United for a Cure
In the summer of 2018, 12-year-old Slidell resident Da’Ni Otis was on a family trip to Disney World when she started complaining of intense back pain.
“She wouldn’t get on any of the rides,” said her mother, Jamika, who ended up taking Da’Ni to the emergency room where she was diagnosed with a muscle sprain.
“A few days later, the pain was getting worse,” said Jamika. “Da’Ni is not a complaining child so we were really concerned.”
Back to the doctor’s office, this time at Ochsner, Da’Ni was given a blood test that gave a different, and much more frightening explanation for the young girl’s sudden pain: leukemia, a type of blood cancer. The next day, the diagnosis was confirmed by a blood marrow aspiration.
In an instant, July 31, 2018, went from just another day on the calendar to a date the Slidell pre-teen and her family will never forget.
Instead of starting as a seventh-grader at Slidell Junior High, Da’Ni began eight months of intensive treatment that wreaked havoc on her developing body. Chemotherapy took all of her hair, and at one point, Da’Ni was admitted to the intensive care unit with a blood sugar level of 1,182 mg/dl (a normal level for 6- to 12-year-olds ranges from 100 to 180 mg/dl).
“It was a side effect of the steroids she was taking,” said Jamika, who added, “those were some very scary times.”
2019 LLS Woman of the Year Allison Shapiro Dandry, director of communications and technology for Krispy Krunchy Chicken, raised $251,000 last year, a record for the event.
The most common type of cancer in children, leukemia accounts for about 25% of all childhood cancer diagnoses. Fortunately, it is also rare — from 2011 to 2015, an average of 3,715 youth (defined as under age 20) were diagnosed with the disease each year.
What used to be a certain death sentence (in the 1940s, when no treatment was available, most patients, especially children, would die within three months), leukemia prognoses have improved dramatically thanks to medical innovations. From 1969 to 2015, death rates for the disease plum- meted 78.6%. Depending on a child’s age and type of Leukemia — acute myeloid leukemia (AML) or acute lymphoblastic leukemia (ALL)— survival rates range from 68.8 to 94.5%.
Despite this decline, however, leukemia is currently the second leading cause of cancer death among youth, accounting for 26.1% of all cancer deaths in those younger than 20.
Last year, my husband and I were going through a rough patch and LLS helped us out. Honestly, they could ask us to jump over backwards and we would happily do it. JESSICA WHITE
A key player in the fight since it’s founding in 1949 by parents who lost their 16-year-old son to leukemia, the Leukemia & Lymphoma Society (LLS) is the world’s largest nonprofit health organization dedicated to funding blood cancer research and providing education and patient services. The organization’s goal is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families.
Of the 53 new drugs that have been approved by the FDA to treat blood cancer since 2017, LLS has helped fund 46 of them.
Opened in the 1960s, the Mississippi/Louisiana chapter of LLS is headquartered in Metairie, where a staff of 11, together with one remote worker in Lafayette, work to provide financial, emotional and informational support to patients and families in both states.
Introduced to the organization by a hospital social worker, Jamika said LLS’ website served as an early source of emotional support during the toughest days of her daughter’s treatment.
“I’d be sitting in the hospital and just be scrolling through the site reading stories of local people who had beaten leukemia and caregivers who had helped them,” she said. “I also got into the nutrition portion of the site and was able to find a guide to help Da’Ni with the blood sugar troubles she was having.”
Along with one-on-one nutrition consultations, LLS offers personalized disease and treatment information through information specialists, support groups and the Patti Robinson Kauffman First Connection Program, a free service that matches patients and families with trained peer volunteers that have already been through what they are going through.
There are also blogs, podcasts and the opportunity to chat online.
New Orleanian Jessica White said it’s the things that seem little that made such a difference when her son Jack, then 5 1/2 years old, was diagnosed with leukemia in June 2017.
“Almost right away LLS gave Jack an iPad,” she said. “It was so genius because here’s this little boy that has to sit completely still for six hours tethered to an IV. I can think of no other way that a child would be able to do that.”
In addition to the emotional strain of unexpected severe illness, the Whites found themselves in financial struggles.
“Last year, my husband and I were going through a rough patch and LLS helped us out,” said White. “Honestly, they could ask us to jump over backwards and we would happily do it.”
The Financial Toll
According to Katie Triplett, executive director of the Mississippi/Louisiana chapter of LLS, the Whites’ struggles are all too common.
“Forty percent of our patients deplete their entire life savings within two years of diagnosis,” she said, “and another 40% abandon treatment when costs reach above $2,000.
In 2019 alone, the chapter provided over $1.63 million to local patients.
“We provide travel assistance, including gas money and hotel stays, we help with co-pays and we have funds for non-medical needs, like helping people with paying their rent, mortgage, utilities and food. You’d be surprised at how many people have to decide whether they’re going to feed their family or pay for treatment.”
Triplett said the cost to businesses is also high.
“People who are sick with these diseases miss an average of 22 days more than healthy employees, and those battling cancer list physical and mental tasks while at work as significant challenges,” she said. “Business owners are crucial to economic development in communities
so it is vital that we provide the support we can — emotional, informational and financial — to help employers better support their teams through their cancer journeys. LLS is always looking for business leaders to partner with us to help increase our brand awareness in the community so that when a patient is diagnosed (every 3 minutes), he/she/ they know to immediately contact us for resources.”
Slidell resident 14-year-old Da’Ni Otis is about to officially be a leukemia survivor. She is this year’s LLS Girl of the Year.
The Big Event
One of the biggest ways LLS reaches out to business and community leaders is through its Man & Woman of the Year program. The first event the Mississippi/ Louisiana chapter held was in 2017 and it still holds the title of the largest first-year event in LLS history, raising approximately $820,000 over 10 weeks.
BY THE NUMBERS
EVERY 3 MINUTES someone in the United States is diagnosed with blood cancer.
22 the number of additional days an employee with a disease misses work each year compared to a healthy employee
$1.3 BILLION LLS has invested in drug research nationally
$1.63 MILLION the amount provided to patients in Louisiana and Mississippi this year by the local chapter of LLS
Chris Bellone, principal at McEnery Company, is chair of this year’s Man and Woman of the Year event which will end with a gala June 11.
A philanthropic competition that challenges business and community leaders to raise funds for the organization, the program typically includes about 20 participants who compete in honor of two local children — blood cancer survivors who are given the title Boy and Girl of the Year. This year, they are Da’Ni Otis and Jack White.
The program kicked off April 7 and will culminate on June 11 with a gala at The National WW II Museum. The gala has sold out the last three years, with over 600 people in attendance.
Chris Bellone, principal at real estate development and brokerage firm McEnery Company, chaired the chapter’s first event and continues to do so. He said he started volunteering with LLS after a college friend’s wife was diagnosed with leukemia.
“I got involved with the Leukemia Cup Regatta at the Southern Yacht Club helping with fundraising and just stayed involved,” he said. “I was intrigued by the efficiency of the organization and the aggressiveness with which they pursued research and results paired with the fact they do so much to help people locally.
Bellone said this year is shaping up to be one of the largest Man/Woman groups, and the goal is to break the $1 million mark. The event made approximately $880,000 last year, helped tremendously by the fact that last year’s Woman of the Year, Allison Shapiro Dandry, the director of communications and technology for Krispy Krunchy Chicken, raised $251,000, the highest amount raised by any participant in this event’s history.
Dandry studied neuroscience in college, and for a while conducted research on stroke therapy. She said she was originally drawn to LLS following the news that two of her friends’ mothers were diagnosed with leukemia.
“I really wanted to learn more about the treatments available,” she said, “and I became struck by how much the organization does to help people and how many people didn’t know they existed.”
When she began creating fundraising events for her Woman of the Year campaign, Dandry said she knew she would make education, not just dollars, a priority.
“Everything we did had some kind of educational component,” she said, “and it was truly a grassroots effort. That $5 at a time eventually became $250,000.”
While she welcomes this year’s campaign members to beat her record, Dandry has moved on to creating a national partner- ship between Krispy Krunchy Chicken and LLS.
“We have 2,500 locations in 46 states, including almost 200 in Louisiana,” said Dandry of the Lafayette-based company.
“We’ll be donating a portion of the sale of every chicken sandwich to LLS in what we’re calling Krunch for the Cure.” The company has pledged $100,000 to LLS by the end of 2021.
Dandry said she sees her company’s new campaign as a solid business move.
“Both customers and employees are looking for companies that are socially responsible, that they know care about more than just the bottom line,” she said. “I know that personally I am a better employee and a better person from what I’ve experienced in my efforts.”
BY THE NUMBERS
46 OF THE 53 new drugs approved for blood cancer since 2017 were funded, at least in part, by LLS
$880,000 was raised during the 2019 Man & Woman of the Year event in New Orleans
$895 BILLION Cancer costs the world more than any other disease and accounts for 1.5% of global GDP losses.
A student at Bricolage Academy, 8-year- old Jack White has been fighting leukemia since he was 5 1/2. LLS Boy of the Year for 2020, he’ll finish his last infusion August 9.
The Greatest Need
“The greatest need right now is on the pediatric side,” said Triplett. “Out of all the drugs approved over the last 40 years, only four have been approved for use on children. We’re also finding that 80% of our kids in remission now are dealing with long-term effects from treatment — everything from an eighth-grader reading at a fourth-grade level, to a 7-year-old with cataracts, to a child with what their doctor is calling ‘type 1.5 diabetes’ because they don’t know what to call it. We don’t want kids to just survive, we want them to thrive.”
In 2019, LLS launched a $100 million multi-year national children’s initiative aimed at increasing support for research grants and launching LLS clinical trials, driving policy to break down barriers to treatment and care and expanding support for children and families.
“We’re going to conduct the first-ever global pediatric clinical master trial,” said Triplett, who added that LLS is currently looking at partnering with treatment centers locally and around the country.
The Road Ahead
Da’Ni Otis turned 14 this past Lundi Gras, but there’s an even bigger day she’s looking forward to — Nov. 13, 2020. That will be her last day of treatment. Da’Ni’s goal is to be an oncologist someday, but in the meantime, in addition to being a straight-A student and volunteering with LLS, she’s crafted her own way to give back — she’s authored a book called “Candy in My Bones.”
“It’s a children’s book that shares everything I went through,” she said. “My mom illustrated it. I hope it will help other kids like me know they’re not alone.”
Now 8 years old and back at school at Bricolage Academy, like Da’Ni, Jack White is in what is called the maintenance phase of treatment, which means he receives chemotherapy orally every day, and through his spine three times a month and goes in for lab work every two weeks. He’s also been involved at his school with LLS’ Pennies for Patients fundraising effort, which challenges students to bring in all the pennies they can over a period of three weeks every year.
He said he looks forward to doing some of the things other kids take for granted, like going to Carnival parades and maybe finally getting a pet. When his last day of treatment comes on August 9, he said he’s going to have a big party and do something he’s wanted to do since his first day of treatment.
“I’m going to ring the bell,” he said excitedly. “The big gold bell in the infusion room. I’m going to be done!”
Forty percent of our patients deplete their entire life savings within two years of diagnosis and another 40% abandon treatment when costs reach above $2,000. KATIE TRIPLETT, EXECUTIVE DIRECTOR OF THE MISSISSIPPI/ LOUISIANA CHAPTER OF LLS