Jaisyn’s room is tucked quietly toward the back of his house. There is a large picture of Jaisyn, dressed in his football gear and an infectious smile, hanging on the wall. Star Wars items dot his shelves, including a fully functioning light saber. Taekwondo awards show his dedication and skill and his black belt achievement. It’s such a warm and inviting space, a teenager’s true sanctuary. It was Jaisyn’s favorite place to be – home. It was where he was able to spend his last moments with his precious family and where they continue to spend time – feeling a bit closer to him in his beloved space. 

When an active young kid, especially a jokester like Jaisyn, complains of odd changes, it’s easy to explain them away. It was December 2019 when Jaisyn Reese began complaining about left-sided face numbness. “’Mom, I can’t feel my face,’” Angie, Jaisyn’s mother recalled him saying. “Well, that’s weird,” she responded. “We’ll keep an eye on it.” Then he complained about his eyes crossing and it was easy to just dismiss it as his silly way to make his family laugh. But when the symptoms continued to worsen throughout the month, it was evident something more was going on. As concerns about COVID-19 increased, they asked if that was causing his issues. It wasn’t that. Later, during a school day, Jaisyn called his mom and told her he almost fell down the stairs. “I’m dizzy and I have a headache,” Angie recalled him saying. She picked him up from school and took him to the doctor. He scheduled an MRI and Angie remembered him saying, “He could have migraines, he could have a viral infection or worst case, it could be a tumor.” A few days later, while they waited for the MRI, Jaisyn began vomiting and his headache worsened. Although she was already dressed for work, Angie’s boss encouraged her to take Jaisyn in right away instead of waiting for the scheduled MRI. She headed to Bremen, and after much encouragement, his MRI was transferred there. Angie sat alone with Jaisyn while she heard the news. There’s no preparation for such news. Our minds don’t land on the worst-case scenario initially, and this was not the first time Jaisyn had been to the ER. “There is a mass,” the doctor said. Angie looked at him, and the tears began. 

Jaisyn was eventually diagnosed with DIPG, diffuse intrinsic pontine glioma. According to St. Jude Children’s Research Hospital, “DIPG is a type of tumor that starts in the brain stem, the part of the brain just above the back of the neck and connected to the spine. The brain stem controls breathing, heart rate and the nerves and muscles that help us see, hear, walk, talk and eat. These tumors are called gliomas because they grow from glial cells, a type of supportive cell in the brain.” Symptoms of DIPG include problems with balance and walking, nausea and vomiting, headaches and problems with the eyes — all of which Jaisyn experienced. Treatment is radiation and sometimes chemotherapy. Surgery can be done for biopsy, but surgery to remove the tumor is very rare. “Unfortunately, the survival rate for DIPG remains very low. At this time there is no cure for this tumor,” St. Jude noted.

Life for the Reese family changed drastically – living out of suitcases, driving across states and filling their schedules with medical appointments that replaced the previous busyness of school and extra-curricular activities. “Two days before we were supposed to go back down to Indy, St. Jude’s called,” Angie said. “We talked with the doctors there, and they said they wanted to take him, but we had to do radiation there.” They arrived at St. Jude’s the end of January 2020. After a 10-hour drive, they got there at 7pm and were assigned a navigator to show them around. “It was so overwhelming,” Angie remembered. “I cried the entire time we were there.” They soon realized that they would be staying there for the duration of his radiation – six weeks. The Reese family was thoroughly appreciative that they could stay in a suite together – Angie, Emanuel (Jaisyn’s father), Angie’s father and Jaisyn. Everything, including meals, was covered. Touring St. Jude’s made a deep impression on Angie. “There were kids from all countries … everywhere,” she said. “The thing was … they were smiling. Everyone in their lifetime should walk into that hospital.” 

The summer was filled with a lot of swimming. “Anytime he wanted to go swimming, he went swimming,” Angie shared. “He was just swimming away, like nothing was even wrong with him.” Make-a-Wish was contacted and Jaisyn really wanted a trip to Disney. “They had all of that planned for us after radiation in April. The plane tickets were bought, and everything was set, but they couldn’t do it because of COVID.” Jaisyn had to come up with another wish. He didn’t want a shopping spree – he didn’t want “things.” He wanted experiences. Make-a-Wish ended up buying him a camper, which they used to stay at Horn Lake in Mississippi, about 15 minutes from St. Jude’s. 

While the family was doing their best to fill every moment with experiences and life, DIPG was an annoying sidekick, inserting itself with painful symptoms and frequent blood work appointments. Jaisyn’s desire to be with family and to fight was evident in how he faced his treatments. “He did all of his MRIs and all of his radiation non-sedated,” his mom glowed proudly. “He knew the risk of being put to sleep and being sedated. There was a huge risk because of the tumor that he would not come out of it. He didn’t want to do that… I was so proud of him.” 

Much of the support that the family received was from fellow families in similar situations. They met many people who are friends to this day. One of those was a Facebook friend who Angie eventually met in person outside the hospital one day. She spoke to Angie moments before they had to take her son off a ventilator. He had been fighting for a couple years. She told Angie, “I’m going to go in here with grace and do what God needs me to do.” Angie remembered these words, wondering how the woman ever had the strength to do that. Angie thanked her for those words right before Jaisyn died. 

“I remember his mom doing such a fantastic job of pursuing his care,” Eash, a CHC nurse practitioner, reflected. “I wanted to be the one to take care of him,” Angie said. “That’s what I did for a living, and I wanted to do it as long as I could.” The time came when she was so weary, she called for extra help. “At 4:00am I called and said I can’t do it anymore,” Angie remembered. “I need you to come. Tiffany and Stacy were here all day, until the end.” The morning that Jaisyn died the family took pictures and did Christmas early; it was incredibly difficult. Jaisyn was lovingly surrounded by those he treasured most: his mom, dad, and his sisters, Karrissa and Trisha.

When people lose a loved one, comfort and support typically surround the family for a few weeks. Meals and cards and loving words usher the family into their time of grief. Then things go quiet. There are no more visits. It seems as if those outside the family return to normal. For the families in grief, time has stopped. Watching others move quickly from activity to activity, life goes on… for others. Support is still needed, a month later, a half a year later and longer. But what is meaningful to bereaved parents? “Say their name,” Angie shared. “Let me talk about him. I have to be able to talk about my son.” Angie works with older adults, some of which have dementia. She cares for them. There is one lady she talks to daily about Jaisyn and the woman hugs Angie. “That is what I’ve needed.” 

It’s also about incorporating Jaisyn into life daily. The Reese family has a digital photo frame with changing pictures and videos. Hearing his voice and seeing his face is comforting. It’s being able to continue the relationship. This year, on his birthday, his mother helped organize an event at his school. They did a balloon launch which Sarah Sieh and Tiffany Herr attended. “They were writing ‘Jaisyn’s Journey’ on the balloons. People talked and the pastor shared and did a prayer. Then they did the balloon release.”