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.
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 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 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.
Myeloma Survivor, Sharon Clark Talks to Dr. Nichols about the Latest in Myeloma 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, survivors have the chance to ask LLS’s chief medical officer, Gwen Nichols,M.D., about the latest treatment and research advances for the three main types of blood cancers: leukemia, lymphoma and myeloma.
Featured Myeloma Survivor: Sharon
Sharon Clark was diagnosed with multiple myeloma in 2015. Her treatment included multiple courses of oral anti-cancer medication, countless injections, infusions and hospitalizations, a stem cell transplant and two spinal surgeries to repair cracked bones caused by the myeloma. Sharon continues to be treated with oral anti-cancer therapy called Revlimid to keep her cancer in remission. She recently shared her story at a U.S. Department of Health and Human Services in efforts to raise awareness about the high cost of care and need for access to cutting-edge treatment.
Recently, Sharon had the chance to ask questions about myeloma 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) Sharon:A lot of people have never heard of myeloma. Can you explain what this disease is?
Dr. Nichols: “Myeloma is a cancer of the plasma cells (a type of white blood cell). Plasma cells are found primarily in the bone marrow. Myeloma is an abnormal, malignant proliferation of a clone of plasma cells. Many people with myeloma have disease involving multiple sites at the time of diagnosis. Some individuals have myeloma that progresses very slowly (sometimes referred to as “smoldering” or “indolent” myeloma). The median age at diagnosis is 69 years; myeloma is seldom diagnosed in people younger than 40 years. Because of the similarity in names, many people confuse myeloma with melanoma (a cancer affecting the skin).
2) Sharon: How does myeloma develop?
Dr. Nichols: “Myeloma develops when a plasma cell is changed (mutated). Plasma cells are made from B lymphocytes (B cells), a type of white blood cell that is found in the bone marrow. Healthy plasma cells are part of the immune system and make proteins called “antibodies,” which help fight infection. The malignant plasma cell forms a clone that makes only one kind of protein meaning lower amounts of normal infection fighting antibodies for many patients. The abnormal myeloma protein can be measured in the blood of most patients with myeloma. Having an abnormal protein clone or “spike” is one way that myeloma may be diagnosed.
3) Sharon:Can you tell me about the latest in myeloma research or treatment advancements?
Dr. Nichols:“Remarkable advances have been achieved over the past decade in treating myeloma. While a cure has not yet been achieved, survival rates have been dramatically extended with the median five-year survival rate improved from 34.6 percent in 2000 to 52.4 percent in 2015, and currently may be even higher, thanks to a multitude of new therapies. With so many new agents to work with, the next phase for physicians who treat patients with multiple myeloma is to optimize dosing and combinations. CAR-T is now being tested in myeloma, targeting a protein on the surface of the cancer cells called BCMA. The data to date are encouraging for patients who have failed multiple therapies, showing in a small trial that more than 95% of the 22 patients in the study responded; 50% had a complete response, meaning no cancer cells could be detected. While it’s not yet clear if any cures are being achieved, the results are promising.”
4) Sharon: I’ve heard that blacks have more than twice the age-adjusted incident rate of myeloma than whites. Can you elaborate?
Dr. Nichols:“That’s correct. From 2010 to 2014, myeloma was the ninth most commonly diagnosed cancer among black males and black females. The median age at diagnosis is 66 years for blacks and 70 years for whites. Black males have a higher age-adjusted myeloma incidence rate than males or females of any other race or ethnicity. The highest incidence rates are found in black males who are ages 80 to 84 (108.8 per 100,000 population). We are so appreciative of your advocacy work and for getting the word out about myeloma to this higher-risk population. LLS is dedicated to improving access to the best therapies and quality of life among African Americans with myeloma, learn more here.”
5) Sharon:I know an early diagnosis is critical. Are there any signs or symptoms to watch out for?
Dr. Nichols:“Patients may have no symptoms or complain of fatigue due to the anemia associated with myeloma. Patients or their health care providers may be alerted to the possibility of myeloma by an elevated protein level in the blood. One important symptom of myeloma to know about is bone pain from the effects that myeloma cells are having on the marrow. Fractures may occur as a result of the weakened bones. While not specific to myeloma, unexplained or persistent bone pain should be evaluated by your HCP. Anemia, recurrent infections, or numbness or pain in the hands and/or feet (caused by a condition called “peripheral neuropathy”) can also be signs of the disease.”
Check out LLS’s education programs including webcasts, audio replays and program slides covering topics related to myeloma and its subtypes here.