The story of Jalyn Bender
Ever since she was little, Jalyn struggled with some separation anxiety when heading off to school. So when symptoms like throwing up in the mornings and frequent headaches began appearing as a second grader, Jalyn’s mother, Jenica thought they were dealing with anxiety again. Although Jalyn was already seeing the school counselor, Jenica’s initial thought was to have her see a mental health specialist. But just before making an appointment, she changed her mind and scheduled Jalyn with a medical doctor. After solidifying a date and time, she questioned her decision and even asked herself, why am I making an appointment with a doctor?
The doctor was very thorough when examining Jalyn and eventually requested a simple test for her to perform — moving a finger from her nose to straight out in front of her face to meet the doctor’s finger. The doctor noticed a minimal tremor within the movement of Jalyn’s response so she decided to recommend a CT scan. Jenica questioned the need for something so extensive, but agreed to the doctor’s order and the CT scan was completed six days later as they didn’t feel it was urgent. Before leaving Mitchell, Jenica got a phone call from the doctor’s office asking her to come back into the clinic to review the results from the CT scan. Her mind began to race, as she immediately knew the news was going to be bad.
The first thing the doctor said was, “I want you to remember not all tumors are cancer.” The shock ensued and the rest was a blur. The scan showed a tumor at the base of Jalyn’s brain.
What they thought was anxiety turned out to be an urgent trip to Sioux Falls that night to do an MRI and prep for surgery the next morning. Doctors removed as much of the tumor as possible and after surgery they did another post-op MRI and told Jenica and Patrick there was an 80% chance it would not return. Two days later Jalyn was taken off of the ventilator and she started to wake up, but wasn’t talking quite yet. Her mom attributed her lack of communication to the throat irritation caused from being intubated and figured she would come around soon. Jalyn started using hand signals to communicate with her parents.
Jenica noticed that Jalyn wanted to express something, so she handed over a pen and a piece of paper. She penned the words: “I love today.” Her parents haven’t quite figured out where that came from, but she has written it several times since then. Those words have stuck with their family and carried them through even the most challenging days. It has helped them to focus on the positives and what they can be thankful for in each day, such as Jalyn still being here with them. Jenica states, “At the end of the day, we just remember to love today because we have today.”
What her parents would come to find out was that Jalyn has what is called posterior fossa syndrome (PFS). Up to 25% of pediatric patients with a tumor in the same location as Jalyn’s experience PFS, with the occurrence being even less likely with Jalyn’s specific tumor type. Symptoms of PFS include problems with speech and language such as mutism, difficulty expressing feelings, changes in mood, and challenges with motor skills. Every case is unique and the timeline of improvement is different for each person, but various modes of therapy are the treatment plan to help foster the best possible outcome — the return back to normal.
Jalyn was initially admitted to the Sanford Children’s Hospital on January 17 and was finally released to go home on January 31, but would only stay there for four days. She began experiencing a high fever, nausea, then vomiting, and a leak of cerebrospinal fluid from the area of her surgical incision. On February 5, the Benders were back on the road to Sioux Falls. Within the first few hours of being at Sanford again, the staff had taken charge by getting Jalyn on two antibiotics and anti-nausea medication, and they started running blood tests, panels, and cultures as well as performing another CT to help determine what was going on inside of her body.
The following morning Jalyn went in for another surgery to clean out the incision site, but to the doctor’s dismay they did not locate the infection they were anticipating finding. A culture came back showing an infection further into her brain. Doctors were worried about the infection turning into meningitis so they kept Jalyn on a high-strength antibiotic. During the surgery the doctors placed another external ventricular drain (EVD) in a different spot on her head to help drain the pressure build up of cerebrospinal fluid (she also had one during her time in the hospital the first stay). Unfortunately, that hose also leaked because the pressure was too much, and at another point a kink presented in the hose, once again sending Jalyn backwards with fevers, unstable vitals, tremors, and lethargy for several consecutive days. She was closely monitored in the PICU to get her health back on track, and she eventually graduated to a regular room. One major victory throughout their second stay was that Jalyn started whispering words to communicate again. The second admission to the hospital lasted 18 days before Jalyn made enough progress to be cleared and released to make her way back home again.
Throughout their 33 days in the hospital, Jenica and Patrick rode a rollercoaster of emotions while navigating the setbacks and victories as well as the uncertainties in the back of their mind. They were able to find solace within the walls of the chapel nested into the Castle where they visited almost daily —prayers were spoken, tears were poured out, peace washed over their worries, and comfort enveloped them in that space. Jenica felt as though God was with them every step of the way and “All of the prayers are what pulled us through, for sure.”
Coming back home again was hard for Jenica and Patrick: to see the reminders through the photographs on the wall of the girl Jalyn used to be compared to who she currently is. But they remind themselves that Jalyn continues to make progress and is on an upside swing. She has found her whole voice again! As she and her family navigate their way through the posterior fossa syndrome they know that things could be worse, and that any progress, no matter how small, is a step in the right direction.
Doctors will continue to follow up on the area of the tumor with MRIs three months out (May). If that results in a clean scan it will be spread out to six months from then, then a year checkup, and then a two-year gap until the next scan. Jalyn has been a “superstar” as the nurses referred to her, and a rock throughout the entire journey. She has kept a positive spirit even amidst the challenges thrown her way. Even though she recognizes there are things she cannot currently do that she used to be able to do, Jalyn continues to strive for progress with strength and determination.
Most weekdays are consumed with office visits for Jalyn as she works on speech, occupational, and physical therapies, with three appointments for each therapy every week. Since there is no predictability for the timeline of PFS, the Bender family prays and patiently awaits the day when Jalyn returns to her old self again.
From the beginning of Jalyn’s journey, a community of support rallied around the Bender family. Their pastor sent out messages and made calls to begin a prayer chain and the news spread like wildfire. Jenica kept her family and friends updated with Jalyn’s progress through social media posts. The Benders were surprised to see Jalyn’s story spread across not only the US, but the world — they have even had someone reach out to them from Australia. Throughout their stay at the Castle they met other families that were walking through medical hardships, and even though their stories were all different the Benders felt a connection and a common understanding amongst them. Unfortunately some of those families did not get the ending they were hoping and praying for, but some of the families they met have still stayed in contact with the Bender family and requested continual updates on Jalyn’s progress.
After their return home, the community put on a benefit for Jalyn and the Bender family. The turnout was incredible, and they were significantly blessed by the event. There has also been a fundraiser at the school, as well as two heifer rollover auctions — one through Mitchell Livestock and one through Moore Angus. Although they find it hard to be the ones on the receiving end, through the generosity of others, both through the multitude of prayers and the giving, it not only gives them hope because people care so much, but it also reminds them of the good that is present in this world. They have been blessed by so many people near and far, some they’ve never even met before.
This journey has brought the Bender family even closer than before and Jenica notes, “Tomorrow is not always promised to be what you think it might be.” That's why Jalyn's words, "I love today" have become a motto for their family as well as an important statement that continues to make a positive impact on all of those following along.
Jenica also shares, “You really gotta stop and smell the roses because there’s a lot around you, and you don’t realize how lucky you are. Unfortunately, it takes those bad things to happen before it opens your eyes to realize that there is a higher power watching over you.”
That hadn’t always been the perspective of Patrick, Jalyn’s father. He has had to navigate significant grief throughout his life already after experiencing the loss of his sister, mother, and father. He doubted that God existed, questioned why Jenica believed in God, and thought if God was real then He wouldn’t have allowed him to walk through so much loss and heartbreak.
But while Jalyn was undergoing surgery, Patrick went to the waiting room and reached out to God in his desperation and said, God, if you please bring her through this with good news, I will be a different man. He shared this powerful moment with Jenica, and requested to pray with her later that day.
Jenica expressed, “It took us to hit the really hard spot before realizing He is really with (us). And He has helped us through it all.”
Nothing about this journey has been easy, but Jenica shares that placing their faith and trust in God has helped make it easier. The Bender family feels overwhelmingly grateful for the love and support they have felt and greatly appreciate the prayers for Jalyn. We hope Jalyn’s story encourages you to LOVE TODAY!
Originally published in Gritty Faith Volume 15 as part of the Love Legacy feature written by Haley Juhnke.