Brylee's Wings

Thankful for the gift of time

Editor's note: Journalists Emilee Eagar and Jeffrey D. Allred spent more than four months with 3-year-old Brylee Olson and her family. On this Thanksgiving day they offer the intimate account of one little girl's struggle to survive and the joy that comes from being with Brylee.

The room was still, a quiet moment after the whirlwind that began with the rhythmic thumping of an MRI, the rustling of doctor's notes and admittance papers, and the hiss of the oxygen tube.

Three-year-old Brylee Olson has chemotherapy treatment at Primary Children's Hospital Oct 23, 2013.

Lara Olson clung to her daughter, rocked her gently and began to cry.

"I don't want you to leave me," she said in quiet whisper.

Brylee Olson glanced up at her mother from cradled arms, her large blue eyes glassy, her voice unable to pass from paralyzed vocal cords. The muscles in her face were also stilled, leaving her unable to comfort her grieving mother.

Brylee reached for her mother's hand.

How do you tell your 2-year-old daughter she is going to die? How do you know what her reaction will be? What could it be?

"You have a brain tumor and you're going to die and go see Heavenly Father," her mother said, muting the sharpness of the words with the softness of a still voice.

What followed was a conversation without words — the first of many between a mother and daughter.

"She didn't cry," Lara said. "There was no emotion. She just sat there, held my hand and stared at me."

Hours earlier, Lara was sitting with her husband, Cory, and daughter in a waiting room. Lara was one semester away from a criminal justice degree and was using every moment to study.

That's when the doctor came in: "Come with me."

"He just took off running down the hallway and I was trying to cram books in my backpack trying to follow him," Lara said.

"He took us into this conference room, a gigantic conference room with this huge projection of her brain on the screen. … When you walked in you could see this big ol' mass. I'm not a medical professional, but you could tell something was not normal."

Brain tumor. More specifically, diffuse intrinsic pontine glioma, or DIPG; a tumor in the brain stem. Fewer than 10 percent of those with the condition survive.

"The only question I could get out was how long do we have?" Lara said.

"I don't put times on anything. I believe in miracles," Lara said the doctor replied. But the disease is fatal.

Only 150 to 300 people are diagnosed each year in the United States. Usually only two to three a year suffer the tumor in Utah, but this past year seven children have been diagnosed. Brylee's family learned on March 6 that she is among the seven.

"That's why we put the bucket list together, because we don't know how much time we have with her," Lara said. "We don't know how much time we have before those signs and symptoms show back up."

The Bucket List

"We don't know how much time we have with her …"

The Olsons pulled up to their split-level Price home after one of Brylee's chemo treatments. It was Aug. 31 — only days earlier, results of her third MRI came back showing tumor growth of half an inch.

Waiting on the porch was a box filled with three mesh envelopes.

Brylee squealed as she peered in and saw 4,500 ladybugs in their pliable cages. The instructions said to refrigerate the ladybugs for a few hours before releasing them.

"Ladybug Release in Her Flower Bed." That's what appears as item No. 6 on her bucket list, but the items appear in no particular order for completion.

Lara stood behind Brylee to keep her balanced. Brylee lifted up her arms and dumped all 1,500 ladybugs on one honeysuckle bush, a grin concentrated on her face.

She sat on the porch and watched the ladybugs crawl over the plants, on the stepping stones and on her father's leg hairs.

"Ladybugs, ladybugs, ladybugs …" she sang, offering up her own jingle to enjoy the occasion.

It was the first item accomplished on Brylee's bucket list, and the family still doesn't know who sent the ladybugs in what would be among the first acts of selfless service for a family thankful for every experience with Brylee.

A Trip to Yellowstone

Two days later the Olsons packed up their Chevy Traverse with enough food and clothes for a weeklong trip north. Lara wanted Brylee to experience Yellowstone National Park, No. 16 on the bucket list. Trips to Yellowstone are among Lara's fondest childhood memories as she made family trips from Bountiful to the park.

The family arrived on Sept. 1, and they watched Old Faithful on Sept. 2.

But the geyser is more predictable than the disease and its complications. By night Brylee's temperature had climbed to 103 degrees and the bucket list had given way to the emergency room of an Idaho hospital.

"We were only there for, gosh, a day and a half. Maybe a grand total of two days," Lara said of Yellowstone. "You feel like you can't plan anything fun in your life because cancer controls everything. You never know when issues are going to happen; you never know when fevers are going to happen."

Trips to the hospital would become more regular than trips elsewhere. And they could lead to unexpected events.

Lara remembers coming home from a hospital stay to spend time with her other two children. She walked in the door and 5-year-old Bryker immediately burst into tears.

"Did she die already?" he asked her.

"I really remember that really hard conversation with him," she said. Bryker had sobbed as his mother told him Brylee was going to die. He said he was going to miss her.

Then, using a child's logic reflecting the closeness he has to his sister, he said, "Well can I just trade her for Byrklee? Can Byrklee go and I can keep my Brylee?"

Byrklee, the family's youngest child, will turn a year old in January.

Lara said she held her oldest child for the next two and a half hours and cried.

"He gets the concept kind of, as much as a 5-year-old can understand death," Lara said. "Hopefully when the time comes, he'll be OK with it."

Cory has a father's view: "As a family, it takes a toll on everybody," he said.

"As parents, you want to protect your children and make them feel better — and when cancer happens, you don't get that option," Lara said.

It can also strain a marriage.

"We don't fight like normal people fight. We fight over treatments," she said. "Your emotions are so high-strung, you don't always know what the other person is feeling in the cancer world."

They make it a point to have couple moments — it can't always be about cancer.

"Bad days come, but if you're not together at the end of the day it's just, dealing with this you need to be together and on the same page and support each other," Cory said. "At the end of the day, we both know that's the case."

Ride a horse

The bucket list is as much about family as it is about Brylee.

Tawny Conder has known Lara Olson since they met a year ago at a party. She grew up on a farm and spends time caring for her four horses.

She was the perfect answer to Bucket List item No. 14, "Ride a horse," which occurred Sept. 19.

"She was in heaven," Conder said, as she recalled Brylee clinging to the saddle on Paleface, then Louie, her mom always sitting behind her.

"Brylee was a little bit afraid of them at first, but once she got started she didn't want to get off."

The Olsons brought along cousins and siblings and let the kids take turns riding together.

"It was kind of special knowing that this is one of the last memories they're going to be able to build with Brylee," Conder said. "And to involve family, it was pretty touching to be a part of that."

Disneyland and the beach would follow about two weeks later, Nos. 4 and 5 on the bucket list.

"She was too busy running from one thing to the next," Lara said. "She wanted to meet every character, even if she had already met them."

Brylee's favorite is Cinderella. She ran up and gave the princess a "gigantic hug," something uncharacteristic for the toddler who rarely leaves her mother's arms.

Brylee met all of the princesses and went on all of the children rides. She visited the Bibbidi Bobbidi Boutique where she chose a dress, got her nails painted and her makeup done. Her blonde wisps of hair sprinkled with glitter and topped with a crown.

"She loved it," Lara said. "She walked around the park the rest of the day that way."

The next morning, in the hotel, they noticed a change.

"She started bruising really, really bad," Lara said.

They took Brylee to the emergency room, this time in California. It was just as fast as the hospital in Idaho; as a child with cancer Brylee never has to wait. But Lara said she felt more at ease here during this trip because it was a pediatric hospital.

Doctors told them it was a common side effect of her chemo, a chemo that attacks the capillaries in an attempt to starve the tumor.

"If you touch the girl it busts the capillaries," Lara said.

The tumor is deadly.

"The survival has been on the order of less than 10 percent," said Dr. Carol Bruggers, University of Utah professor in pediatric hematology oncology.

"So it's not zero, but I think 10 percent is probably optimistic."

Despite maximum doses of chemotherapy and high doses of radiation, Bruggers said the overall prognosis is almost always set.

"We've tried all kinds of things," she said. "It's not a common tumor and it's very challenging to treat and that has not changed, which is the most frustrating thing, over decades."

In May, the couple took Brylee in for a post-treatment MRI. The tumor had shrunk 51 percent.

"We were ecstatic," Lara said. But the joy was short-lived.

"It's typical to see improvement for several months, and then, by about a year, half of the people already have significant progressive disease," Bruggers said. "And that's a typical course for this."

An MRI on Aug. 21 showed Brylee would likely not be a part of the exceptional 10 percent.

Cory walked into the room where his wife had just heard the results.

"The second I opened the door, I knew that it had grown," he said. "Just the way that I saw her. "

The doctor told the Olsons the tumor had grown about half an inch. She suggested another protocol. Brylee would get chemo treatments of irinotecan and Avastatin every two weeks.

"One dose of Avastatin costs more than our house," Lara Olson said.

Lara said the doctor told them that with that much tumor progression, treatments don't have much effect. When the tumor grows that much, they're typically gone within three months.

"And so that puts us at Christmas," Lara said.

White Balloons

On Oct. 5, Lara stood in the crowd with her family and watched as one mother after another walked to the stage. They each took a white balloon and at the count of three raised their hands and released them into the air.

Seeing those white balloons in the sky was not easy.

"I melted down in the middle of the crowd because of those white balloons," she said. "Those white balloons represent every angel, every cancer kid, that has passed away due to this horrible disease."

Angels are a part of the conversation in the Olson home. Death can be a harsh topic. It's easier to refer to the time when Brylee will get her wings. But seeing the balloons rise brings tears.

"Next October, when they do the CureSearch Walk again, she's going to be one of those white balloons," Lara said of Brylee. "And I don't want her to be a white balloon. I want her to be one of the little kids that walks up on stage and gets a medal for being a fighter."

The Elephants

Eric Peterson said there is almost nothing stronger than an elephant, except perhaps a child suffering from cancer. So it was natural for Brylee and Christie, the painting elephant, to meet.

"Feed the elephants," No. 9 on Brylee's bucket list, occurred on a drizzly day in November.

Three-year-old Brylee Olson watches as an elephant paints a picture for her at Hogle Zoo Nov 5, 2013.

"It seems like everybody and their brother wants an elephant wish," Peterson, Utah's Hogle Zoo elephant keeper, said. "So it was, to me, just another wish that people have and I didn't think anything more of it."

But that changed when the little girl Brylee was in her mother's arms standing before the elephant cage, bundled in her pink coat watching every stroke Christie made with the paintbrush grasped in her trunk.

"I loved it, but I will say in 20 years it was the hardest day of my career," Peterson said. "I realized that day that people, we always sweat the small stuff. When you're going through something like that, you don't sweat the small stuff."

As Peterson turned the painting Christie had done toward Brylee, she leaned in to her mother, but a shy smile escaped through the bundle of pink.

"It was amazing. I could see her smile, which is one of those times it was hard to keep my composure," he said. "These people can't, they can't worry about tomorrow because there might not be a tomorrow. They just have to be happy with what they've been given, which is another day with their daughter."

Blessing

Oct. 13 was among those special days and would carry the family through weeks of anticipation leading up to one of Brylee's final MRI's. She wanted to meet President Thomas S. Monson, No. 1 on the bucket list for the Mormon family.

"There are a lot of people that request things of President Monson, and he obviously can't respond to every one, but somehow he felt inclined to respond to this one," Elder W. Craig Zwick, a member of the First Quorum of the Seventy, said. "I feel like I was really blessed to even have been on the receiving end of this."

He came to the Olsons' home on behalf of President Monson to meet and comfort Brylee and her family.

"You're amazing … look at those eyes," Elder Zwick said as he met her for the first time.

He told Brylee President Monson was sad he was not able to attend, but he said he is thinking about Brylee and their family. He spoke to the Olsons about the will of God and assured Lara that she would be with her child after this life.

"I just want her here, with me," Lara whispered.

With Brylee asleep in Lara's arms, Elder Zwick, joined by Brylee's father, placed his hands on Brylee's head.

"He gave Brylee one of the most amazing priesthood blessings I have ever heard in my entire life," Lara said.

Elder Zwick told her miracles have not ceased; the family has already seen an extension in their daughter's life since the diagnosis and two-week hospital stay. Lara said she prays for a miracle every day.

Before leaving, Elder Zwick left a photo of President Monson and a book called "Consider the Blessings," both signed by the LDS prophet. He left one more gift, that of comfort by inviting the family to his home for dinner the following month.

"I think you see in her a, just a tender spirit, that is just so well-prepared," he said of Brylee. "Who knows how long she'll be here in mortality, but it probably doesn't matter too much because she's pure. Her heart's pure and so really what this is about for me is more her parents and helping them to feel loved and supported."

Finding Peace

Lara Olson woke to rain-dripped windows in the early hours of the morning. She had hardly slept.

"When it comes to cancer, you try really hard not to get your hopes up and you try really hard to make yourself realize that bad news is going to happen," she said.

They arrived at Primary Children's Hospital and dressed Brylee in her hospital garb. She collected a doll, blocks, a toy train, and a pink shopping cart full of trinkets from a shelf and placed them in close reach on a chair next to her mother while they waited for the anesthesiologist.

This is the MRI Lara and Cory had been pointing to.

Brylee's eyebrows and nose turned pink while she cried. The MRI technicians hooked her little body up to handfuls of wires and placed tape over her eyes to keep them shut. Lara steadied her daughter while she slipped into sleep.

"Even after seeing her symptoms worsening over the past two or three weeks, I walked into Friday hoping that there was just swelling and pressure and that we could put her on a med and it would be fine and that the tumor was stable or had shrunk."

A few hours later, Lara rocked Brylee in the familiar rocking chair, swaddling her as she struggled to wake up. Cory sat nearby on a cot-sized bed waiting for Dr. Bruggers to come in. He popped the lid on a can of Diet Mountain Dew for Brylee. Somehow it's the drink that comforts her during chemotherapy treatments and has become part of the routine.

But this was not a routine day.

"I'm just going to say this: It's a little bit bigger," the doctor said.

Cory's head dropped a bit lower. Lara offered a question, delivered as a rebuttal.

"Is this it? Because I thought those were our last options."

The MRI results showed the tumor had grown 24 percent. Radiation treatment, chemotherapy, steroids, and then more chemotherapy after that were constant companions during the pursuit of the bucket list.

"It's OK to say, 'Let's stop this,'" Bruggers said. "That's a hard place to get to. … I don't think we're there right now."

The doctor told the Olsons that the medicines have given the gift of time to the family. Now Brylee will take a less-intense chemo treatment and steroids.

"Mama," Brylee called, holding up a blue princess fruit snack with a question in her eyes.

"It's Jasmine," Lara answered, her focus leaving the doctor long enough to deal with the easier, yet equally important question.

Lara silently cried, caressing her daughter's hand, swaddling her tighter.

"It was just devastating hearing the news from Dr. Bruggers that it had grown," Lara said, just days after the latest scan. "Maybe it shrunk between August and October. And maybe, who knows, it will shrink in January," Lara said, a hint of hope in her voice.

For now Lara and Cory are pointed toward the holidays. She wants Brylee and the family to enjoy Christmas, the season of hope. But first there will be Nos. 10 and 20 on the bucket list: "Go sledding." "Hand print in cement."

They'll leave their Price home, crossing the front porch that displays a stone angel with wings, and drive off to complete the newest adventure. No matter what happens, or when it happens, the angel will stay perched on the front porch, a reminder of the brave little angel inside.

"I mean, I will never know until we get to meet Heavenly Father and Jesus and they can tell me," Lara said, of why this hit Brylee.

On Thanksgiving Day, the whole family will be together, which is rare for Lara's parents. One usually stays home, missing parties and other family functions, to watch her youngest brother, who has autism.

All four of Lara's brothers, parents and grandfather will gather for the feast, another moment and memory for Brylee in a short lifetime filled with them: Flying in an airplane, check; Halloween train ride, check; picture-taking session, check. A tea party at Thanksgiving Point, done; cheerleading with University of Utah cheerleaders, done; cheering with BYU cheerleaders, completed.

And last Nov. 8, a bucket list-inspired prom, "because she's never going to be able to go to prom," Lara said.

That night Cory took his daughter in his arms and made his way to the center of the dance floor as dozens and dozens of friends gathered to watch. The two slowly danced back and forth to the music.

"We're being saved by this. Look at what it's doing to us. It's bringing out the good in everybody," Larry Olson, Cory's father, said as he watched his son and granddaughter. "I think that's how we're being saved, by serving one another."

It makes today's Thanksgiving prayer an easy one for Lara.

"As hard as that is, I'm grateful for every minute I have with her."