Ryland's Wheel: A Circle of Life
Inoperable cancer teaches Ryland Stout's family to balance treatment with helping him fully live his life
Ryland Stout had a difficult time coming into this world.
"He got stuck," recalls his mother, Jessica. The technical term is shoulder dystocia. "His shoulder was stuck on the pubic bone and he was a pretty big guy at 9.5 pounds with broad shoulders." The emergency birth required a team of health care professionals. After seven minutes Ryland was out, but he had no heartbeat and was not breathing. "They thought the lack of oxygen might cause significant impairment, possible seizures, cerebral palsy, or brain damage." But by the end of the day, everyone was calling Ryland "the miracle baby." It was a miracle: Ryland was perfectly normal and the only sign of his struggle for life was minor nerve strain in his arm. "Because the beginning had been so tenuous, we really cherished our time with him," Jessica says.
Jessica and her husband, Matt, enjoyed watching their children grow. Jane, their oldest, was five and just about to start kindergarten. She was a "phenomenal big sister" to Ryland, Jessica says. "And Ryland was vibrant and charming, sweet and funny. He always seemed beyond his years and had an old soul quality to him."
The worst case scenario: inoperable brain tumor
But in September 2011, less than three months after his second birthday, Ryland began showing signs of weakness in his arm. "It wasn't the arm he had problems with from his birth. It was the one I wasn't used to worrying about," his mother recalls. At the suggestion of their primary care doctor, Jessica and Matt took Ryland to CHaD for follow-up testing, including an MRI. "We didn't really expect anything too grave. At the time, the physician laid out some of the possibilities and he alluded to potentially something in the brain stem area, but that would have been the worst-case scenario."
In the early hours of the morning, the Stouts received the diagnosis: Ryland had an inoperable brain tumor, specifically a highly aggressive tumor known as a diffuse intrinsic pontine glioma (DIPG). Because of its location in the brainstem, and the likely risk of fatality or severe neurological damage, surgical removal was not an option.
Ryland stayed in the hospital for four nights. He had started showing signs of swallowing difficulty, which needed to be controlled, and had a port put in his chest for administration of medication. "There are few silver linings in these situations, but we did feel like we were in really good hands. Our primary doctor, Jack van Hoff, MD, was excellent. He knew his stuff and broke things down for us." As parents, Jessica says she and Matt were willing to try almost anything, "but we knew there was nothing curative we could do." Dr. van Hoff, section chief of CHaD's pediatric hematology/oncology, explained the limited options. "We were trying to weigh quality of life and extension of life considerations."
"We decided to go forward with the standard treatment for this type of tumor, radiation therapy. It was for six weeks, five days a week, October through part of November," Jessica says. "It tends to beat the tumor back for a time, and that's what happened for Ryland." Ryland was also put on steroids to reduce swelling around the tumor, which helped with the weakness and swallowing.
"By December," Jessica recalls, "he was really looking pretty good again. In November we had weaned him off of steroids. So, for a while we felt like we kind of got him back. It was a period of pseudo-normal, but psychologically you know it's anything but, because the future is still very grim. It's like walking around with a grand piano hanging over your head and never knowing when it's going to fall."
Through their journey, Jessica says, they tried different medications and participated in a vaccine trial. "We were walking a thin line between sacrificing his well-being and wanting him to live out the length of his life in as normal a way as possible. At the same time we wanted to give him the best shot at a longer life. So we went with the best information we had at the time. I think if we hadn't done the medical interventions we would have been looking back thinking ‘what if?' It's the hardest thing you could ever imagine going through."
Finding Strength in the Dark
How they got through it, Jessica says, was that "our family really pulled together. My parents, Walter and Betsy, helped to get us through. We were always close-knit; this only drew us closer. My sister, Natasha, and my in-laws, everybody rallied around Ryland."
Ryland's grandfather, Walter Horak, says, "It was the worst experience of my life, but along with that was an outpouring of love and concern from any number of people whether they were family or friends, or people who just kind of came out of the woodwork. Jessica was amazingly honest and strong about the whole thing, and she led the family through it. So along with this unfolding tragedy was this great demonstration of human beings at their best—when times are the most dark and difficult."
Walter, having been a sculptor all of his life, expressed his emotions through his work. "The inspiration came after Ryland was diagnosed. It occurred to me that here was this funny, wise little man in a little boy's body, who loved tractors and wheeled-vehicles of all kinds, and it was this large circle of concerned people—so on both levels the idea of a wheel of figures began to take on a real resonance with me, and the title, Ryland's Wheel, really took hold and the piece had a real purpose."
"Throughout my life, Dad has always been a talented artist," says Jessica. "One of my most cherished memories is of watching him work and make beautiful things. I had expected to see a tortured image, because we had been through so much pain and suffering, but to see him produce something so beautiful out of such a painful place was very moving to me
An Expression of Grief and Gratitude
It was in May, Jessica remembers, when once again she saws signs of weakness in Ryland's arms and gait. In June, while playing, Ryland tripped and broke his leg. "That moment kind of ushered in the next chapter. He was in a cast, but we were still hopeful he would get the cast off and be able to walk again." But in six weeks, when it came off, the tumor had progressed to a point that Ryland could no longer walk. Soon after, they entered a palliative phase. "We had hospice coming to the house at the time helping us to manage his needs. September was the start of his steep decline, and he passed away at home – which is what we wanted for him – on October 22, 2012."
In memory of his grandson, Horak donated Ryland's Wheel to CHaD. "This piece is a way of honoring Ryland's memory," says Horak, "and to have it be displayed at the hospital seemed to me the optimal place to do that. It's about the care he received there—the clinicians and oncology teams were outstanding every step of the way. First and foremost, it's a feeling of gratitude for the work they've done."
"My dad knows what CHaD meant to us," Jessica says. "You're kind of left with, ‘How can we express these feelings of gratitude best?,' and I think that was a beautiful way to do it and a way of leaving Ryland's mark, too. Hopefully, it provides some comfort to other families who find themselves there on the oncology floor. I'm hoping the piece can lend a little bit of positive imagery against all the other stuff you have to go through there. I can't imagine a better situation treatment-wise, given a horrible situation diagnosis-wise. Consistent with what we had gone through with Ryland's delivery two years earlier, CHaD was consistently compassionate and personal, and at the same time we felt like we were getting the best care possible."
The Circle of Life
The day after Ryland passed away, Jessica found out she was pregnant. "We had always envisioned a family that included siblings. It may sound emotional, but it was meaningful to me that the two brothers shared the planet even if it was only for a short time—and one was on the inside."
Silas was born June 28, 2013—three days after Ryland would have turned four years old. "Silas was born from this painful place, but he is this bright, happy, sociable little guy. Not a trace of any of that grief. It's just amazing to see. It's been wonderful to watch him and Jane bonding, and a lot of credit goes to Jane for maintaining such an open heart after everything she's been through."
Ryland Stout had a difficult time coming into this world. His family had a difficult time when he left it.
"From the beginning he had a spirit that rose above it all, he had a sort of wisdom beyond his years. There was a look in his eyes that was very deep and very knowing," recalls his mother. "I think I'll always wonder, was he this old soul that we could only have for a short time? I would do it all over in a second—all the pain and heartaches. I can't imagine my life without having known Ryland. I'm still convinced that he was someone extraordinary."By E. Senteio
June 02, 2014
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