When Madeline was 14, she dreamed of becoming a professional ballerina. Her body had other ideas.
More than 300,000 children will be diagnosed with pediatric cancer this year. It is the No. 1 non-communicable disease causing the death of children around the world. In 2006, one of the children diagnosed with cancer was Madeline Boese. Through bouts of treatment, relapse, and traveling for yet more treatment, Madeline kept her eye on the future.
When Madeline was 14, she had visions of pointe shoes, tutus and sugar plums dancing in her head. She dreamed of becoming a professional ballerina, and hoped for a future in the spotlight doing what she loved.
Unfortunately, her body had different plans.
One day in ballet class in December 2006, she noticed an odd golf ball-sized lump on her left thigh below her pink tights. Her mom, Terri Boese, says a trip to their doctor in their hometown of Plano, Texas, led to a bone-chilling discovery.
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“I was terrified when I heard ‘malignancy detected,’ ” Boese says. “It was awful and so out of the blue. I felt like I was going to hyperventilate, and it took all I had to hold myself together.”
Madeline was immediately referred to a hospital in Dallas where she was diagnosed with acute lymphoblastic leukemia. From there, Boese said everything moved rapidly as Madeline began what would be two and a half years of grueling chemotherapy treatment.
Just two weeks into treatment, Madeline faced the harsh reality that the curtain had closed on her dream of becoming a ballerina. She developed diabetic ketoacidosis, which occurs when the body starts breaking down fat at a rapid rate. She quickly lost 20 pounds, including the majority of her muscle, and became very weak.
“It was very hard because ballet was my dream and my emotional escape,” Madeline, now 26, said. “The whole experience was so scary and surreal, and it was as though my own body had turned against me.”
The race to keep up – on all fronts
When children are undergoing cancer treatment, families face an onslaught of information, appointments and emotions. Even in cases where insurance helps with medical costs, uncompensated care – the parts of care not covered by insurance – can be a big factor in a child’s ability to receive treatment.
Lack of research and funding dedicated to pediatric cancers means American children are still being treated with drugs that were developed in the 1950s, ’60s and ’70s. In the last two decades more than 185 new drugs have been approved for treating adult cancers compared to three specifically for childhood cancer. Two-thirds of childhood cancer survivors in the U.S. will suffer long-term health problems, and one-quarter will be severe or even life-threatening.
Corporations and community organizations are stepping in to help fill the gaps because only 4% of the billions of dollars spent annually on cancer research and treatments are directed toward treating childhood cancers, according to the National Pediatric Cancer Foundation. In 2017 Amazon launched Amazon Goes Gold to raise awareness around childhood cancer to shed light on the incredible work that is being done around the world to find a cure for childhood cancer and increase the quality of a child’s life. It’s why Amazon is supporting and partnering with American Childhood Cancer Organization, Children’s Oncology Group, Seattle Children’s, International Society of Pediatric Oncology EU, and St. Jude Children’s Research Hospital. These organizations make it possible for every child like Madeline to fight for their future, and Amazon’s $4 million donation to support their impactful work will help ensure every child has a fighting chance.
The work done by these organizations span from advocacy for increase in federal and state funding for childhood cancer research, to providing uncompensated care and treatment to children and families who can’t afford it, to supporting global, collaborative clinical trials that increase a child’s chance of survival.
In Madeline’s case, she spent several years constantly in and out of the hospital for treatment. A gifted student in the 9th grade, she was determined to keep her school life on track through home study and also going to class when she could. But it wasn’t easy.
“My diagnosis really hit me when I was able to go back to school and saw how different I was from other normal 14- and 15-year-olds,” Madeline says. “With the demands of treatment, it also became so much harder to keep up with my peers in school, and I had to put a lot of pressure on myself to keep up.”
Over the next few years, she struggled with immense side effects from her chemotherapy, including developing avascular necrosis, which is the death of bone tissue due to insufficient blood supply. This led to a hip replacement when she was only 18.
But after nearly three years, she achieved remission. What’s more, Madeline’s focus on her studies paid off – she graduated on time with the rest of her class, and with honors.
She was, unfortunately, not able to go off to college like her friends due to the side effects from treatment, but she got a job in retail and started thinking about what her future may hold. She knew exactly what she wanted to do.
“I knew I wanted to become a pediatric oncology nurse because of what I had been through,” Madeline says. “I saw the positive impact that the nurses had on so many kids like me with cancer and I wanted to give back in the same way.”
As she began planning to achieve her new dream at the age of 21, her health took a turn for the worse. She suffered from intense migraines and was exhausted all of the time. A routine blood test showed her cancer had come back. Her dream had to be put on hold as she embarked on another two and a half years of intensive chemotherapy treatment.
In January 2016, Madeline was finally cancer-free once again. But routine lab tests soon after showed her cancer had come back once again. This time, a bone marrow transplant was her only option. In March 2017, she had the transplant and was again in remission in April 2017.
But less than a year later, Madeline received yet another blow after she noticed a lump in her breast. Her cancer had returned for the third time and the leukemia manifested as multiple tumors in her breast.
“At that point I just thought I was out of options,” Madeline says.
Hope is found in CAR T-cell immunotherapy
Over the next few months, Madeline’s oncologist searched for other possible treatment options and found Seattle Children’s Hospital’s Pediatric Leukemia Adoptive Therapy (PLAT-02) chimeric antigen receptor T-cell immunotherapy clinical trial for children and young adults with relapsed or refractory acute lymphoblastic leukemia. He told Madeline and her family that was where she needed to go.
With more than 250 patients enrolled, CAR T-cell immunotherapy is one of the most promising experimental cancer therapies of our time. The therapy, which takes place over the course of a few weeks, reprograms a patient’s own T cells in their immune system to seek out and destroy cancer without harming healthy cells.
In September of 2018, Madeline received her cancer-fighting T cells. That same month she got the news she was in remission once again. In the beginning of October, scans also revealed her tumors had disappeared.
Over the next few months, Madeline returned to Seattle to receive a series of five “booster” infusions with T cell antigen-presenting cells.
In March 2019, tests showed that the boosters were doing their job and her CAR T cells were very much alive and thriving at six months. From what Seattle Children’s doctors have learned, the six-month milestone is key. If a patient’s CAR T cells are still present at that point, there is a higher likelihood they won’t relapse.
The pursuit of a new dream
With cancer finally behind her after a 13-year battle, Madeline is ready to start living her life. She says she has found a renewed sense of hope, and she is looking into enrolling in classes in the fall as she pursues her dream of being an oncology nurse.
“I want to give back to the oncology world for being there for me, treating me so well over the years and saving my life,” Madeline said. “I want to have the same impact on other peoples’ lives someday. It’s where I belong.”
As part of Amazon Goes Gold, Amazon is donating more than $4 million to support research like T-cell immunotherapy. Amazon will ship customer orders in packages with gold ribbons – symbols of childhood cancer – to raise awareness and will host more than 50 events worldwide.