“Noah Strength” Helps Local Mom Prepare to Tout All Children’s Hospital to D.C. Lawmakers

Cherish Nero sits at a cafeteria table inside All Children’s Hospital, smiling at 7-year-old son Noah as he immerses himself in a Disney Junior video lighting up his iPad. She has been talking about the long, difficult road her little boy has traveled since the day he was born – a path that has been filled with just as many challenging turns for Cherish and husband Bill.

But whenever the young couple from Hudson, Florida feels the weight of their worries, they simply look at the second of their three children – Noah – and everything seems okay.

They know that the world-class care he receives at All Children’s Hospital Johns Hopkins Medicine in St. Petersburg for an array of challenges – including heart failure, cerebral palsy caused by a post-surgical stroke, autism and brittle bones – will keep him on course. In turn, Noah will keep his family going.

“He’s a wonderful boy, amazingly strong,” Cherish says. “We call it Noah Strength. If we have to get through something that’s hard, it’s time to pull up our Noah Strength. Because if he can do it, we can do it. With everything he’s been through, who are we to complain about something?”

Cherish, who projects a warm, upbeat demeanor, punctuated by frequent laughs, has been drawing extra strength from her son recently, preparing to travel with him to Washington, D.C., June 15-16 for Family Advocacy Day. She plans to tell lawmakers what hospitals like All Children’s mean for kids like Noah – and the desperate need for Medicaid funding to make vital, often life-and-death care possible.

Cherish had to leave her teaching job after Noah was born to devote herself fully to his care, leaving only Noah’s dad Bill, also a teacher, insured through work. Noah’s complex care is covered only by Medicaid.

“We rely on Medicaid, and I want lawmakers to see the face of a child whose life depends on the decisions they make,” Cherish says.

“Noah has gone through a lot and is lucky to have such a wonderful family,” adds All Children’s pediatric cardiologist Alfred Asante-Korang, M.D. “He’s done remarkably well, and his mom’s dedication has made a huge difference. He has some hearing and speech impairment, but he understands, and he’s coming along very, very well.”

The day after Noah was born, he began spitting up blood and had trouble breathing. An echocardiogram showed hypoplastic left heart syndrome, a complex birth defect in which the left side of the heart is critically underdeveloped.

The next thing they knew, Noah was aboard an All Children’s Hospital Critical Care Transport ambulance for an hour-long drive to St. Petersburg.

His first open heart surgery came at 3 weeks of age, a second one at six months and a third when he was 2. “He was 18 months old when his time at home finally exceeded his time in the hospital.” Cherish remembers. “It was such a big moment that we gave Noah a party.”

But more challenges lay ahead. The surgeries couldn’t save his heart due its particular anatomical issues. He was 3 when doctors recommended a heart transplant, but Dr. Asante-Korang (or “Dr. A-K”) was concerned that Noah’s developmental delays might prevent him from being considered a good candidate for transplant.

“Dr. A-K became our cheerleader as well as our doctor, urging us to get Noah caught up developmentally,” Cherish recalls. “I taught him sign language and we worked non-stop on standing and walking. He took his first steps when he was 4 and became fluent in sign language.”

Noah was approved for transplant and received his new heart at age 5, with pediatric surgeon James Quintessenza, M.D., performing the 16-hour operation. With a new heart, Noah quickly made developmental strides.

“He started talking, and everything was coming together,” says his mother.

Then Noah developed post-transplant lymphoproliferative disease (PTLD), a cancer-like complication that required two rounds of chemotherapy to bring under control.

In addition to follow-up cardiology care, the Neros are focused on other medical issues: osteoporosis (fragile bones) that requires regular trips to All Children’s for infusions; treatment for autism that was recently diagnosed; and physical, speech and behavioral therapy.

One day, Noah will need a new heart. But for now, he interacts playfully with his two sisters and continues to make progress. He loves to play baseball and basketball, is a big fan of Mickey Mouse and joins his family on 5K runs – being pushed on wheels – to help raise funds and awareness for people with special needs.

“I just know so many people are praying for him,” says Cherish. “He’s a miracle – it’s by the grace of God that he’s here.”

And moving forward, one day at a time, with Noah Strength.

A Home Run of a Visit by Rays’ Souza with a Teen In Need at All Children’s Hospital

It was the morning after rookie standout Steven Souza Jr. of the Tampa Bay Rays blasted a mammoth home run to centerfield, a shot that proved the difference in a 3-2 victory over the arch-rival New York Yankees. But instead of sleeping in, or resting up for another showdown that night against New York, Souza made powerful contact of another kind.

He swung by All Children’s Hospital on his own, following the lead of teammate Chris Archer. The visit wasn’t tied to a sponsorship arrangement or a special event – only his desire to spend a little time with sick kids in need of a boost.

    Steven Souza and Ben Doane during an April visit.
Souza spent an hour walking the halls of the hematology-oncology unit and Cardiovascular Intensive Care Unit, popping into rooms where tired or anxious parents sat beside the beds of a child receiving treatment. And with a natural, easy manner that mirrors his playing style, the 26-year-old Rays newcomer made everyone he spoke with feel a little bit better – even those who had no idea who he was before he showed up with a knock on their door.

But there was one patient in particular, an 18-year-old with leukemia, who couldn’t have been happier to see Souza – and Souza couldn’t have been more pleased to see him.

Ben Doane, a senior at Titusville High School, had met Souza and Archer last month when they made a similar unscheduled visit to All Children’s. The ballplayers hit it off immediately with Ben, a pitcher with college baseball aspirations whose dream was interrupted this year when it was discovered that he needed a bone marrow transplant. They proceeded to invite Ben and his family to a Rays game, and each player gave him a gift to buoy his spirits.

When Souza made his visit to the hospital on Thursday, May 14, he asked how Ben was doing – and promptly learned that Ben’s brother, Chris, was in the process of donating marrow for a transplant scheduled later in the day. Souza, who had no idea the procedure was imminent, immediately asked if he could stop by Ben’s room to share a few words of encouragement before the procedure.

Ben wasn’t feeling well, but instantly perked up at the surprise news that Souza wanted to see him. Donning a gown, mask and gloves, Souza stepped inside the room. It was a short meeting, less than three minutes, but the smile on Ben’s face made it clear how much the unplanned visit meant.  

They made simple small talk about baseball and a restaurant they’d both been to recently. Ben spoke quietly as Souza kept the patter going, engaging the rest of the family as well. Sensing it was time to leave, he asked for the teen’s cell phone and keyed in his phone number.

“Text me and let me know how it goes. I’m with you bro.”

As he headed down the hall to visit more patients, Souza reflected on why he likes visiting with sick children, something he also did last year in Washington, D.C., after a debut with the Nationals.

 “I think we’re so lucky to be able to do what we do,” he says. “Our culture tends to lift up professional athletes.  So using that platform to give a boost to kids in need is the best thing you can do. To see Ben smile today – on a day that probably wasn’t going to be easy for him – means the world to me. And it’s the best thing I could do with my time.” 

All Children’s Teen Thriving After Leukemia Treatments, Counting Days to ACH Homecoming

Alissa VanWanzeele has her focus fixed squarely on the future these days, eager to re-embrace a life filled with possibilities and to part with a recent past of pain and uncertainty.

The St. Petersburg 13-year-old is looking forward to attending her second All Children’s Hospital Homecoming Dance on Oct. 11. But an even bigger date looms in November, when Alissa will undergo her final round of chemotherapy for treatment of acute lymphoblastic leukemia (ALL), which turned her world upside down the week before she was to start middle school in 2012.

Today, Alissa is one of the countless stories of hope and courage during September’s Cancer Awareness Month and another example of the state-of-the-art care and treatment offered by the Johns Hopkins All Children’s Cancer Institute. Her parents, Lemi and David, feel  immense pride over the way she has dealt with the discomfort and disruption in her life, and remain grateful to All Children’s and friends from church and school who have been there each step of the way since Aug. 8, 2012.

That’s when everything changed for Alissa. She had been an active, healthy 11-year-old who loved to read and excelled in her classes at St. Paul’s Catholic School in St. Petersburg.

“The weekend before she was diagnosed, she’d got gotten sick with vomiting, and we were thinking it was just some kind of a virus,” says Lemi. “But then her face started swelling up, which is something we’d never seen before.”

The parents of four children – including Alissa’s older sister, Shaina, and two young brothers, Dale and Isaiah – were perplexed and concerned. “I work in health care as a physical therapist, so I’m around illnesses, but this worried me, because Alissa has allergies and mild asthma, and I didn’t want this to cause her problems with breathing,” Lemi recalls.

A trip to the doctor’s office followed, and the diagnosis was a virus. They were briefly relieved. But the swelling remained and Alissa seemed sicker than ever. “As her mom, something didn’t add up to me, so we decided to take her to the Emergency Center at All Children’s,” Lemi recounts.

She and David, on break as a Pinellas County public school teacher at the time, brought their daughter in on a Tuesday evening. Tests were performed, and a doctor delivered the jolting news: Alissa had leukemia and needed to be admitted to the intensive care unit right away. “Her white blood cell numbers were through the roof – they were amazed she hadn’t had a stroke,” Lemi says.

The shock was softened somewhat when the All Children’s hematology-oncology team told them the type of leukemia their daughter had was one of the most common, with a high cure rate. “We were told if you’re going to get leukemia, this is the best type,” Lemi remembers. “It still hit us hard that night. Alissa didn’t even look that sick, but here we were being transported to the ICU. The good news is we caught it just in time, because her white blood cell count was so high – she was about to have real problems otherwise.”

The family’s strong religious faith helped them weather the storm ahead and not dwell on fear or anxiety. The gravity of the ordeal truly sunk in for Alissa when she became ill from the chemotherapy, and her long black hair fell out. She dealt with that by developing a signature look with an array of colorful scarves. The treatment plan also included radiation, but Alissa persevered. “The first eight months were the roughest,” says her mom. “She was in and out of the hospital.”

Lemi found her own way to handle the situation with the help of Shaina, creating and updating a Facebook page (Prayers and Wishes for Alissa). That served as a helpful and therapeutic way to keep family and friends up to date.

Alissa’s treatment proceeded with good results throughout the coming months, and she kept up with her sixth-grade curriculum through online classes and tutoring from her father. He left his teaching job to devote all his energy to helping his daughter keep up academically, driving her to appointments and help run the family business.

She returned to school at St. Paul’s by December, and has steadily gotten better thanks to her monthly treatments. In the fall of 2013, one of her highlights was attending the inaugural ACH Homecoming Dance, bringing along several friends to share in the memorable evening.

Now, Alissa is already counting the days to the next Homecoming Dance, having picked out a special purple dress from outfits donated to ACH for its Dress Shop event.

“I’m really excited,” she says. “It’s going to be so fun bringing all my friends and taking pictures.”

It wasn’t hard for Lemi to tell how much the event means to her daughter: “When she saw the flier for the event coming up, she would not stop bugging me, ‘Mom, mom, we have to RSVP!’  I think the event is just so wonderful. I saw so many smiles last year – and again when they were picking out dresses.”

Alissa, like her parents, is grateful for all the kindness showered up her during the past two years. “Everyone around me is always supporting me,” she says. “My school was really flexible when I came back, helping me with all my work. And all the doctors and nurses and everybody at All Children’s have taken great care of me. I’m really excited that I’ll be done with my chemo in November, too.”

Adds Lemi: “Everybody has been so great. We’ve had so much support from St. Paul’s – not just the staff and teachers but the families. For months, they would bring us food. Our church at St. Joseph’s is another amazing community that helped us. And we can’t say enough about All Children’s and everything they’ve done for Alissa and our family.”

One more key date awaits Alissa, stemming from a promise her parents made her to mark the end of chemotherapy as a way of boosting her spirits. “I get to pick out a puppy,” she says. But Alissa has already found a way to boost spirits herself.

“There’s a little girl I know who was just diagnosed with the same kind of cancer, and her dad came to talk to me and he said that I inspired them,” she says. “That makes me feel really good.”