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Mesa girl, 11, needs heart transplant after beating cancer at age 8

Tribune - 9/2/2020

Sep. 1--There isn't much that can break 11-year-old Macie Schnepf's spirit.

Not Ewing's Sarcoma, which she was diagnosed with in January 2017 and beat in November of the same year when she was only 8.

And not her failing heart from sustaining nearly 20 rounds of rigorous chemotherapy treatments and many more blood transfusions as a result of the cancer treatments.

Macie takes things one day at a time, fighting against the odds stacked against her while finding ways to comfort her worried parents and three younger siblings.

Sarah and Jono Schnepf call their daughter "little warrior girl."

"She wants to fight," Sarah said. "She knows it's scary and she knows what the surgery will be like and the medications she will have to be on. But she's determined to keep fighting.

"We always tell her we wish we could trade places with her, but she always says, 'no, I've done it before, and I can do it again.'"

Macie was 8 when her right leg swelled up and she was unable to walk. The family was on a quick trip to Idaho when she started experiencing the abnormal symptoms.

She had to be carried off the plane and transported quickly to a hospital, where doctors ran tests and discovered the growing tumor on her fibula.

Sarah said the tumor grew at an alarming rate, nearly a quarter to half of an inch per day. In a short period of time, it had grown to the size of a softball.

Doctors removed the tumor -- which also resulted in the removal of most of her fibula and surrounding muscle tissues. Ewing's Sarcoma attacks both the bone and tissue around it. At times, it can spread further.

However, the Schnepfs had caught it beforehand and kept it limited to just her right leg.

Several inpatient stays, chemotherapy treatments, blood transfusions, biopsies and surgeries followed.

One chemo treatment, nicknamed "the red devil," turned Macie's sweat and tears red because of its toxicity. But it did its job and helped her become cancer free in April 2017. She was fully cleared from all cancer treatments seven months later in November.

Treatment damaged her heart.

"The chemo that damaged her heart did its job, it killed the cancer," Sarah said. "But it unfortunately took a toll on her heart. Her echocardiogram never returned to normal."

It took Macie nearly two years to learn to walk again. Her love for swimming and desire to compete for Mesa Aquatic Club again fueled her and her ability to power through physical therapy.

She was eventually able to return to the pool, which Sarah believes kept her healthy. In July she went in for a routine checkup at Cardon's Children Medical Center, now known as Banner Children's at Desert, in Mesa. Her doctors came in after tests were run and told the family to immediately admit her into the Intensive Care Unit. Her heart rate had spiked to over 150 beats per minute while her blood pressure dropped.

It was quickly determined she was entering heart failure and would need a transplant. She was transferred last week to Phoenix Children's Hospital.

"She went to a doctor appointment and never got to come home until this past weekend," Sarah said. "It was hard. Everything was taken away from her overnight."

After yet another long stay at a hospital, Macie was able to return home to await a new heart. Doctors told her family it could be a month to two months -- or longer -- before one became available. She is currently connected to a IV that injects medicine throughout the day. Sarah said that is keeping her heart in stable condition for now.

"My husband and I have gone through extensive training to monitor her," Sarah said. "We are able to take her to doctor appointments, but if she declines, we will have to go back to PCH and wait inpatient for a new heart.

Sarah describes Macie as someone who is well beyond her years. Even while she battled cancer, she understood the situation could have resulted in death.

She grew to accept what she was going through. Sarah said Macie was unhappy at first to shave her head.

But just a short time later sent a video to her family of her pulling off her beanie, accepting her new look. She continued to embrace her bald head while going through chemotherapy, often accessorizing with a bow instead of a wig.

The family often used a butterfly as a symbol of their battle, cocooning into a new life that they will overcome. Now, however, Macie prefers sea turtles. While slow, they always reach their destination, she told her parents. She is confident that she, too, will reach her destination and overcome more adversity, even if it takes some time.

"Macie told me, 'they take it slow, but they always glide through,'" Sarah recalled. "She's really done that. Her doctors said she has taken things slow. It took a couple of weeks to get her stable. We are hoping slow and steady wins the race."

Macie spends most of her day in bed, drained of energy from treatments. When she is able, though, she spends as much time with her siblings as possible. They often play with dolls in her room.

Sarah, who is 17 weeks pregnant, said it's been tough on Macie's siblings to see her go through a difficult time. But the siblings feed off her strength -- as do her parents.

Even when they feel like breaking down as parents, she motivates them to push through.

"I can't imagine being 11 years old and going through what she is and making sure everyone else around me is alright," Sarah said. "Sometimes we worry because God always calls the good ones home. She is too perfect.

"We walked through fire once. We can do it again."

A GoFundMe has been set up to help with medical expenses and to set up a bank account for Macie. Doctors say medical expenses will continue to increase throughout her life due to medications. To donate, visit gf.me/u/yrxvn3.

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(c)2020 East Valley Tribune (Mesa, Ariz.)

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