What Pediatric cancer taught me is still a work in progress. You know that floor in your children’s hospital you’ve never been to but wondered what secrets it holds? The one where you need a chaperone to take you there? That’s oncology. AKA: the ninth floor in our world. First day on the ninth floor, the doctors never once said, “Your child has cancer.” You know those childhood cancer commercials that tug at your heart? Never happened. The medical textbook words were used. The rush was definitely on. We knew exactly what was happening without ever being explicitly told in those basic words. We knew.
I learned you will gain an obnoxious amount of weight living that hospital life. Oh, sure, some were kind and said it was stress. Stress hormones do that to a girl, right? Hamburgers and onion rings at 9pm every night for two years will also deliver this result. Tell me why hospitals don’t offer reasonably priced healthy food? The only time to eat ended up being when our guy was maybe asleep for a bit. Late at night we would run down to the cafeteria to find the only thing open that time was that grill. It offered the intoxicating smells of grease. I think, maybe, there was a grilled chicken option to fry up on the greasy grill. But, I didn’t need that kind of negativity in my life. Ten times out of ten the stress of the day lulled me into the comfort food of a greasy burger. Therefore, I am now dealing with that ‘stress’ weight.
But the biggest and most important thing pediatric cancer taught me and continues to teach is: Love God and love others.
We who have close-knit families tend to think in terms of children being surrounded by family when going through an illness as monumental as this one. Not always. So many nights were spent awake listening to the room next door; hearing a child cry. Hearing only the voices of nurses calming a child at bedtime or through painful procedures. Some cried out for a parent who had no choice but to leave at night to go back home and care for the rest of the family. Some parents had to work without leave even for pediatric cancer. The worst might have been the completely silent children. The ones never letting out a peep. Major depression is one of the secondary issues dealt with in teens while going through treatment.
Not every child takes one of those much seen Make a Wish trips. They only go to age 18. Pediatric hospitals care for kids even older. Some kids are just too sick to ever leave the hospital. We know both of these situations all too well. Some families take the Make a Wish trip without the child who is sick. Read that last sentence again.
Not every child meets sport stars and goes to private events with major sports teams. Few meet a celebrity and gets 10k likes on that celebrity’s Instagram page with words like, “Repost for this fighter.” Some kids fight that fight with only the nurses, techs, and custodians knowing how hard their days and nights have truly been.
And just like the outside world … there are kids who have disabilities, special needs, who get cancer. Cancer isn’t picky. Sometimes our special hearts have to deal with one more fight, one more sickness, one more pain, one more night awake, one more. And maybe one more way to lead someone to the hope we have in Christ, hard as it is.
At the end of the day, when the hospital room door closes, there is no one there but you and your child. There is no alone like the alone of pediatric cancer. You will be surprised at who shows up and mostly, who doesn’t. It’s a lonely place. This is where the rubber hits the road in your faith. Just recently I came across the verse I highlighted in my bible the first night of chemo. Which was the first night in the hospital. Remember, they put you on the fast track. “Record my lament; list my tears on your scroll are they not in your record?” ~ Psalm 56:8. Love God. He’s the only one there when the lights go out.
Right now our ninth floor is seeing more admissions of babies and teens. Babies. Babies get cancer? Yeah. Teens. Teens are just getting ready to plan, dream, and wham-o. Remember that depression I told you about. There are people who have to sit with them all day to keep teens safe all while they deal with what my family liked to call the poop sandwich of cancer; chemotherapy, radiation, bone marrow transplants, sickness, mucositis (this is the entire digestive tract, by the way), infections, bone resection, limb salvage, and so much more.
Wanna love others with me?
Who needs love more than these kids going through this kind of situation? Next March is our Evan’s birthday. One of those things pediatric cancer taught us is some kids do not survive this disease, like our Evan. So we are taking the opportunity to celebrate our Evan by loving those families still fighting with gifts and a meal. We want to love those children who sometimes aren’t as seen as others. Our Evan spent many, many days cooped up in one room of the ninth floor (and the cardiac floor, and the PICU) without the ability to leave because of that cancer poop sandwich. He loved to receive a good present (“For me? Evan?”) more than anyone. Let’s shower these kids just the same.
“And you must love the Lord God with all your heart, all your soul, all your mind, and all your strength. The second is equally important: ‘Love your neighbor as yourself.’ No other commandment is greater than these. ~ Mark 12:30-31 NLT
Below is a link to the Amazon wish list containing items that the Child Life Specialist has suggested, along with some things that were helpful to us when we lived that hospital life. Come help love others with us!