A month to live. A rare cancer. But this Littlestown man is still fighting a year later

“I can’t wake him! His breathing is weird. He has blood coming out of his mouth.”

Littlestown softball player Ashlynn Gorsuch and siblings Megan and Zachary were napping in their living room when she kicked her brother in her sleep. That kick woke her, and she found Zachary.

She ran outside and yelled to her parents.

Rob and Crystal Gorsuch raced inside their house to find their 21-year-old son in a “seizure-type mode.” He was unresponsive and bleeding after biting his tongue.

“We got in the house, and I tried calling 911,” Crystal said. “But I dropped the phone. One of the girls called, I think it was Megan.”

That episode on May 7, 2023, began a journey that has covered three hospitals, one helicopter ride, two brain surgeries, more than a dozen cycles of chemotherapy and radiation and a rare cancer diagnosis that is 84 letters long.

Zachary doesn’t remember a lot of the early days.

He doesn’t remember fighting with the EMTs to get on the gurney for the ride to Gettysburg Hospital.

He has no recollection of the helicopter transport from York Hospital to Johns Hopkins.

And he wasn’t there when doctors pulled his parents into a small conference room to tell them their only son had “three to four weeks to live.”

Zachary made it past that early prognosis and others like it. Now he’s ready to celebrate the first anniversary with a fundraiser to benefit his sister’s softball team. Because those players and their families, area organizations and companies, and his two favorite professional teams helped him reach what few thought he could.

His November birthday. Holidays. A Baltimore Ravens playoff run. And another Littlestown softball season.

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A grim early prognosis: 'We might just be sending you home'

Zachary said he worked a full day at Ace Hardware on Saturday, May 6, and felt a little more tired than normal that evening. He did some yard work the next morning and enjoyed spending time with his sister, Megan, who returned home for the summer after her first year in college.

As their parents continued with the yard work, the siblings relaxed in the living room, eventually falling asleep. That’s when Ashlynn’s kick woke her up to find an unresponsive Zachary.

While Ashlynn and Megan stayed in Littlestown, Crystal and Rob traveled with Zachary first to Gettysburg Hospital, and then to York Hospital.

“From the tone of the nurses, we knew something was seriously wrong,” Rob said of the brief time at Gettysburg. “They did scans and found two lesions on his brain, but wouldn’t speculate. They said we had to get to York Hospital’s ICU immediately.”

Less than eight hours after the mid-afternoon call to 911, Rob and Crystal were waiting for word from the York Hospital doctors about the latest scans. Zachary remained mostly unresponsive.

At 3 a.m. medical officials told his parents the doctors would have more information at 7 a.m., but it didn't look good. Four hours later, doctors said there were spots on his hip, spine, lungs and all over his brain that would require a biopsy.

Doctors warned Rob and Crystal they “might just be sending you home” when those results came in.

Family connection brings glimmer of hope

Rob’s sister works at Johns Hopkins in Baltimore, and she brought her nephew’s case to the attention of one of their brain surgeons. After Rob discussed a possible second opinion to the York doctors, they connected with the Hopkins doctors and arrangements were made.

York did the biopsy, and then Zachary was taken by helicopter to Bayview Medical Center, the adult treatment area of Johns Hopkins.

At that point, the family knew Zachary had cancer, but didn’t know exactly what kind. Doctors said he presented with Ewing sarcoma, which is a type of bone or soft tissue cancer that primarily occurs in children and young adults according to the Johns Hopkins website.

“The doctors said [the cancer] has probably been in him since he was a teen,” Rob said. “Since it was classified as a pediatric cancer, they moved him from Bayview to the [Johns Hopkins Children’s Center] for treatment.”

Dr. Marti Goldenberg, a pediatric specialist at Johns Hopkins who has been working with Zachary, said it's not uncommon for people in their teens and early 20s to get a diagnosis from the Ewing sarcoma family because that's the cancer's "peak age of incidence."

While Rob and Crystal were planted by Zachary’s side, his sisters were floating between Baltimore and Littlestown.

“I didn’t go to school Monday, Tuesday or Wednesday, and I didn’t practice at all that week,” Ashlynn said. “I tried to go to school on Thursday but spent most of the day in the guidance office trying to wrap my head around this. That was the most difficult day of school I’ve ever had. People were asking questions, and I just couldn’t talk.”

Ashlynn returned to the hospital on Friday because Zachary was having surgery to place an Ommaya reservoir under his scalp to handle the fluid in his brain.

According to information from Memorial Sloan Kettering Cancer Center, an Ommaya reservoir is a “quarter-sized plastic device that is placed under the scalp to hold liquid that is pulled by catheters from ventricles in the brain.”

With the immediate threat of seizures under control, talk turned to Zachary’s cancer.

'You have to take a leap of faith and trust people smarter than you'

Zachary remembers bits and pieces of his various hospital stays in those early days, but knows exactly how his dad broke the cancer news to him.

“I asked him what I was doing here,” Zachary said when he was at Hopkins. “My dad broke the news. He said, ‘Bud, you have a very, very, very severe cancer in your body right now.’ I was devastated. Then it was worse because he told me I was the only one who had that cancer. Then they told me it was only three to four weeks to live.”

Even though Zachary wasn’t a minor, Rob and Crystal were making decisions for their son in the early days. He couldn’t make them for himself.

“We knew we needed to start some kind of treatment,” Rob said. “Because if there’s no treatment, he has no chance. At that point he wasn’t suffering and wasn’t in pain. We decided we had to take a leap of faith and trust people smarter than you.”

About 36 hours after the Ommaya was placed in his skull, Zachary had his first radiation treatment. He followed with chemotherapy a day later.

His body was pummeled with radiation and chemo, and he made it past the initial “three- to four-week sentence.” Exactly one month after his ordeal began, Zachary was able to go home.

"We couldn't be confident that the treatment we recommended would result in a deep remission," Dr. Goldenberg said, "but felt confident that the chemotherapy we recommended was the right place to start and offered the best chance of gaining control of a cancer that had already spread extensively."

His nine brain tumors shrunk over 10 days of radiation, and he was eager for normalcy outside a hospital.

Zachary and Crystal settled into a routine of making the 2 1/2-hour round-trip trek to Johns Hopkins five days a week so he could get treatment.

A firm diagnosis and moving on

After two months of treatment – complete with the side effects of nausea and hallucinations, numerous biopsies and consultations, Zachary and his family were finally given a diagnosis.

He has metastatic undifferentiated small round blue cell tumors with primitive neuroectodermal tumors.

Crystal told Facebook friends to “Google it if you wish, but don’t believe all you read. This is, however, an extremely rare bone cancer that has moved throughout his body. It is present in his hip, spine, lungs and brain.”

That diagnosis came on July 26. Dr. Goldenberg said while some cancers are easily classified using standard pathology techniques, others require more in-depth testing.

"Even with the very advanced molecular testing that is currently available, and in the hands of an experienced pathologist, they can't be assigned a specific name," she said. "In these cases, the tumor may just be referred to using descriptive terms."

That's what Zachary and his family learned in late July. It didn't have an actual name, it just has a description.

"Zach's family was extremely patient and trusting of his medical team," Dr. Goldenberg said, "while our pathologists did all of the very comprehensive testing that was available to allow for a specific classification."

Two weeks later he was readmitted to Johns Hopkins because his Ommaya had started to leak. Doctors removed the Ommaya and replaced it with a shunt.

When he recovered from that surgery, he returned to his daily regimen of chemo and radiation treatments.

He also brought back some fun to his life.

“I got cleared for me and my family to go to Florida for a softball clinic,” Zachary said. “And then we had the very awesome opportunity to go see the Ravens [at training camp]. I saw all of my favorite players. It was a memorable experience and had my parents in tears.”

Rob is originally from Maryland and his family roots for two teams -- the Baltimore Ravens and the Baltimore Orioles. Both teams have gone out of their way to support Zachary on his cancer journey with visits from mascots and tickets to games and special events.

Those pro teams were just the tip of the iceberg when it came to the community support given to the family.

Rob estimates more than $60,000 has been raised by Littlestown football and softball teams, various foundations that reached out and his employer, Ace Hardware. Bracelets, stickers and T-shirts are being sold to promote and support Zachary’s fight.

The Gorsuch family will remember the start of Zachary’s fight at a softball fundraiser at Hoss’ in Hanover on May 7. Details are on the team’s Facebook page.

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A team to cheer for

Ashlynn has had an interesting softball career. She was a varsity starter last year as a freshman and preparing for her first postseason when Zachary was rushed to the hospital.

“I didn’t practice at all the first week,” Ashlynn said, “and I think I practiced twice the week after that. And then I would go straight to the hospital and stay all night. It was the same routine every day. Waiting to see what would happen.”

Her parents and brother watched on different devices as Littlestown defeated South Western in eight innings to win the school's first YAIAA overall tournament title.

“I didn't know for a fact they were watching because when the doctors come in the phones aren’t on and you give them your full attention,” Ashlynn said. “But I knew they would be trying to watch as best as they could.”

They cheered from afar as Ashlynn hit a solo homer for the game’s only run. Megan, who played four years of varsity softball, was among the first to wrap her in a bear hug.

Fast forward to this season. Ashlynn recently notched her 100th strikeout in her first year as the starting pitcher. She did that nursing a sore arm that forced her to miss several games.

Zachary goes to as many games as he can, weather permitting. He cheers for every player but gets louder when cheering for Ashlynn. She is his hero. He believes she saved his life by finding him and quickly getting their parents’ attention.

“He’s more of a hero to me than I am to him, he just doesn’t realize it,” Ashlynn said. “He lightens the mood wherever he goes. He’s so strong. He’s stronger than anyone I’ve ever known.”

Light at the end, but the tunnel is long

Zachary said the only time he doubted his survival was between the diagnosis and his second brain surgery.

“I got chemo the previous day, and it was starting to leak down the back of my head,” he said. “I said, ‘Guys, we have a problem.’ The nurses rushed me over to inpatient, and they said I had to get right into surgery.

“At that point I was saying, ‘This has been a rough couple of months.’ Everyone at the hospital was telling me I had this, but I didn’t think they were serious. A couple of months later, I realized they were serious.”

Rob had similar doubts at the same time as his son. He expressed concern that it was always going to be a one-step forward, two-step-back kind of thing.

“We were in another conference room,” Rob said. “The doctor said, ‘[Zachary] has survived more than 90 days. No one in the hospital thought that would happen.’”

Coming up on the first year since this journey began, Zachary stands alone. A team of doctors from around the world correspond regularly about his condition, treatment options and the prognosis.

Dr. Goldenberg said based on cancer statistics, the chance of someone being diagnosed with Ewing sarcoma or a tumor of that family is one case in one million people. That number increases to nine or 10 cases per one million for people between 10 and 19 years old.

She said it's hard to say what the incidence rate is for a cancer like Zachary's because they don't have a grouping for that.

The only sign of the lesions on his brain is scar tissue left from radiation. Doctors are hopeful they will be able to say the same thing about his hip now that he has completed that treatment. Zachary still has tumors on his lungs and one in a precarious position on his L2 vertebrae.

He has gone through 14 cycles of IV chemo and takes it by pill now because of the toxic level of his system. He has regained 20 of the 50 pounds he dropped from his 6-foot-4 frame and has maintained a steady weight for several months.

"His journey has been amazing and one that we have been lucky to be a part of," Dr. Goldenberg said. "We tell families when we first meet them about the anticipated prognosis of each type of cancer, but each patient has their own story. Zach is a great example of this."

Rob said he has handled so much chemo by staying hydrated.

“Zachary would get a treatment, and we would have him flush it out of his system as fast as possible,” he said. “He complained that he had to get up at night to go to the bathroom, but he still kept drinking.”

Zachary said this journey has taught him to never take things for granted.

“I didn’t think I was ever going to start in football, but I did in my senior year,” Zachary said. “I was in shock about that. Also, spend time with your family and loved ones, and count your blessings as you go.”

Shelly Stallsmith covers York-Adams high school sports for GameTimePA and the USAToday Network. Connect with her by email mstallsmith@ydr.com or on X, formerly Twitter, @ShelStallsmith.

This article originally appeared on York Daily Record: Littlestown community supporting Zachary Gorsuch during cancer fight