Those we love don’t go away. They walk beside us every day.

-author unknown

Jessi’s Story

Cancer is a life disruptor that does not discriminate by age, race or gender.  It delays and can actually prevent those with cancer from achieving their dreams no matter how hard you fight.

October 13, 2014 is the day our world turned upside down. Jessi graduated from high school in the spring of 2014 and was all set to further her education in the fall at Mount Union to become an early childhood education teacher. We got her all settled into her dorm, and she was excited to begin the next chapter of her life.

However, in September, she started having headaches, followed by an upset stomach, then vomiting. Jessi always felt better when she was lying down and started coming home every weekend. As the symptoms were not going away, and the headaches seemed to be getting worse, we began taking her to several doctor appointments. The doctors said, “It’s probably a sinus infection, and her sinuses are draining into her stomach which was causing her to get sick.”

It all seemed to make sense at the time.

On October 12, heading to Cleveland Browns stadium, we both noticed Jessi couldn’t walk in a straight line, and she was weaving back and fourth. Upon returning to the Doctor on October 13, they had said her sinuses could be draining in her ears causing vertigo. 

I called my husband, and we decided enough is enough, and I demanded we get a CT, as we felt the symptoms were getting worse.

After a discussion with the doctor, they scheduled Jessi for a CT scan later that afternoon. At 4:00Pm that day, the doctor was calling me at home. I’ll never forget the words. “Mrs. Kossin, are you sitting down? You were right, the scan showed a mass in your daughter’s brain that needs further investigating. You need to get her to Rainbow Babies and Children’s Hospital immediately.”

I called Ken at work and told him to meet me at Rainbows. There was no time to wait for him to come home to get us. Once we arrived, we were told Jessi had a brain tumor, and the ventricles in her brain were three times the normal size, which was why she was having such horrible headaches. That night, Jessi had surgery to drain fluid from her brain, and the following day she had another surgery to create an opening at the stem of her brain for the fluid to drain naturally and to get a biopsy of the brain tumor for analysis. 

On October 16, we went home to await the results of the biopsy.  We returned to the hospital on October 24 for the results, and it was not good.  We were told that Jessi had a level three glioma and needed surgery to remove the tumor, which would be followed up with radiation and chemotherapy. This was devastating news, so we turned to God and our faith, along with our rallying theme of BELIEVE

Jessi’s brain surgery was scheduled for October 28.  While waiting for the day to come, the only question Jessi had asked was, “Why do I need surgery? My headaches are gone.”  She never once asked, “Why me?”

On October 28, Jessi’s surgery lasted approximately 12 hours. The waiting room was filled the whole time with family, friends and our two pastors. There were several prayers being said throughout the day in small groups, and at times the entire group together.  The support we had that day was amazing and continues to this day. The surgeon came to talk to us after the surgery and said she got the whole tumor, which was the best news we could have expected. The next few nights and weeks were very tough as we never left Jessi’s side and we slept right next to her in the PICU.

The surgeon sent pieces of the tumors to John Hopkins for additional analysis to find out more about the tumor type and what sort of treatments would be needed. We received the results of the John Hopkins pathology report on the night of November 14 while still in hospital that Jessi’s tumor was a benign polycystic astrocytoma and that she would need no further treatments, and she could focus on recovering and getting stronger.

That was the great news.

We shed tears of joy and thanked God and immediately started sharing the news with our family and friends. Jessi still had a long way to go to reach full recovery. She kept asking us if she was going be okay as her memory was foggy from the numerous surgeries. She needed several months of physical, cognitive and occupational therapy. Jessi was determined and worked very hard, as the one thing she wanted more than anything was to get back to Mount Union and fulfill her dream of being a teacher.

And she did it. By March of 2015, Jessi was working a few hours a day and taking 2 classes at Tri-C that would transfer to Mount Union. She went for MRI checks every three months, and all the results were good. Jessi re-enrolled at Mount Union and registered for classes in the fall of 2015, got a new roommate and was super excited to get her life back on track. We scheduled a celebration cruise for the beginning of August, and life was good.

Then WHAM, we went for a routine MRI on July 22, 2015, and the tumor was back.

Jessi would need six weeks of radiation, and the success rate was 70%. There was a 30% chance that the tumor would return. And the only thing she could think about was, “Can I still go back to school?” She didn’t cry, complain or question how unfair life was. She just wanted to go to school.

So we made that happen.

We cancelled our cruise and talked to the radiologist, and Jessi started radiation the week of August 10. She had to go every day, Monday through Friday, for treatments 8-12 minutes per day.

The first three weeks Jessi was home, and the next three weeks of treatments occurred when Jessi was back at school. Her Dad left work every day at noon, drove to Mount Union to pick up Jessi, swung by and picked me up, and we went to Seidman for the radiation treatments, then drove back to Mount Union so Jessi could have dinner with her friends and sleep in her dorm room. She never missed class and never complained about the side effects of the radiation treatments.

We all just made it happen.

Round trip over 300 miles every day. You do whatever it takes during this time to make your child happy. She finished her radiation, completed all assignments, and she was able to maintain a 3.4 grade point average. Jessi joined a sorority, Alpha Zi Delta and had the best Sorority family, who surrounded her with love and support. She was making new friends and participating in all types of campus activities. Jessi continued to go for her checkups through out the year. She was observing in elementary school classrooms and her life was once again back on track. She was having fun with her friends, and throughout her journey, she became so much closer to God.

She never questioned why things happened.

Jessi completed her freshmen year and came home for the summer. She got a summer job as a nanny and worked for them all summer. She applied, interviewed and was selected to be a Raider guide at Mount Union for the fall of 2016. Prior to going back to Mount Union for her sophomore year, we rescheduled and took the celebration cruise we had cancelled earlier. Jessi was beyond excited.

It was time to move Jessi back to Mount Union for the start of her sophomore year.  We packed up her things and moved her into her quad in early August to begin Raider Guide training. It was about this time Jessi began telling us that her leg was hurting, it felt weak and she was having trouble walking up steps or running. We thought she had pulled a muscle. She was getting tired a lot, but then again she was very busy. Jessi called us after a couple of days as she was beginning to get sick again. We started worrying but hoping we were wrong. She started forgetting things that were very routine for her, but we were in denial. We hoped and prayed that the cancer had not returned, but we think she knew what was happening.

We had another follow up MRI appointment scheduled for August 28, 2016. We went for the MRI, and the news was not good. The cancer was back. This time, it covered the entire lining of her brain, and she had some lesions on her spine.

Then on September 2, we went back to Rainbows so they could do a spinal tap to further determine the type of cancer that had returned. The preliminary results pointed towards a different type of cancer cell, but we had to wait a few days for the final results. Jessi went through the process without complaining and again never questioning her faith, nor asking why me? She just wanted to return to Mount Union to finish her Raider Guide training and welcome back her roommates that were moving in that weekend. We took Jessi back to Mount Union on Sunday, September 4 of Labor Day weekend, so she could be with her roommates, go out to a movie and have some fun. Unfortunately, she started getting sick again so we called the doctor, and he stated it is not unusual to be sick after a spinal tap, as it is one of the side effects.

The next morning, September 5, Labor Day, Jessi continued to be sick, and we called the doctor again, who suggested we go to Mount Union and bring her into the emergency room at Rainbows, which we did. We arrived at the emergency room around 4:00PM, and Jessi was continuing to get sick. They did x-rays of her leg and an MRI of her brain to see if there were any noticeable changes. Upon returning to her room around 7:00PM, Jessi felt sick again and had a seizure, which was the first of many to come.

Once the doctors got her seizure under control, Jessi was moved into the PICU. Jessi also never went back to Mount Union for classes. This was the beginning of another long stay in the PICU for us, as Jessi was not responding to commands and she needed to be intubated and sedated at 4:00AM the next morning. Later that day, Jessi had surgery to put a different shunt in her brain to help drain some of the fluid that had built up. On September 9, Jessi started waking up, and the breathing tubes were removed. After a few more days in the PICU we went home as Jessi was making remarkable progress towards recovering.

The next steps were preparing Jessi for chemotherapy treatments, which included getting a chest port.  Jessi’s chemotherapy treatments started on September 16 and although Jessi experienced several side effects of the treatments, including losing her hair, still she never complained nor asked, “Why me?”

The chemotherapy treatments continued, and everyone was hoping for positive results from the upcoming MRI’s. During Jessi’s chemo treatment on November 16, she had another seizure, which again was the beginning of many more to come.

At this time, the doctors had asked us if we were okay with them sending a portion of her tumor to another lab for genetics testing as the tumor was acting differently than what was diagnosed in October of 2014.  We agreed with the request and anxiously waited for the results hoping and praying they would be able to identify a cure for Jessi.

On December 9, 2016, the doctors received the results of the genetics tests. The news was worse than we could have ever expected.  They had discovered two types of cancer mutations that there is no cure for. We asked how long Jessi had to live…years? Months? Weeks? Or days? 

Turns out, we had just months.

We shed many tears and eventually returned to Jessi’s hospital room. Jessi was at peace and praying in her bed as if she already knew. The next steps were informing family and friends which made up the tremendous support group that still exists today.

In an attempt to prolong the time we had with Jessi, the doctors recommended another round of radiation treatments, as she responded so well the first time. They began January 9, 2017 and continued thru February 9. Upon completion of the treatments, it was clear it had not helped, and the seizures continued periodically. After the completion of the radiation treatments while exploring various trial options, we chose to make the remaining time Jessi had with us as normal as possible. She did not want to spend any more time in the hospital, nor participate in any trials. We went to Florida at the beginning of May for a Relay for Life, at the end of May we went on vacation to Ocean Isle with our best friends, attended many, many Indians games, participated in the Strongsville Relay for Life in June, attended by her doctors and 70 plus people wearing Jessi’s Journey t-shirts, and spent lots of time with family and friends in the comfort of our home.

At the end of August Jessi’s health started to decline more rapidly, but it did not prevent her from constantly displaying her contagious smile. Her faith in God continued to grow and she constantly reminded us to trust God and everything will be okay.

On September 20, 2017, Jessi had the seizure the doctors warned us about. She was rushed to the hospital, but we returned home later that day where we were met by hospice to keep Jessi comfortable.

On September 26, 2017, at the age of 21, God called our angel home.

At that moment, we realized that as our daughter was striving to become a teacher, she already was one. She had been teaching us, and all those she touched, throughout her entire journey how to be strong, courageous, caring, loving, how to enjoy life to its fullest and to always trust God. During our daughter’s three-year battle with brain cancer, we never felt that we were doing anything special except being parents and taking care of our daughter. We were very blessed to be surrounded by family, friends and our pastors throughout this time and everyone continues to provide incredible support to us today.

In memory of Jessi, we established the Jessi’s Journey Foundation.

The primary purpose of this foundation is to raise funds to assist families whose child has been diagnosed with brain cancer and to provide an annual scholarship to a student who is majoring in early childhood education at the University of Mount Union.

WE LOVE YOU JESSI!!!

-Becky & Ken