‘There are no words to describe the moment your baby girl asks, “Mommy, what does this cancer want with me?”’
“There are no words to describe the moment your baby girl asks, ‘Mommy, what does this cancer want with me?’ The first four years of Daniela’s life were full of memory-making and milestones, just like those of any other child. But in the fall of 2016, when she was barely 5 years old, everything changed. An ongoing stomachache grew until rounds of MRIs and PET scans finally uncovered a tumor in her hepatic portal vein, which spread to her liver.
“On October 5, 2016, Daniela was diagnosed with a rare form of childhood cancer: rhabdomyosarcoma. It was a word we had never before heard. Doctors gave her two days to live, but she fought like hell for four years.
“After 12 months of grueling chemotherapy, Daniela was finally declared cancer free, and we thought we had beaten the monster threatening our little girl’s life. Three months later, the cancer returned, and far worse than before.
“The next two years were a dizzying procession of hospital stays, chemotherapy, radiation and experimental treatments. Three years from the time she was diagnosed, the doctors declared Daniela cancer free three times. But the disease always came back.
“It was heartbreaking to watch as the poison meant to kill the cancer also took a toll on her little body. Daniela’s intestines became inflamed and painful; she was tired and had difficulty eating. Daniela had gone through nearly every form of treatment options available over the course of four years when doctors told us that there was nothing more that they could do, so the decision was made to change our focus to maintaining a good quality of life for her while she lived with cancer.
“A week before COVID hit on March 2, 2020, Daniela took her last breath in her daddy’s arms. She lost her battle with rhabdomyosarcoma after almost four years of courageous fighting. I have told this story many times, but it never gets any easier. The details are always the same. It’s a story that no child and no family should ever have to endure. In Daniela’s memory, my family and I along with my team are now working toward that end through the nonprofit Daniela Conte Foundation.”
The harsh reality is that the treatments Daniela received – which didn’t work – were developed 40 years ago.
“Daniela had an infectious smile and powerful personality. Even on the most grueling days, she never complained. Through every treatment and every test she had to go through, there was always a light behind those big, brown eyes and a sparkling smile to boot.
“The strength of such a little person could have touched everyone who met her. I can’t tell you how many times Daniela left the hospital and lived life to the fullest the next day. She may have gotten sick in a trash can or two, but she never let the cancer steal her joy.
“She was never going to let the cancer win. Daniela wished for a day where ‘there was no more cancer’ and often spoke about helping other pediatric cancer patients. Before, during and after the diagnosis, Daniela always wanted to help others.
“Today, Daniela’s story continues through the Daniela Conte Foundation. We couldn’t save Daniela, but it is the mission of DCF that her story is a catalyst for change. Through the lives of the children and families we support, Daniela’s legacy lives on.
“The harsh reality is that the treatments Daniela received – which didn’t work – were developed 40 years ago. These are toxic treatments, and the children who do survive suffer long-term effects.
“Private foundations like DCF are the ones supporting the doctors and research that are working on these cancers. Cancer is the number one disease killer of children, and that has to change.
“Even where kids survive, by the time they’re 45, they’re at a high risk for hearing loss, infertility, and a litany of other issues. There’s also a good chance the cancer might come back or that they will get a secondary cancer.”
As parents, we plan for vacations and college, but nobody plans for cancer.
“The Daniela Conte Foundation was formed just three years ago, but we’ve made great strides thanks to an incredibly passionate and talented team. In 2022 alone, we helped 150 families and provided more than $75,000 in financial and memorial assistance.
“Ninety-five cents of every dollar raised by DCF has gone directly to cancer families and research. As parents, we plan for vacations and college, but nobody plans for cancer. Our own family would have been completely lost without the financial support of private foundations, and now I’m proud to give back.
“There hasn’t been one new drug developed for the type of cancer Daniela had in more than a decade. That’s a pillar of the DCF mission: to bring more awareness. I don’t want another family going through this. We’ve seen a lot of pink in October, but we don’t see a lot of gold. Gold is the color we use for September, Pediatric Cancer Awareness Month.
“Before Daniela’s diagnosis, we, like many other families, didn’t even know there was a month or color. We’re working to change that too. Through increased awareness, we can change the narrative of pediatric cancer.
“One of our most meaningful events at DCF is the annual March blood drives held every year in Daniela’s memory. Daniela went through many blood transfusions and platelets because the chemo destroys your good and your bad cells. We had close to 78 blood donors come out this March to donate blood, and that translates to over 200 lives saved. In the last three years we have collected over 225 units of blood, which helped save 675 patient lives.
“This year, DCF will proudly host its third annual Butterfly 5K Run/Walk on Saturday, April 22, at Sunken Meadow Park. Anyone can participate; you don’t have to live on Long Island. We have virtual participants joining us from all over the country.
“We’ll have a fun run, games, prizes, giveaways. It’s one of our biggest events, and the money we raise will continue to help families and fund pediatric cancer research. This year we will also honor children and young adult survivors in the community with special medals. Those who wish to sign up and participate can get more information at 5k.danielacontefoundation.org.”
Interviewed by Tracey Cheek