Ryan’s Story
He bravely fought Leukemia, but his story is about so much more.
Ryan Maguire Turner was born on November 16, 1989.
The spunky brown-haired Ryan was the light of his mother Miriam’s life and the son that Shaun had dreamed of since his teenage years.
Shaun says, "I knew if I ever had a son his name would be Ryan, but I never imagined that one young boy would have the ability to change my life and the lives of others in so many ways."
Ryan’s Diagnosis
The heart-wrenching story of Ryan's illness began in December 1996. Shaun had been transferred by his employer in October, and the family was just settling into their new home at Thanksgiving. Ryan and Carly were making friends, and the family had started attending Fellowship Bible Church of Northwest Arkansas.
Around Christmas, Ryan developed a fever and flu-like symptoms that persisted into the new year despite multiple visits to the pediatrician and several rounds of antibiotics.
On January 12, 1997, doctors decided to draw a blood sample, thinking Ryan might have mononucleosis. The results looked suspicious, the blood counts were erratic, and by that evening, Shaun and Ryan were in Little Rock at Arkansas Children's Hospital where more tests would be performed over the next week. The initial diagnosis was frightening: acute myeloid leukemia.
Arkansas Children’s Hospital
The first two days at Arkansas Children's Hospital were mostly spent attempting to confirm the form of leukemia that Ryan had. There were numerous diagnostic procedures conducted and a major surgery to insert a catheter which would allow injections of medications directly into Ryan's system. The staff at this hospital was excellent and the care provided to Ryan was wonderful.
"Miriam and I were learning that this was going to be a very long process to recovery," Shaun said. Arkansas Children's Hospital was a five-hour drive from their new home. "At that time, we had little support, and we were considering our options to fight this battle with Ryan. We knew we were going to stay with him 100%, so we were looking at options for housing in the Little Rock area."
The first week was spent getting through the initial shock and making sure that Ryan was comfortable and not frightened. Despite all of the treatments and procedures, the family tried to have fun with Ryan by playing games and hanging things on the walls. "One of the first things we hung was a huge banner that his cousins made for him. Then cards and gifts started arriving from children Ryan had recently met at our new church."
Ryan had just seen the movie Space Jam and his parents gave him two soft characters, Bupkis and Bang, that would remain with him through his entire illness. More cards and gifts arrived from people in the family's new community and church, many of whom they had never met. "The outreach from family, friends and the Body of Christ was a true blessing," Shaun said. "Their love would only increase and sustain us through what was to come."
I will never leave you or forsake you
Doors immediately began to open for Ryan to go to one of the top cancer treatment hospitals in the country, and with the child very ill, Shaun and Miriam made the decision to take their son to the Lucile Packard Children's Hospital at Stanford University.
On January 19, Shaun put his son and wife on an air ambulance plane with a nurse and drove home from Little Rock. He went straight to his office and typed a letter to inform the church of Ryan’s illness. "We are at peace as we run through the doors God has opened for us," he wrote to friends and family.
With the letter completed, Shaun headed home and worked late into the night gathering as much video of Ryan quoting scripture as he could. "I wanted the network of churches here to have something on tape that could be circulated. I wanted them to see who they were praying for." Shaun and his daughters would leave for California the next day.
"As I was taking one of the tapes to Fellowship Bible Church, I thought back to the second weekend of December," Shaun remembered. "I was sitting in church reading my flyer, kind of tuning in and tuning out. I heard this person say that his son was extremely sick and they had taken him down to the hospital in Little Rock. That got my attention. I was thinking to myself, 'Man, am I ever thankful that I have a healthy family and that I'm blessed. I don't have to go through what this man is going through with his baby.' Three weeks later, there I was walking into Mickey Rapier's (worship pastor at Fellowship Bible Church) office and handing him a tape of my son who was desperately ill."
"We were knocked over," Miriam admitted. "We had only been in Arkansas for five weeks when everything started. We had few friends and no family here. We read scriptures constantly, going over and over the ones that said, 'I am here, I am with you, I'll never leave you or forsake you.'"
Lucile Packard Children’s Hospital
God proved himself faithful right from the beginning. Shaun's parents had recently moved to Florida, leaving a furnished house just 20 minutes from the hospital in Palo Alto. Shaun's sister Maureen relocated from Seattle to help care for Carly, 5, and her younger sister Natalie, 2. Miriam's parents, just three hours away, were able to visit often. Ryan responded almost immediately to the daily chemotherapy treatments.
"Those first few days at Packard were difficult as his blood and marrow samples indicated that Ryan might not have acute myeloid leukemia," Shaun said. "The doctors were telling us that it was definitely not your 'garden variety leukemia' which has excellent remission rates." More testing and consulting followed.
Lucile Packard Children's Hospital is a member of the Pediatric Oncology Group. The P.O.G. membership organization is a national cancer institute-supported clinical cooperative group consisting of more than 100 leading hospitals in the United States and internationally.
"In Ryan's case, when his initial diagnosis was difficult, his clinical data was transmitted throughout the entire P.O.G. system, so its members could evaluate and provide feedback as to potential treatment/therapy options, etc. The P.O.G. membership follows a designed "protocol" for treatment, which is based on the pooling of data from cancer patients within the entire P.O.G. system. It is the sharing of data between P.O.G. members (what has worked and what has not) that determines the best cancer therapies for optimum results.
A change in diagnosis
The decision was then made to change the type of catheter inserted into Ryan's system at Arkansas Children's Hospital, requiring yet another major surgery under general anesthesia. "The doctors were extremely concerned about infection as a result of this procedure, especially with his blood counts in such a depleted state." The surgery, however, was a success and Ryan responded almost immediately to the daily chemotherapy treatments.
Not long after his arrival at Lucile Packard Children's Hospital, Ryan's diagnosis was changed to acute lymphoblastic leukemia (ALL), "a significant and encouraging development," Shaun reported in his second letter on February 16. "The staff at Packard has been astounded at how Ryan has handled the entire process." The first phase of treatment had been successful and Shaun and Miriam were looking forward to Ryan's discharge from the hospital that July. Everything was working out so well.
Ryan's spirits remained high throughout the initial treatment. This despite the aggressive doses of chemotherapy he was given, which would deplete his system and blood counts, requiring regular blood transfusions. It was always a fine line between depleting his system of cancerous cells with chemotherapy, which was then followed by a race to see if normal cells would return and multiply. After the first lengthy hospitalization period, Ryan would be admitted for 3-5 days of treatments and then he would be discharged for several days until the next schedule of therapy was to begin.
On those days away from the hospital, the family would often spend time with Ryan's grandparents in Northern California. "Our days would be fun-filled as Ryan was only on oral medications when away from the hospital. Ryan loved to fly kites, play badminton and play games on the computer. We crammed as much fun as possible into these breaks whenever he was out of the hospital," Shaun said.
During one of these breaks in his therapy regimen, Ryan was given a private tour of the Monterey Aquarium, which he really enjoyed. On another break, Ryan was kissed by a Killer Whale at Marine World - Africa USA, which thrilled him immensely.
Resilience
He suffered few of the usual side effects associated with chemotherapy and never complained. "Actually he did have one complaint ... about the hospital food," Shaun said with a chuckle. "Too many scrambled eggs too often!" By April 27 when Shaun wrote his third update, Ryan had finished the "consolidation" phase of therapy and was ready to begin a precautionary two-month "second induction" round of treatments in mid-May. The doctors had declared Ryan medically in remission.
"Ryan's doctors continue to be very pleased with his progress and tolerance to the numerous medications," Shaun wrote. "We are all anxious and excited as we plan to return to Rogers in July!" He and Miriam had begun talking to doctors in Northwest Arkansas about Ryan's illness and were looking for a specialist in the area who would handle the "maintenance" phase of his therapy - a weekly injection for 18 months.
From January through August, Ryan had developed a wonderful relationship with the staff who cared for him at the hospital. "His positive attitude throughout his battle was incredible," Shaun said. "Of course, there were other children and parents going through the same situation that we were not focused on. I guess all I can say is that the treatment for this disease while in the hospital is filled with continuous monitoring, blood draws, injections of medications, transfusions, doses of oral medications, temperature and vital sign checks, etc. Ryan literally had someone from the hospital staff at his bedside at least every hour, day and night. When his fevers were severe, the contact from his caregivers increased significantly."
"The only time Ryan became concerned was when he had to have an injection. Most of his medications were given through the catheter in his chest. But there were times when shots were required to complement the effects of the other medications. Outside of those times, Ryan was resilient beyond belief."
A short remission
"The caregivers were always conscientious of trying not to disturb Ryan or us when we were resting. When you spend eight months in close proximity to people who you know care about your child, you develop close friendships and bonds. The staff at the hospital made our situation as best as it could have been, given the circumstances we were in. However, the faith Ryan demonstrated, his character and his constitution also sustained many of his caregivers. I know he has touched many of them to this day, and his memory will live on in them. His pictures are still up on their bulletin board. Ryan was extremely unique in how he battled against this disease."
In late May, Ryan’s parents had a weekend of fun planned for him and his sisters. On May 31, Shaun took Ryan on a father-son outing to see "The Lost World", and the entire family went to an amusement park the following day. "It was a great weekend filled with fantastic memories," Shaun remembered.
On Monday, June 2, Ryan developed a rash and was back in the hospital. Four days later he had relapsed. The leukemia was back.
Making light of hard times
During Ryan's first stay at Packard, his parents decorated his hospital room with a Looney Tunes Space Jam motif. "Everybody loved it because it was happy," his father said, flipping through photos of Ryan with wildly colored characters decorating the hospital walls around him. After Ryan relapsed and was facing another extended stay in the hospital, he wanted a Lost World theme, so "everything was dinosaurs and spiders," Shaun said. (more details here). "We made it light. Our goal was to do everything we could to keep his spirits up and motivate him," Shaun said.
His father added, "By now, Ryan liked playing with a large plastic tarantula spider. Whenever he left his room to go down for a CT scan or an x-ray in a wheelchair, he would take the tarantula. On top of a Space Jam blanket covering him would be cute little Bupkis and Bang and hidden underneath the blanket was this nasty looking spider. The nurses would lift up the blanket for the procedure and it would really give them a jolt. Or we would hang a plastic snake in a tree by the fountain, watching the reaction of people from afar as they came across the snake. Ryan would be sure to tell the people in advance if there was a child or a patient coming along. He was often thinking about other people and not himself. Lots of times Ryan would take along a Nerf gun and shoot at the spider or objects around the hospital, in the bathtub or up on the roof watching the helicopters come and go."
New encouragement
Notes of encouragement and autographed pictures poured in from people like actor Arnold Schwarzenegger, NASCAR race driver Jeff Gordon and radio personality Dr. Laura Schlesinger. Those went up on the walls as well. Schwarzenegger also delighted Ryan with a telephone call.
Despite the setback, Ryan and his family continued to trust in God. They learned to pray and trust in the promises of God like never before. With plans for a bone marrow transplant now looming, Shaun and Miriam prayed fervently for four things: identification of an optimal bone marrow donor; a successful bone marrow transplant and recovery; a successful remission which had to occur before a transplant could take place; and for God's wisdom to guide the medical staff treating Ryan.
The increased medication following his relapse began to take its toll on little Ryan. Shaun and Miriam talked to their son many times about the chemotherapy he would be given. "We were always positive, always optimistic. I would always tell him, 'When you get through this, we're going to have so much fun it's going to make you sick.'" He knew that many cancer patients lost most, if not all, of their hair. "We told him that we didn't know if he would lose his hair or not, but that it really wasn't such a big deal if he did," Miriam reflected. Shaun promised his little boy, "if your hair falls out, Dad's gonna lose his hair too. We were trying to get across that hair is not important, it grows back."
True to his word, when the boy's hair began to thin in July, Shaun visited a nearby barber. A male nurse, Ted Sloniker, who had grown extremely fond of Ryan also shaved his head.
Scripture memorization
As his physical strength waned, Ryan demonstrated extraordinary spiritual power. Just days after his relapse, a young boy on Ryan's floor passed away. Ryan's reaction to the news of the boy's death surprised everyone. "What a wonderful thing!" he told Shaun and Ted. "He's in heaven. I can't wait to get there, too!"
On June 15, Shaun penned these words to those standing in prayer for his son: "We are confident that God's plan for Ryan remains etched in His hands and that a greater good will be realized through this. We pray that Ryan's testimony can be used for God's glory throughout this experience and for a lifetime."
That summer, Shaun would make an occasional trip to Rogers to take care of matters at work and home. When Ryan was doing well, Shaun would at times stay through Sunday. Fellowship Bible Church services became an anchor to help him stay afloat. "I would go into the church on Sunday and I would just bawl my head off for the whole service. After the service I would find Mickey and give him an update on Ryan." As soon as the service ended, Shaun was back on a plane bound for California.
June 15 was a significant date for Ryan, because on that day he recited another poem, "I Will Not Doubt" for the first time. The verse, written by Annie Johnson Flint, speaks of a faith that continues through broken dreams, shattered hopes, and sorrows falling like rain. It was a poem that brought him immense comfort as his young life came to an end.
With another poem added to his repertoire, Ryan set his mind on committing Psalm 91 to memory. Each day, Shaun and Miriam would sit by Ryan's side and read the comforting words to him. Each day, Ryan would find the energy to learn another phrase.
“We were really rocked”
Ryan savored every opportunity to share a scripture verse or a poem with those who cared for him. "Doctors would come in ... the room's totally decorated now with dinosaurs, spiders and snakes, he hasn't left the hospital in a month and he's sicker than sick. They walk in and he wants to share a scripture with them or 'Blue Skies'. He shared 'Blue Skies' so much," Shaun reflected.
In fairness to her son, Miriam changed the subject to talk about Ryan's sense of humor. The couple laughed as they remembered the mischievous acts for which he was known by the hospital staff. "It wasn't all serious," she noted. "Ryan loved Nerf guns. He had all kinds and would hide them under his bed, and when somebody came into his hospital room, he'd bean 'em."
"And not just anywhere," said Shaun. "He would wait till they turned and he'd get them right in the rear. He was fun."
"He'd be sharing a scripture and they'd say, 'Oh, that's really great,' and then he would say, 'Hah!' and shoot them," Miriam continued. "He was a really funny kid."
In July and after a month of being in the hospital, his parents were encouraged by what they saw. Their son, who had been so ill from the disease and the massive doses of chemotherapy, was beginning to look and feel better. They were completely unprepared for the frightening news that was to come.
"The doctors told us that we were down to miracle time and that it was time to start talking about whether we wanted a DNR (do not resuscitate) order," Miriam reflected. "We could not believe it. Ryan was sitting up and looking so good."
"It was so easy the first time," she continued. "They gave him the drugs and he went into remission. When he relapsed, we thought, 'OK, we'll just do this again, more drugs, higher doses.' The doctors explained that although Ryan appeared to be improving, they weren't seeing significant improvements in his white blood cell count. "We were really rocked," Miriam said.
Pennies in the fountain
Amid the sadness, there were moments of joy for the family. Out for a walk one afternoon, Ryan noticed a few coins lying in the bottom of a fountain. "Hey, there are pennies in there!" he exclaimed to his mother. There was a long, thoughtful pause before he asked, "Do you think I could get those?"
"We left those pennies there, but that gave me an idea," Miriam said. I told him, "'You know what? Let's take a walk every day and whatever money is there, it's ours. OK?'" He thought it was a great idea. From that day on, Ryan would remind his mother daily, "Hey, let's go down to the fountain and see what's there." It motivated all of us. Just to take him for a walk was great for Ryan and for all who had come to know him at the hospital.
Miriam smiled as she remembered the gleeful moments when Ryan would make "chance" discoveries during his afternoon visits to the fountain. "Shaun would go down ahead of me and dump quarters, bracelets, dinosaurs, whatever. Shaun's sister would get a Zip-Lock bag and leave a couple of dollars floating in the water. Ryan was so excited and never knew we were setting him up."
"It broke our hearts that he was becoming so tired," she said. "Some days we'd have to wheel him to the fountain, pulling a pole loaded with medication pumps. He would look over and we'd have to get the money for him."
Growing weary
Summer was passing, and the leukemia (which by then had been determined to be undifferentiated ALL, an extremely rare form of the disease) was progressing. Ryan's doctors discovered not only that the second round of chemotherapy had not put him in remission but also that a fungus had invaded the child's lungs and liver. In Shaun's fourth update dated July 20, he informed friends and family that despite the fact that Ryan had not gone into remission, the search for a bone marrow donor was still on and that two people had already been tested to be perfect matches. "The next six weeks will determine if God's plan for Ryan is to recover from this disease," Shaun wrote, pleading with fellow believers to "keep the heat on in prayer" for Ryan.
As August approached, Shaun and Miriam felt themselves growing weary as Ryan was never discharged from the hospital. "Neither of us was getting any sleep," said Shaun. "There were times when Ryan's fevers were so high and we couldn't get them down," Miriam remembered. "He'd be under a cooling blanket, freezing, wanting a warm blanket and we couldn't get him one. We'd just crawl in bed with him and he'd be up all night ... so that meant that we were up all night.
In the morning, I would call Shaun to tell him how the night went and then we'd shift. I would go home and sleep all morning."
Around the beginning of August, Ryan began having nosebleeds that wouldn't stop. His platelets were so low that no clotting could occur. Blood would enter his stomach and he would vomit. "That went on for a day and a half. Every fifteen minutes he would sit up and yell "Mom!' and I would grab for the basin," Miriam said.
Shaun feared that his wife was breaking down physically and emotionally. "There was a time where I didn't know if Miriam would make it." At one point, having gone without sleep for several days, she collapsed, requiring medical treatment at the hospital.
Faith over fear
"We were praying and hanging onto God's promises, but it didn't really matter what the outcome was. Even though we knew God could heal him, we never promised Ryan that he would be healed," stated Miriam. "We were positive and very optimistic, but Shaun and I had times where we would sit with Ryan and say, 'You know, some kids with this disease don't survive. And what's the worst thing that happens?' To which Ryan replied, 'They get to go to heaven before everybody else does.' To make sure there was no fear for Ryan was important for us."
Shaun recalled a hot August afternoon when he and Ryan had a conversation about salvation while eating Gummy Bears. "He knew he was a saved young man," Shaun asserted. "You could see it in his face. He had a foundation, and he knew he had nothing to be afraid of." Shaun had used the example of a balloon filled with air throughout Ryan's illness to demonstrate God's power. "I would blow up a balloon and say, 'Just like air, God is there. You can't see the air, but it is there and it has power.' Then I would let the balloon go, demonstrating the power of the air that could not be seen as the balloon flew wildly around the room."
The days prior to August 14 had been filled with prayer as what the Turners understood to be the last option for chemotherapy treatment was being given to Ryan. He was receiving respiratory therapy treatments twice daily, and his parents waited hopefully for the child's blood counts to rebound, an initial sign that the treatments were having a positive effect.
Earnest prayers
"I will never forget the evening we had together on August 14," Shaun said. "Ryan was in good spirits. Miriam, her mother Marcia, and my sister Maureen and I were having dinner with Ryan as we always did. We watched a movie together, and as we were getting ready to pray with Ryan and put him to bed, Marcia began singing beautiful hymns to Ryan. The staff was coming in and out as usual, and this beautiful, peaceful voice was filling our room."
They prayed with Ryan, and as the others left to go home, Shaun began to play a tape of classical music they had just received. "I had never played it before, but it also was beautiful as I tucked Ryan in and we fell asleep."
On August 15, Ryan woke up in his hospital room at 2 a.m. He asked for a cup of noodles, and he and his father watched the movie "Teenaged Mutant Ninja Turtles" until the two of them fell asleep once again. Shaun can still remember lying in the darkened room. "Just like air," he said as he had done many times before, and Ryan finished the sentence, "God is there."
Later that morning, Shaun spent some time in prayer. "I was praying for two things. On the one hand, I was asking God for an outright healing to astound the medical community. But on the other hand, I was also praying for God's will to be done whatever that might be."
"I took Ryan's yellow snack ticket for that day and on the back I wrote out a specific praise that I was in earnest prayer for. I had never done this before and I started by writing the praise, thanking God for outright healing to astound the medical community. Ryan was in such a difficult medical condition, I knew that if he were to attain a complete recovery, it would gain widespread attention. I also listed ten specific medical hurdles that had to be overcome if Ryan was going to be cured of the disease. I remember praying fervently in acknowledgment of these requests at his bedside. I did not know as I was praying in support of this tiny piece of yellow paper that Ryan would indeed be "whole" again with Christ in less than one hour."
Finally at peace
During breakfast, Shaun took the opportunity to read aloud the now-familiar words of Psalm 91 (NKJV) one more time. Ryan had most of the chapter memorized and listened intently as his father began slowly, "He that dwelleth in the secret place of the most High shall abide under the shadow of the Almighty ... Thou shalt not be afraid for the terror by night; nor for the arrow that flieth by day ... Because thou hast made the Lord, which is my refuge, even the most High, thy habitation; There shall no evil befall thee, neither shall any plague come nigh thy dwelling. For he shall give his angels charge over thee, to keep thee in all thy ways ... He shall call upon me, and I will answer him. I will be with him in trouble; I will deliver him, and honour him. With long life will I satisfy him, and shew him my salvation."
When Miriam called around 9 a.m., Shaun told her of the previous evening's events. "Come on down," he told her, and began getting ready for their morning "shift change." While his wife made the 20-minute drive to the hospital, a respiratory therapist began working with Ryan. Shaun was there and began to notice a change come over his son. "He was resting and he started to fail," Shaun recalled. "But there was no fear at all. What I saw was complete peace, complete comfort." He paused for a moment "I had the honor of holding Ryan in my arms as he peacefully went to sleep, knowing that the next face he saw was the face of God."
"There were three things going through my mind at that moment. The first was, 'Go, buddy, go!' because he had suffered and it was time for the pain to end. The second was, 'God's will be done,' and the third was, 'God, heal him. Raise him up. Make him whole again.' When it became clear that was not going to happen, a complete and powerful peace came over me."
Ryan Maguire Turner was laid to rest in Colville, Washington, on August 21, 1997. During the celebration of his life, Shaun addressed the gathering of friends and family members.
"God's choices are always perfect," he told them and read the words of Lamentations 3:22-24, a passage that had helped him greatly. "It is of the Lord's mercies that we are not consumed, because his compassions fail not. They are new every morning; great is thy faithfulness. The Lord is my portion, saith my soul; therefore will I hope in him."
Written by Sheryl Potter
Copyright, 1998 Horizon Magazine, Fellowship Bible Church of Northwest Arkansas. Reprinted by permission.
I will not doubt; well anchored is this faith,
Like some staunch ship, my soul braves every gale,
So strong its courage that it will not fail
To breast the mighty unknown sea of Death.
Oh, may I cry when body parts with spirit,
I do not doubt, so listening worlds may hear it,
With my last breath.
— ELLA WHEELER WILCOX