Childhood cancer is the number one cause of death to children in the United States. The majority of children don’t lose their battle because of cancer but because of the treatment.
Brandy de Oliveira is a childhood cancer advocate and as busy as she is, I was honored to get a few moments of her precious time.
TABLET: Brandy, you recently appeared before Clermont City Council to raise awareness of Childhood Cancer Awareness and Cancer Research. Can you share why this issue is so important to you?
Brandy: My son Marcel Lussier age 4 was diagnosed with B-Cell Acute Lymphoblastic Leukemia on April 14, 2017, just 2 months and 10 days after he turned 3. He is the youngest of my 4 children, he has 2 older sisters Anna-Bella (12), Rosa-Lee (8), and his twin brother Thierry. He has been in full active treatment since then with a little over 2 years to go. Currently, he takes chemo every single day orally, he also gets chemo through his port and spinal tap, with over 300 doses just this year.
Tablet: I can’t imagine the stress your son’s illness has placed on the family.
Brandy: The four most frightening words a parent could ever hear is “YOUR CHILD HAS CANCER”. Your life literally stops, flips upside down, and your brain is going a million miles an hour with questions that can never truly be answered and the ones that can don’t bring much comfort. Why? How? Did I do something, not do something? Did I miss something?Will he make it? How will it change him? Questions continue to pile up until you feel like you are going to drown.
It is harder still because I had no explanation to give a 3-year-old to why he was in the hospital. Why he couldn’t play, go swimming, go to school. As difficult to explain to his siblings is why he is in the hospital, why they can’t see him, why mommy is gone, why they can’t be together, is he going to die?
Tablet: How do you deal with the anxiety day after day?
Brandy: You keep going on because you have hope that there is a light at the end of the tunnel. Sometimes I get through 5 minutes at a time and tell myself just get through these 5 minutes and then the next.
TABLET: How are his siblings handling the situation.
Brandy: As a parent, I feel guilty sometimes. I love all my children and think it not fair to them that I have to spend more time with Marcel because he requires more time.
I believe that my other children feel they are not as important as Marcel. I try to balance my time doing, normal family things such as homework, cooking, cleaning, bills, and going to school.
TABLET: Is Marcel’s cancer in remission?
Brandy: The chemo has been doing its job by getting rid of cancer itself but, because he receives adult chemo, he got hit with a lot of side effects such as seizures, nerve damage, PTSD, night terrors, several infections, HSP, and inflammatory response issue, not to mention he lost his hair 4 times, nausea, vomiting, intestinal pain, diarrhea, mucositis, mouth sores, weight loss, moon face, pain in his arms, legs, and back.
I ask myself what will the future hold for Marcel? What future side effects will he have from the treatments he is receiving? Am I going to miss something important happening with one of my other children?
TABLET: You’ve spoken about treatments, can you elaborate?
Brandy: The treatments are very expensive and thankfully Marcel’s insurance covers most of the expenses but some people can’t pay or keep up with the insurance payments and co-pays. Children get adult strength chemo. Marcel receives the same chemos given to adults because there is little funding for research to make treatments that are for children.
There are more than 112 different types of childhood cancers. Funding for cancer childhood cancer research is 3.8% of the total research budget. There has been some progress in Congress. The Star Act was passed and will be effective next year. It will increase the budget from 3.8 to 7%, raising the funding to approximately 30 million dollars towards research. However, when you put it in perspective, breast cancer gets over 6 billion dollars in funding.
SOUTH LAKE TABLET: How can the Community Help?
BRANDY: Our children deserve a fighting chance and the first step to that is raising awareness. If no one knows about childhood cancer, how can more funding be gotten?
My goal is to bring as much awareness to this matter as possible and help to raise funds for more research. I want our community to be aware and help support our children. If we come together, we can make a difference. Maybe one day we can find a cure for this monster we call childhood cancer.
My family is part of the Clermont community and we want to ask the City of Clermont to proclaim the month of September each year as CHILDHOOD CANCER AWARENESS MONTH. Each year, we want the city to light up its downtown in GOLD! We want our community to wear gold ribbons and wear childhood cancer awareness shirts.
None of this can be possible without the support of our community. I love my son dearly and I want him to have the best future possible and all the children like him fighting and surviving.
We need to fight for our children. If we don’t, who will? You never know if your child or grandchild will be one of the 43 diagnosed every day. I was one of those parents, my son was one of those children.
American Childhood Cancer Organization states that 1 in 285 children will be diagnosed with cancer before the age of 20; 1 in 5 children are terminal at diagnosis, and 3 in 5 suffer significantly due to treatment that alters their quality of life. An estimated 16,000 children are diagnosed with cancer every year in the United States, 43 per day, and of those 43 children, 7 will die.
The incidence of childhood cancer is increasing at a greater rate than in any other age group, except those over 65 years of age. An average increase of 0.6% per year since the mid-1970’s resulting in an overall increase of more than 25% over the last 43 years.
In 80% of children, cancer has already spread to other areas of the body by the time it is diagnosed.
The lack of childhood cancer research has an overwhelming impact on our children. Childhood cancers and adult cancers are different, yet adult cancer procedures are downscaled and used on childhood cancers with devastating effects. The lack of childhood cancer research has an overwhelming impact on our children.
Those who survive the first 5 years have an 8 times greater mortality rate due to the increased risk of liver and heart disease and increased risk of reoccurrence of original cancer or of secondary cancer.
Despite these facts, less than 4% of the National Cancer Institute’s budget is dedicated to childhood cancer research. The FDA has approved only 4 cancer treatments for children in over 25 years and more than half of all chemotherapies used for children’s cancer today are over 25 years old; and to help raise awareness of pediatric cancer and its victims and encourage our residents to recognized the impact of pediatric cancer on families within our community and honor the children in our community whose lives have been cut short by cancer.
