Olivia spent nearly all of her young life ill. She and her twin brother, Wyatt, were born four weeks early, in February 2012. They needed oxygen and an in-home nurse. Combined, they weighed less than a gallon of milk.
In July 2012, the twins were healthy enough to go off of oxygen. This, their mother Katie Caldwell-Burchett thought, the oxygen and the prematurity, this would be the worst her kids would have to go through. She was a 24-year-old stay-at-home mom living in Rawlins with her first husband.
That same week, Olivia was life-flighted to Denver after suffering a wave of seizures, including one in her pediatrician's exam room.
In Denver, Katie found herself in the center of a blur of lab coats and machines, MRIs and CT scans. Late that first night, one doctor told her the tests showed there was something there, but that it wasn't cancer.
Before that moment, the word hadn't even entered her mind. She'd braced for a difficult diagnosis. Epilepsy, maybe -- that was bad, but the family could handle it.
"And then the next day, it’s 'Who told you it wasn’t cancer because that’s cancer.'"
Olivia had a pediatric astrocytoma, a syllabic mouthful that disguised a blunter truth: The 5-month-old had a tumor that had spread through her brain and down her little spine like a spiderweb.
"When Olivia first presented, she was extremely ill at the time," said Dr. Nick Foreman, the neuro-oncologist at Children's Hospital Colorado who would treat Olivia for the next 15 months. "She presented with a low-grade tumor, which you would think – the word 'low grade' makes it sound as if things are good. But actually it was a tumor that went through much of her brain."
In the weeks that followed, the whirlwind Katie and Olivia and their family had found themselves thrust into accelerated. It threw the family onto a pull-out couch in Olivia's Denver hospital room, where they lived out of a suitcase for the first two weeks. They rotated through a series of hotels and condos after that.
Olivia had a port placed in her tiny chest so drugs could be pumped directly into her blood stream. She started high-intensity chemo. The family spent three days a week in Denver, then went back home to a revolving door of providers to help Olivia, who was falling behind her developmental goals.
"It was just so hard to watch this little baby go through so much," Katie said. "It’s adult-strength chemo, just minimized for this little person."
Wyatt, Olivia's twin brother, would bring his sister her pacifier and pile toys up on her hospital bed. And slowly, her health improved. She could sit up, her eyesight improved, she could track Katie's finger.
"Her development, she started doing some things that she hadn’t been able to do before," said Candice Frude, a nurse who had started helping the family when the twins were born early. "She was able to sit up without assistance, we saw progress in her physical development over that time, that she was getting better."
By early 2013, the news was good. The tumor was gone, all signs of disease driven away. Olivia may still have some spasms, but hope bloomed.
"We got the news that her cancer had gone away, and she was doing pretty well right around her first birthday," Katie said. "And then a couple months later, all the signs came back."
Frude remembers clearly when she first suspected the cancer had returned. She'd been helping to check Olivia's progress, coming to the home regularly to check her vitals and her development.
"Over a couple of weeks, we had a very simple routine," she said. "I'd go in, I would sit with Olivia for a little while, we’d talk about how things were going, I'd do her blood pressure. Olivia would do the same thing: She would sit in my lap, she would be eating, and she would try to kick me and we would laugh and giggle.
"Then I went on a visit, I went to go take her blood pressure, and Olivia didn’t do anything. I don’t know how to explain it, but something was wrong."
The family had planned a trip to Reno, where Katie is from, to have Olivia baptized by Katie's childhood pastor. Olivia had been baptized in those first frantic days in the hospital, right before she had a risky biopsy. This time, the family wanted to have the twins baptized together.
But the signs grew more serious. Olivia started having seizures again.
"We wanted to do it right, do a big celebration and the doctors were like, 'Let’s just look at her when she comes back, I think you need to do this,'" Katie said. "And sure enough, it was the one and only time I got to take her back to Reno."
Scans proved that the tumor was back. It was larger than before, and the prognosis was grim. The doctors asked Katie and her husband if they wanted to keep fighting or if they wanted to begin hospice care.
"Just, I mean, terror," Katie said. "Thinking, like, 'We’ve gone through this, how can this possibly be coming back,' you know, and we’d been warned, she has a very curable form of cancer, but once it recurs, there’s generally very little they can do."
The family chose to keep treating. But the options were limited. On Oct. 17, 2013, Katie took Olivia to Denver for an MRI to see if she needed a shunt, which is essentially a drain to let fluid out of her brain. Her husband was at the hotel with Wyatt. They weren't expecting significant results. Then Dr. Foreman walked into the conference room, followed by Olivia's neurologist, a nurse practitioner, a social worker and a nurse.
Foreman didn't even sit down before he told Katie the news was not good. Then he realized Katie was alone. He asked if she wanted anyone else there.
"No, I just need to hear what you need to tell me," Katie said.
The doctor sat.
"I'm really sorry, but it showed her tumor has gotten a lot bigger really quickly. I'm really sorry to tell you that your daughter is going to die."
The rest of the conversation was a blur. Olivia, who was four months from her second birthday, was sleeping next to her mother. Katie felt like she was looking down on the scene, watching someone else's life.
"I left, and I went back to the hotel and I told my ex-husband and then had to call and tell the rest of the family," she said. "That was one of the worst parts, was having this news to myself and having to share it."
You have free articles remaining.
The family went back to Rawlins. Frude agreed to stay on as Olivia's hospice nurse. The doctors had said the family may have weeks or months before Olivia died.
It was five days.
"It’s not a beautiful process, a child dying," Frude said.
On the final day, Katie and her then-husband and their family all stayed in the living room together. Olivia died at 7:09 p.m. on Oct. 22, 2013.
Frude gave her one last bath. She called the coroner, who took Olivia and put her in his front seat. The family buried her that weekend, with the same pastor who baptized her presiding.
The next day, Wyatt was diagnosed with type-1 diabetes after his blood sugar spiked. He was life-flighted back down to Children's Hospital Colorado. When Olivia's neuro-oncology team saw the family's name back on the hospital rolls, they came running.
"It was something where I told myself I will never ever step foot in Children’s again," Katie said. "This was just a horrible place. I found out my child was going to die here. There’s nothing good about it. And being forced to go back down there so quickly with Wyatt ripped that Band-Aid off."
Back in Rawlins, the family recovered from its latest trip to Denver. Katie wanted a purpose. Even before Olivia's death, she had wanted to do something to support pediatric cancer research.
"In the months before she passed, we kind of talked a little bit about, 'Oh we’d like to do something to help in this fight and make what happened to her better,' hoping she’d survive and be a part of it," Katie said. "Then she passed, and it kind of amped up the whole dedication and wanting to do something."
She prayed on it, and in one sitting, the entire plan came together: the foundation's logo, its name, its mission, its board members. She began making phone calls. A law firm agreed to do the initial tax filings for free. An accountant helped them through the regulatory hoops (that accountant, Tim Hoffman, still handles the foundation's books). Every person Katie called to become part of the board said yes.
"This was her calling," Frude said of Katie starting the foundation. Frude is still on the board after getting a call from Katie while she was in the grocery store. "That’s totally her personality. She’s a go-getter. Everything in her life, she followed through."
In its infancy, the board met around Katie's kitchen table in gatherings that would last three hours, board members' kids running around and through the meetings. Katie called Children's to ask who the newly-christened Olivia Caldwell Foundation should support. As it just so happened, Foreman had his own research lab, one of the largest in the country, with several physician-researchers and a staff of more than 30, all focused on pediatric neuro-oncology.
Foreman remembers Katie talking about doing something to help research efforts when Olivia was sick. He'd heard that before, from other parents who, for whatever reason, weren't able to follow through.
"I mean, you know, a lot of parents try and commit to doing some research and a lot of parents are very altruistic," he said. "To be honest, so many have difficulty in translating that into action, and I think what Katie is really amazing at doing is translating the altruistic desire to help other children. She can translate that into action, which is not that usual."
The foundation raised $21,000 in 2013. In those days, $2,000 was a lot, Frude said. Then it was $98,000 in 2014. It topped $120,000 by 2016 and $130,000 the next year. To date, the Caldwell Foundation has given $425,000 to support Foreman's research, which has focused on the genetic mutations that drive pediatric tumors. That $425,000 has helped unlock millions in grant funding. Through his research, Foreman determined that Olivia's tumor was exacerbated by a genetic mutation that made her immune system turn cold.
The money's come from the foundation's adult prom, the Butterfly Ball -- Olivia loved butterflies -- which this year includes Jake Carlson, the Casper police officer who was nearly shot to death two years ago. The foundation holds golf tournaments and a color run.
"What it did is just helped us really concentrate on this issue and concentrate on this issue of using money from the Caldwell Foundation to actually improve our molecular techniques and really join in the effort to actually identify the different molecular genes driving tumors," Foreman said. "Basically, it gave us the capability of testing every single child who we actually saw."
Through the funding -- which Foreman and Katie said was not required to be used to research Olivia's disease -- Foreman's team has found targeted treatment for children like Olivia. Rather than the general approach of intravenous chemo, the researchers now can use a specific pill.
"We have people who, to be honest, would’ve died with conventional therapy who are fine now," Foreman said, adding that the treatment had effectively cured that type of tumor.
"It affects five kids a year in the U.S., so it's a rare disease," Katie said. "But that's five families that don't have to bury their kids."
The foundation has been the purpose that Katie sought after Olivia's death.
"I’ve said so many times if I didn’t have this foundation, I don’t know how I would’ve survived losing my daughter," she said. "I went to every single chemo. I never left her. I was always home with her, I laid in that hospital bed with her when she had chemo and played with her for hours and let her lay on my chest and didn’t move. She was everything.
"It gave me a really beautiful way to keep being her mom and that’s what I really needed, was to not not be her mom anymore."
The foundation has not rested on its research-centric laurels. In the past few months, it moved into a space behind Wyoming Medical Center and opened a clinic. Every few months, specialists from Children's come up to Casper to treat chronically ill kids from Wyoming. Katie knows well the stress of traveling to Denver for treatment. The clinic, which is fully funded by the foundation, hopes to expand in the coming years to include more disciplines, more doctors, more patients.
"We hope that through our local efforts today with the childhood pediatric clinic, we’re making leaps and bounds of impact on our local population of Casper and central Wyoming," said Drew Ballew, the foundation's board president. He joined after a friend talked about Olivia's illness. His own son was about the same age. "That’s obviously been a goal, to expand the scope of the foundation where it impacted our local community more so, while maintaining our fundraising efforts for Dr. Foreman."
The clinic is clean and freshly painted. It's warm and lacks that carefully sanitized smell that defines doctors' offices the world over. The inside of the exam rooms are painted over with elephants and ladybugs, tigers and bison and bears. Down a hallway, butterflies float.
The foundation has come a long way and hundreds of thousands of dollars from the hourslong kitchen table board meetings of those early days, when fundraising revolved around garage sales. Katie has an office in the back of the clinic, through the waiting room and past the exam rooms and nurses station.
On the wall behind Katie's desk, up above a shelf with her high school and college diplomas, are three frames. On the right is a picture of Olivia, sitting in her high chair with a feeding tube snaking up into her tiny nostril. Next to the photo is a framed platitude.
"Those we love don't go away," it says. "They walk beside us everyday; unseen, unheard, but always near, still loved, still missed and very dear."
To the left of that saying is a picture of Katie and Olivia. Katie is looking down and smiling at her little girl, the way parents do for baby photo shoots. Olivia's eyes are bright, her face caught between a smile and a look of curious suspicion. Wrapped around her head is a pink headband with a big pink flower. The flower's petals sit against her skin. At their center is a bud that's just beginning to unfold.