May 20, 2022 by John Fernandez
From Worrier to Warrior: Boy Bounces Back from Lymphoma with an Assist from ‘Dr. D.’
It was 2014 and seven-year-old Ernesto Jorge (“EJ”) Avino was like most boys his age – active, energetic and fun-loving. But the experience he was about to endure is something no child should ever have to go through. At a time when he should have been going to school, playing video games and hanging out with his pals, EJ would wind up in the hospital, fighting for his life after being diagnosed with a serious form of blood cancer.
(Watch now: EJ Avino, diagnosed with T-cell Lymphoma at 7, talks about how Dr. Daghistani and the team at Miami Cancer Institute are the reason he’s cancer-free today. Video by Dylan Kyle)
EJ’s parents, Ernesto Avino and Kelly Avino, first took him to the emergency room Baptist Children’s Hospital in May of 2014. They were worried because he had had a fever for several days, accompanied by a cough and loss of appetite. Among the tests ordered by doctors in the ER was a PET scan, which revealed a large, cancerous mass in EJ’s chest.
EJ was diagnosed with T-cell Lymphoma, a blood cancer that affects lymphocytes, a type of white blood cell that helps the body defend itself against bacteria and viruses. “I didn’t know what ‘cancer’ means then but my parents did and they were all emotional,” EJ recalls.
Indeed, his parents were stunned by the news. “When you hear the word ‘cancer,’ your mind goes in a million different directions,” Mr. Avino says. “But we were comfortable that EJ’s treatment would be handled by responsible, knowledgeable, professional doctors and nurses.”
EJ was referred to Doured Daghistani, M.D., a longtime pediatric oncologist with Baptist Health. Known affectionately as “Dr. D.” by colleagues and patients alike, he is now medical director of pediatric oncology and hematology at Miami Cancer Institute, which opened in 2017 after EJ had completed his cancer treatment. Dr. Daghistani remembers seeing EJ for the first time at what was then Baptist Children’s Hospital. “He was very sick. The mass was sizeable – it took up half of his chest,” he says.
Side effects and setbacks
When treating cancer patients, oncologists essentially have three weapons at their disposal: surgery, radiation therapy or chemotherapy. “We can cut it out, zap it or poison it,” Dr. Daghistani says. “In EJ’s case, he had a type of lymphoma that responded very well to chemotherapy, so no surgery or radiation was necessary.”
Even so, EJ would have to endure nearly two years of chemotherapy – not to mention the side effects and occasional setbacks that are to be expected along the way. During his first year of treatment, EJ received intravenous (IV) chemotherapy and experienced side effects ranging from nausea and diarrhea to hair loss and fever.
“Most patients – whether adult or child – are going to experience some side effects from chemotherapy, particularly patients who, like EJ, require IV chemotherapy,” Dr. Daghistani says. “But with proper care, these side effects can be managed.” Sometimes, however, more intensive intervention is necessary. Twice that year, EJ’s fever spiked to dangerous levels, requiring trips to the ER and extended stays in the hospital.
“A high fever signals that the body is fighting something serious, and because EJ’s immune system was compromised from his chemotherapy, we needed to take aggressive steps to control his fever and address the underlying cause,” explains Dr. Daghistani. “Fortunately, each time we were able to get things under control and get EJ back home after a week or so.”
A tough pill to swallow
When fighting a serious disease such as cancer, being a compliant patient can literally mean the difference between life and death. Doctors rely on their patients to take an active role in their treatment and expect them to follow orders and take all medications as prescribed. Swallowing pills isn’t a problem for most patients but for some, like EJ, it can be extremely difficult.
“EJ was already anxious when he first came to us, and when he learned he would have to be taking pills as part of his treatment, his anxiety increased a hundred times over,” Dr. Daghistani recalls.
“I was bad at swallowing pills,” EJ admits. “The taste, the texture, the size – I didn’t like any of it.” But, Dr. Daghistani reminded him at the time, “This is cancer we’re fighting, not a cold, and this medicine is going to save your life.” So, even at age seven, EJ understood that his aversion to taking pills was something he would have to overcome.
Fortunately, EJ’s oncology support team included a psychologist, child life specialist, nurse and other professionals who are there to provide cancer patients and their families with the resources they need before, during and after their treatment. They worked with EJ to relieve his anxiety, and taught him techniques that would make it easier for him to take his life-saving medications.
“I practiced a lot and got better at it,” EJ says. Eventually, he realized that pills were easier to swallow when wrapped in one of his favorite sweet treats – a Fruit Roll-Up. This discovery served him well during his treatment and, according to his father, was typical of EJ’s approach to his cancer treatment. “He always looked for the fun or happy part of whatever he was going through,” says Mr. Avino.
The “worrier” becomes the “warrior”
Dr. Daghistani developed a close friendship with his young patient over the course of seven years of treatment and follow-ups. “EJ is such a pleasant person and so easy to talk to, and when he’s happy, he’s very, very happy,” he says. “But he was so anxious about the prospect of chemotherapy and having to take all those pills. I knew it was going to be a challenge for him.”
EJ was able to overcome his anxiety, however, and turned out to be an extremely compliant patient who Dr. Daghistani says did everything he needed to do in order to beat his cancer. Dr. Daghistani was so impressed with EJ’s attitude and determination that he gave him a special ‘super-power’ nickname. “You are no longer ‘EJ The Worrier’,” he told his patient at the time. “You are now ‘EJ The Warrior’ and your mission is to vanquish your cancer.” EJ loved it, and the nickname stuck.
Five years cancer-free
Last summer, EJ and his family came to Miami Cancer Institute to ring the symbolic gong to mark his five-year event-free survival, which Dr. Daghistani says is an important milestone. “It means he is cured of his lymphoma and he will not have a relapse in his lifetime.”
EJ remembers how he felt that day when he rang the bell. “It was an amazing feeling, being able to accomplish the goal of beating my cancer,” he says. His mother, Kelly Avino, says it was one of the most rewarding days of her life as a parent. “Seeing him seven years later – grown from a frail seven-year-old with a life-threatening disease into a handsome young man who’s now cancer-free – I feel blessed and lucky every single day.”
Dr. Daghistani recalls how good it felt to see EJ cancer-free at Miami Cancer Institute five years later, surrounded by family, celebrating his survival. “There were hugs and kisses and tears,” he says. “As physicians, the gratification we get from moments like these is what keeps us going.”
Bouncing back from cancer
Now that he is cured, 14-year-old EJ is enjoying spending time with his family and friends and leading a normal life. “I’m healthy and I don’t have anything to worry about, medically,” he says. “I can focus on school and hang out with my friends again.”
EJ is looking forward to Sunday, March 13, when he will once again take part in the Miami Heat’s “Bounce Back From Cancer” to benefit Miami Cancer Institute. Participants raise funds for every mile they dribble a basketball on a 13.2 mile course from Miami Cancer Institute on Kendall Drive to the Heat’s home at FTX Arena in downtown Miami.
EJ’s father says they first took part in the event in 2019. “The event was cancelled in 2020 because of the pandemic, and last year it went virtual,” Mr. Avino says. “This year, it’s coming back as a live event and we hope to do it as a family.”
A silver lining to every cloud
Looking back on EJ’s cancer journey, EJ’s parents say they can’t imagine him being treated anywhere else. “I knew we were in the best of hands with Dr. D. – he and his team are absolutely amazing,” Mrs. Avino says. “We were very fortunate that EJ had such a wonderful team of professionals caring for him.”
EJ’s mother said it was a challenging time but also a learning experience for both of them. “I learned what a strong son that I have,” Mrs. Avino says. “His cancer journey made me a stronger mother and made him a stronger son.” Ernesto Avino says that he, too, learned how determined EJ can be. “He may receive certain obstacles with hesitation but he finds his way through whatever obstacles are in his path,” Mr. Avino says.
For EJ, who says he always tries to make the best of situations and to put extra effort into everything he does, his relationship with Dr. Daghistani is a silver lining to the cloud of his cancer. “Dr. D is a really caring person,” EJ says. “He’s kind, comforting and trustworthy, and he’s always there for you.”
Doctor and patient – both of whom play tennis – have made plans to meet on the tennis courts soon, they say. But regardless of who wins or loses that match – “Dr. D” or “EJ the Warrior” – they are lifelong friends now and each would say they both have already won by beating EJ’s cancer.