There are words no parent wants or even expects to hear. Yet parents of more than 15,000 children hear those terrifying words every year in America. That was our story in October 2018 with our 6-year-old son, Liam: “Your child has cancer.”
The days following a diagnosis are filled with confusion, emotion and fear. The questions of “how” and “why” fill your mind and heart. In between tears, doctors and support staff brief you on protocols, expectations and hopes. You cling to that last part, hope. They tell you more than 80% of pediatric cancer patients survive. You can only think of the other 20%. You know your child is going to be filled with toxic drugs that you hope will save his/her life. The fear is that same medicine will push your child’s body to the limits. With every drip of medicine, beep of a machine or knock on the door, you get that feeling of being in a real-life horror movie, only the monster is chasing you from within your child.
With all that, your family begins the cancer journey.
Liam was diagnosed with Burkitt’s Non-Hodgkin lymphoma, a rare and aggressive form of cancer that requires an equally aggressive form of treatment. We spent 70 nights of the next five months being treated by the St. Jude Affiliate Clinic at Hemby Children’s Hospital at Novant Presbyterian Hospital. In that time, we learned the ins and outs of that place (including the really awesome fourth floor vending machines). We’re thrilled to report Liam’s “No ‘Mo Chemo” day was Feb. 22, 2019, and he is now 18 months post-treatment and doing really well.
By no means are we “experts” in parenting a child in the hospital, but whether your child was diagnosed with cancer, or some other issue, these are some things that worked for us:
Take care of yourself
Stephanie and I heard that all the time. We often scoffed, saying we’ll take care of ourselves when our son is done with treatment. In many ways, we did do that. Our entire focus was on Liam, and his big brother Aidan. There was no time off. Sleep – no thanks. Not at the hospital.
All that being said, you do need to take care of yourself. Find something that helps you push through the day. You are part of the medical team taking care of your child. You wouldn’t want the doctor or nurses running on empty. You shouldn’t be either.
For us, it was the small things. We purchased a coffee pot for Liam’s room. There’s a good chance if you walked the halls of Hemby while we were there, you could smell Starbucks roasting in our room.
Whenever there were a couple of extra moments, I took a walk. Just getting outside, even to go pick up some food, was extremely helpful. On rainy days, I’d walk the staircases or the parking garage. Anything to clear up my head for a few moments.
Develop a good relationship with your medical team
The emphasis is on team. Your doctor, nurses, support staff, nutrition, child life and so on are there to help your child. It’s vital for you to develop a good relationship with them.
We worked with some incredible people during our time at “Hotel Hemby.” We continue to stay in touch with some of the incredible nurses who really cared about Liam and our family. Those relationships didn’t happen overnight, figuratively speaking. It often literally happened in the middle of the night. Developing good relationships enables you to make your stay at the hospital easier. You need all the help you can get when it’s Day One of a six-day stay and your child is already screaming “I want to go home.”
Be your own advocate
Hospitals are incredibly busy. Do yourself a favor and ask to double-check dosages, medications and other orders. Novant Health’s policy of requiring two people to check when administering certain drugs (especially chemotherapy) is a major relief. Still, we asked nearly every time what they were giving Liam. It gave us a peace of mind and better understanding of the treatment process.
You know your child better than anyone else. One day after treatment, Liam started complaining about his legs being itchy and hurting. I called the nurse. They gave him a Benadryl IV to stop an allergic reaction. We noticed Liam’s condition worsening and asked them to contact the doctor. It turns out Liam was allergic to IV Benadryl. We helped to avoid a worsening condition because we know our child.
We also listened to Liam to see how he preferred to take his medicine. Any time you can give some control and decision-making back to your child, it helps.
Focus on your family
This sounds simple enough, but it’s harder than it sounds.
Between work, school, doctors and well-intentioned people, things can get complicated. Lots of calls went unanswered and emails unopened. Frankly, we dropped almost everything that we could to focus on the family, both Liam and Aidan. While Liam was the one going through treatment, his big brother was going through a lot himself. We did our best to make sure both felt loved and included.
One thing that helped was being a member of the St. Jude family. We never had to think about a bill. Any time we received one, we forwarded it along and poof, it was gone. This was a major relief. It not only removed a financial burden, of course, it also cut down on the stress of managing all that paper.
Make your room your home
The hospital can be a sterile place – make it your home.
Just a day after diagnosis, a dear friend came into Liam’s hospital room and decorated it for Halloween. A blow-up mummy, spiders, decorations. The whole nine yards. We knew we would be spending several holidays in the hospital and these small things really made a difference.
I already mentioned the coffee maker. We also brought in a foam mattress. Super-soft blankets, required! Food, snacks, drinks. You name it. We brought it with us. While the hospital provides TV, video game system and games, we eventually brought in our own Amazon Firestick, iPad and Nintendo Switch. After a couple of days, his room looked like a LEGO store. The Child Life team members can really be a help to educate, entertain and counsel you and your child. Use them.
Ask for help
The Flynns are a proud family and hate to ask for help. We like to be the ones who provide help, not need it. Not during this time. Take all you can get.
Our small community of friends and neighbors made the experience bearable. Neighbors often took our dog, Bear, on multiple walks a day. A friend helped to schedule meals for months. Sometimes we ate the meal on the spot. Other times we froze it. Regardless, we ate it. Trying to give Aidan as normal of a life as possible required his friends and their families. A sports card shop might have stayed in business for all the trips Aidan took down there. Sometimes we needed just to vent. Other times we needed a shoulder to cry on. We asked for help. The call was always answered.
What we learned is while this was our family’s cancer journey, it also impacted other people. People want to help. And it’s not just to help you. It’s to help them process what’s going on as well.
It’s OK not to be OK
One of our friends who sometimes struggled with what to say, actually put it best: “This sucks.” It does. There’s no question about it. You can ask yourself the “why my child” question over and over again and there is no answer.
It’s perfectly understandable to not be OK. Speak with a counselor, or chaplain, if that might help. Go outside and scream. Run. When people ask if you’re OK, be honest. No, we’re not. No one, especially a child, should have to go through something like this.
And finally, celebrate your victories
The cancer journey is a long road with ups, down and twists. Celebrate your victories wherever you can find them. A good scan, improved lab results and of course the end of treatment. Those celebrations, and remaining as positive as possible will help you, your family and your child during these tough times.
Shawn Flynn has spent more than a quarter century as a journalist, including the past 17 years here in Charlotte. He is currently a freelance writer who teaches and consults with several nonprofits. You can contact him at [email protected] or follow him on Twitter @FlynnShawn.
Caption top photo: Hemby Children's Hospital team members sing the "No Mo Chemo" song on Laim's last day at the hospital.