“It was the middle of the night. Josh woke up. I kissed him, and he reached for my belly. I said, 'Sweetie, she's not in there anymore ... Do you want to meet your daughter?' So they brought her in, I helped him hold her, and he kissed her little head … The three of us just laid in bed together for a little bit.”
Jenna Buehler, 31, recalls this moment with a sweet softness in her voice. It's almost as though she returns to that place in time.
Just over three months ago, Jenna and her husband, Josh, welcomed their baby girl, Reilly, into the world.
They were over the moon.
Josh loved his daughter the second he laid eyes on her.
“They bonded enough that he held her, kissed her,” Jenna says. “I would ask him, 'Do you want your baby?' and almost every time, he said yes. She slept in his arms a lot. His right arm would shake a little after seizures. I would set her in his arms, and it would rock her to sleep. I put her on his chest, and he would sniff her head and kiss her.”
Life as a family of three was beyond sacred for the Buehlers.
They wished time would stand still – because, for them, it was cut far too short.
Seven weeks after Reilly's birth, Josh died from brain cancer. He was just 41 years old.
For these newlyweds, life was a breathtaking roller coaster – and they held each other close through every thrilling high and hellish low.
(Story continues below these photos)
PHOTOS: Newlyweds capture each moment after fatal diagnosis
'WE WERE ON A HIKE, AND HE USED AN OPPORTUNE MOMENT.'
Jenna and Josh's love story began at Georgia Tech in Atlanta. She was interning in the athletics department, and he was working as a network architect. In 2011, years after meeting, they reconnected during a football tailgate.
“Coffee dates turned into lunch dates,” Jenna explains, “and lunch dates turned into dinner dates.”
In January 2012, she moved to Oregon for a job.
“I remember feeling confused because he was the first to encourage me to take the job,” Jenna says. “I thought he wasn't that into me, but that wasn't the case. I remember him telling me it was OK – he said he was going to visit, but I wasn't holding my breath.”
By Valentine's Day, he was out there visiting, and on Dec. 29, 2013, they were engaged.
“It was my birthday,” she says, “and two years to the day after our first kiss. We were on a hike, and he used an opportune moment when we were searching for a dog shoe that my dog had kicked off. He said he found it, I ran over to him, and he took a knee and proposed. I was surprised but fighting back anger because he didn't have the dog shoe. But I was very excited. I said, 'Without a doubt in my mind.' ”
In February 2014, Jenna moved back to Atlanta, and that fall, they got married at a farmhouse in the mountains of north Georgia.
Life as newlyweds, Jenna says, “was a blast … we were very much in love.”
But shortly thereafter, things took a very unexpected turn.
“I started feeling that marriage was harder than I thought it would be,” she explains.
The reason behind the change, however, was nothing they could saw coming.
Something was different
'THINGS JUST DIDN'T ADD UP'
Sometime after Christmas, early 2015, Jenna noticed something different about her husband.
“He just seemed less considerate,” she describes. “That's how I interpreted it. I felt like I married this guy, and he was perfect, and now we're married, and he's different. He did silly things, like walk away from the sink while the water was running. He lost his keys once and left car in the parking lot and rode the subway home. There were just too many things that weren't right. He lost his wallet before our honeymoon – but he didn't really lose it, it was in his car. And one day, when he lost his keys, he was panicked and anxious and asked me to be with him. I gave him a hug, and found them in his pocket. Things just didn't add up.”
Secretly, Jenna feared that Josh was developing multiple sclerosis, a condition his mother was battling.
Josh blamed a lot of his symptoms on fatigue, but really, there was a tumor compressing his brain.
In March 2015, the couple traveled to Taiwan for their honey moon. It was a rough day in the air, and Jenna was frustrated with Josh's behavior.
“I didn't know if he was anxious or just not good at this (traveling),” she explains. “We got to Taipei, and we toured first day. We were in the top of (skyscraper) Taipei 101, and I remember him wavering, he couldn't walk straight. I took a video, showed him the video, and he convinced me to let him get another night's sleep. During that time, I contacted his father in the States. Josh and I had both expressed concern about MS … we had even talked about it openly at that time. He encouraged us to go to hospital before leaving Taipei.”
That's when doctors discovered a 5 cm tumor on Josh's right parietal lobe.
A grim prognosis
'THE FIRST TIME WE HEARD A DOCTOR SAY 15 MONTHS'
While overseas, he got emergency treatment to reduce the swelling before returning home, where they met with a neurosurgeon at Emory University Hospital.
Josh was scheduled to have the tumor removed on March 17, 2015. His official diagnosis was glioblastoma multiforme (GBM), a rapidly spreading cancer that caused behavioral changes similar to those Josh was experiencing.
The prognosis was grim.
“That was the first time we heard a doctor say 15 months,” Jenna says. “That was the median prognosis. But Josh was young. There was hope to be had … but it was considered terminal from the start.”
According to statistics, roughly five percent of GBM patients survive past the five-year mark.
“But we were determined to be that five percent,” Jenna says.
After surgery, Josh began an intense regimen of chemotherapy and radiation. It was a whirlwind – but his confidence was contagious.
“We started talking openly about death,” Jenna says. “I would ask, 'Are you dying?' and he would say, 'No plans.' That kind of became his mantra. We were just gonna live life. He wasn't planning on dying.”
Jenna researched ways to improve their lifestyle at home. She overhauled Josh's diet, they spent time relaxing, and she made him take time for himself.
Things were looking up.
In July 2015, Josh was equipped with an Optune device, which delivers therapy to the affected areas of the brain through four adhesive patches. His MRIs continued to be stable, and he was happy, healthy and losing weight.
“He was healthier than any time I had ever seen him,” Jenna recalls. “He was not stopping. He wore the Optune device for a year to help slow the progression, and although it was an inconvenience, it meant we had Josh.”
'HE WANTED A CHILD SO BADLY.'
Shortly after their wedding, Josh and Jenna talked about starting a family. When Josh was diagnosed, they immediately looked into preserving his fertility.
“He banked sperm prior to chemotherapy and radiation,” Jenna explains. “In May 2014, we started trying with intrauterine insemination (IUI).”
After four unsuccessful rounds, they moved onto in vitro fertilization (IVF).
Jenna got pregnant on their first attempt. They got the news in January 2016, and Josh was the first to know.
“I requested they call him first,” Jenna says. “I knew either way he would handle it best. He could hear first if we were, and I could hear it from him if we weren't. We were pregnant with twins and we were so excited. I remember he called me when I was at work and I fell to the ground crying. He wanted a baby so badly. We were surprised (about the twins) … but we started dreaming about two babies.
Unfortunately, nine weeks into the pregnancy, Jenna lost one of the twins. But doctors were optimistic about the outcome – and Josh was thriving.
For the first two trimesters, he was “a perfect husband and partner,” Jenna recalls.
The pregnancy was progressing beautifully, and Jenna continued to work.
In late June, however, Josh began to deteriorate.
“He wasn't right,” Jenna says. “Things weren't adding up again.”
Doctors found a different type of brain cancer called leptomeningeal carcinomatosis, a rare complication in which the disease spreads to the membranes surrounding the brain and spinal fluid.
The prognosis is horrific: four to six weeks untreated; three to four months with treatment.
'Bring it on'
JOSH, IN TYPICAL FASHION, HAD NO PLANS TO DIE
Josh, in typical fashion, had no plans to die.
“Bring it on,” he said to his wife, opting for another round of radiation and chemotherapy.
Josh continued to work through July, trying to get as much communicated to others within the company about his projects.
“He was worried about people treating him like he was dying,” Jenna says. “That was the worst-case scenario.”
They took a family beach trip in August, and that's when Josh had his first major seizure. As soon as that happened, his health quickly declined.
At 36 weeks pregnant, Jenna went into labor. Josh was mostly bedridden but very aware. He was on hospice by this point, and it was arranged for an extra bed to be in the delivery room, so he could be by Jenna's side.
On Sept. 19, baby Reilly was born.
“Josh was mostly asleep during the delivery,” Jenna says. “He had a seizure right before I had the epidural. It was the middle of the night. Josh woke up. I kissed him, and he reached for my belly. I said, 'Sweetie, she's not in there anymore ... Do you want to meet your daughter?' So they brought her in, I helped him hold her, and he kissed her little head … The three of us just laid in bed together for a little bit.”
The family came home together on Sept. 21.
Josh passed away Nov. 6, with his wife and daughter.
'This is ...'
A MISSION TO DESTROY CANCER
“He just stopped,” Jenna says. “There were no tears, no moan, he was asleep, and then he just stopped. He was holding his daughter.”
Josh wanted Reilly more than anything – and Jenna is committed to making sure her daughter knows it.
“She's a little baby girl Josh … She looks just like him. It was a goal to have him hold on to meet his daughter,” Jenna says. “At the end, he would still tell me that he was going to help raise her.”
What are some of Josh's most memorable characteristics?
“He was brilliant and funny,” Jenna says. “The first thing I noticed about Josh was his brain, coincidentally. He had a degree in aerospace engineering. He got it on a dare – someone said, 'I think aerospace is the hardest, why don't you try for that?' And he did. She's going to know that he's smart, kind, compassionate … he would do anything for anyone.”
And that's why Jenna and Josh made the perfect couple – always putting each other first.
Until the very end.
“I threw all my care and effort into him,” she says. “Taking care of yourself can hurt. I found that taking care of me meant taking care of him. It all came down to just loving him, loving every moment with him.”
Now that Josh is gone, Jenna feels a deep responsibility to expose cancer for what it is: a devil that needs to be destroyed forever.
She's well on her way to raising worldwide awareness.
“I don't know who's going to find the answer, but there are a lot of great minds on this planet,” she says. “I don't care who solves the problem. I just want the problem solved.”
Photographer Jennifer Keenan Giliberto followed the couple through Josh's journey, from his diagnosis to his death. The result was an incredible documentary titled “This Is …,” an intimate look at all the ups and down from the couple's perspective.
“I really hope this creates a conversation,” Jenna says. “So far, it's created an international one. I hope people continue to discuss how to solve the problem. Josh can't be with us anymore, but I hope his life proves to be impactful.”
For more information about Josh's journey, visit www.gofundme.com/joshbuehler.
Photos in this story provided by jkennanphotography