A parent sees life through a different lens after their child is diagnosed with cancer. No longer are they free to live a normal life or do normal family activities. They live in a bubble, except for the hands-on support from family and friends. If that were not challenging enough, now COVID-19 has changed even their ability to have help from friends, and all too often, family. Pediatric cancer families not only fear catching COVID-19, but passing it onto their critically-ill, immuno-compromised child. The world has changed with COVID-19, but for pediatric cancer families, their world has become insufferable!

The way we live and interact with each other, the way we work, travel, and even run the simplest of errands is abruptly altered, and not in a good way! For many pediatric cancer patients and their families, COVID-19 shut down their support network and curtailed interaction and help from family and friends. Hospitals across the country have in place strict visitation policies or, more often, no visitation at all. The rise in COVID-19 cases this Fall has hospitals taking major precautions, and families of pediatric patients are feeling the impact more than most.

Parents of pediatric cancer patients often spend long periods of time in the hospital while their child undergoes grueling treatments. Parents often rely on their support network to help them through these difficult days and nights. COVID-19 makes an already untenable situation even worse because most hospitals deny visitation and only allow one parent in at a time for a 12-hours shift before another parent can replace them. If you are an adult cancer patient, there are no visitors with the patient. With these restrictions in place, parents and caregivers cannot rely on their support network in the same way they could have before the pandemic, because friends and family can no longer freely come and go, provide company, deliver food, or simply just be there.

Visitation policies vary among hospitals and while pediatric patients may have some exceptions to the rules, families are still impacted.

• The Mayo Clinic Hospital in Wisconsin recently announced that while two parents or guardians can visit at the same time, they must both live in the same household.
• A hospital in Hastings, Nebraska also allows two parents or guardians, but they can only leave and re-enter the hospital once each day; this is a common policy among many hospitals.
• And, still, many hospitals across the country, and certainly those in CA, allow only one essential caregiver to visit a pediatric patient each day and no visitors are allowed.

Parents and caregivers must rely on phone, text, email, or video to contact loved ones with medical updates, or if they need to hear a friendly voice. While Zoom, Skype, Facetime, and other technologies help, they don’t replace a loved one’s physical presence in the room.

It is not just the strict or NO visitor policies that bring challenges; masks are required at all times while you are with your child. Have you ever tried sleeping with a mask? Parents and guardians have to do health screenings before they enter the hospital, and certain areas of the hospital, like the cafeteria and gift shop, have either shut down completely to patient parents, or reduced their hours and amenities. No coffee stands are open in most hospitals. These small measures to ensure everyone’s health and safety can make hospital stays even harder for families and patients.

Here to Serve has found many ways to support families whose child is in active cancer treatment. Family Care Coordinators work with families to create an online care community. The online community brings together a support network to help families through their journey, whether it’s raising funds for financial support, providing gift cards for meals and other necessities, keeping the community updated about a child’s condition, or providing tangible ways to help! This is done even through the pandemic. This allows parents and caregivers to focus on their sick child and maintain quality time with their other children.

If you are a family with a child who received a new cancer diagnosis, or if you know of a family who finds themselves in this difficult situation, please contact Here to Serve. Our team is ready to help families navigate this challenging new world in light of a childhood cancer diagnosis and provide support in ways most people have not even thought of.

By Cristin Duerinckx