Patient Stories Archives - Nemours Blog

Patient Stories

Childhood Cancer Awareness Month: Charlie’s Story (In Mom’s Words)

In February 2023, we noticed a sore develop on Charlie’s side. But being a normal 3-year-old little boy, we shook it off as a stick poke or a bug bite from playing outside. As time progressed, not only did the sore get bigger, but Charlie started falling asleep on the couch and experiencing fevers of 102-103 degrees. We took Charlie to Nemours Children’s Hospital, Florida’s Emergency Room in Orlando where the doctors closely examined him before calling in Dr. Alexander, an infectious disease specialist. Dr. Alexander was very kind and helped us think through different ideas of what this could be. They took a biopsy and sent us home on an antibiotic and instructions to follow up with our pediatrician. A week later, there had been no signs of healing. Charlie’s lymph node in his armpit near the wound had become swollen. After following up with his pediatrician two times […]

Heroic Harry’s Sarcoma Story

Discover Heroic Harry’s Inspirational Sarcoma Journey | A 5-Year-Old’s Courageous Battle Against Adversity and Cancer at Nemours Children’s Hospital.

Lulu’s Cancer Story

In May 2021, the Italiano family was faced with news that would forever alter their lives. Luciana Italiano, affectionately known as “Lulu,” was diagnosed with Stage L2 Neuroblastoma at just three days old. Luciana’s diagnosis came unexpectedly when a tumor was discovered on her neck shortly after birth. “May 19 was a great and exciting day that turned into nightmare,” says, Lulu’s mother, Carey. “It is an intimidating experience when a newborn baby receives a cancer diagnosis,” says Nemours Children’s Health Hematologist/Oncologist, Dr. Andrew Walter. “Instead of simply celebrating the joy of welcoming a new, healthy child into the world, family members must quickly meet with pediatric specialists and consultants to discuss diagnosis and treatment options and undergo a series of test and procedures. The family doesn’t even have the time to go home and rest.” After being transported to Nemours Children’s Hospital, Delaware shortly after Lulu’s birth, the hospital became the […]

Childhood Cancer Awareness Month: Madison’s Story

“Madison has a history with cancer,” says her mother, Erin. She’s received a diagnosis that no family should have to face not just once, but twice. At the age of 2, Madison was diagnosed with bilateral retinoblastoma, a type of eye cancer that affects the retina, the inner layer of the eye. A subtle “glow” in her eye caught her parents’ attention, leading them to see an ophthalmologist at Nemours Children’s Hospital, Delaware. The journey that followed included six months of chemotherapy and the removal of her left eye. During this time, Madison and her family worked closely with oncologist, Dr. Gregory Griffin. Dr. Griffin played a big part in her journey and their family had a great experience with him. Madison also had amazing doctors from Wills Eye Hospital in Philly. Dr Carol Shields and Dr. Sara Lally were integral in her treatment.   Years later, at the age of 12, Madison faced […]

Childhood Cancer Awareness Month: Marjorie’s Story

Born at 27-weeks, weighing 1 pound and 15 ounces, Marjorie spent her first two and half months of life in the NICU. Following discharge, she was seen at Nemours Children’s Health, Jacksonville for hip dysplasia and eye checkups. When she was 7 months old, Marjorie’s parents noticed her belly was very distended. It continued to swell quickly, so her parents brought her to the pediatrician. After an ultrasound confirmed a mass, the family was rushed via ambulance to Wolfson Children’s Hospital where she first met Dr. Gauger. “Following multiple scans and tests, we heard the words you never want to hear, ‘Your child has cancer,’” says Marjorie’s mom, McCall. “Marjorie was diagnosed with neuroblastoma 4S. She spent three weeks in the hospital and was readmitted for more chemotherapy before being discharged on July 11, 2015.” After discharging, Marjorie continued to be followed by her oncology team at Nemours Children’s. “Through […]

Aurelia’s Story (In Mom’s Words)

The day before we were admitted to Nemours Children’s Hospital, Florida, my daughter, Aurelia, had had a bit of a cough, a fever, and was vomiting. I took her to two different urgent cares, and they both told us it was just a virus, and she was fine. That night I slept in the bed with her because I was concerned about her fever.  In the middle of the night, she started having trouble breathing and her lips turned blue. We took her to the emergency room and she was transferred to Nemours Children’s. There, she was diagnosed with septic shock, pneumonia, and heart failure due to strep and human metapneumovirus. She was put on a ventilator but she still wasn’t getting enough oxygen, so she was put on ECMO to see if that would give her heart and lungs time to heal. An ECMO machine is similar to a heart-lung by-pass machine used in […]

An Extraordinary Journey with Down Syndrome: Arlo’s Story

Like many expectant parents, Arlo’s parents couldn’t wait to find out the sex of their baby. When Carlie was 12 weeks pregnant, they opted to get NIPT bloodwork done to find out as soon as possible. When their blood screening came back, Arlo’s parents were surprised to find out that their baby boy had a 98% chance of having Down Syndrome. “Of course, we were shocked,” says Carlie, “But knowing about our baby’s condition only helped solidify the fact that he was so wanted and so loved—extra chromosome and all.” “From the moment we got the phone call with our diagnosis, through the rest of my pregnancy and now, we have been beyond blessed with amazing doctors, nurses, and therapists,” says Carlie. “The Down Syndrome Clinic at Nemours has been a beautiful addition to Arlo’s village. We feel like they are truly there for us, not as just another patient, […]

From Concussion to Clarity: Sammy’s Story

In 2020 and again in 2021, Sammy had two serious falls, both caused by fainting. Each time, Sammy was told she just had a concussion. However, the second time, her symptoms never went away. “I had a horrible headache that never left, the light continued to bother me and I wasn’t able to focus on stuff the way I normally did,” says Sammy. “I felt very limited during this time. I played volleyball and it would affect my ability to play. Being outside under the sun would cause me to get lightheaded and feel pain. I couldn’t touch my head much and I rarely pulled my hair up, unless it was for a game. It was even hard to sleep at night because of all the pressure I felt.” While in an appointment with Dr. Leto Barone for a different condition, he asked Sammy about her concussion. As she explained […]

A Life Worth Admiring: Aila’s Story

When Aila was just 2 years old, her parents started to notice that something was off. Each time Aila tried to walk, she was always holding onto something. She seemed to struggle when she wasn’t gripping her toy stroller. After going to see a local physical therapist, Aila’s family found out that she had SMA. SMA, or spinal muscular atrophy, is a genetic disorder that can affect your muscles, nerve cells, and spinal cord. People with SMA may experience a decline in strength and limited mobility. As Aila grew older, she had to use a wheelchair. She discovered that she could not complete tasks, like basic hygiene actions, on her own and frequently needed assistance. When she was about 7 years old, Aila began seeing doctors at Nemours Children’s Hospital, Florida. Her family was making 6-hour drives for Aila to be treated at Nemours Children’s. After countless hours of research […]

A Foundation for Success: Jillian’s Story (In Her Own Words)

My name is Jillian Franko, and I am 26 years old. I was born with several physical complications including club feet, dislocations of the knees, hips and elbows, and severe cervical kyphosis. As parents, my mom and dad wanted to ensure that I received the best care. They scheduled an appointment for me with an orthopedic specialist, who recommended serial leg casting for my club feet. This procedure meant weekly visits to have my feet repositioned and cast. Not seeing any results from serial leg casting, my mom contacted a local children’s hospital. She made appointments with specialists in genetics, orthopedics, and neurology. Unfortunately, they were unable to determine a diagnosis, and thus, could not provide proper care or treatment plans. Unsatisfied with the outcome of these appointments, my mom contacted the Schuylkill County Society for Crippled Children. She spoke with the organization’s director, who informed her of their free […]

Finally Home and All Together: Brendan’s Story

When Courtney was pregnant with her son Brendan, her physician noticed something was off. During an ultrasound, they discovered that Brendan had an enlarged bowel, which can be a sign of cystic fibrosis. When Brendan was born in November of 2022, he was immediately placed in the NICU. “This was already planned and why we delivered in the Advanced Delivery Unit at Nemours Children’s Hospital,” explains Courtney. “The team was remarkable. Dr. Chou and our nurse, Mo, made a nerve-racking delivery as easy and seamless as possible. It was nothing but a great experience, considering the circumstances.” At only a day and a half old, Brendan had surgery. “During the surgery, they found that a part of the bowel had twisted on itself, causing it to not function properly,” says Courtney. “That day, they removed 30 cm of bowel and started the use of a colostomy bag. Then we had a 6-week healing […]

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