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Pieces of Kaylee’s memory; Parents remember daughter, encourage advocacy

By Erika Pedroza | Published Saturday, February 2, 2013

A baby blue drawstring bag, adorned with Snow White’s seven dwarves, contains hundreds of colorful glass beads. Some are round, simple and solid, speckled or glow in the dark. Others are more elaborate.

They’re small representations of the courageous, two-year battle fought by Kaylee Avina.

The 3-year-old daughter of Maria Fernanda Avina and Armando Luna of Decatur lost her fight to a rare form of childhood cancer last December – but not before she put up a bold fight for her young life.

MYSTERY UNSOLVED - Although she could not be diagnosed with a specific form of cancer, Kaylee Marie received treatment for Ewing sarcoma. "(Hers) is an unknown type of cancer," said her mother, Maria Fernanda. Messenger photo by Jimmy Alford

MYSTERY UNSOLVED – Although she could not be diagnosed with a specific form of cancer, Kaylee Marie received treatment for Ewing sarcoma. “(Hers) is an unknown type of cancer,” said her mother, Maria Fernanda. Messenger photo by Jimmy Alford

The sack of about 300 handcrafted beads proves it, a collection that quickly outgrew the piece of string it first hung on.

Twenty glow-in-the-dark beads represent the radiation treatments she underwent, and 73 transluscent purple balls mark each time she was hooked up to an IV.

She visited the clinic 32 times, as marked my blue beads, and 22 red adornments symbolize the blood transfusions she had.

Kaylee also received 26 solid white gems for every course of chemotherapy she completed.

“I counted 40 black beads, which means every time she was poked,” Maria said. “But I am sure we are missing a lot of those since when she came home every day after chemo she would get shots to bring her white blood cell count up. I’m sure I’m missing a lot of the other ones, too.”

Larger milestones are denoted by more detailed pieces – stars for every surgery she underwent, a smiling face for when her hair fell out.

Close to 100 yellow, solid glass spheres denote the number of nights she stayed in the hospital.

“She was so strong,” Maria said of her daughter. “Nothing would put her down. Of course she was really sick. The chemo they were giving her, they said that if it got on your skin it could burn you. I can imagine what it was doing to her inside.

“But she would smile through everything. Watching her how she would fight – that’s what motivated me to be strong like her.”

REMEMBERING KAYLEE - Kaylee Marie Avina loved "Yo Gabba Gabba!" and storytime. But she may be best remembered by the resilience shown in her courageous fight with a rare form of childhood cancer, as depicted by a sea of beads. Messenger photo by Jimmy Alford

REMEMBERING KAYLEE – Kaylee Marie Avina loved “Yo Gabba Gabba!” and storytime. But she may be best remembered by the resilience shown in her courageous fight with a rare form of childhood cancer, as depicted by a sea of beads. Messenger photo by Jimmy Alford

BEGINNING TO COLLECT

Kaylee turned a year old on Aug. 7, 2010. Not long after that, she began having seizures.

“But only one side of her face was moving a lot,” her mother recalled.

Immediately, Maria took her daughter to Wise Regional Health System in Decatur, where she had a CT scan.

“They confirmed she had a mass near her brain, and that’s probably what was causing the seizures,” Maria said. “They transported her in an ambulance to Cook Children’s Hospital (in Fort Worth), where they did an MRI and confirmed it was a tumor.”

A couple of days later, Kaylee underwent surgery to remove the mass that was lodged between her skull and brain. After a series of pathology tests, 1-year-old Kaylee was diagnosed with cancer in October of 2010.

“It had the characteristics of Ewing sarcoma, so that’s what her diagnosis was. But it wasn’t a positive of that,” Maria said. “The tumor was between her skull and brain, but it wasn’t attached to her brain. So it wasn’t a brain tumor. It was just growing there.”

Doctors believed the discovered tumor was a secondary to a main tumor, perhaps on her spine. A series of tests and MRI exams yielded no leads.

“They sent her pathology everywhere – to the Mayo Clinic in Minnesota – nobody had an answer for us,” Maria said. “They don’t have a name for what she had. It’s an unknown type of cancer. Whatever treatment they did was just a guess. There was never a treatment that was confirmed that could help her. All they did was the best they could. It wasn’t enough.”

Kaylee underwent eight months of the strongest dose of chemotherapy permissible for young children – seven days straight, every other week.

“It was really hard on her. It made her really sick, really fragile,” her mother said. “They had to put a G-tube in her belly because she wouldn’t eat anything. Chemotherapy brings you down totally. She was really skinny; she didn’t walk until she was 2 because she was so fragile. She was sick all the time. Even if we got sent home Friday night, I was going to be back Sunday or Saturday night because she had a fever. We already knew we’d be in the hospital. It made her immune system weak.”

Kaylee’s chemo treatment ended in June of 2011, and she quickly returned to her energetic, curious ways.

“It was like we got her back,” her mother said. “She was always happy, always trying to do something naughty. She didn’t really have any issues, just side effects of the chemo – she would get sores in her mouth, but that didn’t stop her.

“She would love to be outside, playing soccer, fishing – she was really good at fishing – swimming, anything. If she was outdoors, she was happy,” Maria continued. “She loved ‘Yo Gabba Gabba!,’ and she loved to read. Every night she would say, ‘Mommy, storytime?’ She loved dancing and singing – ‘Old MacDonald Had A Farm,’ ‘The Wheels on the Bus,’ ‘Twinkle Little Star’ – she would love, love, love that song.”

Kaylee retained that bubbly personality for about eight months, until the headaches started again.

“They were severe because she would cry, and then she would fall asleep right afterward from the pain, I guess,” Maria said.

After more than a year of MRIs that came back clear, they found a recurrence in February of 2012.

“It was in the exact same place; it was the exact same thing,” Maria said.

YOUNG LOSS - Armando Luna, 26, and Maria Fernanda Avina, 21, lost their 3-year-old daughter to a rare form of bone cancer last December. Messenger photo by Jimmy Alford

YOUNG LOSS – Armando Luna, 26, and Maria Fernanda Avina, 21, lost their 3-year-old daughter to a rare form of bone cancer last December. Messenger photo by Jimmy Alford

ANOTHER STAR AND 20 GLOW-IN-THE-DARK BEADS

Kaylee underwent a fourth surgery to have the new tumor removed. (Doctors inserted a G-tube after the first tumor removal procedure and later a port.) This time around, doctors opted for radiation. That March, the family of four – including Kaylee’s younger brother, Armando Jr. – packed up and headed down to Houston, where Kaylee, now 2, underwent six weeks of proton radiation at M.D. Anderson Cancer Center.

“It was like a vacation for us,” Maria said. “During her radiation, she was fine. There was this huge park in central Houston that we would go to every day after radiation. We’d stop and get McDonald’s, and then go have lunch at the park. It was our little ritual. There was a train at the park, and she would make us get on it every day, every single day.”

In the middle of the treatment, Kaylee was introduced to a new love – the beach.

“We got to take her to the beach for the first time down in Galveston,” Maria said. “She had her port so she couldn’t get in the water, but everything else, she could do. She loved it. She loved the beach. She was happy as can be.”

Just as it was after finishing the first round of treatment, Maria and Armando had their cheerful, talkative daughter back and the routine MRIs remained clear.

Then on the test run in October of 2012, doctors spotted an abnormality of her skin believed to be scar tissue from the radiation.

“But then she started getting headaches a couple of weeks after her MRI,” Maria recalled. “I called back to the doctor’s and told them about that. They decided to do another MRI, and that’s when they found that the abnormality was a tumor, and it had grown 3 centimeters in just a couple of weeks. In those weeks, she would always have her hand to her head. I can only imagine what she must have felt from the inside, because it was growing. It was growing really fast.”

This mass’s aggressive nature triggered a rapid downward spiral.

“She started getting really sick, really fast,” Maria said as tears welled in her eyes. “They told us that we can do more chemo, but that to them, it wasn’t going to help her any. That it was just going to keep her in the hospital. They said we could do that, or we could put her in hospice. We decided to just keep her comfortable while we could.”

That was at the end of last November.

“It was three short weeks after that,” Maria said. “We actually took her to Miami. She would always ask us to go to the beach. Every day she told us, ‘I want to go to the beach. I want to go to the beach.’ We were supposed to go to Disney World, too, but she was so sick we couldn’t. We made it down there, and we took her to the beach. But that was all we could do, and then we came back.

And that’s when she passed away, Thursday, Dec. 6, 2012.”

PIECES OF THE ANSWER - Just like small, symbolic beads on a necklace tell the story of her daughter's battle, Maria Fernanda hopes sharing Kaylee's story is a part of the overarching effort to bring awareness and, ultimately, a cure to childhood cancer. Messenger photo by Jimmy Alford

PIECES OF THE ANSWER – Just like small, symbolic beads on a necklace tell the story of her daughter’s battle, Maria Fernanda hopes sharing Kaylee’s story is a part of the overarching effort to bring awareness and, ultimately, a cure to childhood cancer. Messenger photo by Jimmy Alford

STRINGING MEMORY TOGETHER

Like the beads that have been lost, it’s easy to lose track of the details of Kaylee’s journey. It’s difficult to distinguish how many of each procedure she underwent.

But taken together, the dense sea of colored glass shows the depth of her struggle.

That notion permeates and drives Maria’s advocacy efforts.

“There are so many different kinds of childhood cancer,” Maria said. “Leukemia is the most popular one and because it’s the most researched, there are more treatments, there is more medicine therefore it has the best outcome of being cured. But even with that, they have a lot of issues after the treatment – infertility, they are likely to develop other types of cancer. Doing more research, they can do something about it.”

Maria recognizes the push for that includes everyone outside the medical realm as well as doctors and staff. But an apathy hinders such progress.

“A lot of people are ignorant to cancer,” she said. “I can count myself before all of this with Kaylee. You hear about it, but you kind of just turn your head to it because it’s never gotten so close to you. I even have family members that have said, ‘I saw her so sick, and I couldn’t go visit you anymore.’ What do you think I feel whenever I’m there every single day?

“Don’t turn your shoulder; don’t turn your head,” Maria advised. “We can make a difference. Even if it’s taking a meal to a family member battling this disease or maybe taking them some magazines while they’re in the hospital. Or maybe a small donation – there’s so many organizations for cancer. We stayed in the Ronald McDonald House. That helped us a lot. There were organizations, like Candlelighters that took coffee and donuts on Monday morning and Friday nights, pizza. Small things like that.”

She also suggested visiting a hospital and getting exposed to the harsh reality of cancer’s effect.

“You can volunteer for the hospital and go play with the children,” she said. “Spending so much time in the hospital and seeing all these kids, bald heads everywhere – that was normal to us for a long time. And they never gave up. They would play; they would run around. If people can see that – even for one day – they can see that these kids need our help. They need more fundraising; they need more awareness. There’s just so many things you can do, and they’re little things.”

For Maria, that includes sharing Kaylee’s story, in the hopes that no other parent ends up in a similar situation.

“The hardest thing was the unknown part of it – watching her be in pain and not knowing if she’s going to be healthy one day or if I wasn’t going to have her one day,” she said. “You never imagine that happening to your kids, especially if they’re so little. She was healthy up to that one time. I mean she had the regular fever or cough, but she was healthy.”

Perhaps Kaylee’s story is a star or a glow-in-the-dark bead on the string of adornments to find a cure. For that, Maria is willing to make a seemingly tiny contribution that can have a profound effect.

“I feel like I need to keep that memory alive of her,” she said. “Just talking about her makes me feel like she’s here. I do what I can to get the word out about childhood cancer, even if it’s just telling her story, I feel like that’s a big help. You need to put faces to this disease. Some people don’t realize how close it is to them.

“I don’t want to not do anything about it; I want to make a difference,” she continued. “Even if it’s just one person that’s going to listen; even if it’s small, it’s one step closer to where we want to be.”

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