Fighting Rare Pediatric Cancer at Miami Cancer Institute: Remission is Greatest Gift, Says Mom of 8-Year-Old Maddie    

Miami Cancer InstituteAt 8, Maddison “Maddie” Nuñez clearly recalls the impact of hearing medical news at the age of 4 that would sharply disrupt her young life. She was diagnosed in 2018 with acute lymphocytic leukemia (ALL) — a type of cancer of the blood and bone marrow. At the age of 4, she was treated at Baptist Health Miami Cancer Institute.

“I felt confused, worried and excited to see what the journey was going to bring me,” said Maddie, who is in remission and has been disease-free for one-and-a-half years. 

It started with Maddie having what seemed to be a virus. “She came home from Pre-K 4 and she was sick. She had a slight fever,” explained her mother, Melissa Nuñez. “I had taken her to the doctor, and they checked her for strep, mono (mononucleosis) and for the flu. All came back negative.”

(Watch video: Hear from Maddie, her mom Melissa, and Doured Daghistani, M.D., medical director of Pediatric Oncology at Miami Cancer Institute. Video by Alcyene Almeida Rodrigues.)

A week later, Maddie continued having to go her primary care doctor to have her blood checked. They noticed that her white blood count was high and recommended they go see Doured Daghistani, M.D., medical director of Pediatric Oncology at Miami Cancer Institute.

“She came here, I examined her. I repeated her blood count. I felt like there was something abnormal,” said Dr. Daghistani. Maddie was admitted to the hospital for a procedure called bone marrow aspiration that takes a sample of the liquid part of your bone marrow. “And the second day or the third day confirmed that diagnosis of acute lymphocytic leukemia.”

“As a mom your heart stops, and I wish I could trade places with my daughter because it is the unknown – right?” said an emotional Melissa Nuñez. “You’re given the best prognosis. The doctor said she had a 95 percent chance of living, and that good things would come. But that it would be a huge battle.”

Maddie recalls being scared about the cancer journey, and particularly about not liking to lose her hair. “I had hair, straight hair, and it started to fall out. My dad had to eventually just shave it out. So, I hated that!”

ALL has different subtypes, said Dr. Daghistani. The best subtype is the children who present between 2 and 9 years of age, and have a low white blood cell count. “And these are the children that we tell the family when we see them, that there is an above 90 percent chance of survival and cure. And that is Maddison’s chance,” he reassures.

“It’s extremely welcoming when you come to the Miami Cancer Institute, especially the pediatric area,” said Melissa Nuñez. She remembers visiting the Institute for the first time and having the entire team come to greet them. “The social workers, the nurses, the child life specialist, the nurse practitioner and Dr. Daghistani … everyone just worked so well together to try to make it as smooth as possible, so that Maddison didn’t feel different, even though she knows she was going through different things. They all made sure she was happy.”

Chemotherapy has different phases, explains Dr. Daghistani. “The first phase we call induction is the first month. The second phase we call consolidation, between 6 to 9 months, and the easiest part, around a year and a half, we call it maintenance.” This was the process Maddison went through.

Maddie has stopped chemotherapy for one-and-a-half years. According to Dr. Daghistani, this period is called remission, when there are no signs of the disease in the body.

“Usually, we wait for five years from finishing chemo before we say there will be no relapse 100 percent,” explains the oncologist.

“Maddie is a very pleasant girl; she is a really mature girl, and she is very smart,” reiterates Dr. Daghistani. “I am very happy to tell you that Maddie is free of disease today and doing amazingly well.”

“I am in remission, and I feel way better now that I actually have hair,” said a grateful and happy Maddie. 

Her mother shares the same positivity. “The feeling of over enjoyment of knowing that she no longer has cancer in her body — it’s probably one of the greatest gifts you can ever imagine and pray for. We’re just so grateful, very humbled that we were able to experience this here at Miami Cancer Institute, and we are forever grateful for you curing Maddison.”

And Melissa Nuñez provides this advice: “You have to keep the hope, keep the faith. Life is a gift and just keep being positive.”

About Acute Lymphocytic Leukemia (ALL)

Acute lymphocytic Leukemia is a very rare cancer, according to Dr. Daghistani. “These is a country of 330 million people and every year there is maybe only 5,000 children who got that diagnosis. So, it is not common, but it happens.”

The disease has no unique symptoms. The most common sign of presentation is fever. “Every kid goes to the daycare and comes back with fever. So, you’re not going to think of acute leukemia when you have fever,” says the specialist.  “Now, if fever persists for five days and 10 days, and if you have other symptoms like Maddie had — bruises, pain” then you should seek medical treatment.

The treatment for ALL is chemotherapy. “When I started my training in 1983 … at that time we used specific type of chemotherapy, and the majority still uses it until now. The prognosis or the chances of a cure for children with ALL was around 60 to 70 percent. We are now up to above 90 percent,” said Dr. Daghistani.

Miami Cancer Institute is uniquely equipped to treat pediatric cancers. “We are part of a national group,” adds Dr. Daghistani. “We bring the most up-to-date protocol. We are even doing phase-one trials. These are drugs that have never been tried in pediatrics anywhere, and we are proud that we can offer it to our children here in the community.”