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 funding an additional $15 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 multisite 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.
Lymphoma survivor, Jessica Melore talks to Dr. Nichols about the Latest in Lymphoma Research and Treatment
Lymphoma survivor, Jessica Melore talks to Dr. Nichols about the Latest in Lymphoma 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 Lymphoma Survivor: Jessica
After noticing a lump on her neck, Jessica Melore was diagnosed with non-Hodgkin lymphoma (NHL) – just two years after surviving a massive heart attack, a heart transplant and a leg amputation at 16 years old. After months of treatment, her cancer was in remission. Then, six years later, another lump turned out to be a different form of NHL. Jessica told herself she'd been through cancer once before and there was no reason she couldn't beat it again. By January 2008 she was back in remission, and finished treatment that May. Through all of this adversity, Jessica graduated with high honors from Princeton University, was the youngest member of LLS's New Jersey Board of Directors, and has been a national ambassador for LLS.
Recently, Jessica had the chance to ask questions about lymphoma 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) Jessica:What makes lymphoma different from other blood cancers?
Dr. Nichols:“Lymphoma” is a general term for many blood cancers that originate in the lymphatic system. Lymphoma results when a lymphocyte (a type of white blood cell) undergoes a malignant change and multiplies out of normal control. Eventually, healthy cells are crowded out and malignant lymphocytes amass in the lymph nodes, liver, spleen and/or other sites in the body.”
2) Jessica: When I was diagnosed with non-Hodgkin lymphoma, I had no clue what that meant. How many types of lymphoma cancers are there?
Dr. Nichols:“There are many different subtypes of lymphoma, most of which are divided into two main types: Hodgkin lymphoma (HL) and non-Hodgkin lymphoma (NHL). About 90 percent of people diagnosed have one of the subtypes of non-Hodgkin lymphoma.”
3) Jessica:I know there aren’t screening tests for blood cancer, but are there any early signs to watch out for?
Dr. Nichols:“A common early sign of HL or NHL is a painless enlargement of one or more lymph nodes. However, enlarged lymph nodes may be the result of inflammation in the body and are not necessarily a sign of cancer. Other HL signs and symptoms may include recurrent high fever, persistent cough and shortness of breath, drenching night sweats of the whole body, itching and weight loss. Other signs and symptoms of NHL may include bone pain, cough, chest pain, abdominal pain, rash, fever, night sweats, enlarged spleen, unexplained fatigue or weight loss. Some individuals may have no symptoms, and a diagnosis of NHL is made as a result of a periodic physical examination and testing. It’s important to note that people on medications which suppress the immune system, to treat other illnesses, or have chronic inflammatory diseases are at increased risk of lymphoma, and should have heightened awareness of these symptoms and signs so they can alert their HCP.”
4)Jessica: How common is lymphoma?
Dr. Nichols: “More than 845,000 people in the United States (US) population are living with or in remission from lymphoma, and over 83,000 people in the US are expected to be diagnosed with lymphoma in 2018. The incidence of HL is consistently and considerably lower than that of NHL.”
5)Jessica:Are there any recent groundbreaking treatments patients or survivors like myself should know about?
Dr. Nichols: ““Our long-term investment in research and clinical trials has resulted in significant breakthroughs leading to higher survival rates and lives saved for patients with lymphoma. In 2017, the FDA approved CAR T-cell immunotherapy, axicabtagene ciloleucel (Yescarta®), for adults with several types of relapsed and refractory large B-cell lymphomas. In May 2018, the FDA granted tisagenlecleucel its second approval, also for patients with several types of large B-cell lymphomas. The FDA also approved another type of immunotherapy for a very rare subset of lymphoma called primary mediastinal large B-cell lymphoma (PMBCL) in June 2018. This immunotherapy, called pembrolizumab (Keytruda®), is known as a checkpoint inhibitor that works by releasing the brakes on the immune system so it can attack cancer cells. Pembrolizumab and another checkpoint inhibitor, nivolumab (Opdivo®), were also both recently approved for Hodgkin lymphoma patients who have relapsed from standard therapy.
With advances in biologic understanding of lymphoma subtypes, we are able to provide more precision therapies, both immunologic and targeted, along with chemotherapy to get better outcomes for patients. These groundbreaking treatments are only possible because of patient participation in clinical trials; increasingly important as we subdivide the lymphoma based on biomarkers of response. LLS provides personalized clinical trial navigation when appropriate. For more information, click here.”
Check out LLS’s education programs including webcasts, audio replays and program slides covering topics related to lymphoma and its subtypes here.