The Richmond Register

July 5, 2012

The story of Jason Newby: ‘Miracles Through Music’ to benefit Hospice

By Crystal Wylie
Register News Writer

BEREA — On Saturday, friends and family of Jason Newby will celebrate the life of a man whose many battles to stay alive seemed nothing short of a miracle.

Saturday's benefit in his memory is being called “Miracles Through Music,” said Amber Miles, Newby’s sister.

The program, beginning at 1 p.m in Memorial Park, will feature a long line-up of local musicians. It will continue until dark. There also will be face painting, a cake walk, a cornhole tournament, inflatables and a silent auction.

Several organizations and businesses have donated food, T-shirts, furniture, electronics and amusement park tickets to sale.

Proceeds from “Miracles Through Music” will be donated to families of cancer patients at the University of Kentucky's Markey Cancer Center and the Hospice Compassionate Care Center, where Newby lived the last months of his life.

A 1996 Madison Southern High graduate, a member of Crestview Holy Sanctuary church and the Berea Masonic Lodge, Newby would have “gotten a kick out of having a (newspaper) story written about him,” his sister said.

In October 2008, the then 30-year-old Newby was standing in line, waiting to get a title for his dirt bike. He blacked out and was quickly rushed to the hospital in Berea where doctors discovered an elevated white blood cell count.

The diagnosis was chronic myeloid leukemia (CML), which starts inside bone marrow, but is usually treatable.

 Newby was told he could live a relatively normal life, his sister said, because this type of leukemia can be treated with a daily pill.

Amber remembered when her brother called her with the news.

She was living in Hawaii with her husband David, who was stationed there as a Marine Corps helicopter mechanic.

Amber was nine months pregnant and on the phone with an umbilical cord blood bank when Newby beeped in to tell her. Not realizing the gravity of her brother’s phone call, she ignored it.

She and David were interested in banking their newborn’s umbilical cord blood and stem cells, the body’s master cells that can be used to treat certain cancers, blood disorders, metabolic disorders and immune diseases.  

However, the procedure was going to be costly and the Miles family decided not to follow through.

Later, when Amber learned of her brother’s condition, she called the bank back and asked them one question: Can this cord blood help my brother?

Possibly, they said.

“That’s all I needed to know,” said Amber. “I saw this as a sign.”

Newby told his doctors, “My nephew is coming out of the womb to help his uncle.”

Later, doctors said Newby wouldn’t need a bone marrow transplant because medication would be sufficient.

Newby thrived on the medicine and even helped Amber move back into her Hawaii home. Amber had temporarily moved back to Berea to be with her brother during the seven months David was deployed to Iraq and Afghanistan.

Her brother, seven years older than she, had always been by her side, she said. He supported her when her father died, escorted her during her high school homecoming and walked her down the aisle at her wedding.



An unexpected turn of events

Months later, Newby began to have back pains. Blaming it on his new mattress, he started sleeping on the floor to alleviate the pain.

“It feels like heaven,” Amber told her brother when he asked her to lie on the mattress and test it out. She even offered to trade mattresses with him.

A routine doctor’s appointment revealed that Newby’s CML had become drug-resistant and morphed into the more dangerous acute lymphoblastic leukemia (ALL). The blastic cells were located on his spine and caused the back pain.

Only 10 percent of CML cases turn into ALL, the doctors said.

When nobody heard from Newby hours into that appointment, Amber knew something was wrong. She called the hospital from her new home in Virginia, where David had been transferred to work on the presidential helicopter squadron.

Amber’s call was immediately transferred to her brother’s room, where he had been admitted hours earlier.

“Don’t worry Sis, they don’t know anything yet,” Newby said, barely audible. Amber hung up and called back to speak with the nurse.

What the nurse told her was shocking.

“His cancer is worse. We’re looking at him having only two weeks to live,” the nurse said. “The best thing to do is for him to go home with his family.”

“But he just told me you didn’t know anything yet,” Amber replied, thinking she had her brother mixed up with another patient.

Doctors had already revealed this news to Newby — over and over again. Newby was so disoriented by medication he kept forgetting the diagnosis.

Amber packed immediately, and she and baby Landon headed to the Markey Cancer Center. David’s job prohibited him from leaving with her.

Newby eventually became aware of his situation and wasn’t ready to accept this fate.

“I’m not giving up,” Newby told his family, “I’m not going home to die.”

His physicians agreed to try chemotherapy, while telling his family they should prepare to say their final goodbyes. They had little faith the treatment would work, Amber said.  

During his stay at the cancer center, Newby accepted more 200 visitors and “he kept talking about how blessed he was,” Amber said. “But I was a mess.”

“Are you scared Sis?” he asked her.  

Yes, she replied.

“I’m not scared,” he said. “I’m going to beat this. I promise you.”

And for a time, he was right.

Within a few months, the chemo had put Newby into remission, contrary to the doctor’s prediction that he would die in two weeks.

Now he could possibly get a bone marrow transplant, and the best thing his family could do for him, doctors said, was to hold a bone marrow drive to find potential matches.

The family went to work immediately. Using DNA test kits, 100 people lined up to get a DNA swab and to fill out a medical questionnaire.

Not only were the kits intended to discover possible matches for Newby, the 100 people also were entered into the bone marrow registry, which could help save other lives.

The DNA kits were free, but family and friends quickly raised the $25 optional donation for each kit.

They all felt like celebrating.

They knew that Newby would have to remain in remission for a time before doctors would risk a transplant. They remembered when the doctors said the remission wouldn’t last, only buying them “months, not years.”

Newby explored all his options. Doctors at UK were hesitant to perform the risky procedure, Amber said, so Newby contacted a teaching hospital in Maryland that might be willing to.



Halloween 2010

Amber and two-year-old Landon (dressed as a garden gnome) were about to step outside to trick-or-treat when her phone rang.

Newby said, “Sis, bad news …”

Oh no, it’s back, she thought.

Newby’s immunity, ravaged by months of chemotherapy, made him vulnerable to a mold that ordinary immune systems can fight. Doctors said the mold would kill him faster than the leukemia.

The following months, Newby would endure multiple procedures to remove the mold from his sinuses. The mold had already eaten big holes into the roof of his mouth and surrounding areas.

During one procedure, Newby’s jawbone detached. The doctor explained the bone “literally fell out into his hand,” Amber said.

Newby would soon get fitted for a prosthetic piece that would fit into his mouth, enabling him to speak again.

The next time doctors cleaned his sinuses they made an unlikely discovery.

“He’s amazing,” the doctor told his family, “there is no other word to describe this boy. The mold is completely gone, and I can’t find a trace of it in his sinuses.”

Although this was a marked improvement to his condition, the mold ordeal had eliminated his bone marrow transplant options at UK, and they were still waiting to hear back from the hospital in Maryland.

“Every time we thought we were in the clear, something would just pull the rug out from underneath us,” Amber said.



One more fight

Newby’s struggle for his life was riddled with triumph and setbacks until the end.

Shortly after the mold disappeared, blastic cells reappeared. But this time, the cells were found in his spinal fluid, where chemo doesn’t reach, Amber said.

Newby just wasn’t ready to give up.

“Find a way to get it in there,” he told his doctors. They implanted a port in his skull that would pump the chemo into his head and, hopefully, into his spinal fluid. The treatment proved to be useless and the doctors said that all options had been exhausted.

“You’ve fought so hard,” they told him. The only thing they could do was manage the pain for the few months he had left.



Hospice became home

At the suggestion of his doctors, Newby moved into the Hospice Compassionate Care Center of Richmond.

He liked the around-the-clock care, his knowledgeable nurses, his spacious room and Annie, the therapy dog, his sister said.

Newby had two friends who never left his side. He hung a hummingbird feeder outside of his window and he loved watching American Idol.

Hospice became home to Newby, where he enjoyed a steady stream of visitors, including Amber, Landon and his new niece Kelsey.

Kelsey was five weeks old when they all had a sleepover in his Hospice room. Anytime Newby saw Kelsey, he lit up and would say, “There’s Bub’s love!” (Bub was Amber’s childhood nickname for her brother).

Amber learned that Newby was so attached to Kelsey because she was at his house when she found out she was pregnant. On that day, he had thought to himself that he would never live to see that new niece or nephew, Newby told her, and now, here she is.

Newby tried to cherish every moment, even at the expense of his own pain.

During one visit, Amber remembers Newby feeling especially awful and a nurse asked him why he was not using the pain medication that was connected to a pump.

He replied, “I don’t want to be knocked out right now. I want to enjoy everybody. I don’t want to die and not know it’s coming.”

The nurse said, “I promise you, you’re going to know.”

Newby and the nurse then engaged in a frank conversation about an experience she had with a close friend who passed and how pain medication is administered as death approaches.

The thought of losing her charismatic, handsome, strong and dependable older brother was too much for Amber to bear and she left the room.



A last goodbye

Newby’s condition improved at Hospice, and with his pain under control, he was able to go home for a while.

Newby went to stay at his father and stepmom’s house in Berea. He was a single dad and had lived there with his daughter, Cassidy, who is now 10 years old.

Amber and the children had been away from their Virginia home for weeks. The whole family was missing David, who could only visit occasionally.

Although Amber was hesitant to leave her brother’s side, he insisted that he was doing better and would be OK.

David drove to Kentucky to pick up his family, and Newby embraced his brother-in-law for a long time, knowing it could be the last time he would see him, Amber said.

Amber didn’t want a long hug. “I wanted a short hug and a ‘see you soon,’” she said. Newby held her for so long, “It felt like he was saying goodbye.”

The Miles family loaded into their vehicle and just a few minutes down the road, Newby called and said he wasn’t ready to say goodbye.

In what would be their final conversation, Newby told David there was nobody else in the world he would rather have take care of his sister.

Weeks later on June 28, 2011, Newby celebrated his 33rd birthday. Friends and family took him out to eat, and his Facebook status said he “had the best day.”

Amber was unable to be there that Saturday, but would visit very soon. On the phone, Newby said, “Sis, I just wanted to tell you I’m going to miss you so, so much.”

She asked him if she needed to come now, and he replied, “Honestly, I don’t know.”

A friend of Newby’s, who also is a nurse, called Amber the next day and urged her to make her way to Kentucky. With only one car between them, Amber would wait until Monday to find a rental car and make the 10-hour drive with their two children.  

She received constant updates on her brother’s condition from her mother, who assured Amber that she would make it in time and that her brother knew she was on her way.

Five hours into the trip, Amber made a rest stop in West Virginia. She took the children to the bathroom and left her phone behind.

When they returned to the car, Amber found several missed phone calls, all at once.

“As soon as I saw my phone, I knew,” she said. She called David and he confirmed that her brother had died.

Her mother called and said, “We didn’t know whether to tell or not because you’re driving the babies, but I couldn’t bear to have you show up thinking you would get to see him.”

Two of Newby’s friends made the five-hour trip to West Virginia to pick up Landon, Kelsey and Amber, who could not attempt to drive.  They told her that her brother’s passing was peaceful.

They also told her his daughter Cassidy was retrieved from summer camp just in time to say goodbye to her father.

Cassidy walked into her father’s room at the Compassionate Care Center around 3:30 p.m. where he laid unresponsive. When Newby heard his daughter’s voice, he suddenly struggled to sit up in bed. He reached for Cassidy’s hand and held it. Only 30 minutes later, he passed away.

Crystal Wylie can be reached at cwylie@richmondregister.com or 623-1669, Ext. 6696.