Fight On Makenna Foundation
Helping kids and families facing pediatric cancer.
Makenna’s Story
“In 2018, The Fight On Makenna Foundation was established to honor the memory of our 14 year old daughter Makenna and carry on her strength and fighting spirit to help kids and families facing pediatric cancer.”
Makenna Ann Massi was a 14-year-old young woman who gained her wings on September 27th, 2018, after a 9-month battle fighting Acute Myeloid Leukemia (AML).
Makenna was all about the color purple, scary movies, spicy food, and chocolate cake. She was the biggest and truest fan of the Philadelphia Eagles, her golden doodle Santino was her constant companion. She had a passion for Tae Kwon Do, earning her a first-degree black belt. Makenna believed in the power of laughter and the strength of family and that one day, we would find a cure for childhood cancer.
In the Spring of 2014, Makenna was diagnosed with a Wilm’s tumor (kidney cancer). She fought and beat it after a 9-month treatment plan consisting of chemotherapy and radiation, and in January 2015, she was declared cancer-free.
On December 12, 2017 (as she was approaching the 3-year milestone of being cancer-free), we were contacted by Makenna’s oncologists following an unrelated doctor’s appointment. Blood work had shown abnormalities in her platelet count, and on December 13th, 2017, it was confirmed that Makenna had developed Acute Myeloid Leukemia (AML). Further tests revealed that this AML was a secondary cancer caused by her treatments in 2014.
Makenna embarked on an extended inpatient treatment plan – including the need for a bone marrow transplant – to cure the AML. After two rounds of chemotherapy, Makenna’s AML was in remission, and on March 28th, 2018, Makenna received a bone marrow transplant from her older sister Kayla, who was a perfect match.
Everything was going according to plan. Makenna returned home on May 23rd, 2018, after 100 nights at Children’s Hospital of Philadelphia (CHoP), and was making significant progress through June. The week before the July 4th holiday, Makenna developed complications with her breathing and was put on supplemental oxygen.
The following three months would be marked with numerous admissions to the Intensive Care Unit (ICU) at CHoP. The intensity of her treatment had damaged Makenna’s heart and lungs, and she had developed Pulmonary Hypertension (PH). All the doctor’s attempts to treat the PH were unsuccessful, and Makenna’s oxygen needs to be kept increasing until, eventually, her body had given up. On September 27, 2018, we said goodbye to our angel.
Through both cancer journeys, Makenna did everything that was asked by her doctors and never complained. She never stopped fighting, but most importantly, she never stopped smiling. Makenna was an amazing young woman.
#FightOnMakenna
#Makenna4EverWhat We Do
Why We Do It
Childhood cancer is a devastating reality that shatters the innocence and joy we typically associate with youth. As the leading cause of death among young children in the United States, pediatric cancer demands urgent attention and increased focus on research and treatment.
The battle against cancer is only the beginning for many young survivors. A staggering two out of three survivors face at least one chronic health condition, while some must brace themselves for the possibility of secondary cancers—a daunting prospect after an already exhausting fight.
Despite the critical need for advancements in pediatric cancer research, only a mere 4% of the billions of dollars allocated annually by the government to cancer research is dedicated to this cause. This disproportionately low investment has far-reaching consequences, hindering the development of new, child-specific treatments and the improvement of existing protocols.
Furthermore, clinical trials, which are crucial for treatment advancement, often lag behind for pediatric cases. On average, clinical trials for children begin 6.5 years after those for adults, resulting in prolonged waiting periods for potentially life-saving treatments to become available for young patients.
The current standards of care for children with cancer are also cause for concern. Many of the treatments in use today were approved over three decades ago, with some dating back to before the mid-1980s. While these treatments may be effective, they fail to capitalize on the latest scientific discoveries and innovations, potentially limiting their efficacy and increasing the risk of adverse side effects.
Tragically, children who have undergone chemotherapy face a 15% higher likelihood of suffering from congestive heart failure, highlighting the harsh realities of the most common forms of treatment and emphasizing the urgent need for less invasive options.
In the United States, approximately 1 in 285 children will be diagnosed with cancer before their 20th birthday, equating to around 17,000 children annually. Each day, 43 families receive the life-altering news of their child's cancer diagnosis, marking the beginning of a journey filled with uncertainty and challenges.
The battle does not end with survival; about 95% of childhood cancer survivors will experience significant treatment-related side effects by the age of 45. These effects can manifest as physical complications, emotional struggles, and cognitive issues, impacting their quality of life long after their initial diagnosis.
Behind each statistic lies a child, a family, and a community forever changed by pediatric cancer. These numbers serve as a resounding call to action, demanding better funding, research, and a tailored approach to treating childhood cancer. As these young patients fight their bravest battle, it is our collective responsibility to support them, not just in their pursuit of survival but in their journey to thrive long after their victory over cancer. By prioritizing pediatric cancer research and treatment, we can work towards a future where no child has to face this devastating diagnosis and where those who do have the best possible chance at a bright, healthy future.
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