St. Jude Hoards Billions While Many of Its Families Drain Their Savings


St. Jude Hoards Billions While Many of Its Families Drain Their Savings 1

A series of sharp knocks on his driver’s side window startled Jason Burt awake.

It was the middle of the night on a Saturday in 2016. Burt was sleeping in his pickup truck in the parking lot of St. Jude Children’s Research Hospital in downtown Memphis, Tennessee, where his 5-year-old daughter was being treated for brain cancer. He’d driven more than 500 miles from his home in Central Texas to visit her.

A St. Jude security guard peered into the truck and asked Burt what he was doing. Burt explained that his daughter and her mother, his ex-girlfriend, were staying in the hospital’s free patient housing. But St. Jude provides housing for only one parent. Burt, a school bus driver making $20,000 a year, told the guard he couldn’t afford a hotel. The guard let the exhausted father go back to sleep.

St. Jude would do no more to find him a place to stay.

“They were aware of the situation,” Burt said. “I didn’t push anything. I was just grateful she was getting treated and I was doing what I needed to do.”

St. Jude is the largest and most highly regarded health care charity in the country. Each year, the Memphis hospital’s fundraisers send out hundreds of millions of letters, many with heart-wrenching photographs of children left bald from battling cancer. Celebrities like Jennifer Aniston and Sofia Vergara sing the hospital’s praises in televised advertisements. This year, St. Jude’s fundraising reached outer space. The SpaceX Inspiration4 mission in September included a former St. Jude patient as a crew member.

St. Jude Hoards Billions While Many of Its Families Drain Their Savings 2

St. Jude’s fundraiser mailings heavily rely on patients in the middle of cancer treatment.

Last year, St. Jude raised a record $2 billion. U.S. News & World Report ranked it the country’s 10th-best children’s cancer hospital, and St. Jude raised roughly as much as the nine hospitals ahead of it put together. It currently has $5.2 billion in reserves, a sum large enough to run the institution at current levels for the next four and a half years without a single additional donation.

St. Jude makes a unique promise as part of its fundraising: “Families never receive a bill from St. Jude for treatment, travel, housing or food — because all a family should worry about is helping their child live.”

St. Jude’s Raised More Money in 2019 Than the Rest of the Top 10 Children’s Hospitals for Cancer — Combined

St. Jude Hoards Billions While Many of Its Families Drain Their Savings 3

St. Jude Hoards Billions While Many of Its Families Drain Their Savings 4

Fundraising totals combine contribution and grant revenue reported by each hospital and that of its associated charitable foundation. Rankings of top pediatric hospitals for cancer from U.S. News & World Report.


Credit:
Table: Andrea Suozzo, ProPublica. Source: IRS, U.S. News & World Report.

But for many families, treatment at St. Jude does not relieve all the financial burdens they incur in getting care for their children, including housing, travel and food costs that fall outside the hospital’s strict limits, a ProPublica investigation has found.

While families may not receive a bill from St. Jude, the hospital doesn’t cover what’s usually the biggest source of financial stress associated with childhood cancer: the loss of income as parents quit or take leave from jobs to be with their child during treatment. For many families, the consequence is missed payments for cars, utilities and cellphones. Others face eviction or foreclosure because they can’t keep up with rent and mortgage payments.

Parents at St. Jude have exhausted savings and retirement accounts, borrowed from family and friends or asked other charities for aid. ProPublica identified more than 100 St. Jude families seeking financial help through the online fundraiser GoFundMe, with half of the campaigns started in the past two years. We counted scores of other events like concerts and yard sales organized to help St. Jude families in need.

One family relied on a mixed martial arts fighter to help raise money for expenses like car repairs and cellphone bills, items that St. Jude would not cover. Another spent $10,000, originally saved to purchase a home, on costs related to treatment at St. Jude.

Only about half of the $7.3 billion St. Jude has received in contributions in the past five fiscal years went to the hospital’s research and caring for patients, according to its financial filings with the Internal Revenue Service. About 30% covered the cost of its fundraising operations, and the remaining 20%, or $1 of every $5 donated, increased its reserve fund.

Further, ProPublica found, a substantial portion of the cost for treatment is paid not by St. Jude but by families’ private insurance or by Medicaid, the government insurance program for low-income families. About 90% of patients are insured, bringing in more than $100 million in reimbursements for treatment a year. If a family shows up at St. Jude without insurance, a company hired by the charity helps them find it. St. Jude does cover copays and deductibles, an unusual benefit.

St. Jude spends about $500 million a year on patient services — a figure that includes all medical care and other assistance. Very little of what St. Jude raises from the public goes to pay for food, travel and housing for families, the investigation found. Last year, it was 2% of the money raised, or nearly $40 million.

In written responses to ProPublica, lawyers for St. Jude and its fundraising arm, the American Lebanese Syrian Associated Charities, or ALSAC, emphasized that countless families have benefited from the charity provided since the hospital opened its doors in 1962.

“ProPublica should be celebrating St. Jude and ALSAC for their commitment to finding cures, saving children’s lives, and optimizing patient outcomes,” one of their letters said.

It is unquestioned that St. Jude has helped thousands of children and their families over the decades. Patients have offered scores of testimonials about the hospital’s generosity and care.

“This often comes as a huge relief to families who often expect to sell all their belongings just so their children can get the medical care and treatment they need to save their lives,” the hospital’s lawyers wrote. “St. Jude and ALSAC understand that this arrangement cannot cover all financial obligations of all families, nor can St. Jude or ALSAC shield families from all the financial and emotional effects” of a child’s illness.

St. Jude said it discloses the limits of its aid to families on its website and in material provided to those whose children are admitted to the hospital. That includes the rule Burt ran into, that the hospital covers the travel and housing costs of only one caregiver and one patient. For many families, the daily food budget is capped at $50. In some cases, hotel stays en route are provided only if families travel more than 500 miles to get to St. Jude.

St. Jude said its assistance is “based on guidelines to ensure fairness and responsible use of donor funds” and on remaining compliant with a federal anti-kickback statute that makes it a criminal offense to offer something of value to induce a medical referral. St. Jude declined to explain how the law affects the amount or type of financial assistance it provides to families.

“St. Jude has never promised anyone — neither patients nor the public in general — that it can solve all financial problems,” the letter said.

When parents need additional financial help, St. Jude’s social workers often send them to smaller charities or in some cases suggest that they apply for government aid.

They refer many to the Andrew McDonough B+ Foundation, which gives more than $2.5 million a year in grants to thousands of families of pediatric cancer patients at hospitals across the country to help cover rent, utilities and other urgent expenses.

Joe McDonough, the foundation’s founder and president, said St. Jude families have the same money problems as families of patients at other children’s hospitals, even though he said St. Jude’s marketing creates the public perception that it alleviates these burdens.

“People say to me, ‘Why are you helping St. Jude families?’” McDonough said. “Well, what happens when a family lives in Augusta, Georgia, and they’re being treated at St. Jude? They still have to pay the rent on their apartment back in Augusta, Georgia. They still have to make their car payment. And it’s not my position to say whether St. Jude should be paying for all those expenses or not. I’m just explaining that it’s not a totally free ride.”

The help St. Jude provides to families may soon be increasing.

After ProPublica provided St. Jude with the findings of its reporting, the hospital informed families of a dramatic expansion in the assistance it will give to parents and other relatives during their kids’ treatment in Memphis.

Among the most significant changes are increasing travel benefits to two parents instead of one and covering regular trips to Memphis for siblings and other loved ones. St. Jude’s letter to parents said the changes take effect Nov. 15.

That would’ve made a big difference for Burt.

Burt’s daughter, whom ProPublica is not identifying at her mother’s request, was originally diagnosed with cancer in early 2015, when doctors discovered a tumor pressing against her brain stem. She had successful emergency surgery to remove the mass at Dell Children’s Medical Center in Austin, Texas. Medicaid and Dell Children’s covered the bill, but the family was still faced with the cost of her ongoing treatment.

“At that point I’m thinking: ‘What am I going to do? I guess I’m selling my house, whatever it takes,’” Burt recalled. “Honestly, that was probably a big deciding factor for St. Jude.”

St. Jude accepted Burt’s daughter into a clinical trial, and the family moved to the hospital’s patient housing in Memphis for several months. Both parents stopped working for a time, and people in their hometown raised cash to pay their bills.

Her cancer relapsed the following year with several new, inoperable brain tumors. Burt and his daughter’s mom broke up during that round of treatment, and financial problems piled up.

Burt said his credit score dropped so low that utility companies refused to set up service unless he first paid a deposit. One of the family’s cars was repossessed, he said. Burt’s 2005 Chevrolet Colorado pickup has 300,000 miles on it, many of them logged on trips from Texas to Memphis. When Burt’s daughter was at St. Jude for treatment or exams, he’d work all week, then visit on many weekends where he would spend Saturday night sleeping in the hospital parking lot.

He asked hospital officials if he could sleep in St. Jude’s housing, but they turned him down, he said.

Burt said he was happy with the care St. Jude provided. His daughter’s health is stable, he said, and brain scans taken during her September exam confirmed her two remaining tumors haven’t grown. But he’s still trying to recover financially.

“It’s five years now,” Burt said, “and I’m not completely caught up yet.”

A Fundraising Giant

St. Jude began with a fledgling entertainer praying for a career break.

When Danny Thomas, a comic and actor best known for the TV sitcom “Make Room for Daddy,” was struggling to earn a living in the late 1930s, the devout Roman Catholic went to church and asked for help from the patron saint of desperate cases, St. Jude Thaddeus. If he made it big, Thomas promised to build “a shrine where the poor and the helpless and the hopeless may come for comfort and aid,” according to a history published by ALSAC.

Within five years, Thomas became a star and worked to fulfill his promise by building a children’s hospital named after St. Jude and a fundraising organization to support it. Thomas, whose parents were Lebanese immigrants, recruited others who shared his Middle Eastern roots to help.

He used his fame to raise the hospital’s profile, appearing in ads for St. Jude and hosting fundraising events starring the likes of Elvis Presley and Sammy Davis Jr. Thomas’ daughter Marlo, herself a TV star, succeeded him in championing St. Jude.

Today, St. Jude is a specialty treatment and research center with about 5,700 employees and 73 beds. Other top children’s hospitals have more staff and beds, and they also treat more conditions.

Though St. Jude raises money across the world, most of its patients come from Tennessee and surrounding states. Patients from elsewhere are usually enrolled in clinical trials.

ALSAC, which handles St. Jude’s fundraising and investments, has 2,188 employees in Memphis and in 36 regional offices across the country. More than 400 of the fundraising arm’s employees are paid over $100,000, according to IRS filings. The charity takes in so much money each year that it regularly steers hundreds of millions of dollars in donations to reserve accounts, the filings show.

St. Jude Hoards Billions While Many of Its Families Drain Their Savings 5

St. Jude’s financial holdings, documented in the IRS disclosure filed by ALSAC, the hospital’s fundraising arm, for fiscal year 2020.

Overall, St. Jude’s reserve has grown by 58% over the past five fiscal years, during which it has added $1.9 billion to its investment accounts and shifted its portfolio toward financial products designed to generate bigger returns than stocks, bonds and mutual funds traditionally deliver. The charity stowed more than a third of the new surplus, $688 million, in riskier private equity investments.

IRS rules do not limit the size of a nonprofit’s reserves, and experts on charitable finance differ on best practices.

St. Jude meets Better Business Bureau guidelines, which call for charities to maintain reserves of less than three times total expenses, but other experts expressed alarm that the hospital had accumulated such a large sum of money.

The size of the St. Jude reserve is “staggering,” said Laura Otten, the director of LaSalle University’s master program in nonprofit leadership. She said a typical reserve for a nonprofit the size of St. Jude is one to two years of expenses. Donors generally want to know their dollars are being put to work, she said.

The hospital said it needs a large reserve because its unique operating model relies on donations to fund annual operating costs. “[W]e are highly donor-dependent and subject to the economic driven vagaries of charitable giving,” the hospital said in a written response to ProPublica questions.

But the hospital’s reserve is already more than large enough to buffer against recessions and potential drops in donations, said Ge Bai, a professor of accounting and health policy at Johns Hopkins University. “They should be spending the money as aggressively as they raise it, but they seem to be hoarding,” Bai said.

The hospital said it is also raising billions to fund the construction of new housing and research space, although its plans do not currently include spending any of the reserve on new facilities.

St. Jude’s reserves have ballooned at a time when researchers, oncologists, advocates and families complain about a dearth of funding for pediatric cancer studies nationally.

Dozens of other children’s hospitals across the country have research divisions devoted to pediatric cancer and enroll their patients in clinical trials for new drugs and procedures. They pay for research staff and studies in part with donations from their local communities, often competing directly against St. Jude. ALSAC has regional offices in several U.S. cities with elite pediatric cancer centers of their own, including Atlanta, Chicago, Denver and Seattle.

Coury Shadyac, an ALSAC vice president and daughter of the organization’s CEO, Richard Shadyac Jr., oversees a team of 45 fundraisers along the West Coast “raising $300 million annually” for St. Jude, according to her LinkedIn profile. That’s $100 million more in donations than either Children’s Hospital Los Angeles or Seattle Children’s Hospital, two of the nation’s leading pediatric cancer institutions, received in fiscal year 2019, IRS disclosures show. But it’s only a small part of St. Jude’s fundraising haul.

ALSAC’s ubiquitous fundraising has led to concerns that it undercuts other hospitals’ campaigns. Some doctors interviewed by ProPublica said they have encouraged donors to give their money to hospitals closer to home.

David Clark, a pediatrician and former longtime chairperson of pediatrics at Albany Medical Center in New York, said St. Jude raises tens of thousands of dollars in his region that does little to benefit the children with cancer in his area since almost all are treated locally. ALSAC has a fundraising office located a few miles from Albany Medical.

“They think of every way they can to make money and the least amount of ways to spend it,” Clark said. “They deceive people into supporting something that is totally dishonest.”

St. Jude Hoards Billions While Many of Its Families Drain Their Savings 6

St. Jude Hoards Billions While Many of Its Families Drain Their Savings 7

St. Jude’s fundraising appeals often cite the promise that families do not receive a bill from the hospital so that they can focus on helping their child live.

Nearly all St. Jude solicitations feature the hospital’s patients — the children usually smiling and bald from treatment — along with the familiar promise that it never sends families a bill.

It’s a message that ALSAC has tested and researched to maximize donations. Donors appreciate the promise to never bill families, said Mary Kate Tolan, an ALSAC executive, in a podcast last year. She added that no parent should have to take out a second mortgage or lose their job because their child is being treated at St. Jude.

Alternative messaging to the no-bills promise did not “perform as well,” said Tolan, who develops emerging technologies for ALSAC. Tolan did not return requests for comment.

“Borrowing and Begging”

Catherine Rainey thought she would be free of financial worry when her 2-year-old daughter Harlee was admitted to St. Jude last year.

“The first thing my dad said was: ‘Catherine, you have nothing to worry about. They raise billions of dollars. Anytime you have a problem, you tell them and they will take care of it,’” she said.

St. Jude Hoards Billions While Many of Its Families Drain Their Savings 8

Catherine Rainey with her daughter Harlee, who has cancer, at their home in Appalachia, Virginia, in October. Harlee is being treated at St. Jude.


Credit:
Greg Kahn, special to ProPublica

But like many families, the Raineys discovered that St. Jude’s charity came with limits on payments for expenses such as travel that could be bewildering.

Harlee ended up at St. Jude after first going to nearby Niswonger Children’s Hospital in Johnson City, Tennessee, in October 2020. The doctors there discovered a cancerous mass attached to her right kidney. The hospital is a St. Jude affiliate, and the doctors recommended the toddler be treated in Memphis.

Rainey, a single mother of two young girls, had to leave her job as a nurse for months to be with Harlee at St. Jude. The loss of income quickly created problems. “My family, we don’t come from money,” she said. “We are not doctors and billionaires. We make it. That is it.”

St. Jude did provide food and housing on campus. But the hospital said it couldn’t help with the items that were causing Rainey to worry, including car payments, insurance and cellphone bills.

Rainey’s boss set up a GoFundMe account to help make up some of her lost income. A small local charity, Kari’s Heart Foundation, also helped out by paying about $3,000 worth of phone bills and car payments, staving off repossession.

“It was just a bunch of borrowing and begging,” Rainey said of her experience while her daughter was treated in Memphis. “They acted like it was coming out of their own pocket.”

Harlee has checkups at St. Jude every three months that last about four days. The costs of travel to and from St. Jude put an additional strain on Rainey and Harlee. St. Jude is an eight-hour ride, without stops, from Rainey’s home in Appalachia, Virginia, a town of 1,432 people near the Kentucky border.

Rainey said her daughter generally can make it about two-thirds of the way, with frequent stops, before she has had enough. “When she is done, she is really done,” Rainey said. “She will scream, cry and kick.”

In July, in advance of an August trip to Memphis, Rainey called the patient services department at St. Jude to see whether they could help pay for a hotel to break up the travel day — an expense Rainey said she could not afford.

To qualify for a hotel reimbursement, Rainey said, St. Jude told her she had to live more than 500 miles from Memphis. The ride from her home to the hospital is 530 miles (a measurement ProPublica confirmed with mapping tools). However, Rainey said, St. Jude told her it measured the trip from city limit to city limit and came up with a distance of 491 miles. Even using that metric, the distance is still more than 500 miles, ProPublica found.

When she challenged the hospital’s stance, Rainey said she was berated by a patient services representative.

“I was feeling pissed off, and I was crying,” Rainey said of the interaction. “You give up your whole life for your child, and they tell you don’t worry about anything, we will cover this and then they tell you to just push through the drive.”

Rainey did what she could to make the trip go smoothly: She configured a small table to extend across her daughter’s car seat, so Harlee could play with the coloring books, markers and Play-Doh bought for the ride. She packed snacks and a cooler full of drinks. Since Harlee was still potty training, she brought extra towels and clothes for accidents. The final step was handing Harlee her Baby Yoda doll once she settled into her car seat. Rainey had sewed a port in the doll’s chest to mirror the one Harlee has in hers.

About three hours from Memphis, Harlee was crying inconsolably. Rainey pulled off the interstate and stopped at the first hotel she could find. She later learned it had been described in online reviews as “awful,” a “nightmare,” “disgusting” and “horrible.”

“I didn’t know the area,” she said. “The hotel was garbage. It just made it worse.”

The drive home also required a hotel stop, but this time Rainey was able to find one that was cleaner. A $100 donation from a local charity helped to offset the cost.

Among the changes St. Jude is making is to reimburse families like Rainey’s, who live more than 400 miles from the hospital, for an overnight stay at a hotel when making the trip to Memphis.

Rainey said she was called by a St. Jude representative after ProPublica asked about her situation and was told the hospital would pay for her past hotel stays when traveling back and forth to St. Jude. The representative, Rainey said, also told her the hospital discovered the way it had been measuring mileage was inaccurate.

“I am not the only one,” Rainey said. “There are others. They should reimburse all the families.”

The anxiety of unpaid bills piling up, combined with caring for a child undergoing chemotherapy or radiation, takes a severe toll on parents and guardians, said Christopher Hope, a UPS driver who started a Memphis-based foundation after meeting St. Jude parents who were in financial crisis.

Hope’s small charity spent $12,000 last year to help families. Parents in St. Jude social media groups often refer families in need to it. The charity has helped families cover mortgage and car payments.

“I never knew anything about this until hearing about it from families,” Hope said. “All we hear is about kids and treatment, not the other side of it.”

St. Jude Hoards Billions While Many of Its Families Drain Their Savings 9

Rainey


Credit:
Greg Kahn, special to ProPublica

“It’s Not Free”

In addition to charities like Hope’s, St. Jude families have repeatedly turned to fundraising sites and networks of their relatives, friends and neighbors to help cover basic expenses while unable to work during their children’s treatment. Parents’ requests on fundraising sites are sometimes desperate pleas.

In January 2017, one father in North Carolina said he’d had to abandon a business venture to take time for his son to receive care at St. Jude. His income had plummeted. He asked friends to give as little as $10 to “at least make it possible to survive.”

This year, a mother in Memphis whose 1-year-old son receives care at St. Jude for sickle cell disorder ran out of medical leave and couldn’t work her shifts at a clothing distribution center. After the child had a flare up in July requiring several days of treatment at the hospital, she said she returned home to find her power shut off. Sitting in a dark apartment, unable to pay her utility bills, she set up a GoFundMe campaign. She received less than $20 through the site; her relatives eventually pooled $350 to get her electricity restored.

Even parents with stable jobs and private health insurance often take on debt and need outside help.

When Taylr and Treg Murphy’s 17-year-old son Peyton was diagnosed with cancer and needed monthslong treatment at St. Jude in 2017, the entire family — mom, dad, sister and brother — went with him, traveling from their home in Lafayette, Louisiana, to Memphis. Treg took a leave from his job at an oil mining company and Taylr, who works at her mother’s bakery, did the same.

“We knew that it was going to be a collective team effort,” Treg said. “Without even a discussion, we figured that if Peyton’s got to go for the surgery, we’re all going.”

Peyton had an enormous tumor that had grown out of his right femur and was crowding his knee. Rounds of chemotherapy appeared to have killed osteosarcoma cells elsewhere in his body. But he needed to undergo a procedure called limb-sparing surgery that would require weeks of recovery time at the hospital.

The hospital agreed to allow all five family members to stay for free at St. Jude if they bunked together in a single room. It assigned them a spot in Tri Delta Place, its hotel-like short-term patient residence on the campus. Tri Delta is set up for visits of up to seven days, according to the hospital’s guide for volunteers, but the Murphys were there for almost 50.

Taylr said the unit at Tri Delta had no oven or stove and St. Jude provided no grocery money, instead allotting them a $50-per-day credit at the hospital cafeteria, Kay Kafe — not enough to feed the family of five. As the weeks wore on, the Murphys split grilled cheese sandwiches and paid for food out of pocket.

After ProPublica asked about the hospital’s food allowances, St. Jude said it would increase them as part of the changes scheduled to go into effect this month. The hospital switched from a $50-a-day cap per family to providing $25 a day to each family member. For a family of four, that would double the food benefit. A weekly stipend given to families in long-term housing was increased to $150 from $125.

For the Murphys, it was the loss of their work income, more than out-of-pocket expenses, that put them into a financial hole as Peyton’s treatment went on. Treg’s employer couldn’t pay him during his long absences.

Fearful of being evicted or having their car repossessed, Taylr said she asked a St. Jude social worker for assistance. The social worker helped her apply for grants from other charities. Taylr said the B+ Foundation paid their rent one month, which ensured they’d have a home to return to.

In the years since his initial treatment, Peyton has gone back to St. Jude repeatedly for exams and surgeries to remove malignant growths in his lungs. Taylr and Treg have missed more work to bring Peyton to Memphis, costing them thousands of dollars more in income.

By the start of this year, Taylr and Treg said they were about $20,000 in debt and panicking. Dustin Poirier, a former UFC champion from their hometown, heard from a friend about Peyton and the family’s financial trouble. He donated $10,000 to them from his personal charity and in May hosted a local fundraiser that collected enough to pay off their credit cards.

St. Jude families sometimes commiserate about money problems with each other, Taylr said, but few are aware of the extent of the hospital’s unspent resources. The Murphys said they didn’t know St. Jude has more than $5 billion in reserve or that it continues to raise hundreds of millions of dollars in surplus donations each year.

St. Jude’s Stashes Nearly a Quarter of Its Revenue Each Year

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St. Jude Hoards Billions While Many of Its Families Drain Their Savings 11

Based on an average of finances reported by St. Jude and its fundraising organization, American Lebanese Syrian Associated Charities, between fiscal years 2015 and 2019. The unlabeled portion of the revenue bar includes $53 million categorized as “other.”


Credit:
Chart: Andrea Suozzo, ProPublica. Source: IRS.

“That’s just insane,” Taylr said. “That just blows my mind. When we first started getting treated, people would be like, ‘Oh, St. Jude covers everything, that’s awesome.’ That’s not how it works. People don’t understand that. I truly didn’t understand before I got into St. Jude.”

Taylr and Treg said the doctors at St. Jude are “amazing” and they’re grateful for their son’s care. But they bristled at the assumption that it was covered by the hospital’s charity. The family’s insurance paid a substantial part of the bills.

“It’s not free,” Taylr said. “My husband works very hard for the insurance we have — and they are billed.” The Murphys pay $12,000 in health insurance premiums each year.

Their struggle continues. Peyton’s cancer has relapsed, and he’s making regular trips with his mom or dad back to St. Jude for chemotherapy. The family is again applying for help from other charities.

Wiped Out Savings

The costs associated with care at St. Jude caused at least one family to stop going to Memphis altogether.

Last winter, Kelly Edwards was excitedly searching through Tulsa real estate listings after years of diligently saving $10,000 for a down payment on a house. She craved a permanent home for herself and the two young brothers she had taken in five years earlier at the behest of a family friend. She hoped to adopt the boys, now 13 and 9, who call her mom.

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Kelly Edwards with DJ, who is being treated for cancer at their home near Tulsa, Oklahoma.


Credit:
Greg Kahn, special to ProPublica

In February, the older boy, DJ, was lethargic and uninterested in his schoolwork. After several doctor visits, he was diagnosed with acute lymphoblastic leukemia at a Tulsa hospital. The cancer, referred to as ALL, is the most common type among children, with survival rates that exceed 90%. A day after his diagnosis, DJ and Edwards were driving six hours to Memphis for treatment at St. Jude, which is affiliated with the Oklahoma hospital.

The pair stayed for free at an independently operated Ronald McDonald House near St. Jude, and a weekly stipend from the hospital helped to pay for meals — aid that Edwards said was a blessing. DJ had health insurance through the Oklahoma Medicaid program.

But as with the Murphys, lost income soon put Edwards’ family into financial jeopardy. She works as a supervisor for a company that delivers packages for Amazon. After she used up two weeks of paid time off, she stopped getting paychecks. The bills, however, kept coming: rent, car payments, utilities. To that was added the $250 a week she paid a friend to stay with DJ’s younger brother and her two dogs in Tulsa.

Within four months, her house savings were wiped out. Edwards said she told her St. Jude social worker about her financial woes but got no additional help.

One of Edwards’ adult daughters started a GoFundMe campaign to help, bringing in just over $3,000. Edwards said she appreciated the aid but believes donations were kept low by the widespread perception that St. Jude families don’t have financial problems.

“Everyone hears that everything is taken care of by St. Jude,” she said. “That is not true, but everyone has that mentality.” She said someone she knew asked her “what is that money going for if St. Jude’s is paying for everything?”

DJ was scheduled to go back to St. Jude for three weeks of treatment in August, but Edwards decided she simply couldn’t afford it. “I don’t have the money to go back and forth,” she said. She worked with DJ’s local doctors and found that the hospital near her home in Tulsa could provide the same treatment he was scheduled to get in Tennessee.

The local treatment allowed her to continue working some shifts and to be at home with both of her boys. DJ is also happier when he is home, Edwards said.

Edwards and the boys are now living in a small house her brother owns just outside Tulsa. Late on a recent weekday afternoon, DJ slowly shuffled into the living room, exhausted from a day of chemotherapy treatment.

St. Jude Hoards Billions While Many of Its Families Drain Their Savings 13

Edwards comforts DJ, 13, at home after receiving chemotherapy in October.


Credit:
Greg Kahn, special to ProPublica

He is in the midst of a 20-week regimen where he receives the cancer-killing drugs every other day, just one phase of a nearly three-year treatment plan. He wore an orange knit hat, T-shirt and shorts. He rubbed his eyes before asking a visitor, “How is your day going?” He smiled at the positive response. When he heard the family was eating steak for dinner, he eagerly jumped up to start helping in the kitchen.

After they moved in, Edwards hung family portraits on the walls to make it feel homier. She doesn’t expect they will be moving again any time soon.

The dream of buying a home of their own is gone.

Former ProPublica reporter Marshall Allen contributed reporting. Kirsten Berg contributed research.