Since COVID-19 was declared a pandemic, many of us have been asked to practice “social distancing” – staying home and away from large crowds in order to prevent the spread of the virus.
This feels like a different world for many, but to cancer families, this is nothing new. Social distancing is critical for cancer families, because many cancer treatments wipe out a child’s immune system, meaning even the common cold could mean a trip to the emergency room. These families self-quarantine whenever their child’s immune system is particularly weak – after bone marrow transplant, during chemotherapy infusions and while recovering from major surgery.
We asked pediatric cancer families how they cope with social distancing, how to stay sane when you can’t leave the house, and why it’s so important for all of us to put each other first and stay home during this pandemic.
First Time Social Distancing
For most of us, this coronavirus crisis is our first time social distancing. But for pediatric cancer families, their first time was in the middle of their own personal crisis – their child had been diagnosed with cancer, and they were in the midst of grueling cancer treatment.
“I remember feeling like we were in a fishbowl. We could see out, and others could see in, but we were separated by our different realities. Those outside the bowl didn’t really understand what it was like in there. Wyatt’s first round of chemo was in the spring, and I was so grateful we were coming out of flu season. But Henry was in school and I worried a lot about the germs he could bring home. It’s tough for brothers to practice social distancing!” – Whitney, whose son, Wyatt, was diagnosed with neuroblastoma in 2018.
“Our first time social distancing was the end of May 2017 when we first experienced low ANC (absolute neutrophil count) due to Bella’s first round of chemotherapy. The way we described it – the ANC are the white ninjas that keep her body safe from germs. When there aren’t many of them, it makes it easier for the germs to attack and make her sick. That’s why we had to distance ourselves from everyone. We felt pretty foreign to this new isolation.” – Tabitha, whose daughter Bella was diagnosed with hepatoblastoma in 2017
“It was after our very first chemo session. I was so scared even though Zein’s immune system wasn’t completely shot yet. But I didn’t know what to expect. I kept sanitizing everything and I stayed away from everyone and was just looking at his head waiting for his hair to fall. We had masks on and stayed away from anyone who was sneezing or coughing. It sure was a scary beginning for what life after that became for us.” – Radwa, mom to Zein, a four-time cancer survivor who was first diagnosed with neuroblastoma in 2013.
Staying Safe and Sane
These families know that fearing the loss of your health, or that loss for someone you love, can be all-encompassing. But the world keeps turning, and we have to keep going – and cancer families know how to do that better than anyone.
“When your world is turned upside down and you get a perspective change like this, having gratitude for the good moment you are presently in makes a big difference. You can choose to feel sorry for yourself, or you can look at it and be thankful that you are having a day at home together, not stuck in the hospital. Every day together is a gift.” - Whitney
“As parents, we also had to remember to take care of ourselves. For myself, it was running. I tried to run every day to clear my head and refocus myself. Both my husband and I found that keeping our nightly conversations while watching our favorite mindless TV show kept us going. It was a time to vent about our situation and find the blessing that life really was. It’s never good to hold those negative emotions for too long, so venting and refocusing was key during our social distancing.” – Tabitha
“We were very clear (in a nice way) with everyone around us that we have a zero-tolerance policy to anyone who is sick. We couldn’t afford Zein being hospitalized because someone who loves him so much had a cold. Whenever we were in public or felt brave enough to go watch a movie, we would pick a time when there were not a lot of people, even if that meant missing a day of work. We always had face masks and sanitizers ready to go at any given time or place.” Radwa
Protecting Survivors by Protecting Ourselves
Coronavirus is scary for all of us, but it’s next-level scary for parents who have already had to live in a world where their child has cancer. By staying at home and taking extra precautions, you’re protecting these families who already have to take so many steps to protect themselves.
“Imagine going through grueling cancer treatments as a baby or child and then having society put you at risk for a virus. It’s just not worth it. Our vulnerable populations deserve for all of us to do the best we can and take social distancing seriously. Medical professionals have done so much for our kids - let’s honor them by not overwhelming them and our system.” – Whitney
“Just stay home. Wash your hands. What is just a sore throat or just a cough for you could be weeks inpatient for my daughter. Even though COVID-19 ‘only’ affects the immunocompromised and older people, don’t put this ‘only’ category at risk. My nightmare is having my daughter affected by COVID-19, and it’s a battle I really don’t want to have to fight. Let’s work to end this together.” – Tabitha
“That one door handle you touch because you got bored of your safe home and went out can cause a kid days of his childhood and cost a family their sanity. It really is serious for families with cancer kids. Oh, and thank you – I don’t mean to be mean, but if I need to unleash Mama Bear, I will!” - Radwa
Tips from Social Distancing Experts
When it comes to coping with isolation, cancer families are a few steps ahead of the rest of us. Tabitha, Whitney and Radwa shared their advice for staying positive in a crisis, especially a crisis that separates you from everyone around you.
“Call your loved ones, or stay connected through FaceTime or social media. Talk to your children about what is going on. They can pick up on fear and anxiety and letting them know what is going on in an age-appropriate way can help alleviate that fear – secrets can make things seem scary.” – Whitney
“Breathe. Be flexible. Don’t get bent out of shape if your ‘schedule’ doesn’t work out every day. If you have kids, enjoy this time with them. It may seem like so much stress to be ‘stuck at home’ but change your perspective and see the blessing it is. Even though it may feel like it, this situation won’t last forever.” – Tabitha
“Stay responsible, yet calm! Being on top of your game and understanding doesn’t mean panicking and freaking out. There are rules to be respected, yet at the same time, a life to be lived. Maybe this is in a different form, temporarily, but that’s okay.” - Radwa