Jaisyn Reese is a fourteen year old boy. He loves sports, including baseball and football. He loves his family; his “Poppy” Russell Maenhout, his father Emanuel, his mother Angie, his older sister and best friend Karrissa, and his younger sister Trisha.
Jaisyn loves to play video games online with his friends and wants a four wheeler. He loves to swim. His favorite color is blue. He also faces, with courage, a terminal cancer diagnosis of Diffuse Intrinsic Pontine Glioma (DIPG).
Upon his initial diagnosis, Riley’s Children’s Hospital could offer no more than radiation treatment. Two days prior to beginning radiation, St. Jude Children’s Research Hospital contacted the family and offered an oncological clinical trial. Jaisyn can receive chemotherapy for up to two years on the trial as long he doesn’t experience adverse side effects.
Life for the whole family changed dramatically. Jaisyn wants to be treated “normal”. He tells his mom, “I don’t want to be the kid with cancer. I don’t want people to treat me different.” Jaisyn has to help his parents make quality of life decisions every day; ranging from treatment options to returning to school.
Before his diagnosis in January, Angie worked 40 or more hours a week in addition to bringing her kids to various activities including football, baseball, cheer, and softball. “It was running the kids everywhere. That was just my life.” She cleaned the house, she cooked dinner. “That’s what I wanted when I was growing up. I always wanted to be a mom and be married and take care of my family.”
Emanuel works at Miller’s Merry Manor in Syracuse. He is thankful for how supportive the company and his work family has been; both with needed time off and emotional support.
Karrissa, who is 15 years old, got a part time job to help her family financially. Angie said that is not her burden to bear and tells her to keep her money. “I’m proud of her.” Angie said with tears in her eyes. “My oldest is just so, I don’t even know how to describe her, she is very mature. I just love her so much.”
Angie says that Karrissa stays strong for her brother. “She is so strong in her faith in God. I’m proud of her for that.” Choking back a sob with tears falling down her cheeks Angie said, “This sucks for her.”
It was hard for Trisha, who is 9 and a half years old, to understand why things changed so much. At first her parents didn’t want to scare her by telling her the seriousness of Jaisyn’s condition, by April they felt they had no choice. Angie said, “I felt absolutely awful. A lot of parents try to keep things from their kids, because it’s hard. It’s hard as a parent, but it was time.”
Though Jaisyn is not very vocal about his condition, Angie said he has never really been one to show emotion. She emphasized that he is a very kindhearted boy. “He loves. He just loves.”
Exhausted after returning to school, Jaisyn didn’t want to return. Mom said he has to go online, if not in-person. She doesn’t want him to stay in his room all day and offers to play catch with him outside. “I don’t want him to give up.”
Jaisyn’s last scan showed growth; possible effects of the radiation or chemotherapy. Because of pandemic restrictions she had to be given the results alone and told Emanuel over the phone. “It’s awful. It’s awful having to hear bad news when you are sitting there by yourself.”
Jaisyn’s oncology team is based in Memphis, Tennessee which is nine hours away. Angie said, “As much as we want to come home and like to be home; it’s very overwhelming.”
Angie has to evaluate his condition daily; balance, mood, and eating habits. She encourages physical activity. “Every day there is this fear.” Regulating his sugar has been the main challenge.
Angie researched DIPG; almost torturing herself to find out why it happened to her son or why it happens to any child. As she searched for answers; she admits that sometimes she searched for something or someone to blame, but knows that won’t help. “I feel guilty. I feel hurt. I feel angry.”
Jaisyn has met children who shared his diagnosis; some have already passed away. Angie can do no more than pray for their comfort. Angie said Jaisyn is not ready to go. While some families whose children have treatable cancers will be given a no evidence of disease (NED) report after months or years of treatment; children with DIPG won’t. Angie fought back tears and said, “I’m happy for them. But Jaisyn won’t ever be that way.”
When it seemed to her that Jaisyn was slipping into a depression and giving up hope, she broke down. She tries not to demonstrate raw emotion in front of Jaisyn but she told him, “I want you to live.”
When asked what help is needed, Angie answered, “What I really need is for this to go away. No one can give that to me.”
Very thankful for the support already given and hesitant to accept more; Emanuel and Angie do have hopes to provide some life enriching experiences for Jaisyn that they cannot afford to without help.
Angie would love to take her family to Disney by January; his one year diagnosis. Disney was planned for his “wish” but was cancelled due to the COVID-19 pandemic. Emanuel would like to take Jaisyn to a Vikings game when they play the Bears on November 16.
The shower in the home they are renting needs repaired. The driving back and forth to Tennessee has taken a toll; their van needs new tires and brake work, including shocks and struts.
Anyone who would like to make a donation to the Reese family to provide life enriching experiences for Jaisyn, cover the cost of home and vehicle repair, or assist with those repairs, please contact Angie on Facebook @ Angie Reese.
As the Reese family continues their journey with Jaisyn as he battles DIPG; they adhere to their faith in God. They have not given up hope for a miracle. Prayers are appreciated.