On a hot September morning, mom Monica Vermeulen and daughter Ashley smile under the autumn sun as they prepare for a fundraiser, though it was a different story 27 years ago when at just 3-years-old, Ashley was diagnosed with cancer.
“Those words, when you hear it, ‘your child has cancer,’ you hear those words, but it doesn’t register. It doesn’t compute. It doesn’t do anything and you become numb, you just don’t want to hear it you just don’t understand it,” said Monica, founder and CEO of The Ashley Lauren Foundation.
“I was diagnosed with Wilms Tumor, which is primarily a pediatric cancer,” her daughter Ashley said.
Ashley underwent chemotherapy, radiation and surgery.
“When I look down at my stomach and see my scar, I call it my battle wound and that’s kind of my remembrance of what I went through,” said Ashley.
It’s a battle the Wall Township resident won. Mom Monica is also a cancer survivor. During her daughter’s treatments, she realized families needed more support.
“The passion grew so deep inside of me that after we were on the other side of this journey I said I’m going to try to make a difference in the lives of other children battling the same disease,” said Monica.
Monica was so determined to reach as many families as possible, that she went back to college and got a degree in nonprofit management with a focus in childhood cancer. She launched the Ashley Lauren Foundation in 2005 and so far it has served about 600 families. The nonprofit offers financial assistance, material needs, emotional support and many other programs.
“This is not what I pictured when I was having a family,” said Kristen Fike, the mother of a child with cancer.
The Fike family is so grateful for the financial assistance they receive from the nonprofit. It’s something it desperately needs for their 5-year-old daughter, Danicka.
“At two and half, Danicka was diagnosed with stage 4 malignant melanoma,” said Fike.
Kristen says there is no cure for Danicka’s disease.
“Danicka looks great on the outside; the inside of her her own body is essentially killing herself. She doesn’t even know that she has cancer. She thinks this is normal and she thinks every child goes to the doctor often and gets this kind of care. I don’t have the heart to tell her otherwise,” said Kristen.
Kristen thinks that’s what gives her daughter so much strength. They travel throughout the country for treatments. This week they’re flying to Scotland to meet with another doctor. Kristen says her daughter’s treatment costs nearly $5,000 a month.
“She does immunotherapy which is where they take your immune system, build it up and re-inject it back in the body, but the particular kind of immunotherapy she is on is not FDA approved so our insurance doesn’t cover it,” she said.
This is the reason why the Ashley Lauren Foundation board members say offering New Jersey families financial assistance is crucial.
“Everyone thinks of the research, which is very important, and the care they need, but people sometimes forget what the family has to go through while their child is going through that disaster time of their life,” said Thomas Arnone, trustee of The Ashley Lauren Foundation.
“Every child deserves to live the life children are supposed to live,” said Serena DiMaso, trustee of The Ashley Lauren Foundation.
The State Department of Health indicates in New Jersey, childhood cancer accounts for about 465 new cases and about 50 deaths each year. The department says it continues to see statistically significant decreases in childhood cancer mortality rates in New Jersey, declining to about half of what they were decades ago despite increasing incidence rates.
“With new therapies patients are doing better. Overall, survival, for example, of pediatric leukemia is greater than 85 percent. You’re talking about new modalities of therapy,” said Oncologist Dr. Kenneth Nahum.
Twelve-year old Cincere is celebrating with her family.
“She went into remission last month after a battle with Hodgkin’s Lymphoma Stage 4,” said her mother, Jillian Swanby.
Twelve-year old Greysen McDow has been cancer free for three years and her family is overjoyed.
“Everyone told me just keep fighting and don’t give up,” she said.
Greysen says she can take on anything now. As for Ashley, the fitness instructor just got married.
“I always say Ashley being the inspiration, she provides the hope to these families,” said Monica.
Ashley’s proud to serve as a reminder that children can beat cancer and grow to become happy, healthy adults.