Josh and Kayla Boyer and their daughter Lydia love NED.
When the family learned that recent tests showed an absence of cancer on Lydia’s spine, Josh wanted to be sure he had heard correctly.
“I’m sorry, it sounded like you said NED?” Josh asked.
NED means “no evidence of disease.”
The Boyer family received news they had hoped for during the past four-plus years but had seemed impossible at times: Lydia Boyer is cancer-free.
After hearing that Lydia had no evidence of disease on her spine earlier in the week, it was announced Friday morning that results from a recent brain scan revealed complete remission.
“Her scans were literally clear. I saw them myself and I was in awe of how awesome and wonderful God is,” Josh posted on the Hope for Lydia Facebook page. “It’s all in His timing, why He decided to give us NED right now, I don’t know but we have praised Him through it all and will still continue to praise Him no matter what!”
Josh, the online campus pastor for Hope Christian Church in Columbia, and his wife Kayla set up the page to keep the community up-to-date regarding the health of their daughter Lydia.
In May 2016, 5-year-old Lydia was diagnosed with the most severe form of medulloblastoma, a malignant brain and spinal cancer. After enduring various surgeries and treatments, it appeared that the worst was over by February 2017.
Tragically, only days after “ringing the bell” to signal a successful end of treatment, Lydia’s health deteriorated and tests confirmed that she had a recurrence of the tumors and no known treatment options.
Josh wrote about that time in hindsight.
“We were told that Lydia was very sick and had metastatic leptomeningeal spread throughout her brain and spine. We were told to go make memories because it won’t be long – a few weeks at most. As many of you may remember, we were devastated,” Josh recalled.
The community rallied around the Boyers, with various fundraisers from small businesses in the area and donations from individuals helping with some of the cost of medical care and providing a Make A Wish Foundation trip when the outlook for Lydia was at its worst.
Word spread of Lydia’s plight and she was invited to throw the ceremonial first pitch at a September 2017 St. Louis Cardinals baseball game (a perfect strike).
Shortly thereafter, inspired by Lydia’s journey, a New Jersey man walked from Wrigley Field in Chicago to Busch Stadium in St. Louis to raise awareness of childhood cancer.
In early 2019, two and a half years after the initial diagnosis, things began to change.
“It’s not getting worse. It’s getting better,” Josh said at the time. “We’re not sure what to make of that, but we’ll take it.”
Now, four years after doctors told the family that Lydia’s condition was incurable, she seems to have beaten all odds.
“I just want to tell everyone thanks for sharing in our joy with us,” Josh said.
“We sometimes felt kind of alone when we were in the middle of it,” he continued, noting that while he knew people cared, the reality of the treatments, day-to-day adjustments and the deep concern as a parent about the uncertainty of the outcome were mostly out of the public eye.
“Hearing from everybody has been awesome,” he said of the response to the announcement about Lydia being cancer-free. “It is a great reminder that the community is still there.”
Lydia celebrated her 10th birthday in October with a drive-by parade. Hopefully there will be many more celebrations to come.