Radiation and Super Heroes
“Josiah refused to embrace the role of a hero. He did his part and expected God to do His.”
What is DIPG?
Diffuse Intrinsic Pontine Glioma (DIPG) is the type of tumor that was growing inside Josiah’s brain:
“DIPG is an aggressive tumor that interferes with all bodily functions, depriving a child of the ability to move, to communicate, and even to eat and drink. As a DIPG tumor begins to grow, it puts pressure on the nerves that control the essential bodily functions regulated by the pons. Children with DIPG commonly experience double vision, reduced eye movement, facial weakness or asymmetry, and arm and leg weakness. They also have problems with walking, coordination, speech, chewing, and swallowing. As the tumor progresses, it also interferes with breathing and heartbeat, which ultimately results in the child’s death.” (here)
Treatment
Treating a child with DIPG requires near heroic measures. Receiving treatment, as a child with DIPG, requires near super-heroic powers.
The only procedure that consistently fights a tumor growing in a child’s brain stem is radiation. The tumor shrinks after 8 weeks of radiating the base of the brain. We were told a few children have been “cured” after radiation treatment. But in over 95% of all children, the tumor begins to grow again. There is no second treatment of radiation because the second time the tumor is exposed to radiation it grows faster. The only known “cure” to destroy the tumor will instead kill a child quicker.
Every child with DIPG goes through radiation. Every child. The time after the radiation is some of the best times a child has. The tumor shrinks and its effects are minimized. It is normally the longest a child will go with little side effects such as weakness in his motor skills and double vision.
As I remember Josiah, I want to focus on all the good memories. He is an inspiration to me. I have to be careful not to create him to be a saint or a superhero. I want, I need to tell his story, our story, in the way it happened. It would be horrific for me to lie about my son.
June 12, 2015
The Gong
My little man was nine years old that summer. He desperately wanted to just be a nine-year-old boy. The only superheroes he wanted to be was to be the Flash, the fastest man alive, or Captain America, … Cap!
Five days a week for eight weeks, I took him to the hospital for radiation. At the end of his radiation treatment, they had him ring a gong. It was in the middle of the clinic. It was a small six-inch free-standing gong.
The office personnel and the nurses gathered around him. They were clapping and cheering him on. They were thrilled he completed radiation! They had all played a part in barraging the base of his skull for eight solid weeks. They kept prompting him to strike the gong. They wanted him to glory at the moment. Victory in the fight against brain cancer! No more wearing a full face mask. No more waffle cone impressions to his forehead, cheeks, and chin. No more wasting time in the waiting room sitting with adults and elderly people waiting to get their treatment.
So he obediently walked up to the gong. Picked up the mallet. Calmly looked around and struck the metal.
There was a roar.
He placed the mallet down and walked back to us. No joy. No tears. No excitement. No smile. He simply looked at me and said, “Let’s go.”
Hero
Josiah did everything we asked of him to kill the thing in his head that threatened his life. But he never embraced the role of hero. He did his part and expected God to do His. I expected God to be the hero I know Him to be. I believed God would use radiation to destroy the tumor, or it would become the medical explanation of God’s supernatural healing. I did not doubt it.
We went home and never spoke about those weeks again.
Josiah was no saint. He was no superhero. He did not need or want our praise. He just wanted a miracle. I sure felt he deserved one.
Before diagnosis with DIPG. Josiah was an extremely athletic kid skateboarding, swimming, playing basketball and baseball.
Fiction vs. Faith
There are no superheroes, only us humans.
My kids had a Superheroes of the Bible book. I have problems with the book. I know the creators wanted to bridge the gap between ancient Biblical Hebrew characters and today’s fictional heroes. They created bright, shiny fictional caricatures instead of real people.
The Bible is full of real people walking in faith to do extraordinary and ordinary things. They were not superheroes. They struggled and sinned like the rest of us. The real truth bridging the “gap” was they needed God like the rest of us.
Josiah was an extraordinary boy. He was faithful without complaint during his eight weeks of radiation. He never complained about losing his hair on the back of his head. He needed God like the rest of us humans need God.
But hey, banging a gong is cool.
May we do our part and may God show us His power and strength to save more than just the day.