Malia Crushes Cancer

Megan and Glen Jusczyk were both raised in comfortable American homes, sheltered and warm. They worked hard, both playing Division One soccer and earning scholarships. In their marriage, Megan and Glen worked together in their community in Central Florida, focusing on soccer programs for kids. Success wasn’t handed to them but they had opportunities to go out and achieve their dreams. In a matter of time they would come to see that not everybody is so lucky. 

In April of 2011, a worst-case scenario crossed their paths, invading their comfortable family with a torpedo of pain and emotional torture. Their little girl Malia started complaining about her stomach at a mere two and a half years old. As Mama Megan rubbed her belly every night, she looked into her child’s face and knew something was wrong. A trip to the doctor didn’t prove fruitful until an ultrasound was ordered. Megan and Glen stared at the enemy on the screen: A softball-sized tumor warping through Malia’s insides like an unwanted guest, squeezing the life out of this unsuspecting little girl. Malia was swept up from her home and ushered into the world of doctors, needles and tubes. Megan and Glen were waiting anxiously in the hospital when they saw a line of lab coats walking towards them as if in a scene from a movie. The oncologists delivered the bad news: Stage four neuroblastoma.

Neuroblastoma is an extremely rare childhood cancer, affecting 10 children in every million, usually before the age of 5. The five-year survival rate for high-risk cases (Stage Four) of neuroblastoma is less than 40%. 40% of neuroblastoma patients are younger than 1 year when diagnosed, 35 percent are aged 1-2 years, and 25 percent are older than 2 years when diagnosed.*

Megan and Glen wasted no time and snapped right into GO mode. They researched their options, weighing location and treatment opportunities.  Boston Children’s Hospital had been rated #1 in the world for treating neuroblastoma that year. Since they were both originally from Massachusetts, it was a no-brainer to pack and move there immediately. Megan got a job transfer and worked for the insurance while Glen monitored Malia through her treatment. Neuroblastoma treatment costs at least $40,000 out of pocket, even with good insurance. Megan and Glen’s eyes would be opened to other families going through treatment who didn’t have good insurance or worse; were single parents and couldn’t work.

The whirlwind of chemo began, coupled with a stem cell transplant, blood transfusions and immunotherapy. Malia lay quiet on the bed, receiving every tube and uncomfortable surgery with an understanding that this was the way it had to be. She didn’t throw things. She didn’t scream and say “No”, even though no one would blame her if she did. Her once timid demeanor transformed into a brave fight for her life. Malia toughened up, feeling the seriousness of the situation and finding a will within her to crush this disease.

Megan and Glen clung to relentless optimism. They had no other option, and they refused to let their mind wander to the worst possible outcome. Other kids in the same units left this world and Megan and Glen grieved with those families. Funerals were becoming painfully common. Megan watched her daughter suffer, feeling as if her arms were tied behind her back, unable to help in any way. No one could take Malia’s place, and as a parent, that fact alone tortured her. But they clung to hope with every fiber of their being.

Malia was in treatment until after her 4^th birthday, and in July of 2012 was declared “NED” (No Evidence of Disease). They followed up the treatment with a trial for two more years, and she is now a beautiful 8-year-old leading a normal life with her family in Massachusetts. She pitches on a softball team with ferocity, and even bravely jumps off the high-dive at the pool with a big smile on her face.

In 2012, Glen redirected his existing non-profit organization to focus on their brand new vision. After their ordeal, the Jusczyk’s immediate desire was to stretch their arms wide to love on other families. Megan says, “It was not an option for us to do nothing.” The non-profit is called For Kids’ Sake Foundation and its mission is to raise money for neuroblastoma research and help provide for families suffering through experiences with neuroblastoma. Megan admits that running the non-profit foundation is difficult, and each event may not go as planned. But she says, “I am never going to quit and it is not going to fail.” Megan and Glen’s tenacity shouts loud, and it has paid off immensely. Next month they will be writing a check for $100,000 to go towards neuroblastoma research. Even on the hard days, this family has persevered through.

We all should be grateful for what we have. Our families. Our opportunities. Our health. But Megan and Glen didn’t want to just be grateful. They wanted to make a difference. They carry on their backs the weight of many. Their efforts are the salve and balm to the wounded ones.

For more information and to donate; visit http://maliacrushescancer.com/

*http://maliacrushescancer.com/content/nb-info/Factsheet-NB-1.pdf

This article was written for and posted on the website for AaronStrong Foundation to help spread the word and message of overcoming adversity. 

https://www.beaaronstrong.com/grit-spotlight