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December 5, 2009

With less than a month to live, Sierra Cooper lives a dream

By Sue Loughlin

CLINTON — The kiss was unlike any other she had received, and it came from a funny-looking guy with a big nose and rubbery skin.

But the joy on Sierra Cooper’s face was unmistakable as she stood in a pool at the Indianapolis Zoo, and Kimo, the 450-pound bottle-nosed dolphin, lifted his head out of the water and gave her a slippery, wet peck on the cheek.

In late November, the 21-year-old Clinton resident fulfilled one of her dreams by spending a day with the zoo dolphins and getting to know Kimo, Sundance and that mischievous juvenile, 7-year-old Jett.

Donning a wet suit and life jacket, Sierra spent 30 minutes in the 80-degree water with her favorite animals. Beforehand, she attended an educational program about dolphins and then watched a scheduled performance.

Later, she had her own, individualized dolphin experience and got to touch them, feed them and give them commands.

“It was awesome,” she said.

Spending time with the dolphins was not only a dream come true, but also it is one of Sierra’s last wishes.

She is dying, and her health care providers say she probably has less than a month to live.

Life with CF

Accompanying Sierra at the zoo was her mom, Sallie Cooper, as well as staff from SouthernCare Inc. hospice, which has been caring for her since early October. Other relatives attended, including Sierra’s dad, Steve.

Sierra has an aggressive form of cystic fibrosis, a disease that affects the lungs and digestive system.

It causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. The disease also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

“It’s a horrible disease,” Sallie Cooper said. “It has taken my daughter away from me so quickly.”

Sierra is in great pain, and her lungs and other organs are shutting down. She has been in the hospital about 30 times this year and has undergone several stomach surgeries.

Sierra also has muscular dystrophy, which has affected movement in her legs.

“They’ve given me two weeks to two months to live,” she said from her apartment, where her mom lives with her to provide 24-hour care. Hospice staff visit Monday through Friday and on weekends when needed.

“They don’t think I’ll be here for the New Year,” said Sierra, who is on oxygen24/7 and wears a backpack she calls her “boyfriend,” which contains fluids and pain medication that she gives to herself intravenously. She had been using a feeding tube, but now just restricts herself to smaller, more frequent meals.

She also must take about 30 different pills each day.

“It’s sucking the life out of her,” Sallie Cooper said. “I would not wish this on anybody. In my eyes, I’m living every parent’s worst nightmare.”

At this stage of Sierra’s illness, the goal of hospice staff is to provide as much comfort as possible because her lungs are not responding to treatments, said Michele Taylor, nurse and clinical director for SouthernCare in Terre Haute.

Before Sierra moves on to what she calls “a better place,” she has a last few items on her to-do list, including going to see the movie “The Blind Side.” She and her mom recently went to see “Twilight Saga: New Moon.”

Most importantly, Sierra wants to spend as much time as possible with family and friends during the holiday season.

In her government-subsidized apartment, where she’s lived since August, she has a white, artificial tree with pink lights, bulbs and garland. Her dad gave her a pink computer as an early Christmas present.

On a wall is a sign with a message that carries special meaning: “Live today like it were your last. Laugh until your belly aches. Love with all your heart.”

Undaunted spirit

Sierra’s positive outlook on Tuesday belied the pain and suffering she’s experiencing inside. Her cystic fibrosis wasn’t diagnosed until she was 20, and it is far more aggressive than anyone originally anticipated.

A 2007 graduate of South Vermillion High School, she has lived an active life that has included 4-H and the high school swim team. She’s probably well-known throughout the Wabash Valley for her appearances on the local Jerry Lewis Labor Day muscular dystrophy telethon.

She earned a black belt in tae kwon do and was the 2002 Vermillion County Fair Princess. During her 4-H years, she trained sheltie dogs and took honors at the Indiana State Fair.

She’s also had “tons of boyfriends,” Sierra says with a smile.

During the last 11/2 years of high school, she was too ill to attend classes and received homebound instruction. She had developed stomach problems and frequently suffered pneumonia or bronchitis that sent her to the hospital. At the time, the family didn’t know it was cystic fibrosis.

In the face of death, Sierra is at peace. She already has dealt with her anger and her grief.

“I’m not scared at all,” she said. “I know I’m going to a better place … I’ll be pain-free and I’ll be able to run again. No oxygen; no pain pump; no fluids. I’ll be normal. I’ll be able to do what other people have been able to do.”

She receives regular visits from Pastor Nic Elliott of State Line Christian Church, and together, they do Bible studies. “God is there for me,” Sierra said.

While Sierra may be at peace, Mom isn’t doing so well. “I’m losing my baby … Sierra’s supposed to be starting her life. We’re supposed to be planning her wedding, not her funeral.” As she wept, her daughter consoled her.

Sierra is facing her final days not with bitterness and despair, but with strength, grace and courage,

“She’s my hero,” said her mom.

Making memories

SouthernCare hospice arranged Sierra’s “dolphin experience” through an Indianapolis-based organization called “Never Too Late,” which seeks to make dreams come true for the elderly and the terminally ill.

Taylor and nursing assistant Rhonda Huffman both attended, and Taylor got in the water with Sierra. Because of Sierra’s rapidly declining health, they weren’t sure she would be able to make the trip.

“It took everything out of her, but she wouldn’t have changed it in a million years,” Taylor said.

According to Lisa Oland, the zoo’s senior trainer of marine mammals, Sierra got to rub Sundance’s back, belly and tailflukes. She also fed the dolphins and asked them to do different behaviors.

She had one of the dolphins do a front flip, airspin and tailwalk. A tailwalk is where they “walk” backward on their tail in an upright position. They also do a crazy dance where they wiggle their pectoral flippers out of the water and then move their head side to side.

Sierra felt their warm breath on her hand and touched the hairpits near their mouth, where they had hair for the first few days of life.

“We got to see their belly buttons and we got to see where their ears were,” Sierra said. The ears “look like dimples on them. You have to be really close to see them.”

She also saw where the dolphins had scratch marks on their noses and chipped teeth as they fought for dominance.

“We did at one point help her out of the wheelchair and removed her oxygen so she could get closer to Kimo and actually wrap her arms around him and give him a hug,” Oland said.

When Sierra bent over for Kimo’s kiss, they posed for a picture that froze that special moment, one that will generate joyful memories for years to come.

As a nurse whose role was to look out for Sierra’s health, Taylor said “it was hard to enjoy, I was so nervous, but it was an experience I will never forget.”

Afterward, Sierra was exhausted and in pain, and Taylor and Huffman had to administer a breathing treatment, and Taylor also had to reconnect Sierra’s pain medication.

The water was cool, and when she was done, Sierra’s lips were blue from the cold, her mom said.

Sierra had no regrets.

“She was so determined to go,” said Mandy Meyer, SouthernCare hospice social worker. “She said she didn’t care if it killed her.”

Sallie Cooper described the dolphins as “so graceful and so free,” creatures not limited by pain or disease.

Bonded by love

Sierra believes that “everything happens for a reason.”

For as long as possible, she’ll spend time with those she loves. She’ll text message family and friends on her closely guarded cell phone and check out the latest updates on MySpace.

She’ll enjoy her French vanilla MooLattes and blue-raspberry Artic Rushes from Dairy Queen, and she still hopes to see “The Blind Side.”

She’s thankful to the hospice staff, which has become her second family.

And she’s grateful for the love and support of her mom. “She’s wonderful. I couldn’t do anything without her. She’s been there for me,” Sierra said.

As Sallie Cooper clings to her baby and holds on to every precious moment, she knows, “It’s in God’s hands.”

Sue Loughlin can be reached at (812) 231-4235 or sue.loughlin@tribstar.com.





What to know

• Never Too Late is a not-for-profit, public charitable organization that seeks to help make the dreams and wishes of the elderly and terminally ill come true.

• It is based in Indianapolis, although it grants wishes nationwide. Its founder is Bob Haverstick, and the organization is staffed by volunteers and funded by donations.

• The average cost of a wish is about $300, excluding donated goods and services.

• For those who would like to volunteer, request a wish or make a donation, go to www.nevertoolate.org or contact Haverstick at (317) 823-4705.

• SouthernCare’s national Web site is southerncareinc.com.

• Locally, the Terre Haute office is at 4624 Springhill Junction Drive. The organization’s phone number is (812) 235-0400 or may be reached by e-mail at terrehaute@southerncareinc.com.

• Never Too Late’s Web site is www.nevertoolate.org.

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