When Amber Miles contacted Sharon Osborne about hosting the “Miracles Through Music” Hospice benefit at June Morning, Osborne offered the event facility at a big discount, Miles said.
Osborne, former teacher at Kingston Elementary School, had a very specific memory of Mile’s brother Jason Newby, who succumbed to acute lymphoblastic leukemia at the Hospice Compassionate Care Center in 2011.
Osborne remembered walking into her classroom and seeing “Jason standing on top of the piano and singing (Little Richard’s) ‘Tutti Frutti’ at the top of his lungs,” Miles said. “I can picture him doing that.”
After falling ill in 2008, Newby ran into Osborne, who recalled “that he was the same high-spirited person she remembered. She said she would never forget him,” Miles said.
“I thought it was very sweet that she had such a specific memory of him – and that’s been years ago.”
During last year’s fundraising event, family and friends gathered at Memorial Park in Berea to enjoy local musicians and to raise money for the Hospice Compassionate Care Center, a place Newby considered to be like home, his sister said.
Food sales and the raffle raised more than $2,000. A large chunk of the money went to Hospice, while a portion of it went to purchasing more than 50 plastic pumpkins filled with candy and toys for young patients at the University of Kentucky Children’s Hospital.
Newby’s family decided to move the event indoors this year to avoid heat and inclement weather, but to also have the opportunity to present a slideshow of Newby’s life.
“I want to make sure this event is really Jason Newby-centered this year,” Miles said.
Newby was a 1996 Madison Southern High School graduate, a member of Crestview Holy Sanctuary Church and Berea Masonic Lodge. He also had been commissioned a Kentucky Colonel.
Newby was 30 when diagnosed with chronic myeloid leukemia (CML), which starts inside bone marrow, but is usually treatable.
Months later, Newby was told his CML had become drug-resistant and morphed into the more dangerous acute lymphoblastic leukemia. The blastic cells were concentrated in his spine.
Only 10 percent of CML cases turn into ALL, doctors told the family.
Doctors expected Newby to live only another two weeks, but chemotherapy pushed the disease into remission. In the meantime, his family scrambled to find potential matches for a bone marrow transplant.
A transplant could be performed only if he remained in remission, Miles said.
By October 2010, the family was hit with some more hard news. 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,” Miles said. However, after being fitted with a prosthetic piece, doctors found no sign of mold during the next procedure. While an improvement in his condition, the setback would disqualify Newby for a bone marrow transplant.
“Every time we thought we were in the clear, something would just pull the rug out from underneath us,” Miles said.
Shortly after the mold disappeared, the blastic cells reappeared; this time in his spinal fluid.
Doctors said the only chance of getting chemo into his spinal fluid was through a pump implanted in his skull. The treatment proved to be useless and doctors broke the news that all options had been exhausted, Miles remembered.
Newby passed away at the Compassionate Care Center June 30, 2011, just a few days after his 33rd birthday, while holding the hand of his only daughter Cassidy.
Newby’s family plans to continue “Miracles Through Music” in his honor each year, Miles said.
Those who would like to donate, or who may have pictures of Jason Newby to add to the slide show, contact Amber Miles at (859) 314-2779 or firstname.lastname@example.org.
Crystal Wylie can be reached at email@example.com or 623-1669, Ext. 6696.
1-5 p.m., Sunday, June 30
June Morning, 209 Ashland Avenue, Richmond
Musical guests: Tessa Pickle, Amanda Rader, Vee Rader, Jack Smith, Ashley Long and Kristi Miller
Raffle and $5 spaghetti supper