Want to provide the best care for your kid? Put your health first.
You’ve heard the safety procedure. Whenever you’re on an airplane with your child, you’re told to put the oxygen mask on first before placing one on your child. Yet, when our kids hurt or are hit with a major illness such as cancer, we often neglect our own health.
“I see so many parents here,” said Kelly McElligott, a clinical social worker at Loyola University Health System in Maywood, Ill. “I’m a mom myself. I understand that it’s hard to move away from your child’s bedside when you know he needs you.”
It’s a balancing act, especially if you have more than one child and your sick child is hospitalized. “You need to devote time to the child with more needs versus the kids at home who are trying to go on with everyday life,” she said. “And you have to take care of yourself.”
Just going home, taking a shower, making sure you eat three square meals a day is essential for your wellbeing. “It’s okay for parents not to be at the hospital 27/7,” she said. “In a normal family situation parents are pulled in different directions. You can’t be at three places at the same time.”
That’s why McElligott suggests having a support system in place. Part of that support system should include your child’s doctors, nurses, social workers, and administrators. “The nurses here, and at other hospitals with specialized care units for children, are trained to spend time with your kids,” she said.
It’s also smart to enlist grandparents, aunts, uncles, other family members, and friends to lessen the stress. Feeling guilty is normal when you’re away from your child. “You also can feel that you’re neglecting other family members,” McElligot said. “That’s why a support system is a must.”
She’s seen people come together to help with meals, rides to and from the hospital, visits so you can spend a few hours at home, and even shopping for essentials. “People want to help,” McElligott said. “That’s the silver lining. One family who spent a lot of time at the hospital had enough dinners in their freezer for an entire month.”
The trick is to take some time to organize. The social worker at the hospital can offer suggestions on how to enlist people to help, as can the hospital’s child life specialist. “When your child is first diagnosed, that’s when everyone comes forward to help,” McElligott said. “Put a calendar together and ask everyone if instead of coming to the hospital the first week, if they’ll spread out their visits and come on different days throughout the month. This way, your child will have more visitors throughout the month than all at once. And it will give you some free time.”
If you have to work, it’s a good idea to check in with your child during the day. “We also call parents to let them know what’s happening,” she said. “And when parents are here, I always tell them to keep a pad and pen handy to write down questions they may have for the doctors and nurses. And to ask if there’s anything I’m forgetting.”
Your child’s hospital staff wants to help. They may be the first people you reach out to, especially if family members don’t live nearby. Talk to your child’s school about getting assignments so your child can keep up-to-date with his work. Maybe, your child’s school can arrange for visits from staff, and depending on your child’s age, ask if students can send in books, drawings, and letters.
If you’re isolated, look online for support groups facing similar issues. “If you can lean on a spouse, do so,” said McElligot. “Some couples support one other and others have a harder time when facing something as tough as childhood cancer.’
Consider talking to a therapist. “If you do not take care of yourself, you cannot take care of your child and the other members of your family,” McElligot said.
General pediatric cancer resources
- The Jessie Rees Foundation delivers inspirational presents, including a sketch of your child.
- Alex’s Lemonade Stand Foundation (ALSF) raises money to support research; offers a travel fund to cover transportation, lodging, and meals to visit specific hospitals; connects parents; and provides education for siblings.
- American Childhood Cancer Organization (ACCO) supports research and provides online support for parents.
- CancerCare offers telephone counselling by oncology social workers; online support groups; one-hour online or telephone workshops by experts; and financial assistance for transportation, medications, home care, child care, or durable medical equipment.
- CureSearch for Children's Cancer provides information about tests and procedures, treatment options, medications, side effects and other issues.
- Grahamtastic Connection provides free laptops, tablets, robotics and internet access to children who are hospitalized or bedridden.
- Hopecam connects homebound children to their classmates via web cameras and laptops.
- Make-A-Wish America aims to give eligible children a wish come true.
- Melonhead Foundation provides financial assistance to children with cancer and their families who are seeking non-traditional medical care, such as acupuncture and massage.
- Pablove Foundation funds pediatric cancer research and offers photography classes to kids with cancer.
- Pediatric Oncology Resource Center, maintained by parents, offers online information for parents of children with cancer and for survivors of childhood cancer.
- Rally Foundation offers research grants, a 1-year $500 grant to cover treatment or other related costs, and personalized fundraising pages for athletic patients.
- Shining Stars Foundation offers kids with cancer fun activities in all-day or overnight events and week-long camps.
- Starlight Children’s Foundation provides an online social network for teens with life-threatening illnesses and their siblings, as well as in-hospital parties.
- The National Children’s Cancer Society offers online communities and grants for lodging, meals, transportation, health insurance, and medical expenses not covered by insurance.
April 07, 2020
Janet O’Dell, RN