Hayley Arceneaux: Mission of a Lifetime

Hayley Arceneaux remembers that first email for what it didn’t say. Sure, there was a cryptic mention of some “new opportunity” headed her way, but little else. Certainly nothing hinting at the cosmic revelation to come.

“They were being very vague,” she would say weeks later, “and I remember going into it being a little suspicious.”

Suspicion gave way to shock, then exhilaration, however, when Hayley sat in on a conference call and learned the basic thrust of the opportunity being laid before her:

Would she like to be launched into orbit around the Earth?

“I remember I laughed. I said, ‘What, are you serious?’”

But hadn’t she once dreamed of exactly this, as a little girl visiting NASA on a family vacation? Wanting to be an astronaut? Growing up as a childhood cancer survivor given a second chance to wring the most out of life? A woman with a zest for adventure?

Her answer was, of course, quick and emphatic, vintage Hayley.

“Yes, yes, thank you. Please send me to space.”

And just like that, Hayley figuratively climbed aboard for a historic mission called Inspiration4. She’ll be part of the world’s first all-civilian space crew as it blasts into orbit later this year on an endeavor to raise money — an astronomical sum, in the truest sense — and awareness for St. Jude Children’s Research Hospital, the place that saved her from pediatric cancer and where she later found her dream job as a physician assistant.

Rocketing into space may be one of the few adventures totally new to Hayley. She’s packed a veritable lifetime’s worth of travel and experience into her 29 years. She’s studied in Spain, worked mission trips in Nicaragua and Peru, and checked off five continents on her travel to-do list. And she’s done it all with a titanium prosthesis in one leg — legacy of treatment for bone cancer nearly 20 years ago at St. Jude.

But after getting that vague email, and then finding out about the still-secret mission, it was Hayley’s turn to be cryptic.

She texted her brother about a “life-changing opportunity.”

She told her surgeon she had a “big surprise.”

Soon, people were wondering if she was changing careers or maybe getting married.

The truth of course, was more otherworldly — unbelievable, almost.

Still, Hayley insists she has only the “good butterflies” about the multi-day journey that awaits. “Honestly, I’m not nervous at all. I am just so excited.” Which is hardly surprising because, as she said, space travel is “pretty on-brand” for her. It’s not like there was much of a question she would go.

Things to do: request time off from work; find someone to look after Scarlett, her dog.

Viewed through the clarifying lens of hindsight, that vacation to the NASA space complex nearly two decades ago stands out as something of a turning point. Hayley was 9 and her brother Hayden 7 when the Arceneaux family traveled from their small town in Louisiana to Houston. Both kids were mesmerized.

“I got to see where the astronauts trained and of course wanted to be an astronaut after that — who doesn’t?” Hayley recalled.

Hayden got the space bug, too, but in a different way. When his mom, Colleen, asked if he wanted to be an astronaut, he said, no, he wanted to build the rockets.

Hayden followed his childhood dream, becoming an aerospace engineer for a major contractor in Huntsville, Alabama.

But for Hayley, any thoughts of a space-related career got abruptly shelved just a few months after that NASA trip.

She had just turned 10 when she started complaining about pain in her left leg. This was right around the time Hayley and her dad had gotten their black belts in Taekwondo, a rigorous activity initially suspected as a cause. But then she started limping, and the problem became more obvious on the first hot day of the year when Hayley wore shorts.

“I could just see this huge bump above her knee.” Colleen recalled. “It was like an egg under the skin.”

The diagnosis was as shocking as it was shattering — osteosarcoma, or bone cancer, of the left femur.

“We just all burst into tears,” Hayley said. “I was with my two parents, and I just said, ‘I don’t want to die.’”

When her dad did an Internet search of the disease, the St. Jude website immediately popped up. Just a couple days later, after a doctor’s referral, Hayley and her family were en route to Memphis where entertainer Danny Thomas founded St. Jude in 1962.

Hayley’s treatment included about a dozen rounds of chemotherapy bracketed around surgery to remove her knee and part of her thigh bone. The location of the cancer, however, complicated the treatment. “Her tumor was in the end of the thigh bone, just above the knee joint all the way to the knee joint, so it involved the growth plate,” said Dr. Michael Neel, who performed the surgery.

To allow for Hayley’s continued growth through childhood, while at the same time eliminating the need for multiple surgeries, Dr. Neel implanted what was then a new type of temporary prosthesis that doctors could expand remotely. Although the process has been improved in the years since – today patients are sedated to keep them comfortable — it often proved painful when Hayley was a patient. In a moment captured by a St. Jude video production crew, she briefly dissolves in tears, but then hops from the table under her own power.

What jumps off the screen in that old promotional video isn’t just Hayley’s steely determination; it’s the NASA t-shirt she’s wearing.

During extensive therapy, Hayley worked to build up her muscle and balance, walking on a treadmill and pedaling exercise bikes. Within weeks, she progressed from not even being able to lift her leg to walking without crutches.

And none of that unrelenting rehab or pain stopped her from showering caregivers with gratitude and radiating positivity.

“I just remember her smiling through it all,” said Elizabeth Barnwell, a nurse practitioner who helped treat Hayley and now, decades later, is a coworker. “Everybody really wanted to take care of her. She just made you a better person.”

Even on days Hayley felt poorly, “She’d perk up and say, ‘Time for a dance party.’ And so she taught us all that we need to embrace having fun with these kids,” Barnwell said.

With wide eyes and a ready smile framed by her long, light-brown hair, Hayley gestures excitedly as she speaks. And she tends to be especially animated when the subject is St. Jude and her experiences there.

She’s the first to say cancer helped make her who she is.

“It taught me to kind of expect the unexpected, and go with it. Also, I think having cancer made me tough.”

But she is just as quick to add it wasn’t just cancer. Her St. Jude experience was formative, as well.

Hayley’s connection to the place took hold the day she and her family arrived. She remembers her mom walking up to the front desk, so overcome with emotion that when she tried to utter Hayley’s name, she couldn’t — she just burst out crying instead. The receptionist walked around the desk and gave her a hug, telling her not to worry, they were all part of the St. Jude family now.

“And honestly, truer words were never spoken,” Hayley said. “We really became a family.”

St. Jude was a safe place, a place of hope and comfort, so much so that …

“I remember when my doctor came in at the very end and told me I was cancer-free and I could go home,” she said, “I remember crying because I didn’t want to leave.”

Colleen, her mom, thinks Hayley endured cancer so well because she loved meeting new people and forming intense and enduring bonds with her caregivers and other patients.

She remembers taking Hayley for a quick trip home to Louisiana right before her limb-sparing surgery. Hayley couldn’t wait to get back. In fact, during the drive to Memphis, she told her mom of her plans to raise money for St. Jude and then proceeded to recite the speech she would give to donors, telling them about Danny Thomas, about how no patient families ever get a bill, and the whole St. Jude story.

“I remember holding back tears, thinking, ‘She’s got to live through the surgery. She’s got to live to be able to do this.’”

And live she does, not dwelling on the “rough time” she endured, Colleen said, but using her experience to spur her on. It’s why she’s so eager to see the world — and beyond.

“She kind of has the mentality of live now, because you don’t know the future,” Colleen said. “The truth is, bad things do happen. And it happened in her life. Instead of being all depressed about it, she lives it to the fullest.”

From the time she was discharged as a patient, Hayley always planned to come back to St. Jude  — to wear a name badge instead of a wrist band, as she puts it.

“All I knew is that I wanted to work at St. Jude.”

She studied to become a physician assistant, while also majoring in Spanish to help in working with Spanish-speaking families. Nearly a year after it happened, Hayley still talks about receiving the email confirming she had been hired at St. Jude: “It was the happiest moment of my life.”

On social media, she announced the new job as her “ultimate life dream come true.”

“I told myself over and over when I was going through treatment that God had a plan. I’m overwhelmingly grateful for His faithfulness and my wild journey.”

She works with leukemia and lymphoma patients, but she’s more than a caregiver — she’s been one of them, a child with a catastrophic disease and all the emotional side effects that come with it, the fear, the doubt.

“I especially tell the new patients that I had cancer, as well, almost two decades ago. I kind of know what they’re feeling. I know it’s scary, and overwhelming, especially at first,” she said.

“A couple of days ago, I was talking to one of my new patients. I said, ‘Cancer’s going to change you. But it’s going to make you who you are. And you’re going to be so much stronger because of it.’

“And I really believe cancer and St. Jude made me who I am. But in the best way possible.”

At the same time, the patients can surprise her.

“Our kids ask tough questions. They’re incredibly wise. They pick up on things way faster than imaginable. But they’re incredibly brave.”

The death of her father, Howard, from cancer two years ago also imparted lessons for Hayley’s work. “Whenever I saw him suffer and just feeling so helpless I realized what a hard experience it was for the families,” she said. “I think, and I hope, that I have more compassion for the families that I treat now. I understand how helpless that feeling is.”

“This is all I ever wanted.”

Inspiration4 will be commanded by Jared Isaacman, the 38-year-old founder and CEO of Shift4 Payments and also an accomplished pilot. In addition to committing  $100 million to St. Jude — half the total hoped to be generated by the mission — Isaacman allotted two of the four seats of the space capsule for crew members representing pillars of the mission.

Hayley will occupy the seat representing the Hope pillar, while an as-yet unnamed crew member will take the Generosity seat.

Richard C. Shadyac Jr., president and CEO of ALSAC, the fundraising and awareness organization for St. Jude, called Hayley “the perfect person” for her seat.

“Haley radiates light and hope and has always been a big inspiration to anyone who meets her, including me,” he said.

After receiving the offer to go on the mission, Hayley contacted her mother, who despite acknowledging some mixed feelings, told her it was a once-in-a-lifetime opportunity that she shouldn’t pass up.

“I wasn’t about to say anything to influence her not to do what she wanted to do,” Colleen said.

Memories of Hayley’s father helped guide her, as well. “Her father loved space. He would’ve been so excited for her,” Colleen said.

Hayley’s brother was excited for her, too, even though, as the one sibling with a true space career, he jokingly pushed back. “Hayley had to take my one thing,” Hayden told his wife after hearing the news.

In the mission, Hayley and the others will be riding in a spacecraft and propelled by a launch vehicle developed by SpaceX, a California-based private firm.

Her brother, the aerospace engineer whose job includes predicting the forces affecting rockets, has told Hayley what sensations to expect — the launch will feel like a thrill ride at an amusement park, only “it’s going to be sustained for a while.”

And he’s advised her about some of the mundane aspects of the zero-gravity environment she’ll encounter. “She was talking about how she didn’t want to sleep sitting up. I was like, ‘Hayley, there’s not an up in space,’” he said.

All in all, Hayden thinks he has a good idea what kind of experience Hayley will have. Not just because he knows space — because he knows his sister.

“She’s a very adventurous person and this is like the ultimate adventure,” he said, “so she’s going to have a blast.”

The mission isn’t set for launch until sometime in the fourth quarter of this year, but Hayley's adventure is already underway. During visits to SpaceX, she’s toured the complex, gotten fitted for her space suit and her seat. She’s seen the Dragon spacecraft, which she’ll be riding in, hanging from the ceiling like a decoration. She watched a launch from behind mission control.

The mission will take the crew on a ‘low-earth’ orbit along which they will circle the globe every 90 minutes or so. The duration of the mission and the nature of the scientific work to be done are undecided.

Once the other two members of the mission have been named, Isaacman will begin putting the crew through more intensive training.

“We’re going to learn how the rocket and the capsule work, some of the mechanics behind it,” she said. “We’re going to learn physiology in space. We’re going to be prepared for any situation that could arise.”

What excites Hayley and others most about the mission is the impact it will have for St. Jude.

To begin with, there’s the money to be raised for the research hospital.

“I know that the money raised and the awareness raised from this mission is going to change lives…” Hayley said. “And it means so much to me both as a former patient and now an employee to know that we’re going to be able to help so many more kids because of this mission.”

After her selection for the flight, Hayley rushed to see Dr. Neel, the surgeon who operated on her, to talk about another ‘first’ involving the mission.

“I said, ‘In a few weeks, you’ll be able to brag that you put the first artificial joint in space,’” she said.

For Hayley, her metal knee helps signal that “space travel is now being open to anyone.”

Dr. Neel sees it similarly: “Hayley’s story will show people that not even the sky is the limit for what you can do, whether it’s in medicine, or commerce or life in general.” 

Hayley plans to devote considerable time on the mission to interacting with St. Jude patients, through either video chats or video messages.

“They’ll be able to see a cancer survivor in space, someone just like them.”

Just recently, amid the whirlwind of preparation for the mission, and a crush of media attention, Hayley and her mom had a talk in which they speculated on how her life would have turned out — what she would have done with it — had she not gotten cancer. Both said they had no idea.

One thing is certain, though: Hayley wouldn’t be headed toward the stars.