Hasbro Children's Hospital Radiothon

The 2019 Hasbro Children's Hospital Radiothon

Patient Stories

Hasbro Children's Hospital Champion ChildJuliet Provost Honored as 2019 Champion Child

Surrounded by family, friends, and the hospital staff that cared for her during the most difficult time of her life, 11-year-old Juliet Provost was named the local Children’s Miracle Network Hospitals Champion Child by Hasbro Children’s Hospital on Feb. 27.

(Right) Juliet Provost shares a moment with her pediatric cardiologist, Dr. James Ziegler.

During the special event in the hospital’s lower lobby – which included Juliet’s favorite treats of chocolate cake and oatmeal cookies – Margaret M. Van Bree, MHA, DrPH, president of Rhode Island Hospital and Hasbro Children’s Hospital, presented the girl with a commemorative medal.

Children's Miracle Network“Days like this are the best part of my job – celebrating the determined spirit of a young person who doesn’t let anything slow her down,” said Dr. Van Bree. “I am so grateful to Juliet and her family for sharing their story and for being ambassadors of our hospital’s lifesaving work.”

While vacationing and visiting family in Italy in spring 2015, Juliet experienced chest pains initially thought to be indigestion from eating too many new foods. But by the final day of the trip, Juliet had become tired to the point of struggling to walk, dropping things and tripping easily.

Once home, Juliet’s parents took her to the emergency department at Hasbro Children’s, where she was diagnosed with acute rheumatic fever (ARF). The condition, which is caused by undiagnosed strep throat, is dangerous to the heart and considered rare in the United States, with fewer than 20,000 cases annually.

Complicating Juliet’s condition was the presence of Sydenham’s chorea, an auto-immune reaction to strep throat that attacks the part of the brain that controls fine and gross motor skills.

Juliet was hospitalized and put on strict bed rest; her heart was enlarged and the mitral and aortic valves were damaged, causing blood to leak backwards. Fortunately, she was treated without surgery and able to return home one week later. Today, Juliet’s prognosis is great. The valves in her heart are almost fully healed and she takes penicillin twice a day – and will for life – to protect her from getting strep throat again. In 2018, she ran her first 5K.

“I’m so happy to be able to represent Hasbro Children’s Hospital in this way after all they’ve done for me,” said Juliet as she smiled from ear-to-ear. “I don’t even remember any of the tough parts of being in the hospital because there were so many good things – I don’t think I could ever thank my care team enough.”

Added Heather Provost, Juliet’s mom, “2015 was the most difficult time in our lives, but knowing this amazing hospital was just fifteen minutes from our house made such an incredible difference for our family. Hasbro Children’s allowed for us to take something very scary and turn it into something positive.”

As the hospital’s 2019 Children’s Miracle Network Hospitals Champion Child, Juliet will spend the year as a pediatric ambassador, highlighting the work of Hasbro Children’s and the importance of donated funds for research and treatment.

Hasbro Children's Hospital Champion Child

Juliet Provost and Margaret M. Van Bree, MHA, DrPH, president of Rhode Island Hospital and Hasbro Children’s Hospital, show their excitement after the 11-year-old is presented with a commemorative medal.

Hasbro Children's Hospital Champion Child

Hasbro Children’s Champions from previous years were on hand to show their support of Juliet on her special day. From left: Margaret M. Van Bree, MHA, DrPH, president of Rhode Island Hospital and Hasbro Children’s Hospital; Antonio “Tony” Torres; Juliet Provost; Paige Alston; Kyrie White; and Evan Huddon.

Hasbro Children's Hospital Champion Child

The Provost family celebrates Juliet being named Hasbro Children’s 2019 Champion Child. From left: Tim Hawes, Juliet’s grandfather; parents Brian and Heather Provost; Juliet; and brother, Griffin, 7 (front).

 

 

Meet Winston. A superhero who will melt your heart.

WinstonLast November, four-day-old Winston Reggio of Newport, RI, was being examined by his doctor and something about the newborn raised concern. “Our pediatrician noticed a small lesion in his mouth and had it tested,” recalls Anderson Reggio, Winston’s dad. “It came back positive for the HSV-1 virus.”

A common virus in the US, 50-80 percent of teens and adults have the virus in them and most don’t even know it. But for a newborn baby like Winston, the virus can have very serious consequences.

Because Winston’s immune system wasn’t fully developed, his medical team had to make sure the virus remained contained or the baby might face neurological damage, developmental disabilities, and possibly even death. That’s why getting him immediately hospitalized was critical.

Winston’s doctor, Jennifer Salm, MD, of Aquidneck Pediatrics, worked with Hasbro Children’s Hospital to quickly assemble a care team to provide proper treatment and prevent the virus from spreading. As Anderson recalls, “At just five days old, our son had his first trip over the Newport Bridge, his first trip to Providence, and his first spinal tap all in the same afternoon.”

The waiting was the hardest part for Anderson, and Winston’s mom, Sarah. “We had to first ascertain whether the virus had spread to his bloodstream and spinal fluid,” Anderson explains. “We lived at Hasbro for four days without knowing for sure which side of the fence we were on.”

Luckily, the quick action by the team at Hasbro Children’s kept the virus from spreading. Still, the Reggios had to “live” at the hospital for 10 more days after hearing the good news while Winston received thrice-daily IV treatments to prevent any lasting impact from the virus.

“Not only did they save Winston’s life, but Hasbro Children’s Hospital made our whole family feel cared for,” Anderson says. “Every one of the nurses, doctors, and specialists we saw treated us with such great patience and respect.”

Wanting to pay forward the gift of good health they received for their child, the Reggios decided to hold a fundraiser to benefit Hasbro Children’s.

Anderson pledged to donate $1 for every pushup he completed at Winston’s bedside during his stay, with the goal of 100 pushups per treatment, totaling 300 per day. To show their support, friends and family pledged various amounts too. Together, they raised an amazing $18,000, which was donated to Child Life Services at Hasbro Children’s Hospital.

Now four months old, Winston has a clean bill of health and is happily spending time with his big brother Thilo, who is 2 years old.

“We are so grateful for the quick action of our pediatrician and everyone who cared for Winston at Hasbro Children’s,” Anderson says, reflecting on the experience. “We are very, very fortunate to have Winston with us now rolling along at 100 percent.”

 

Meet Hailey. A miracle child with the will to live.

Radiothon 2019 Hailey“Hearing the words ‘Your child has cancer’ was the moment all the good in my life broke down.”

That’s how Brian Fish of Portsmouth, RI, describes what it felt like on August 12, 2017, when he learned that his 5-year-old daughter, Hailey, had been diagnosed with acute lymphoblastic leukemia, a cancer of the lymphoid line of blood cells that progresses rapidly and is often fatal within weeks or months if left untreated.

He also recalls thinking at the time, “There is nothing I can do to make this better and that killed me inside.” Fortunately, there was something the staff at Hasbro Children’s Hospital could do—and they did it quickly, starting Hailey immediately on an intensive protocol of targeted drugs and chemotherapy.

Over the first 24 to 48 hours, Brian and Hailey’s mom, Jessica Kirtlink, got a thorough education about their daughter’s diagnosis. They also really connected with Hailey’s doctors, nurses, social workers, and the child life services team, too. “A few days in, we got to know the support staff, the people serving food in the cafeteria, and the people cleaning the hospital room—which has now become our home away from home,” Brian adds. “We met so many people who were all so kind, compassionate, and caring.” And funny, too.

Brian says the staff at Hasbro Children’s participated in disco ball dance parties, silly string fights, water guns, and playing cards or board games. They even put on a special “poop” emoji hat . . . anything to help get a smile, laugh or giggle out of Hailey days she wasn’t feeling well.

“A positive atmosphere and mindset don’t cure cancer,” he acknowledges, “but it sure helped make the day-to-day of receiving treatment much easier for Hailey. The lengths her care team would go to ensure more good days than bad was amazing.”

Radiothon 2019 Hailey

After months of treatment Hailey entered the maintenance phase in June of 2018. This involves a regimen of 21-day cycles, which doctors are hoping will be completed in September or October of this year. Regular bloodwork will be maintained throughout her life to make sure she remains cancer free.

Thankfully, Hailey, now 7, is doing extremely well today. According to her dad, that means she can finally go back to doing “kid” things again like attend summer camp, join the Girl Scouts, and play with her brother Owen, 11, and sister Leah, 9, on a regular basis. She also recently started her swim lessons again (and is loving them!) and is looking forward to starting karate and gymnastics.

For all of this and more, the family is beyond grateful.

“The journey is long, exhausting, and filled with an endless number of peaks and valleys emotionally,” Brian says. “But each step along that journey, the people at Hasbro Children’s and the Tomorrow Fund Clinic are there to help you through. They are much more than doctors, nurses, and support staff. They are a shoulder to lean or cry on, friends, and extensions of our family that we are so very blessed to have been able to meet.”

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