Posted: December 7, 2016
2 Years Old at Diagnosis.
My name is Patricia, and I am Daniela’s mom. Daniela is known to her friends and family as “Nini.” On June 26, 2009, on her second birthday, Nini was diagnosed with Atypical Teratoid Rhabdoid Tumor (ATRT), a rare, aggressive and very malignant type of brain cancer. We were told that Daniela had less than a 10% chance of survival. As if that wasn’t enough, the tumor was inoperable because of its location on her brain stem.
Cancer created an instant crisis for my husband and I, her sisters, and others who love her. To treat her brain cancer and prevent its return, Daniela endured brain surgeries, 60 weeks of aggressive chemotherapy, three months of radiation to her brain, hundreds of MRIs and other imaging scans, multiple visits to the PICU, quarantine from other kids her age (even her own sisters), and countless of blood and lab tests. She has spent five of her seven years of her life in two hospitals – Miami Children’s Hospital in Miami and the Proton Institute in Jacksonville, FL. She most recently spent a week in Miami Children’s Hospital, recovering from surgery, after her MRI showed a benign tumor growing on her neck, likely a result of radiation to treat her cancer.
The brain surgeries, side effects of chemotherapy and radiation have all left Nini with a number of serious and chronic medical issues that she will have to deal with for the rest of her life. She has profound hearing loss, a slow-down in her physical growth, dental implants, problems with memory and attention, poor hand-eye coordination, poor balance, seizures, and other challenges, all resulting from the ATRT clinical trial protocol that saved her life.
It is through Nini’s devastating cancer diagnosis at the tender age of 2 that we truly understood that cancer can also be a life-enhancing experience. Daniela is now attending 3rd grade. She thrives when making new friends, attending church functions, and spending time with her siblings and family. Nini is a happy young girl, eager to learn and quick to laugh and provide free hugs and smiles to all.
This experience also taught us about the needs, realities, and struggles of everything that comprises caring for a child diagnosed with cancer. But thanks to the people we met on this journey, such as the representatives of CureSearch, the care and compassion of friends and families, and the dedication of doctors, nurses and other health professionals, who so lovingly care for our daughter, we receive the emotional support needed and are constantly finding solutions to Nini’s everyday challenges.
CureSearch’s ongoing efforts provide hope to health professionals, children battling cancer and their families that this battle is one we can win. As Mother Theresa said, “I can do things you cannot, you can do things I cannot; BUT together we can do great things.” So, let’s come together as a community and support CureSearch to continue changing the odds of children like Nini.
Today is about surrounding these remarkable children and their families with a message that hope is a powerful medicine and that we will come alongside them to walk through this together.
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