Cancer Doesn’t Stop for COVID: Supporting Families Throughout the Pandemic

[Promote hope & will]

Teresa McGinley

As a child life specialist, my job is to reduce the fear and stress of the hospital for children and families. In the wake of COVID-19, that job has grown more important than ever. While children still fear the typical hospital “unknowns”, for example, what having surgery means or if something is going to hurt, their worries have grown expon. They are watching the adults around them fear something that they cannot see. They are scared of germs, people and masks and the hospital is full of all of these things. Fear and stress are palpable with each and every family I meet.

Instinctively, I reach out to hold the hand of my school aged patient and hesitate, I pull back. I’ve just explained her blood is sick; it’s something called leukemia. Her mother fidgets with gloved hands, I can tell her lip is quivering under her mask. We talk about hair loss and tears stream down this little girl’s face. I feel like I’ve been punched in the gut. I want to offer a comforting touch, a firm squeeze of her hand, but what does socially distanced comfort look like? How do I show her I am here for what will be the hardest journey of her short life thus far-from 6 ft apart? I can’t bring myself to do that, so I hold her hand. Why do I have to question that? Isn’t it the right thing to do? I tell her everything is going to be okay. Am I right?

This virus has pushed boundaries of providing empathy and compassion that have been so implicit in my everyday role. Every day, I try to comfort and support families on the inpatient hematology/oncology floor. Often this means holding their hand or providing information to calm their nerves. I question how I tell a child it’s safe to be in the hospital as I see their parent at the bedside wide eyed and terrified, watching staff done respirators/face shields for the room next door. The rules of COVID are constantly changing and I do not have the concrete, reassuring information so readily available to me anymore.

Families are torn, scared to bring children in for chemotherapy that will save their life. The enigma of coronavirus as scarier than cancer is hard to swallow. Kids discover they must be tested before they can be admitted for their treatment. I put my gear on and become the image they fear from the news. I coach them through a test these kids should never have to endure. My role includes providing honest, concrete information to help kids feel prepared for medical procedures. I’m struggling to find the words to use to help prepare them for the discomfort that comes with this test. Or for those kids who now have to do the test weekly and say they can’t, how do I tell them that they can?

My patient’s mother is tearful, overwhelmed and scared. She has been at the bedside of her 7 month old baby, with a new oncology diagnosis, for her first round of chemotherapy. She’s been here for two weeks: alone. She has supported her daughter through procedures, tests, new medications and the countless masked faces who appear at her crib to help her body, though she’s not always so sure about them. This mother is fearless, strong and resilient but she’s reached her breaking point, “I haven’t seen my husband in weeks, my daughter hasn’t seen her daddy, and I just need some love. I appreciate the support I have here, but I’m scared and I just want my husband to hold me and tell me we can get through this as a family.” My heart breaks for this incredible woman who is doing everything she can to support her daughter. But COVID dictates the policy and we can only have one adult at the bedside. Exceptions can be made and they were, in the very beginning, for this strong mother and her husband to be together when they learned this difficult news. But since then, their daughter was discharged and has returned for treatment and so the exception is over, one adult per bedside per pediatric patient. I sit with her, I offer my support, but I cannot fill the one void she needs filled. And I feel helpless.

I have continued to learn and adapt my methods of supporting and advocating for families throughout the pandemic. I feel I have grown and have found ways to meet these families’ needs despite these difficult circumstances. We’ve developed virtually programming and one time use therapeutic activities. I have helped create educational resources for families to help children understand what COVID-19 means and how germs spread.

But most importantly, I have learned how truly prevalent fear is. I work with a tremendous medical team, professionals who give their all every day to our pediatric patients. But as units began to change, staffing and labor pools developed, fear was palpable. The COVID crisis caused me to look deep inside. Would I volunteer to go to a COVID floor? Is it fair to my family for me to volunteer or do I wait until I am asked, or required? This crisis changed my perspective, really made me stop and think, and confront fear dead on.

My job has in some respects, stayed the same. I remain on my pediatric inpatient floor supporting kids, helping them cope with hospitalization. I am now wearing more hats. We have no volunteers, limited support staff and no outside programming being offered to our kids. Our social work team is rotating working from home. These families have been stuck in their rooms for the entirety of their admission, which is very atypical for my kids who are used to taking trips to the playroom and the healing garden, participating in art groups, having opportunities to play and be kids. I’m trying to meet all of these needs while our census has stayed pretty high. Cancer doesn’t stop for COVID and new families keep arriving. So each day, I will don my PPE and get to doing the work I love.

My job is to reduce families’ fears, but how do you do that when fear is everywhere?

 

 

TAKE AWAY TOOL BOX:
Tips When Talking to Your Children about Coronavirus (COVID-19)

Developed By Yale New Haven Children’s Hospital Child Life Program

Children feel fear and anxiety and can sense when adults are stressed. Use a calm tone and remind them this is temporary and you will keep them safe. Give children a “job” to help keep your family healthy i.e. handwashing.

 

Children need simple, honest answers and age appropriate information. Explain the virus with simple, concrete language: Coronavirus is a type of germ that can make your body sick. It is important to wash our hands to make sure germs like this virus do not spread.

 

Be honest with your children about schools and other public places being closed and why this is happening: to help keep everyone safe from germs. Keep children informed of changes as they happen so they do not feel out of control. Children feel safe with routine. When possible, keep a routine at home.

 

Address your child’s feelings and let them know it is okay to feel scared or upset. Say things like “I can see you are worried about getting sick. Let’s talk about what we can do to help you feel safe.” Recognize how difficult it can be for children when their activities or events are cancelled: “It must be very frustrating for you to not compete with your dance team. You have been working so hard and I am proud of you, but I am happy you will be kept safe from germs.”

 

It is important to show your children ways to help control anxious feelings. Some ideas for coping skills are: deep breathing, yoga, meditation, listening to calming music, and focusing on activities for distraction.  Pay attention to how often you wash your hands and use hand sanitizer so children can follow your lead.

 

Your children depend on you. Practice self-care so you are healthy both physically and emotionally. Some ideas to ease anxiety and relax your mind include:

o          Shut off the news and social media for 1 hour

o          Sit in a warm tub and relax after your children go to bed

o          Meditation

o          Exercise (Use apps on your phone)

o          Watch a funny show or movie, read a book, or listen to calming music