My 4 year old son got brain cancer. But God isn't to blame
After receiving devastating news about her son’s health, Jessica Kelley couldn’t stomach the usual Christian clichés about God’s role in suffering. She tells Sam Hailes her story
The question of how an all-powerful, all-knowing and all-loving God could allow suffering has dogged philosophers and theologians for centuries. But for Jessica Kelley, this issue is not just theoretical. In 2012 she and her husband, Ian, watched helplessly as their 4-year-old son Henry was diagnosed with brain cancer.
It was winter in Minnesota when Henry started to catch a lot of colds. Jessica assumed her young child just needed to get through the cold season.
“Then he started getting a lot of ear infections. But a lot of kids do. We gave him antibiotics to clear up the ear infection but then we noticed he was losing his appetite and not gaining weight. But he was still in average range. Then he started to get moody, but we thought when you’re sick and on antibiotics it makes sense that you’re more temperamental. Then he had what we thought were stomach viruses. We thought we can’t catch a break, we’ve got to get him healthy and get to spring.”
As weeks and months went by, Jessica’s concern for her son’s health grew, but the doctors weren’t worried. When Henry started to tremble and Jessica called the paediatrician, it was a different story. “I’d never seen them move so quickly,” she remembers.
Recalling their visit to the doctors, Jessica says, “Henry looked his sweet little self – there was nothing alarming about him. The doctor said, ‘What do you mean, he’s trembling?’ Henry tried to step up on the stool [in the doctor’s office] and he couldn’t because his legs were shaking. I had to grab him and support him. That’s when a lump came into my throat because the doctor could tell this was serious.”
Within days, the situation had worsened. “The trembling was so intense. He had deteriorated to where he couldn’t even keep up with his 2-year-old sister. It was heartbreaking seeing his innocence in the midst of his body betraying him.”
Praying for a miracle
When the chief neurosurgeon at the children’s hospital asked to urgently meet with Jessica and Ian, they knew things weren’t looking good.
“All of this is tumour,” the neurosurgeon said, pointing at an scan of Henry’s brain.
Jessica was in shock. She had no previous experience of brain cancer, but was comforted to be surrounded by doctors who said they would intervene and make her son well.
Henry was admitted immediately. A small hole was drilled in his skull so that cerebrospinal fluids could be drained, relieving the pressure. The next step was to schedule surgery to remove what everyone hoped was a benign (rather than malignant) tumour. Prayer was mobilised and Jessica says everyone was hoping, thinking and praying the doctors would say, “We got it all, it’s benign.”
Jessica’s voice cracks as she remembers the emotions her family went through on the day of Henry’s surgery: “All day long we were nervous and praying and supporting each other. We were getting hourly phone calls updating us on the brain surgery, but every time it was very calm and neutral.”
After eight hours, the operation was finally over. The surgeon met with Jessica and Ian privately to tell them the news, while the extended family waited expectantly outside. Through tears Jessica recalls how she had to tell her family and closest friends who had come to the hospital with them what had happened.
“It was like I could hear them [our family and friends] in their heads saying, ‘They got it all, it’s benign. They got it all, it’s benign…’ I was looking at this tile straight in front of me. I thought if I never look up from this tile I won’t ever have to tell them that they didn’t get it all. That they got 50 per cent. And then he started haemorrhaging and lost three litres of blood – enough to fill his body. They had to close him up and save him through a blood transfusion. But they didn’t get it all and it’s not benign. It’s highly aggressive, rare and malignant.”
God isn’t designing my pain
Because of Henry’s age, options were extremely limited. A highly aggressive and experimental treatment was offered. But Henry's chances of surviving this "gruelling" treatment were extremely low. The only alternative was inpatient rehab therapy to make him well enough to return home and receive hospice care there. The couple prayed and talked with experts. Finally they made their decision.
When Jessica and Ian told the neurosurgeon they wanted to take Henry home with them and not opt for the experimental treatment, the doctor replied, “I wish I could disagree with you and tell you to fight…but I can’t. I would want the same thing. What you’re doing is allowing him to have dignity and the comfort and peace of being home with his family in the months that are left.”
Thinking about heaven
The family took Henry home and lovingly cared for him. In the final weeks of his life, thoughts turned to heaven.
“There was a moment when he was in so much pain and I remember praying and saying, ‘God, just take him if his life is going to be like this. Don’t allow him to suffer anymore.’ That’s a pretty desperate place to be as a mum. But then I thought, ‘No, I haven’t taught him enough! What if he arrives in heaven and doesn’t know Jesus?’ You go through some silly things in your head.
“I remember praying over his bedside and pouring out my heart to Jesus. I had this image that came to me in prayer. Henry was with a group of people and he turned and saw Jesus smiling at him. And Henry’s face lit up with recognition before he ran into his arms. I felt like the message I was given was: ‘Henry will know me because he’ll know the love you gave him when he was yours. He’ll recognise that love when he comes.’ From that moment I felt at peace allowing him to make that transition from earth to eternity, knowing that he understood love and would recognise love. “I remember talking to him and saying, ‘You’re going to have no pain in heaven and you’re going to be able to run and play and Jesus will take good care of you.’”
Eight weeks after being taken home from hospital, Henry passed away.
Two views on suffering
For most of her life, Jessica had been taught what she calls the “blueprint view” of why God allows suffering. According to this understanding, God wills everything that happens, history is a working out of his meticulous divine blueprint and there’s a specific good behind even the most extreme suffering. She says this theology is expressed in clichés such as ‘everything happens for a reason'.
My crisis wasn’t compounded by a crisis of faith
Long before Henry’s diagnosis, Jessica began to question this traditional view of God’s role in suffering. As she listened to podcasts of Greg Boyd’s (Senior pastor at Woodland Hills Church in Minnesota) sermons, she heard another view expressed which she calls the ‘warfare view’. This theory posits that God is not the only force in the universe and all evil originates in wills other than God. Suffering is therefore ultimately caused by Satan, and not God.
Jessica spent many months listening to and considering both of these positions. After a twoyear period of wrestling with these opposing ideas and looking at relevant biblical verses, she landed on the warfare view, explaining it made her mind and heart line up with each other.
As Jessica explains, “To think God isn’t designing my pain but rather doing everything possible to maximise good and minimise evil within the constraints of the world he created – that’s exciting!”
Jessica had already adopted this warfare view before Henry’s health deteriorated. She says it made a tremendous difference. It may have even saved her faith.
“It was unbelievably freeing to walk through this nightmare and not say, ‘Am I being tested, taught a lesson or punished?’ I didn’t have to think this person we love and trust would cause a nightmare in our lives. I didn’t have to feel betrayed by God in the midst of this horrible event. So my crisis wasn’t compounded by a crisis of faith.
“It was incredibly freeing to know when we saw beautiful things happen, when people were coming to the house with casseroles and gifts – we could say, ‘This is from God. God is doing everything possible to maximise good.’ And when we saw our son suffer and the pain and death, I could say ‘this is not from God'. That meant I could maintain a passionate faith in the midst of such terrible loss.”
In her book Lord Willing? Jessica tells the story of Henry’s illness and death along with an explanation of her theology. She says it was written to help people wrestle with their view of suffering before tragedy occurs.
Her message is simple: “If we choose to wrestle today with God’s role in suffering, our faith is better prepared for tomorrow’s pain.”