COURAGE in preventing childhood cancer

In this journey to create change in pediatric oncology, I’ve come to understand what “prevent childhood cancer” looks like for KOASTRONG. It involves much more than a funding transaction supporting research. My interpretation of what is necessary is more of a “Wheel of Prevention of Childhood Cancer” requiring many different spokes & spectrums, representing the medical, health & research specialties. The wheel can only move in the direction of prevention of childhood cancer when each specialty is focused on forward progress in this area. Genomics, epidemiology, obstetrics, pediatrics, neonatology, virology, genetic counseling, cancer geneticists, family planning, public health and health policy must work together, much like gears do, to gain knowledge, and to also package and share that information for public benefit.

Primary prevention of childhood cancer is KOASTRONG’s mission.

What are the possibilities!?

1. Identify more genes that cause the cancers in children and use this information to benefit children and families; develop screenings to be administered at birth, age 5.

2. Screen newborns for the markers that are related to the cancers in children; advocate for all states to include childhood cancers in existing newborn screenings.

3. Screen healthy growing children.

4. Include blood draws in well visits on healthy children.

5. Vaccinate against the viruses that cause childhood cancers.

6. Create risk assessments of genetic predisposition and environmental exposures for childhood cancers and a protocol to increase surveillance in children that have risk factors, including more frequent check ups and bloodwork.

7. Involve pediatric oncology in primary prevention of childhood cancer.

8. Genetic testing, genetic counseling and exposure risks readily available in the family planning phase.

9. Identify the environmental exposures that cause childhood cancers.

KOASTRONG will focus foremost efforts on funding research and supporting efforts to include childhood cancer markers in the newborn screenings.

KOASTRONG is determined and will move forward with courage at every step:

To gain knowledge that could be as painful as it is beneficial and informative.

To learn to surf the waves, rather than attempt to stop an inevitable and perpetual motion.

To push forward and in a new direction when everyone else is going in a different direction.

To hit roadblocks, rejection and failure and get back up to find the way.

To challenge the current state of medical prevention which does not begin until a child GETS the cancer diagnosis.

Koa was a protector, always standing up for his friends and loved ones. All children deserve to be protected from childhood cancers. Be a part of an our movement to end childhood cancer! Lets do it for Koa.

Why do healthy children get cancer?

possibility

Fact: The average age for a child to be diagnosed with cancer is 8 years old.

Eight years old? This is an age that is distinctive for a human body in its rate of growth and development. Children's bones are growing, brains developing, hormones are regulating muscle mass & blood glucose, to name a few of the automatic physiologic processes happening in their bodies to keep them healthy, growing and developing. Intuitively, if age eight is the average time of developing cancer, age eight must also be an age of vulnerability of the child's developing systems. A child this age is completely dependent on his parents and health system for healthy development into adulthood. All children deserve the opportunity to lead healthy long lives. All children deserve to be protected from cancer just as they are protected against pneumonia, chicken pox, small pox, whooping cough, HPV, covid, etc.

Cancer is the number one disease a child dies from and yet little is known about the causes. In fact very little clinical data or research existed in the past on childhood cancers. How can we deeply understand the basics of childhood cancers without clinical data and research? Only recently do registries exist that include childhood cancers, which can also differ from adult cancers with the same name. We can read that exposure to pesticides or radiation can cause cancer, but can a healthy 8 year old have already endured excessive or enough exposure to cause cancer? Was it the 3 X-rays he had when he was 5 years old after breaking his foot, then femur? Was it the organic or non organic produce he ate so much of? He was so healthy, so active, so strong, so funny, so smart, so compassionate, so intellectual, so articulate.

Koa

What if we knew, understood and expected the vulnerable phases in child's development and we were able to vaccinate or supplement? Much like when a woman anticipates starting a family she will take pre-natal vitamins knowing that folic acid will help prevent neural tube defects or when I start to feel cold symptoms I take a zinc supplement to help lessen the duration of the cold. We live in a country that has been fortifying our food since the 1920's to prevent nutrition-related illnesses. The US government instituted supplementing foods with vitamins and nutrients to help prevent or lower the risk of rickets or such defects as cleft palate, which are much more common in other countries because of the measures we take in our country. In today's age of high biotech progress, we know so much about so many things and so why don't we know about the number one killer of children? Does it have to reach a higher incidence than 16,000 children a year? Unfortunately, the number of children getting cancer is increasing each year.

Is there a possibility that around age 8, children are no longer eating as much of those fortified foods and may need a blood test to determine their own deficiencies? Is there a common virus school age children get that could be causing leukemia in some children that also have some other deficiency? Do healthy children need periodic bloodwork?

How does a healthy child get cancer?

We don't know why or how because more research money is spent on other aspects of the wide spectrum of cancer as a whole. Deep discovery begins with asking the right questions. Primary prevention of childhood cancer is only a possibility if we make it one. This is KOASTRONG's goal.

Lisa Pagán, Koa's mom

KOASTRONG

"I dwell in possibility" - Emily Dickinson