Since 2019, Blacklane has provided free chauffeured rides to sick children traveling for critical medical treatment across the U.S. This is the Betker family’s story.
“I want to/To show you all the things that this life has in store for you.”
The lyric from U.S. rock band Staind’s song “Sweet Zoe Jane” sticks with you after meeting Utah mum Jamie Betker and her daughter ZoeJane, who’s named after the song.
For the mother-of-three, it represents how much she wants to give her daughter, who was diagnosed with a rare brain tumor in 2017, the chance to experience everything life has to offer.
Ms Betker said she first realized something was wrong when her daughter, who loves fashion and playing with fidget toys, had trouble picking something up off a table.
“ZoeJane said ‘Mom…I am seeing double, I need to go to a doctor’. I asked her to go grab me some sanitizer off the table and when she did, she reached to the side of it and then corrected herself,” she said.
ZoeJane was rushed to the doctors, where an MRI revealed Diffuse Intrinsic Pontine Glioma (DIPG). DIPG is an aggressive tumor that grows in part of the brain just above the neck – the area that controls breathing, heart rate, nerves, and muscles.
Unfortunately, there is no cure for the tumor. The recommended procedure is six weeks of radiation to try and slow its growth, Ms Betker said.
“(The doctors) basically say ‘There’s a list of trials available right now, you can choose one, see what happens, but make memories’,” she said.
“It was hard because once you’re told a prognosis of six to nine months……there are feelings you can’t express, your world turns upside down.”
While searching for trials for her daughter, a family who had recently lost their child to DIPG reached out and told Ms Betker about a trial in New York that looked “promising”.
“So it was about 11 o’clock at night and by the time I was done reading through (the trial), I had, I can’t explain it, I had the most exciting feeling in my heart and I was just like ‘This is what we need to do’,” she said.
“I emailed her oncologist that night and a little after midnight he emailed back and was like ‘I’m on it’. The timing was just perfect.”
ZoeJane started the trial in the spring of 2018, which required her to fly to New York City every three weeks for the first year and every six weeks in 2019.
Thanks to Miracle Flights, a non-profit that arranges free commercial flights for critically ill children and their parents or guardians, she flew cross country for treatment accompanied by her mom and dad.
Ms Betker said the initial radiation treatment shrunk the tumor considerably and the trial has managed to keep ZoeJane stable since.
“We haven’t seen shrinkage on the trial, but it’s keeping her stable and we couldn’t ask for more,” she said.
When the pandemic hit, the trial doctors made special arrangements to send ZoeJane’s treatments to her local hospital, but Ms Betker said they would soon be traveling back to New York to continue with the trial.
“ZoeJane’s made a lot of friends who almost feel like family (in New York), from volunteers to the people who run the Ronald Mcdonald House so we’re actually excited to go back… we miss it,” she said.
“Going to New York every three weeks and then every six weeks for two years, it became like a second home…we don’t just sit at Ronald McDonald House, we really make the best of our time.”
When Blacklane partnered with Miracle Flights in 2019 to provide airport transfers to families in need, Ms Betker said it made a noticeable difference to their travel days.
“There were times when we would leave the house at six in the morning and not get there until almost midnight and so when Blacklane became an option for us, it was so nice,” she said.
“The drivers were always so polite… with Blacklane she never got sick or anything like that and she felt kind of cool, having this nice dressed driver open the door for her and take her luggage.
“They were so personable, they would talk to us… would even tell us a little about themselves, so you felt like you were making a friend. It made that 25 to 40 minute drive pleasurable.”