the child while the caregiver heads to an appointment. It is also important to eat regularly and maintain a proper sleep schedule so that health does not suffer. In the long run, investing in self-care is vital for coping with caregiver stress, and will likely improve mental health.
8. Remember: Everyone’s Outcome Is Different
One of Yidrienne’s most challenging moments as a caregiver was when she thought about other children in her community who were diagnosed with osteosarcoma and did not survive. “It is one thing to have a cancer diagnosis, and it is another thing to know that the odds may be stacked against you,” she says. It’s important to remember that all outcomes are different and each case should be handled day by day. Fortunately, Yidrienne’s daughter has been cancer-free for three years.
9. Let Yourself Grieve the Changes for Your Child and Embrace Joy in All Forms
Osteosarcoma treatments and surgeries change a child’s body physically, which means they may face limitations or disabilities in movement. Yidrienne said one of the toughest parts was acknowledging the grief that goes along with knowing a child may not be able to engage in the full range of physical activities they once loved.
Beyond physical health, this experience can also change a child’s mental and psychological health and outlook. Communities, career paths, and independence might all look different going forward, but it is important to acknowledge the grief, come to terms with the changes, and look ahead to adapting to a new life. And while the path ahead may be different than imagined, it can still hold enormous joy, often in surprising forms.
“We have an annual community 5K walk honoring Childhood Cancer Month. Seeing our daughter complete the walk last year surrounded by family and friends was truly special; our hearts were so full watching her cross that finish line, knowing what she had endured through treatments and multiple leg surgeries.”
10. Keep Moving
“The way you feel right now is not how you will always feel. There will be hard times. There will also be lighter ones. But it’s not always going to feel completely out of control and chaotic,” Molly says.
Yidrienne had little time for herself when her daughter was in the midst of treatment. But now, she’s embracing volunteer opportunities and working toward ambitious fitness goals. She walked a marathon last year, and this year she plans to climb Half Dome in Yosemite.
“Ever since we got to a much better place medically, I’ve been committing my time to other things that I have been passionate about that I had not made room for,” she says. “Maybe part of it is the realization that anything can happen in life, and I should do all the things that bring me joy and energy.”
This article was produced with support from United Therapeutics. The views expressed are those of the authors.
