By T.R. Robertson
In the summer of 2012, Nathan and Amy Tuley publicly announced they felt God was calling them to full-time ministry. Over the preceding months, all the details had begun falling into place for Nathan to put his information technology training to work for Pioneer Bible Translators.
And then, that September, they heard the words that rearranged their lives, “Your son has a brain tumor.”
The Tuleys were taking back-to-school pictures, with all four of their kids lined up. Looking at the photos, they noticed 10-month-old Josiah was always tilting his head slightly and looking up at an angle, squinting. Within a few days, the squint was accompanied by a twitch in his eye.
A visit to an eye doctor led to an MRI on September 27. The MRI revealed a tumor, about the size of a large egg, in the center of Josiah’s brain. He needed surgery.
The six days between the diagnosis and the surgery were long.
“It was during that time that we had to fully surrender to God’s will,” Amy says. “We talked. We prayed. We cried. We pleaded for God to allow us to keep our son, but remained at peace, even knowing he could be taken from us in the days ahead. When I finally made it to sleep, I slept well. Each morning I would wake up, feeling like I had awakened from a nightmare, only to realize it was reality, and one day closer to the day that would change our lives forever.”
On October 3, Josiah underwent 14 hours of surgery. Because the tumor was wrapped around a major artery, the surgeons were able to remove only 97 percent of it. During the surgery, Josiah suffered a brain bleed—a mild stroke—that caused his right side to become mostly paralyzed. His pituitary gland was damaged by the tumor, so he will need hormone supplements the rest of his life.
Josiah was in the hospital for 28 days, some good and some bad. At his young age, Josiah’s primary memory of that place is of the pancakes he ate there.
Four months later, a follow-up MRI showed the tumor remnant had doubled in size since the initial surgery. Thus began 16 months of chemotherapy.
Freedom to Rely on God
On the Sunday morning following Josiah’s initial diagnosis, the Tuleys carried a crushing weight in their hearts as they walked into Capital West Christian Church in Jefferson City, Missouri.
During the invitation hymn at the end of the first service, they walked forward and were greeted by associate minister Rick Yoder. After they shared Josiah’s diagnosis with the congregation, the elders circled the Tuley family, and Yoder anointed Josiah’s head with oil.
“Then we prayed,” says Nathan. “We prayed as a church, as a body of believers, as a family. We prayed with confidence, knowing God would be glorified. Knowing God had a plan, and he was in control.”
When the prayers were done, people formed a line and took turns embracing them, encouraging them, and crying with them. The anointing and prayers and tears were repeated at the conclusion of the second service. Another prayer gathering was held the night before Josiah’s surgery.
For Nathan and Amy, that corporate prayer and anointing stands out among the many things the church has done for them.
“As I shared and cried with those who loved me, a weight was lifted,” Amy wrote on their blog (tuleys.com). “It didn’t matter who was looking. Sharing our story gave me immediate freedom. Freedom to be me. Freedom to be real. Freedom to cry and show that I cannot do this by myself. Freedom in being able to fully rely on God, who has been faithful and will continue to be faithful.”
Overwhelmed by the Response
Two days after the diagnosis, Nathan confessed he was overwhelmed. There was much on his mind: the endless meetings with doctors, the flood of medical information to process, the logistics of dealing with the daily needs of life while also trying to handle this new challenge.
But Nathan was also overwhelmed by the response from the people around them. He estimates within a couple of days the news had gone out to hundreds, if not thousands, via prayer chains, social media, and word of mouth.
The Tuleys list prayer as the most important thing people did for them.
“There were days I know I was carried in prayer,” says Amy. “I felt it. And I felt the days I needed more. I know it’s a common phrase to just tell someone, ‘I’m praying for you,’ and it doesn’t feel like enough. But most days, it’s all I need.”
The Tuleys received so many offers for help and questions of “what do you need?” that a friend of the family took over coordinating the offers for help. The management of volunteer help was especially important when it came to communicating specific needs, such as dietary restrictions for donated meals.
“It was much easier to give my friend a list of things that were needed, and she took care of all the details,” says Amy. “When someone would ask what we needed, I’d refer them to my friend, freeing up time for me to be at the hospital, where I needed to be. This was a huge weight off my shoulders.”
They cherished the encouragement they received from even a brief lunchtime visit at the hospital. The only day during the hospital stay when they didn’t have visitors was on the day they went home.
They also appreciated the extra effort people took to include their other children, inviting them to play at the park or to do other special activities with friends of the family. Their daughter’s 8th birthday was five days after Josiah’s surgery, and they were still in the hospital.
“Our children’s minister brought a party to her at the hospital,” Amy says. “Cake, balloons, and presents. Other friends came into our home and allowed her to have the sleepover birthday party that had been previously planned, that we thought we would have to cancel. When we told her before the surgery we weren’t sure what the plans would be for her birthday, she was in tears. But because people were willing to step in and help, she had a wonderful birthday.”
Nathan and Amy were also given opportunities to have time alone and time together as a couple. They knew many marriages don’t survive after the diagnosis of a seriously sick child. With the help of others, they were able to work on growing closer together in the midst of the stress.
“I’m reminded of the marriage triangle,” says Nathan, “where God is at the top and each spouse is at the bottom. As Amy and I drew closer to God during this time, ultimately we grew closer together.”
The Tuleys are also thankful people have continued to be there for the family, even after the surgery and the initial crisis time was past.
“It’s wonderful to know I can still call on the people who offered to help two years ago,” Amy says, “and they’ll help with anything I may need. And many still offer to help, which is such an encouragement, knowing they’re with us for the long haul.”
God Had Other Plans
Months later, in a sermon delivered at CWCC, Nathan confessed, “When we prayed, when we pleaded with God, we begged him for complete healing. We prayed that if the tumor were to grow back, and Josiah had to have chemo, that God would take him home. After countless hours of wrestling with the reality that we could lose our son, we were at peace. We had given Josiah to God. We knew that for Josiah, to die was gain. We couldn’t bear the thought of him having to struggle through chemo, to struggle for life at such an early age.
“But God had other plans for us. God felt it was more necessary for me, for the doctors, the nurses, the other patients, the countless lives that have been touched . . . it was more necessary that Josiah remain in the body.”
“The Tuley family has been a great inspiration to many during this difficult time,” says CWCC’s Yoder. “It’s been interesting to see how each obstacle that has come up, God has used the Tuley family to interact with countless families, nurses, and doctors.”
“One of the benefits for our church family,” adds Yoder, “has been learning that God answers prayer in ways that bring glory to him, and not always in the way we want, but his ways are so much better. Every time I see that little guy, I am reminded that God does answer prayer. I love watching Josiah grow, learn, walk, and play as he reminds me always of God’s power in prayer.”
“Literally thousands of people all over the world have been brought together to seek God on our behalf, specifically children,” says Nathan. “Even today, kids are still insistent that they pray for Josiah every day.”
Today, Nathan is working for Carfax as a product services manager, a job that pays him well, and provides flexibility and the excellent level of health care benefits their family now requires.
That job also enables him to work with a team of IT professionals that includes two fellow alumni of the Mizzou Christian Campus House, Scott and Luke. The three of them have formed a team to provide web development assistance for Pioneer Bible Translators during their free time.
“We’ve taken two trips to Dallas to meet with them and discuss their needs and how best we can serve them,” Nathan says. “It was during our first trip and the 10-hour drive down that Scott and I talked about faith and baptism. A few weeks later I had the honor to baptize Scott!”
God always has a plan.
T.R. Robertson is a business technology analyst with the University of Missouri in Columbia.