Wetzel Family Story 

The Jonus Wetzel Family

Our fighter is Jonus & he is 5 years old! Our family consists of Mom, Dad, Jonus & Aurora. We have 10 aunts & uncles, four grandparents, three great grandparents and six cousins that love Jonus a lot. Our favorite things to do together as a family include game nights, playing outside, going to Knoebels, and just playing together. We love holidays, especially Halloween and Christmas. Jonus loves to build Legos, draw, paint, color, swing, slide and play outdoors. He also enjoys playing with his friends, going to preschool, and just being a normal 5-year-old. He really enjoys drinking coffee milk and going to Starbucks while at clinic is the highlight of his day. His favorite color is green, and he hopes to grow up one day and become either a detective or a nurse. He has a collection of stuffed animals that grows by the day, and he has discovered a love for Mario Kart & Animal Crossing on the switch.

On Thanksgiving in 2021, I got COVID. Jonus started having symptoms that were like mine but he never tested positive. We took him to the clinic, and they said it was probably COVID and to treat it with Tylenol, rest, fluids and to come back in a few days if his symptoms were not managed. We visited clinics, doctors’ offices and urgent care every seven to 10 days for weeks. His symptoms were fever, lethargy, loss of appetite, dehydration, cough, flu and cold symptoms. We made it through Christmas and the New Years, but on January 9, I went to get him awake and he was pretty unresponsive. I immediately took him to the local hospital here and they triaged us enough to indicate that he was really sick, and Hershey was our best option. When we landed, it was controlled chaos. Tests, doctors, nurses, lots of technical talk and the confirmation that it was indeed leukemia, and it was serious.

Jonus was diagnosed on January 9, 2022, with High-Risk B-Cell Acute Lymphoblastic Leukemia with PH-like chromosomes. It was a blow for us to get that diagnosis. It threw all our plans/hopes/dreams for the immediate future into the unknown and scary territory. When they came in and said those words, the air was sucked out and I just remember thinking not us, not this sweet, kind kid who never hurt anyone. It was very, very chaotic after that, lots of tests, paperwork, doctors with checklists and information and all the consents and information. Our first trip to Hershey was done via helicopter. He was too sick at the local hospital to be discharged and go to Hershey.

We spent 148 days inpatient from January 9 until May 23 when he was discharged. During that time, he had pretty much every complication you could have. We had viruses, fungal infections, sepsis, loss of muscle mass, COVID, respiratory illnesses, heart issues and more. He was intubated and put in a medically induced coma for almost a week. It was a rough time for all involved. I was also pregnant with our daughter Aurora. She was born during our inpatient stay and spent the first month in the hospital room with us.

We followed the normal Children’s Oncology Group (COG) protocol for kids with High-Risk B Cell ALL. We made it through all the phases and were three weeks from the end of treatment. We took steroids, nerve blockers, various chemos (in his port, through his spinal fluid and by mouth).

At what was supposed to be our last spinal tap on June 19, 2024, they made a discovery that rocked our world again—Jonus’s cancer was back. We were due to ring the bell sometime after his appointment in July. The initial end of treatment was set for July 13, four days after his 5th birthday. I can only imagine how I will feel when we can ring that bell.

Our relapse journey has taken us to CHOP in Philadelphia, we are going there at the end of this month to get a new, innovative treatment. They have formulated and modified his own T Cells to fight leukemia using his own body’s T Cells. We will be living in Philadelphia for 5-6 weeks while the treatment is administered to monitor him for any adverse side effects. This is a blessing and a drawback because we will be 2-3 hours away from our home and all our creature comforts.

Our experience with Four Diamonds has been nothing short of amazing. From the social workers, art therapists, music therapists, physical therapists, occupational therapists, child life workers, chaplains, and the psychologist—every single person has made our journey just a bit better. Jonus loves the music program (especially Korrin!), the art program (his signature drawing is a rainbow), and the facility dogs (he LOVED Becky, and he is always asking to go see Baron!) He loves playing with the child life ladies, especially on BINGO days where he can win all sorts of art supplies and Play-Doh.

Our big THON connection actually happened at 100 Days ‘Til THON. We just so happened to be at Hershey when the THON group was there. They came into the room and talked to me and Jonus. We met a lot of wonderful men and women. But one stands out—Stella. Jonus immediately took a liking to Stella. He was enamored. We connected closer to THON in 2024, and Jonus made sure to ask every single day how was she doing? Was she going to be there at THON? Would he see her? Would she play with him? Their friendship was born. We texted frequently and often she would just say hi, I’m checking in to see how he is doing.

Then came THON weekend. We went in the Bryce Jordan Center, and all my mom and I heard was, “where is Miss Stella?” He ran to her when he saw her in the lobby, and they were inseparable for the entire weekend. They played and ran around. She held him while he fell asleep during family hour. She became his best friend. THON weekend was a defining moment for me. Seeing all the survivors, the bereaved families, and the kids currently on treatment all together, all being celebrated, and treated like celebrities? It was amazing. I think for me the best part was Sunday for Family Hour. The testimonials of other families were vastly different stories than mine, but at the core the message was the same. The overall theme for me was the same. I saw myself in them, their stories, their pain, their joy.

Jonus must have played 100 games of hide-and-seek and colored 100s of pages with the girls and boys there. He was celebrated and got tons of love, attention and high-fives. Every person we interacted with at the BJC was incredibly polite, kind, and loving to Jonus and us.

THON means hope for our family. It means that Jonus has the best chance of beating this cancer. He has the best chance of surviving and thriving with the support of THON and Four Diamonds. We will never get a bill from our treatment. Do you know how rare that is? Outside of this area, there are very few organizations that help the way Four Diamonds & THON help. To know that my son will never receive a bill for the treatment, that I will never have to pay back thousands of dollars for life saving treatment that my insurance wouldn’t cover? To know that the helicopter ride to Hershey was covered in full because of the work that Four Diamonds & THON does? That to me is worth everything. To know that the work being done will help with research for cancer, will help fund art & music programs, will keep social workers and therapists and facility dogs in the hospital to help kids like mine? Worth it.

Until you stand here on the floor when the numbers are raised, you really can’t appreciate it. You don’t really see the magnitude of what is being done. You see the dancers and their organizations and all the work they do day in and day out, to raise money to help more kids like mine. It is awe inspiring. When the numbers come up and the cheers ring out you can just see the love these kids have for THON and Four Diamonds. You can see the life-changing possibilities that exist in the parents’ eyes. You see people breathing easier because that means more kids can be helped, more lives can be changed, and more good can be brought into the world.

Cancer was once upon a time the worst thing that happened to us. It was a scary, living and breathing entity whose only purpose was to take things from me and my family. It still is a living thing that exists in my life and may always live here in our family story. But it is not the worst thing that can happen. It has opened doors for my kid that will be with him forever. It has made me realize how strong you can be when the occasion calls for it. It has made me realize how many people have come before us and paved the way for us to thrive. It makes me sad to realize how much further we have to go in regard to research and developing new treatments. It also reminds me that the young men and women at Penn State will dance until there is a cure, and then there will be dancing for an entirely different reason. We were recently paired with Penn State College of Medicine and look forward to building relationships with the young men and women there!

I have a vision for what our lives look like post-cancer. I don’t know what our future holds, but I imagine it looks much like our life pre-cancer. It’s watching my kids grow up, play, learn, go to school, make friends, play sports and all the other things that any parent wishes for their kid. I hope that one day this will be a reality for Jonus. I hope that he remembers very little of the beginning of his journey with cancer. I hope he only remembers being loved and cared for. I hope he doesn’t remember the endless days of shots, medications, and pain. I hope this for every kid diagnosed with cancer, but I hope for Jonus he only remembers the happy part when the treatment works, and he is cured.