Luke Nelson, 3, battles rare cancer

Prayer warriors organize to support family during aggressive treatment

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” – Joshua 1:9

By AMANDA KIMBLE
TheFlashToday.com

STEPHENVILLE (May 12, 2016) – Luke Nelson was back to the business of a three-year-old Wednesday. Following three weeks of constant care at Cook Children’s Medical Center, he was playing with his sisters, Lilly, 5, and Lyla, 11 months old.

“He’s happy to be home,” Mia Nelson, Luke’s mother, said Thursday. “Luke loves his sisters. They’ve always been together and they’ve grown very close.”

Lilly is like a ‘little mommy’ to Luke. She dreams up games and he plays along. He’s only three, but Luke ‘protects’ his little sister. When Lyla is upset, Luke rushes to calm her.

“Since we’ve been home, they’ve been inseparable, running around and enjoying each other,” Mia said.
Luke was released from the hospital Monday. Doctors have given the family a week-long respite before embarking on a long road to recovery.

“It’s easy to forget Luke has a life threatening cancer when we watch him run around, play with his toys and act like a goofy, silly three year old,” Mia posted on her Facebook page hours after returning home.

The family was living a very different reality a month ago.

Clint, a proud father and husband, was working at Schreiber Foods, where he has been employed for about nine years. Mia was homeschooling Lilly and Luke and marking Lyla’s milestones.

Together or apart, the milestones are still being marked. During the last three weeks, while Clint, Mia and Luke were at the hospital, Lyla said ‘momma.’ She started to crawl. She learned to pull herself up and stand on her own. A lot has changed.

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In a matter of days, Luke will be back in Fort Worth. He will begin an aggressive cancer treatment – chemotherapy, radiation, stem cell therapy and invasive surgery. Medical professionals estimate treatment will span almost two years.

Their journey began with panic and uncertainty, but Mia said the family has since put the future in God’s hands. And they’re leaning on a strong community and battalion of prayer warriors.

The whirlwind of medical testing, medication and life-altering news began with what Mia believed was a typical childhood ailment. Luke had a tummy ache. He was fatigued. The whole family had battled a bout of the flu. The rest of them recovered from the illness, but Luke’s fever lingered, and he didn’t regain his appetite.

Clint and Mia decided it was time to take Luke to the see the family’s pediatrician, Dr. Nadine Rose. Upon examination, the doctor noticed Luke’s stomach “felt hard,” which could have been a sign of appendicitis. She ordered an x-ray.

While Mia and Luke were an examination room awaiting the results of the x-ray, she remembers the unmistakable sound of Lilly’s voice coming down the hallway. Clint had been in the waiting area with the girls, but the doctor wanted to speak to both of them.

“Dr. Rose said she could see a large mass on Luke’s left side,” Mia said, recalling the ominous image being presented to them. “She said she wasn’t going to call it a tumor, she was just going to call it a mass.”

A CT Scan was ordered. They took Luke to the emergency room at Texas Health Harris Methodist Hospital Stephenville.


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“The mother in me was in full panic mode,” Mia said. “We are sitting there, wondering what was going on. And then the doctor walked in with ‘that look’ on her face. She said ‘this is cancer, it is a tumor.'”

Luke was immediately taken by ambulance to Cook Children’s Medical Center in Fort Worth.

“It was like getting slammed with a ton of bricks,” Mia said, adding she learned medical professionals thought it could be a Wilm’s Tumor, a malignant tumor of the kidney that occurs in young children and is relatively easy to treat.”

They were told Luke would undergo surgery to remove the mass. But, before that surgery occurred, pediatric oncologist Dr. Meaghan Granger said she believed diagnosis was wrong. The specialist thought Luke was suffering from neuroblastoma, a rare cancer occurring in infants and young children. More testing would determine the type of cancer, the aggressiveness of the disease and treatment options.

“Preliminary markers confirmed it was neuroblastoma,” Mia said, adding her panic was transformed into something much stronger. “At that point, I refocused on God. I told myself worrying is not going to do anything.”

The Nelsons soon learned the prognosis was ‘unfavorable.’

“It would be really hard for chemotherapy to shrink the tumor, so the treatment would require much larger doses of chemo,” Mia said. “And the gene mutation is ‘turned on,’ causing the tumor to want to spread as far and as fast as possible.”

The tumor couldn’t be immediately removed. Surgery during the early stages of treatment could cause the cancer to spread. The survival rate for patients with neuroblastoma is about a 40 percent, but a relapse would decrease Luke’s chances to 15-20 percent.

“This type of cancer can adapt to cancer and radiation,” Mia said. “That is why it kills so many little kids.”

Treatment will now begin with one of many high doses of chemotherapy, causing severe nausea, mouth sores and other side effects.

But that’s just the beginning. Over the coming months, doctors will collect Luke’s stem cells. More chemotherapy. Radiation. The tumor will eventually be surgically removed. Luke will receive a double stem cell transplant.

The process will span about a year and a half – longer if Luke experiences complications like infections or pneumonia. It all begins Monday, May 16.

“For now we are just enjoying the next few days,” Mia said, with an amazing amount of strength and conviction in her voice. “The strength is only because I’ve got God. Who better to hold our hands than the One who created us.”

While the Nelsons are turning to their faith for strength, they’ve also received an outpouring of prayers and support from across the community.

From coworkers and supervisors who have organized fundraisers and a corporate entity pledging to match every dollar raised through events like garage sales, bake sales, a fun run, skeet shoot and golf tournament, to a manager who has visited the hospital to pray at Luke’s bedside, Mia said Schreiber has been a Godsend.

“Schreiber has gone from being (my husband’s) employer to (a part of our) family,” she said, adding that other community members have also offered monetary and spiritual support.

Mia said the financial assistance is allowing Clint to be at his wife’s side. The family doesn’t have to worry about expenses during the early days of treatment.

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Their $12,000 medical insurance deductible, which was met after an early dose of chemo, will be covered thanks to community support. Medical expenses have since added up to hundreds of thousands of dollars. Insurance is now covering those costs, but cancer isn’t just about medical expenses.

Clint is currently on family medical leave. His job is secure, but he isn’t collecting a paycheck. There’s the mortgage, utility bills, car payment and groceries to consider at home. And there’s also the treatment-related expenses not covered by medical insurance.

“Luke has to be seen at Cook twice a week, every week for two years,” Mia said. “He will also stay at the hospital every three weeks for chemotherapy. When I started thinking about the gas and expenses of driving back and forth – to and from Fort Worth – and food while we stay there, it was terrifying. That’s thousands of dollars on gas and food. The financial part of this was a huge worry.”

But Clint, a Stephenville native, and Mia, who grew up in Lingleville, have been blessed. Schreiber’s efforts have already delivered $15,000, and an online fundraiser (click here) has almost raised another $15,000.

“The outpouring of donations, the financial support has been incredible,” Mia said. For the time being, that concern has been diverted, and the energy has been projected upward. “We trust in God and we know He has this.”

Community members who would like to make a financial contribution to the Nelson family may do so at First Financial Bank. Donations can be made to Clint and Mia Nelson, to benefit Luke Nelson. For updates on Luke’s condition and information about upcoming fundraisers, follow Prayer Warriors for Luke Nelson on Facebook.


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