Eight-year-old Kaitlyn Johnson has had to deal with cancer for the majority of her young life. In fact, she was only 18 months old when she was diagnosed with acute lymphoblastic leukemia (ALL), the most common cancer among children and young adults. Her young life was quickly consumed with cancer treatments, doctors’ visits, and hospital stays. Throughout this time, Kaitlyn was brave, positive and continued to pursue her passion for dancing – no matter the location.
When she was first diagnosed, her parents, Mandy and James, made a decision that they would make this situation as positive as it could be. The family dressed up together before going to the hospital, made friends with all the people who they trusted with her care, and found small ways to make each moment positive.
Kaitlyn’s perspective is incredibly unique. A hospital visit is not feared, but it is a place where she can say hello to all her friends – from her friends who are patients, other families, nurses, doctors, security guards, to her therapy dog.
“As a parent, if your child is scared you want to be who they reach to. You’re conditioned to think that you’re the brave one,” said James. “But, when your kid touches your hand in that moment of fear and comforts you, you realize that they are the reason you’re strong.”
After three years of chemotherapy, the treatment was not working. Mandy and James had long discussions with Kaitlyn’s doctor who suggested that they enroll Kaitlyn in a clinical trial for a new immunotherapy. The revolutionary treatment, called CAR T-cell immunotherapy, had showed promise for other young children like Kaitlyn. The process was extremely unique and innovative – the doctors would remove Kaitlyn’s T-cells, the soldiers of her immune system, and reengineer them so that they could fight her cancer.
Today, Kaitlyn is now cancer free.
One Child Too Many
Unfortunately, not all stories of childhood blood cancer patients have a happy ending like Kaitlyn’s. A staggering forty percent of all pediatric cancers are blood cancers, and although survival rates have improved dramatically in recent decades, every young life lost to blood cancer is one too many. Since childhood cancers are biologically distinct from adult cancers, the way children respond to treatment is unique and dedicated pediatric research is needed to understand the molecular underpinnings of these diseases, identify appropriate dosages and evaluate the long-term impact of treatment.
Since LLS was founded in 1949, the median five-year-survival rate for children with acute lymphoblastic leukemia (ALL), the most common type of cancer to impact children, has improved from 5 percent to approximately 90 percent. But there is still much more to do.
Although survival rates have improved dramatically for children with ALL, children with other types of blood cancers, such as acute myeloid leukemia (AML), still face a difficult prognosis. Further, the lifelong impact of childhood cancer treatment can include severe physical and cognitive impairments, secondary cancers, and a range of ailments that the medical community is only beginning to understand.
That’s why LLS has committed to more than doubling our investment in pediatric research over the next five years. We are committed to investing $20 million in pediatric cancer research over this time in programs spanning the spectrum from basic science to translational research and clinical trials. We have convened a team of leading pediatric physicians and scientists to investigate the feasibility of launching a multi-site precision medicine clinical trial in pediatric leukemia. We’ve also set an ambitious goal of sequencing the genetic profiles of every child with leukemia in order to facilitate faster and more precise research into the unique molecular drivers and pathways of pediatric cancers. Our ultimate goal is to bring cures to children faster and deliver the promise of precision medicine to children with leukemia.
At the same time, we plan to expand the education and support we already provide to children with cancer and their families, including clinical trial enrollment, financial assistance, and local support groups. Through our advocacy efforts, we will continue to advocate for cures and ensure these children are able to access lifesaving treatment.
For education programs on childhood cancer, click here.
For 16 years, Burlington Stores has partnered with The Leukemia & Lymphoma Society (LLS), funding research and lifesaving treatments. Together, they have saved lives and helped bring smiles to those touched by blood cancers, with more than $32 million raised to date. However, with nearly 1.3 million people in the U.S. living with or in remission from blood cancers, there is still more work to be done. That’s why for the 17th consecutive year, Burlington and LLS are joining forces in the fight against blood cancers by raising money for lifesaving research and treatments, as well as helping child survivors get ready for the milestone of returning to school after undergoing treatment.
Timed to Blood Cancer Awareness Month, the campaign kicked off on Sunday, September 9 in more than 640 Burlington stores nationwide. Now through December 1, customers are encouraged to donate $1 or more at checkout to support LLS’s goal to create a world without blood cancer by advancing research to find new treatments and cures. Last year alone, this campaign raised more than $3.3 million to support the cause.
Nearly 6,000 school-age children are diagnosed with blood cancers each year. To help ease their transition back to school after treatment, Burlington and LLS are working with the 56 LLS chapters nationwide to surprise young survivors across the country with a gift card for a new head-to-toe look for schoolat their local Burlington store, so they can feel excited and confident while showcasing their own personal style.
Styled by Burlington, below are the heroic stories of young cancer survivors, Garret, Olivia and Gabriela, who LLS and Burlington have brought smiles to. Along with other fellow survivors, their smiling faces will be featured in stores nationwide.
Garrett
Shortly after Garrett’s second birthday, his parents began to worry when he started experiencing unusual symptoms such as back pain, loss of appetite and trouble walking. It wasn’t long before they brought him to the Children's Hospital of Philadelphia to see what was wrong. After undergoing several tests, Garrett was diagnosed with leukemia and began aggressive treatment right away.
Today, Garrett is a healthy third grader and has been in remission for two years! Despite several side effects and countless hospital visits over the years, he continues to keep a positive attitude and push through with indescribable bravery. He recently made his local little league all-star baseball team and wants to be a professional baseball player when he grows up.
Olivia
Olivia was diagnosed with acute myeloid leukemia at the age of two. She underwent numerous rounds of chemotherapy, received two bone marrow transplants and had several surgeries. Despite everything, she maintained a joyful demeanor, which inspired all those around her.
Today, Olivia is 11-years-old, cancer free and doing great in her school’s singing program. She is also a very helpful big sister to her little brother Grayson.
Gabriela
Gabriela was diagnosed in February 2007 with acute lymphoblastic leukemia (ALL) when she was just two years old. The typically energetic and playful little girl began to experience trouble walking and often fell while playing. Although she walked with difficulty, no other symptoms were noted by her parents. After testing diagnosed her with ALL, Gabriela would have to endure two years of chemotherapy, along with port surgeries, countless blood transfusions and tests. Gabriela stayed overnight in the hospital for weeks after her surgeries.
Today, Gabriela is in the eighth grade and the captain of her school basketball team. She loves going to the beach with her friends and family.
Customers shopping at any Burlington store now through December 1 can donate at checkout to benefit LLS, helping to find cures for blood cancers. For more information visit Burlington.com or LLS.org.
Leukemia Survivor, Myrrah Talks to Dr. Nichols about the Latest in Leukemia Research and Treatment
September is Blood Cancer Awareness Month and The Leukemia & Lymphoma Society (LLS) is increasing awareness about the urgency to find cures for blood cancers – the third most common cancer killer in the U.S. Through our “Ask the Doctor” blog series, blood cancer survivors have the chance to ask LLS’s chief medical officer, Gwen Nichols, M.D., about the three main types of blood cancers: leukemia, lymphoma and myeloma.
Featured Leukemia Survivor: Myrrah
When Myrrah was just six years old, she was diagnosed with acute lymphoblastic leukemia (ALL). Her family lived in India at the time, where she received a year of intense treatment. When her blood work showed no signs of cancer, her family celebrated with a vacation to Europe. Then, during a routine checkup they learned that Myrrah’s cancer had returned and the doctors said there was nothing more they could do. Desperate for hope, Myrrah and her father travelled to New York and met with LLS-funded researcher, Dr. Andrew Kung. In 2016, after a year of treatment and a bone marrow transplant from her older brother, her lab work showed no sign of cancer. Today, 12-year-old Myrrah loves being creative and is thriving in school. She continues to give back by participating in various fundraising campaigns through LLS.
Recently, Myrrah had the chance to ask questions about leukemia and the latest treatment advances to Dr. Nichols, who plays a critical role in advancing cures through a unique combination of clinical, academic and pharmaceutical experience. See what Dr. Nichols had to say.
1) Myrrah: When I told my friends I had leukemia, they had no idea what it was. How would you best describe leukemia to people who have never heard of it?
Dr. Nichols:“Leukemia is a cancer of the blood and marrow, which is the spongy center inside of the bones where blood cells are made. There are four major types of leukemia; acute myeloid leukemia (AML), chronic myeloid leukemia (CML), acute lymphoblastic leukemia (ALL) and chronic lymphocytic leukemia (CLL). In general, leukemia is characterized by the uncontrolled accumulation of immature blood cells that don’t effectively perform the normal functions of blood cells like carrying oxygen (red blood cells), fighting infection (white blood cells) and forming clots (platelets). However, the natural history of each type, and the therapies used to treat people with each type, are different."
2) Myrrah:Why do so many people associate leukemia with childhood cancer?
Dr. Nichols:“Leukemia can happen at any age. In general leukemia is more common in older adults. That being said, leukemia is the most common cancer in children and teens younger than 20, accounting for almost one out of three childhood cancers. In 2018, nearly 5,000 children, adolescents and young adults younger than 20 years are expected to be diagnosed with leukemia throughout the US. ”
3) Myrrah: Can you tell me something about leukemia that people might be surprised by?
Dr. Nichols: “Anemia, a deficiency of red blood cells, develops in virtually everybody who has leukemia. The lack of normal white blood cells impairs the body’s ability to fight infections."
4) Myrrah:How common is leukemia?
Dr. Nichols: “More than 380,700 people in the United States (US) are living with or in remission from leukemia. Thirty-two percent more males than females are living with leukemia. An estimated 60,300 new cases of leukemia are expected to be diagnosed in the US in 2018.”
5) Myrrah: Can you tell me about any recent leukemia treatments or research advancements?
Dr. Nichols:“2017 was one of the most historic years on record for therapy approvals for blood cancers. In 2017, the FDA approved a revolutionary treatment called CAR (chimeric antigen receptor) T-cell immunotherapy, an exciting new approach that involves genetically reprogramming a patient’s own immune cells to find and attack cancer cells. LLS supported the research leading to this discovery for more than two decades. One CAR-T cell therapy, tisagenlecleucel (Kymriah®), was approved for children and young adults with acute lymphoblastic leukemia (ALL) who have relapsed more than once, marking significant progress for patients up to age 25 who may not have other good treatment options.
After 40 years of little change in standard of care for patients with another deadly blood cancer, acute myeloid leukemia (AML), novel targeted therapies have been emerging at a rapid pace over the past year. Four therapies for AML, all supported with LLS investment, achieved FDA approval in 2017. Researchers are now able to home in on specific genetic drivers of the disease – opening the door to a more personalized approach to treatment. In 2018 alone, the FDA approved two more new treatments for AML and several more are currently under FDA review.
While significant progress has been made, there is more work to be done.”
Check out LLS’s education programs including webcasts, audio replays and program slides covering topics related to leukemia and its subtypes here.
For education programs on childhood cancer, click here.
After three years of chemotherapy, the treatment was not working. Mandy and James had long discussions with Kaitlyn’s doctor who suggested that they enroll Kaitlyn in a clinical trial for a new immunotherapy. The revolutionary treatment, called CAR T-cell immunotherapy, had showed promise for other young children like Kaitlyn. The process was extremely unique and innovative – the doctors would remove Kaitlyn’s T-cells, the soldiers of her immune system, and reengineer them so that they could fight her cancer.
Although survival rates have improved dramatically for children with ALL, children with other types of blood cancers, such as acute myeloid leukemia (AML), still face a difficult prognosis. Further, the lifelong impact of childhood cancer treatment can include severe physical and cognitive impairments, secondary cancers, and a range of ailments that the medical community is only beginning to understand.
When Myrrah was just six years old, she was diagnosed with acute lymphoblastic leukemia (ALL). Her family lived in India at the time, where she received a year of intense treatment. When her blood work showed no signs of cancer, her family celebrated with a vacation to Europe. Then, during a routine checkup they learned that Myrrah’s cancer had returned and the doctors said there was nothing more they could do. Desperate for hope, Myrrah and her father travelled to New York and met with LLS-funded researcher, Dr. Andrew Kung. In 2016, after a year of treatment and a bone marrow transplant from her older brother, her lab work showed no sign of cancer. Today, 12-year-old Myrrah loves being creative and is thriving in school. She continues to give back by participating in various fundraising campaigns through LLS. 