Lucan Patel doesn’t have a memory of his life before cancer.

The port implanted in his chest at age 3 for blood draws and chemotherapy was something he thought had always been there.

“When we took it out, he kept touching it for a good week,” his mother, Reena Patel, said. “He said, ‘It feels weird,’ because he just remembers it always being in his chest. And now he doesn't feel it.”

Three years ago, Lucan was diagnosed with acute lymphoblastic leukemia, known as ALL. A cancer of the bone marrow and blood system, ALL is the most common type of childhood cancer, accounting for about 75% of all leukemia diagnoses in people under 20.

Reena and her husband, Chirag, are determined to help create special childhood memories for Lucan and his sister Kira, age 4, that they simply couldn’t before. A life that revolved around cancer treatments during the COVID-19 pandemic meant the family could have almost no social interactions. Their home was a makeshift medical center.

But now it’s time for a fresh start. After two and a half years of treatment under the care of the pediatric cancer medical teams at Novant Health Hemby Children’s Hospital and the St. Jude Affiliate Clinic in Charlotte, Lucan and his family are moving ahead.

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An unexpected injury

Lucan wrist

In May 2020, Reena and Chirag, like many parents around the world, were focused on finding ways to entertain their children at home during the pandemic. Summer temperatures had just started to creep up in their hometown of Charlotte, North Carolina, and Lucan and Kira were playing in water in the backyard. A wet slip on the floor sent Lucan to his pediatrician, Dr. Calli Wirsing at Novant Health Arboretum Pediatrics 51. X-rays revealed a break in his wrist that would heal with the help of a wrist guard.

But over the next few days, Lucan’s condition worsened.

“His mood changed,” Reena said. “He was really lethargic, he wasn't eating, he was just lying down ... and he started limping.”

Reena and Chirag brought him back to Wirsing for more x-rays. This time images showed a hairline fracture in his lower leg. And based on its degree of healing, it had happened about a month earlier. Racking her brain, Reena couldn’t think of an accident that could have caused such an injury. As a stay-at-home mom, she was sure she wouldn’t have missed a fall big enough to break a leg. Something was wrong, and Lucan needed more tests to find what it was.

Blood tests revealed that Lucan was clearly fighting an infection. With the very recent emergence of COVID-19, everyone’s thoughts turned to a virus, and the Patel family went home to rest, recover and social distance. But within days, Lucan began to spike dangerously high fevers. They climbed and fell over the weekend, causing misery for Lucan and agony for his parents. Wirsing recommended that Reena and Chirag take Lucan to the emergency room at Hemby Children’s Hospital right away. He was scheduled for a bone marrow biopsy the next Monday.

Dr Joanne McManamon
Dr. Joanne McManaman

“Let's rule out the worst of the worst,” is what Reena thought. Her heart sank when Dr. Joanne McManaman, a pediatric oncologist and hematologist at the St. Jude Affiliate Clinic at Novant Health Hemby Children's Hospital, asked to speak to both her and Chirag with the results. McManaman told Reena and Chirag that Lucan had pre B-cell acute lymphoblastic leukemia.

“And I don't remember anything she said,” Reena said. “It was like a complete blur.”

In it for the long haul

To reduce Lucan’s risk of exposure to COVID-19 during its peak, his care team recommended minimizing his visits to the clinic to once or twice a week instead of daily. A nurse delivered chemotherapy medications and equipment to the Patels’ home. Reena learned how to give him daily intravenous and oral medications – with no prior healthcare experience – and track it all on detailed checklists.

Lucan Patel 1

Then, of course, there were the challenges of keeping a 3-year-old child still enough to be attached to an IV for hours at a time.

“I would put toys around him, and he would just sit there,” Reena said. “It would sometimes be three to four hours. He would just have to sit in one specific spot.”

While many toddlers’ lives are filled with play dates and birthday parties, Lucan’s immunocompromised state made it too dangerous for him and Kira to interact with other children. The family hunkered down at home.

“We were really relying on each other,” Reena said. “I would say that was one of the most difficult parts, was keeping the kids entertained.”

Taking it one day at a time, Reena and Chirag transitioned Lucan between treatments at home and procedures at the St. Jude Affiliate Clinic. McManaman helped Lucan get to know his doctors and nurses, and the caring team built a rapport.

Lucan Patel 4

“Over time, Lucan became used to being in the clinic and seeing our team,” McManaman said. “He became very outgoing, telling us about his toys. My fondest memory is finding we share a love for Pikachu.”

Lucan’s ALL treatments were extensive, multiphased and, overall, lasted more than two and a half years. They included chemotherapy in several different modalities: IV, by mouth, and intrathecal, which is chemo given directly into the spinal fluid through a lumbar puncture. He endured spinal taps, bone marrow examinations and central line surgeries.

“If he had a blood transfusion or an immunoglobin transfusion and then chemo, sometimes we were there for eight to 10 hours, just at the clinic,” Reena said. “The nurses become your best friends. They see your child every day; they're amazing. They become like a second family there.”

Lucan experienced the side effects that Reena referred to as “all the things that you would see on TV that you don't think your child is going to go through.” He lost his hair, he gained weight on steroid medications, then lost it all again when chemotherapy gave him an upset stomach. But through it all, Lucan, his family, McManaman and the rest of Lucan’s medical care team never gave up.

“You just kind of focus on the light at the end of the tunnel and get through it,” Reena said.

The light at the end of the tunnel

Lucan crossed the finish line of his chemotherapy treatments in January.

Lucan Patel ringing the bell Hemby

As of June, he has completed all his medications. To monitor in the foreseeable future, he’ll receive a blood tests every four months, a routine that Reena refers to as “smooth sailing, easy breezy.”

Starting first grade this school year, Lucan is excited for new opportunities to explore his interests: science and STEM-related activities, arts and crafts, problem-solving games like Minecraft, and sports like baseball and soccer.

After those long years of isolation, the family is cherishing opportunities to spend time with friends and to travel. They recently visited Reena’s family in England for a long-awaited reunion and went to Disney World, a trip gifted by the Make-A-Wish Foundation and Butler High School in Matthews, North Carolina.

Invaluable to the Patels is the opportunity to share knowledge, funds and resources with other families who are fighting ALL.

Lucan Patel 8

They’ve hosted community fundraisers at their home, like a marketplace of handmade goods and a family movie night, with all proceeds benefitting St. Jude Children’s Research Hospital in Memphis.

They also started Lucan’s Lions, a nonprofit that aims to support children receiving care from St. Jude. An important priority for the Patel family is meeting other families who have endured an ALL diagnosis and supporting each other.

“We know firsthand how tough it is for other families, so we want to make it a little bit easier,” Reena said.

Lucan is happy to meet and talk with others, kids and adults alike, and be his shining, charismatic and social self, embracing the chance to help other children facing the same diagnosis he conquered.

“He's such a happy spirit,” Reena said. “I think that it feels like the right thing to do, to just make it into something positive. Because he was so positive throughout the whole thing. And it's hard not to get that positivity from him.”

Novant Health Hemby Children’s Hospital: Giving children a better healthcare experience

For kids like Lucan Patel, coming to a hospital can be a scary and stressful experience. That’s why at Hemby Children’s Hospital, child life specialists are part of each child’s oncology care team.

Experts with nationally recognized credentials, child life specialists work with children and their families to help alleviate feelings of fear and anxiety, and to help kids understand medical procedures in an age-appropriate way.

“The child life specialists were fantastic,” Reena Patel said. “They were particularly helpful during Lucan’s blood draws early on, when he had anxiety during port access and needles. They definitely brought the fun and positivity into each clinic and hospital appointment.”

While doctors, nurses and clinicians work to give patients at Hemby Children’s Hospital the best medical care possible, child life specialists use their expertise in counseling and child development to help kids cope with the stressors of being in a medical setting. This team approach creates a holistic healing environment that accounts for children’s needs – physical, mental and emotional.