Strong Kids | 2018 | Volume 2

UR MEDICINE’S GOLISANO CHILDREN’S HOSPITAL NEWS

2018 VOL. II

Every day, when I walk around our children’s hospital, I am moved by the courage and resilience of the patients and families we serve. The stories of bravery within these walls are endless, and they are what unite us all as members of the Golisano Children’s Hospital family.

In this issue, we’re excited to share some of those inspiring stories with you.

This year’s Miracle Kids — Carter, Iris, Myles, Spencer, and Ariana — are just five examples of what motivates us to strive for excellence and provide the highest quality care.

Each of these children had very different needs. They each needed treatment from multiple pediatric subspecialists. But our talented group of providers — be they physicians, nurses, nurse practitioners, or any member of our professional team of caregivers — were ready. By bringing a wide range of skills and knowledge to the table and working together to provide seamless, comprehensive treatment, Golisano Children’s Hospital allowed these patients to have the best outcomes possible.

Their experiences also showcase how vital our facility is — not only to Rochester, but throughout our region and beyond. These children traveled from as far away as Albion and Stafford to receive specialized and intensive care, and I am proud that our facility is the regional destination for families when they need us.

Reading these children’s stories and seeing their smiling faces, I am reminded, once again, of why we do what we do. I hope you enjoy meeting them as much as I have.

Sincerely,

Patrick Brophy, MD, MHCDS Physician-in-Chief, Golisano Children’s Hospital William H. Eilinger Chair of Pediatrics

Golisano Children’s Hospital Board of Directors Mike Goonan, Chair* Al Chesonis Jeffery Davis John L. DiMarco II Roger B. Friedlander Jay W. Gelb John Halleran James E. Hammer Howard Jacobson Jennifer Johnson Todd Levine Scott Marshall Gary Mauro Raymond Mayewski, M.D.

Kim McCluski* Kathy Parrinello, R.N., Ph.D. Brian Pasley Dante Pennacchia Ann Pettinella Angela Pichichero Jennifer Ralph* Mark Siewert Mike Smith* Steven M. Terrigino* James G. Vazzana Alan Wood Bruce B. Zicari II

Faculty

Ex-Officio

Kate Ackerman, M.D. Susan Bezek, M.S., R.N., P.N.P-B.C. Mitchell Chess, M.D. Richard E. Kreipe, M.D. Karen Powers, M.D.

Kellie Anderson* Patrick Brophy M.D.* Steven I. Goldstein Kelly McCormick-Sullivan Douglas W. Phillips R. Scott Rasmussen* Mark Taubman, M.D.

Honorary Members Michael Amalfi Bradford C. Berk, M.D., Ph.D. Joseph Carbone, D.P.M. David F. Christa Judy Columbus Wanda B. Edgcomb Harvey B. Erdle Timothy D. Fournier Jack Goodrich Deborah Haen Nick Juskiw Elizabeth R. McAnarney, M.D.* Thomas McInerny, M.D. Gail Riggs, Ph.D. Nancy Robbins Jeffery Rubenstein, M.D., M.P.H. *Executive Committee

phone 585-275-2268 email stephanie.sheets@rochester.edu web www.givetokids.urmc.edu/stroll Golisano Children’s Hospital 300 E. River Rd., Box 278996, Rochester, NY 14627 GiveToKids.urmc.edu Watch last year’s event on YouTube! Search: 2017 Stroll for Strong Kids

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Carter Branton From a biological perspective, the nine-month journey from single-celled zygote to fully-formed, living, breathing, crying baby is nothing short of astounding.

And of the many awe-inspiring moments along the way, there is perhaps nothing quite as amazing as the development of the intestine.

It’s a complex system, so it needs to start early — at about 10 weeks' gestation. At this point, the baby’s entire body is barely the size of a grape, and there isn’t enough room in its tiny belly to hold the intestine, which needs space to grow and expand and make its many precise loops and rotations.

So instead, the intestine leaves the baby’s body through a hole in the still-developing abdomen, and ventures out into the womb, where it continues its growth. It expands, folds over itself, twists and turns in just the right way. And then, once the fetus is big enough, the intestine makes its way back through the opening and settles safely into the baby’s belly.

Except for when it doesn’t.

Once in a while, something goes wrong, and the intestine doesn’t get pulled back in to the abdomen.

Everything else continues as normal, but when the infant is born, its intestines are still hanging there, exposed, on the outside of the baby’s stomach.

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It’s called gastroschisis, and it occurs once every few thousand births. And for Carter Branton, the condition — discovered at his 20-week ultrasound — was especially pronounced.

“They told me that I shouldn’t Google it, but how can you not?” said Savannah Branton, Carter’s mother. “It was scary — we were pretty upset.”

Doctors knew that they’d likely need to operate the day he was born. But when he emerged, they realized that his intestine had twisted awkwardly, making his condition worse than most.

“Not only was the intestine outside his body, but blood flow had been cut off to one section that connected to his colon, so that portion needed to be removed,” said Marsha Pulhamus, pediatric nurse practitioner.

Pediatric surgeon Chris Gitzelmann, M.D., performed the emergent procedure, extracting the affected portions of intestine and colon and sealing off both unattached ends — a temporary, but necessary step to ensure that enough of the dead tissue has been removed and there isn’t any additional damage.

Without a connected intestine, Carter wasn’t able to eat normally, so for the next seven weeks, he got his feedings intravenously, while providers in the Neonatal Intensive Care Unit (NICU) kept a close watch on him. Savannah and her husband, Chad, were there for almost every minute, trading shifts and leaning on their own parents, who helped take care of Carter’s older brother, Austin.

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It was a tough stretch, but it was during these early days that Carter’s personality began to develop. Almost immediately, he endeared himself to his care team.

“One of Carter’s claims to fame was that he was one of the happiest babies of all time,” said Jeff Meyers, M.D., Medical Director of the NICU. “Despite everything he was going through, he always seemed to be smiling.”

At seven weeks old, Carter underwent a second surgery. Gitzelmann, satisfied that the remaining portions of his gut were functioning properly, reattached his intestine and bowel to one another.

Given the different sizes of the openings, this was a tricky operation.

“It was like attaching a straw to a fire hose,” said Gitzelmann. “But we were able to use some advanced surgical techniques to be able to safely re-attach the intestines to each other.”

Fortunately, the surgery went well, but Carter was a long way behind in terms of feeding, and struggled to keep down even the smallest amount of milk. A chart tracking his daily intake documents his struggles to make any gains: 26 mLs of milk on Monday, 32 mLs on Tuesday, 45 mLs on Wednesday… then 16 mLs on Thursday.

“It went on for two and a half months,” said Savannah Branton. “We just couldn’t figure out why we could never give him more than 5 mLs per hour.”

Still, despite his lack of progress, Carter kept on smiling.

“Some babies get extra attention because they’re crying a lot, but he was one of those babies that

learned that if he smiled, that worked pretty well, too,” said Pulhamus. “He learned that if he was social and was a flirt, he’d get lots of people coming in to check on him.”

Eventually, a scan showed what doctors had begun to suspect: scar tissue from his surgeries had built up in his intestines. Since it was impeding his digestion, that meant yet another procedure, and Gitzelmann was called upon a third time.

Again, Carter came through the surgery well. He stayed in the NICU for a little while longer, and started to take more milk. Finally, he was cleared to go home, 195 days after the date of his birth.

His journey wasn’t over, as he went home with a feeding pump and gastrostomy tube to ensure he was getting enough nutrients. He also began seeing Megan Gabel, M.D., director of the Pediatric Advanced Nutrition Support team, who helped his family manage his food intake, bringing him, slowly but surely, up to a normal level.

But once he caught up, he never looked back, and today, Carter is a happy and healthy 2-yearold. His digestion isn’t perfect, and he still sees Gabel for check-ups every other month, but to see him today, there’s nothing that suggests what he’s been through.

“They told us that it’s going to be a rough couple of months, but by the time he was 2, we’d look back on this and think it was forever ago,” said Savannah. “It sounds crazy, but that’s really how it feels.”

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Iris Helfner “He’s in room one! Go get him!”

Karl Helfner was jolted out of sleep by the sound of someone shouting. He had been dozing peacefully in the Ronald McDonald House, just a short walk away from where his 5-year-old daughter, Iris, was recovering from heart surgery.

“What room did they say?” he thought sleepily. “I wonder what’s wrong. It can’t be Iris, can it?”

He listened as loud, running footsteps echoed through the hallway toward his room. Fear and panic gripped him as someone began knocking forcefully on his door.

“You need to come downstairs now,” came the shouts from the other side. “Her heart stopped.”

Karl raced to get dressed and ran to the Pediatric Cardiac Intensive Care Unit (PCICU). By the time he arrived, nearly 20 doctors and nurses were in his daughter’s room, trying to restart her heart. He watched through big glass windows as Jill Cholette, M.D., chief of the PCICU, used a defibrillator to shock Iris’s heart four times.

But Iris didn’t respond.

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Iris’s parents often joke that they knew right from the start that their daughter’s journey would be anything but ordinary. Just hours after Iris was born, she was making headlines — because she had arrived at exactly 11:11 a.m. on Nov. 11, 2011.

“All those 11s. We kept saying, what are the odds?” said Karl. “Everybody was telling us that she was going to be a lucky baby.”

But the Helfners’ elation dwindled when a pediatrician placed a stethoscope on Iris’s chest.

The doctor’s worried expression gave it away: something was wrong.

After more tests, Iris was diagnosed with Ebstein’s Anomaly, a rare congenital heart defect.

The valve between her two right heart chambers was not in its proper position, and it had abnormal valve leaflets — flaps of tissue that open and close to allow for blood flow.

Despite her diagnosis, Iris was acting like a normal, healthy newborn, so instead of performing surgery right away, doctors chose to keep a close eye on her heart. Every few months, she returned to the hospital for scans, and for years, she was able to avoid the operating room.

But the faulty valve in Iris’s heart began showing too much wear and tear after Iris reached kindergarten. In late 2016, doctors decided it was time for surgery.

George Alfieris, M.D., performed an eight-hour open-heart operation to replace the valve in Iris's heart and allow it to function normally.

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At first, Iris bounced back from the surgery quickly. Within 24 hours, she was breathing on her own, and she was on track to leave the hospital in about a week.

“She was doing so well that night after the surgery,” said Karl. “So well, that everyone went home, except me.”

A few hours later, her heart stopped.

To keep Iris alive, doctors opened up her chest right in her hospital room. Taking turns, they used their hands to squeeze Iris’s heart and beat it for her — performing what’s called cardiac massage.

Just a few feet away, Karl watched helplessly as he tried desperately to reach his wife, Kaori, who was sleeping at home.

“Once I got a hold of a friend to run to the house and get her, they flew here,” said Karl. “We were both just shaking.”

Alfieris and Cholette kept Iris’s heart beating for more than an hour and a half, until she could be placed on an advanced life support system called extracorporeal membrane oxygenation (ECMO).

The machine pumped Iris’s blood for her, and would hopefully give her heart time to recover.

The extreme panic of the previous hours had lifted a little, but Iris wasn’t out of the woods yet.

Children who are sick enough to need ECMO have a 50 percent chance of survival, and over the next week, Iris faced a fair share of challenges.

First, the steady dose of blood thinners that Iris was on to prevent clotting of the ECMO system led to bleeding complications. She needed multiple transfusions and had to make a return trip to the operating room to control the bleeding.

Then she developed unexplained fevers and underwent countless tests and treatments as doctors tried to keep an infection from taking hold.

Next, a clot developed under Iris’s new valve, rendering two-thirds of it ineffective. She was sent to the catheterization lab for another procedure.

“I got to the point where I craved boredom,” said Karl. “It was just one thing after another, after another. But she refused to give up.”

Iris’s body rebounded after each setback, but how her brain had handled the ordeal of the past weeks — and whether it was functioning at all — remained unknown.

“We were extremely worried about the cognitive delays she might have,” said Cholette. “Whenever cardiac massage is necessary, there is a risk of brain damage. Nothing is the same as the heart beating for itself, and 90 minutes is a very long time.”

The Helfners were constantly asking themselves: Would Iris recognize them? Would she even know her name?

To help give them some answers, doctors allowed Iris to wake up temporarily from the medications that were keeping her asleep so Karl could try communicating with her. He asked her a question, and even though Iris still had a tube down her throat and wasn’t able to speak, she mouthed her response. Immediately, Karl knew she was OK. “I don’t think words can describe how thrilled I was,” said Karl. “Underneath all of the tubes and the IVs, she was still there.”

After nearly two weeks on life support, Iris was able to come off ECMO, and her heart began beating by itself again. Her recovery was slow, and she had to fight past additional obstacles, including a stroke and one last trip to the OR — this time, for the placement of a pacemaker that will help regulate her heart rhythm for the rest of her life.

But day by day, Iris made progress. Soon, she was trading in her feeding tubes and dressing changes for new hairdos and nail polish.

Seventy-two days after her surgery, Iris was finally able to leave the hospital.

“You could tell that it was a celebration for everyone who had cared for her. They had seen her

at her worst, and everything that could have gone wrong, did,” said Karl. “But in the end, she was OK.” Now, just over a year after her hospital stay, Iris is a vivacious first-grader who seems to never stop smiling. The only sign of what she’s been through is a scar down the middle of her chest.

“Her parents stayed so positive through the most extreme, horrible circumstances, and their outlook played a key role in her recovery,” said Cholette. “She is one of the truest miracles I have ever seen.”

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Myles Davis Eyelids drooping, arms limp, Myles Davis looks up at his nurse.

He considers her question for a moment, but then casts his gaze downward and shakes his head.

“Are you sure?” she asks. “This is the last chance to go to the playroom today!”

“Come on, buddy,” says his father, sitting next to his hospital bed. “It’ll be fun. They’ve got all those Legos down there.”

A frown crosses the 7-year-old’s face.

Reluctantly, he pulls himself to the edge of the bed. He braces himself with his left foot, then places the bottom of his right thigh on his prosthetic leg and steadies himself with his crutches.

But it’s not meant to be. After taking a step, Myles winces and turns back. He climbs into his bed again and lays his head on the pillow, turning his back to the door. His father’s pleas to get him to try again go unanswered, and the little boy closes his eyes.

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Chemotherapy is brutal. At best, it saps your strength, leaving you in bed for hours on end.

In Myles’s case, it also came with a heavy dose of nausea. In the early going, the slightest whiff of virtually any smell would lead to vomiting.

“This is actually better than the chemo he had last year,” said Tillman ‘TJ’ Davis, Myles’s father.

“He’s been taking to the medicine better.”

His parents know there’s a light at the end of the tunnel. The conversation that saw him crawl back into his hospital bed came on a day in February, when he had only three rounds of chemotherapy left. They also know that their son has come a long way since two summers ago, when he started to complain about some pain in his right leg.

Myles had just graduated kindergarten and was flourishing — an energetic youngster who loved sports cars, Batman, and Legos, and who radiated happiness.

“It seemed like everything was just falling into place for him,” said Tillman Davis.

But when the pain didn’t subside, and he started to limp, it became obvious that this wasn’t just a bad bruise. Soon, Myles was seeing specialists and getting scans.

The diagnosis was osteosarcoma, a cancerous tumor that often strikes teens and young adults 13

UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL

but sometimes makes its way into the bones of children, as well. In Myles’s case, a growth the size of a golf ball had nestled its way into his fibula.

Cancer. This wasn’t supposed to happen. Not to a five-year-old.

His parents’ thoughts lingered on what their future could bring.

“I can’t plan a funeral for my son. I can’t do those things. What is going to happen?” said Myles’s mother, Michaela. “That was the hardest day of my life.”

Myles’s oncology team at Golisano Children’s Hospital, led by Lauren Bruckner, M.D., and Carol Fries, M.D., started him on chemotherapy right away, hoping to shrink the tumor before surgery. In October 2016, Wakenda Tyler, M.D., then an orthopaedic oncologist at Golisano Children’s Hospital, performed the operation.

Fortunately, his team was pleased with the outcome.

“A big determinant of prognosis is whether the tumor can be fully removed, or if there’s some disease left behind,” said Fries, a second-year pediatric hematology/oncology fellow. “The removal of Myles’s tumor was fully successful, and it had been almost completely destroyed by the chemotherapy at the time of his surgery.”

The incision took a long time to heal, as Myles’s immune system was still being suppressed by the continuing chemotherapy. An infection and a blood clot in his leg slowed his recovery. But soon, he was starting physical therapy and learning to walk on his right leg again.

Last February, he finished chemotherapy. For the next six months, everything seemed normal.

Myles returned to school and resumed his normal activities. That summer, the Make A Wish Foundation helped bring him and his family to Legoland.

But osteosarcoma is a stubborn disease, one of the few cancers that researchers haven’t made much progress on over the past few decades.

Though Myles’s first tumor looked to be almost completely dead when it was removed — evidence that the chemotherapy was working well — his leg pain returned in September.

“He’d been fine. He was jumping all over the place,” said Tillman Davis. “But when he said ‘It’s hurting like before,’ that’s what signaled us.”

Scans revealed a new tumor in the same leg.

Thankfully, there was no sign that the cancer had spread anywhere else in his body. But given the tumor’s location, just below his knee, the operation came with a sad consequence: Myles would have to lose his leg.

“Those decisions are never taken lightly,” said Fries. “It’s a tragedy for a child like Myles to have to go forward without his leg.”

But his parents had weighed all of the options, and knew that this was Myles’s best shot at survival. They sat down with their son and told him what was coming.

Myles understood.

“My leg was making me sick,” he said. “I didn’t want that leg to make me sick any more. So I’m just going to get a new leg.”

In the year since his initial diagnosis, Myles’s surgeon had taken a new position at a hospital in New York City. Wanting the most continuity in his care as possible, his parents brought him there for his surgery. After the procedure, they immediately returned to Rochester so Myles could start another round of chemotherapy. His oncologists hoped that this final round would eradicate any remaining cancer cells that they couldn’t detect via scans.

“We know the chemotherapy was working before, so I think any leftover cells in his body would respond,” said Fries. “We think the vascular damage in his leg may have affected blood flow, and perhaps the chemotherapy couldn’t reach the surgery site. That’s the working hypothesis, since we didn’t find it anywhere else.”

Today, scans show no signs of cancer anywhere in Myles’s body. And aside from his crutches, there are no outward signs of it, either.

On a recent Saturday, Myles bounded through the Golisano Children’s Hospital lobby, easily outpacing a photographer who was trying to take his picture. Clearly adept with his crutches, he flew around the room, ducking around corners and launching himself over the furniture. In the rare instances when he needed to catch his breath, he slowed down and posed for the lens, cracking a huge smile and breaking out into laughter.

His parents know there’s a chance that the cancer could return. But they’re maintaining the same positive attitude that has helped them — and Myles — get this far.

“I just think we have a good team here. That’s why we feel comfortable,” said Tillman Davis.

“We’ve felt informed the whole way, and the doctors and nurses here made us feel like part of the team. So we’re feeling very positive about it.”

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Ariana Grosskopf Sometimes, the little girl with the big smile will talk about it.

She’s awfully chatty, after all. Shrouded in the blissful innocence of youth, she recounts her tale in the same offhand way that she’d tell you about, say, a trip to the toy store.

If it doesn’t come up in conversation, you’d have a tough time guessing what she’s been through. The scars have healed. The language has returned. She seems, in every way, like a normal preschooler.

Except for when she gets in the car with you.

Then, Ariana Grosskopf will look over and remind you to put your seatbelt on. She’ll tell every other passenger the same thing. And finally, she will lead a short prayer, asking God for a safe trip. Only at that moment does the driver have permission to start the engine.

Ariana is 4 years old. She prays because of a moment she can’t remember. A moment that her family will never forget.

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The call came on a Wednesday morning, when Renee Miens was at work. There had been an accident on Route 31 in Spencerport — a truck had rear-ended the vehicle carrying her two daughters, sandwiching it between a third car ahead of them.

She raced to the emergency department at Golisano Children’s Hospital. When she arrived, she learned that her older daughter, 6-year-old Brooklynn, had escaped relatively unscathed. But Ariana, then 3 years old, was in bad shape.

Ariana’s face had taken the brunt of the crash impact. Her eye sockets were broken, and her forehead was fractured — the broken section of skull had been pushed back into her head by an inch.

Her brain was likely damaged.

“They said they weren’t sure she was going to make it,” said Miens.

Doctors knew that they needed to fix her skull fractures, but first, Ariana had to be stable enough for them to operate. Ariana’s team in the Pediatric Intensive Care Unit, led by Susan Martin, M.D., kept close watch around the clock, carefully monitoring the pressure inside her head.

Miens spent the first few days in the Ronald McDonald House, but regularly drove back and forth from their home in Albion, sometimes four times a day.

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She knew she needed to also care for Brooklynn, who was still recovering mentally from the trauma of the crash.

Meanwhile, Ariana’s grandparents kept a vigil at the bedside.

“Her head looked like a balloon,” said Debbie Kasper-Miens, Ariana’s grandmother. “It was just really hard to see her like that.”

It took days for all the swelling to come down to the point that doctors could attempt surgery. But finally, a week after the accident, Clinton Morrison, M.D., Chief of Pediatric Plastic Surgery; and Howard Silberstein, M.D., Chief of Pediatric Neurosurgery; were able to operate.

First, John Faria, M.D., pediatric otolaryngologist, performed a tracheostomy, allowing Ariana to have a clear airway during the procedure. Then, for the next six hours, Morrison and Silberstein worked to rebuild her face.

Piecing her forehead and skull back together, the surgeons used a series of screws and plates to help keep everything in place. As Ariana’s bones heal, the hardware, made from a special type of polymer, will harmlessly dissolve over time, eliminating the need for a second surgery to remove them.

“It’s unusual for a child to have this bad of an injury,” said Morrison. “But she really sailed through things from a surgical perspective. She didn’t have any complications along the way.”

But while surgery went relatively smoothly, it was clear that Ariana’s brain had been affected. She was transferred to a rehabilitation center, where she would spend the next 8 weeks attempting to regain the skills she’d lost — everything from motor skills to basic communication.

“In the beginning it was painful and frustrating.

These were things she could do, things she had, and they had been taken from her,” said KasperMiens. “But there was one day that they capped her trach — we were sitting in the room and she just started crying. It was amazing, because it was her voice. She was vocalizing. We were so happy to hear that she had her voice back.”

Other gains came slowly. But Ariana got stronger every day, and by the time she returned home, she had recovered the vast majority of her function.

“Children are amazingly resilient,” said Silberstein. “Ariana’s brain was still developing, so it was able to rebound from this in a way that an adult’s brain could not. If this had happened to an adult, the outcome could have been very different.”

She’s taken to drawing on the walls whe she’s bored. She doesn’t like being alone. And, of course, there are the conversations that come every time she gets in a car.

“Every kid is going to change as they grow up — that’s how I think about it,” said Miens.

“Ariana’s changes came in an unexpected way, that’s all.”

More recently, Ariana has been spending time with her grandparents in North Carolina. Her grandmother is trained in helping individuals with disabilities reach various milestones, so working with Ariana came naturally.

“Everything she had before, she’s regained,” said Kasper-Miens. “She loves meeting people and talking to everyone. If you take her out with you, you better set aside some time, because she’s going to want to greet everyone she meets.”

Despite all the challenges that accompanied her accident, Ariana is getting ready to go to preschool this fall, right on time. She loves animals, building blocks, and painting, and adores her family, especially her grandparents.

“I never thought she’d come this far,” said Miens. “I’m just so glad she’s here with us.”

While strangers don’t notice anything unusual about Ariana, her mother is aware of some changes. Now 4 years old, Ariana’s short-term memory is spotty.

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Spencer Gernon 19

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Spencer the Brave has been battling his archnemesis: the terrifying brain tumor! It looks like the villain is down for the count, when it suddenly regains strength.

“Time for revenge!” it proclaims with an evil smile, as it doubles in size. The intrepid hero rushes to his support team for help. “Try a port!” his doctors suggest.

Alarmed, the tumor shouts “No!” But it’s too late. The power of chemotherapy squashes the villain. “AHH!” it exclaims, before shrinking and vanishing completely.

“Let’s party!” proclaims our hero, who gathers his family for a celebration at Buffalo Wild Wings.

It’s a scene from a comic book, one that Spencer drew himself. But the story isn’t far from reality.

In real life, the tumor hasn’t disappeared yet, and Spencer is still fighting his mortal enemy — but he’s already victorious in more ways than one.

Spencer began complaining of headaches and nausea a month before his 12th birthday. Then, he became so exhausted that he wasn’t acting like himself at all.

Doctors sent him for an MRI, which revealed a large mass in his brain.

“It was a shock,” said Spencer’s mom, Heather.

“It’s not something you ever think is going to happen.”

Spencer was scheduled for an operation with neurosurgeon Howard Silberstein, M.D., who hoped he would be able to remove the entire tumor. But its location in Spencer’s brain made that too dangerous, so instead, Silberstein took out a small portion of the mass and sent it to the lab for testing.

Those results gave the Gernons their first piece of good news in months. Spencer’s tumor was classified as grade 1, meaning that on a 1 to 4 scale, it was relatively curable and slow-growing.

And because of the tumor’s genetic makeup, his team believed it would respond to a new treatment that he could take at home — sparing him from the side effects of traditional drugs like chemotherapy.

For a while, the treatment worked. Spencer’s first follow-up MRI showed that the tumor had

shrunk by an astounding 50 percent. Three months later, the tumor had stopped shrinking, but it wasn’t getting bigger, either.

“But by his third MRI, his symptoms had returned, and we were worried,” said Heather. “I just had a bad feeling about it.”

Her instinct was right. The tumor was growing, and surgery was still off the table. Spencer’s team, led

by David Korones, M.D., and Carol Fries, M.D., recommended he start chemotherapy and prepare for radiation.

When Spencer heard the news, he was hesitant. He didn’t want to have another surgery, and an operation would be required for doctors to place the port in his chest and allow for chemotherapy treatments.

But, like always, he found a way to get through it — this time, by going home and drawing a comic.

“It’s just the perfect example of how insightful of a kid he is,” said his dad, Chris. “It was a way for him to cope with what was happening to him.”

Once the comic was complete, Spencer returned for his next appointment, and with a smile, agreed to the new treatment plan.

Spencer’s parents were in the midst of researching radiation options when their lives came to a screeching halt on July 4.

“We had a great day, and we were getting ready to go watch fireworks when Spencer began screaming that his head hurt,” said Heather. “Then, he said, ‘Why am I seeing these illusions?’ That’s when we decided to go to the ER.” On the way to the car, Spencer lost control of the right side of his body, and during the ride to the hospital, he became unresponsive. The Gernons called Fries, who prepped the ER team and stayed on the phone with them until they arrived.

“His tumor was bleeding into his brain, causing stroke-like symptoms,” said Fries, a second-year pediatric hematology/oncology fellow.

Spencer went into emergency surgery the next day.

Doctors weren’t sure if he would make it through the operation, and his parents were prepared for the worst.

Thankfully, the surgery went well. Silberstein was able to repair the clot, as well as remove a large portion of the tumor.

But no one could be sure how the event had affected Spencer’s brain.

“We knew that when he woke up, we didn’t know what we were going to find,” said Heather. “But we just wanted him to wake up.”

When Spencer regained consciousness, he couldn’t talk, and because the bleeding had damaged the part of the brain responsible for language, he couldn’t write his thoughts down on paper, either.

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Without the use of the right side of his body, everyday tasks like getting out of bed or going to the bathroom also posed a challenge, and were impossible for Spencer to do independently.

“Those weeks and months were difficult,” said Chris. “But even with his disabilities and the challenges he was facing, we knew that every day was a day we might not have had with him.”

Somehow, Spencer found the courage to push through. Almost instantly, he learned how to use his left hand for everything. Determined to connect with his family, he came up with a new way to communicate — by drawing pictures on whiteboards.

“Spencer refused to let his impairments be a barrier to expressing himself,” said Korones. “He wasn’t going to let anything stand in his way.”

After Spencer’s emergency surgery, doctors determined that his tumor had transformed into a much more aggressive, fast-spreading form of cancer: a grade 4 glioblastoma.

Spencer immediately started a six-week course of radiation, followed by oral chemotherapy and a series of other treatments. Now, he receives therapy through a wearable Optune device, which delivers treatment through electrodes and disrupts the growth of cancer cells.

With all he’s been through, it would be understandable if Spencer chose to focus on the unlucky hand he’s been dealt.

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But Spencer, now 12 years old, has faced every bump in the road with courage — earning himself the nickname “Spencer the Brave.”

“He is just the most amazing, inspiring kid,” said Fries. “He’s charmed his entire care team with his positive energy, resilience, and heartfelt bravery. We all have learned so much from him.”

Over the past 10 months, Spencer has worked diligently to regain some of the skills he lost. He’s now standing up with help from a walker, and he’s able to do many of the tasks that he once needed help with on his own.

Every day, his speech and language improve. He’s working his way up to complete sentences, and the whiteboards he used to rely on have been all but put away.

And he’s learned to enjoy his favorite hobbies in new, different ways. With the help of his brother, Bryce, he now plays video games with a special, one-handed controller.

The archnemesis tumor is still there, but for now, it appears to be stable, and his parents and his care team are constantly researching new, potential treatments. They hope that the therapies he’s on now will shrink the tumor, or at least keep it at bay — and that someday, Spencer will have that party at Buffalo Wild Wings.

“He has a certain magical spirit about him, and he’s never lost that,” said Korones. “If anyone can get through this, it’s him.”

Elizabeth R. “Lissa” Mc Anarney, M.D., Professor and Chair Emerita of the Department of Pediatrics at the University of Rochester Medical Center (URMC), has been named a Distinguished University Professor — the highest title that the university bestows on its faculty.

McAnarney, who served as pediatrician-in-chief at UR Medicine’s Golisano Children’s Hospital from 1993 to 2006, is only the 13th recipient of the title in university’s history, and is the first woman to receive the honor.

“Dr. McAnarney’s contributions to the community, and to pediatric health at large, cannot be overstated,” said Joel Seligman, former president of the University of Rochester.

“She has given all of herself to Rochester, and to our children, for the past 50 years, and I can think of no one more deserving of this honor.”

McAnarney earned her medical degree and an honorary degree, D.Sc. from SUNY Upstate Medical University, where she also completed her internship and residency. She came to the University in 1968 and joined the faculty at the University of Rochester Medical Center one year later; in 1972, she became Chief of the Division of Adolescent Medicine, a position she would hold for the next 22 years.

During this time, she changed the way that health care providers cared for pregnant teens and their babies, working tirelessly to improve outcomes for these patients. The lead editor of the Textbook of Adolescent Medicine along with co-editor Richard E. Kreipe, M.D., McAnarney’s advocacy efforts helped make adolescent medicine into a boardcertified pediatric subspecialty.

“I think that our Rochester community sees Lissa as one of the most influential leaders in our children’s hospital’s history — and, of course, that perception is entirely accurate,” said Mark Taubman, M.D., CEO of URMC and Dean of the School of Medicine and Dentistry. “But nationally, she is also among the most influential individual in adolescent medicine for the last 50 years. That field would not be what it is today without her influence and advocacy.”

In 1993, she took on the dual role of Pediatricianin-Chief of the children’s hospital, and Chair of the Department of Pediatrics, making her the sixth Chair in the department’s history and the first woman to serve in the role. During her 13 year tenure, full-time pediatric faculty doubled in size as did national and state grant support.

During this time, she also envisioned something for Rochester that many others did not: a transformed children’s hospital that would rival the best in the nation. This vision, and her leadership during this time, led to a transformative gift of $14 million from B. Thomas Golisano — then the largest gift from a living donor ever received by the University of Rochester.

Golisano would go on to give an additional $20 million for the new, state-of-the-art Golisano Children’s Hospital tower, which opened in 2015.

At the national level, McAnarney served as president of three major academic pediatric societies, including the American Pediatric Society, from which she received the John Howland Award in 2013, the society’s highest honor.

She was elected fellow of the American Association for the Advancement of Science in 1998 and of the Institute of Medicine (now the National Academy of Medicine) of the National Academy of Sciences in 2000. Locally, she received the Athena Award in 2004.

“I am deeply grateful to have had such remarkable support from the leadership of the University, the medical center, and the Department of Pediatrics to ‘dream dreams’ and to create ideas to improve the health of all children, particularly Rochester’s children over 50 years,” said McAnarney. “The freedom to pursue all aspects of academic pediatrics: patient care, education, and research is a remarkable gift. Additionally, I am very grateful to our patients, their families and to our trainees, faculty, and staff for their contributions to our collective pursuit of optimal health for all children.”

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2018 Miracle Maker Award Recipients

13WHAM has a long history of advocacy for the children’s hospital, led by news anchor and reporter Jennifer Johnson and her husband, Vinnie Esposito. Their daughter, Grace, was born in September 2011 with a congenital diaphragmatic hernia; Grace endured five surgeries before losing her fight in February 2013.

Jennifer and Vinnie led the creation of Grace’s Garden with the full support of the 13WHAM team, as the station committed $350,000 to the outdoor garden as a tribute to “Amazing Grace.” This beautiful gift will be enjoyed by generations of children and families who visit the hospital.

The 13WHAM team also acts as the TV hosts of our annual Radiothon. This past year, the station assigned a different reporter to profile each child and broadcasted the stories in newscasts from morning to night in the week leading up to the event. The station also created a strong online presence for the Radiothon on its web page, enabling supporters to donate online. The result? A 35 percent increase in fundraising over the previous year.

“Our reporters are adept at bringing home the Miracle Kid stories on a human and very personal level,” says News Director Matt Malyn. “A mom or dad watching a Miracle Kid story at home may think of how fortunate they are, and how fortunate the community is to have a facility like Golisano Children’s Hospital to handle these cases, and be inspired to give.”

Every Halloween season, Spirit Halloween stores across the nation conduct in-store fundraising. Then, its charitable foundation, Spirit of Children, generously shares its donations with U.S. children’s hospitals’ Child Life departments, which provide developmental, educational and therapeutic support for children undergoing medical treatment.

Since its inception in 2006, Spirit of Children has raised more than $22 million for 130 hospitals, including $272,000 for the kids at Golisano Children’s Hospital. These donations have been used to purchase iPads, game systems, toys, art supplies and other items used by patients and family members. Spirit of Children also hosts Halloween parties at Golisano Children’s Hospital. It’s a great way to bring Halloween to kids and families who can’t venture out in the community for traditional trick-or-treating.

In 1983, Costco stores around the U.S. began hosting fundraisers during Children’s Miracle Network Month, with proceeds going to children’s hospitals in their regions. Costco’s corporate headquarters make a matching donation, up to a specified percentage of funds raised, in each region where it operates. When Rochester’s Costco store at CityGate opened in 2015, it joined in the parent company’s tradition of advocacy, and began its support of Golisano Children’s Hospital.

The Rochester Costco store and its entire team have been building momentum each year since then for their May fundraiser, working hard to raise awareness among the store’s thousands of members. Costco encourages employees to tour Golisano Children’s Hospital and meet its caregivers, and invites a Miracle Kid to visit the store and meet Costco team members.

The growth in Costco membership in Rochester, employees’ growing awareness of what the hospital does for the community, and the community’s goodwill all came together in 2017, when Costco Rochester doubled its fundraising results over the previous year, raising more than $44,000 in just 4 weeks. Thank you to everyone on the Costco team – compassionate employees as well as generous Costco members – for your support of the Golisano Children’s Hospital.

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Ann Costello thinks back to her first week on the job as Director of the Golisano Foundation 20 years ago, and remembers accompanying her new boss, Tom Golisano, to a meeting at the University of Rochester Medical Center. The topic up for discussion: exploring the possibility of building a new children’s hospital.

What a long way the children’s hospital – and Rochester – have come since then, thanks to the generosity of Tom Golisano and his foundation. And to Ann, who has helped guide projects that have changed the landscape of children’s health in Rochester: There’s the new Golisano Children’s Hospital, opened in 2015; the Golisano Autism Center in Rochester, scheduled to open later this year; and the Golisano Pediatric Behavioral Health & Wellness Center, which will provide outpatient mental health services to children when it opens in 2019.

It’s exciting to see these projects launch, but a great deal of research, thought and planning happens beforehand to ensure their success.

“I see myself as a facilitator,” Ann says. “I am not the decision-maker on projects, but I try to help everyone involved – the University, the community, Tom Golisano and the Golisano Foundation – by providing accurate information, and the right kind of information” to define how the project should take shape, and how the Golisano Foundation can support it.

“I help everything work its way through the process – and it is a process,” Ann says. “These are big undertakings and you have to be careful with the community’s resources. At the end of the day, everyone – the University, Tom Golisano and his foundation, and the community – want it to be the best it can be. I work to make sure it is a win-win-win for everyone.”

Ann emphasizes the importance of engaging the entire community in building for the future. While Tom Golisano provides significant foundational funding for projects like the children’s hospital, broader community support is essential to the projects’ completion and their ongoing success.

“The hospital does a wonderful job helping children survive their health challenges, but the community has a big part to play in terms of their long-term well-being and quality of life,” Ann says. “Medical care is so important, but we all have a part to play in ensuring that children who face medical issues, as well as intellectual and developmental disabilities, can lead full and rewarding lives.”

Having a child with severe, life-changing medical conditions is a journey no parent expects or hopes to take, Kerri Noyes says. But it’s a path she found herself on when her son Jake was born 19 years ago, and she has walked it with courage and conviction ever since. And along the way, Kerri became a valued ambassador for Golisano Children’s Hospital and a reassuring presence for many parents whose children also face complex health issues.

When Jake was born 8 weeks premature, he was diagnosed with Down syndrome and a heart defect known as Tetralogy of Fallot. He spent the first two months of his life in the Golisano Children’s Hospital NICU. In the years since, Jake has had more than 30 procedures, including three surgeries on his heart and two significant GI surgeries. Jake has been hospitalized many times as he’s battled setbacks and complications, including an emergency surgery and septic shock that almost took his life in 2015.

Jake’s family, especially Kerri, have been by his side all the way. “As a mom, you want to fix things,” Kerri says. She couldn’t provide the medical care Jake needed, so she decided to help the hospital that was helping her son.

Kerri joined the Parent Advisory Council when was Jake was 5, and began sharing her family’s story at the annual Radiothon, Telethon, and many other fundraisers and community events over the years. Jake often accompanied Kerri and joined her in speaking to audiences.

Kerri had three goals for her advocacy: to encourage community support for the hospital; to thank the many caregivers and staff who helped Jake throughout his life; and to support the many other parents and children she has met who also rely on Golisano Children’s Hospital for care.

“I feel so fortunate that we have this hospital – and that’s why I tell our story. It’s a way I can give back to the place that has saved Jake’s life so many times.”

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“Full-service hospitals need subspecialists — doctors who have additional years of advanced training within a specific area, like childhood cancer or childhood kidney disease,” said Michelle Bonville, pediatric administrator. “Fellowships are how those subspecialists are trained, and with the government cutting funding to these programs, gifts like these are very important and greatly appreciated. This will go a long way in supporting the training pipeline for pediatric specialists in our region.”

Also being established is the Panzetta Music Therapy Endowed Fund. At Golisano Children’s Hospital, music therapists are integrated into many children’s treatment plans, and help teach things like breathing techniques and Longtime supporter Jim Panzetta has made a large gift to muscle relaxation. Music therapists also provide a welcome Golisano Children’s Hospital in support of two programs distraction for inpatients. that will help our children and families for generations to “A friend of come. the family was The gift, which will support pediatric fellowships at here not too long Golisano Children’s Hospital, as well as the music therapy ago, and the program, follows Panzetta’s previous commitments to name music really the Pediatric Imaging & Procedural Care Unit and the helped to calm Pediatric MRI room. her son,” said “The Panzetta family truly embodies the generosity of Panzetta. “And our community,” said Michael Fahy, URMC Advancement.

I’ve spoken with “Their desire to help children deal with some of the most a handful of challenging days of their lives during their stay at Golisano doctors and Children’s Hospital, and to support programs that can have psychiatrists around me as well, who really an immediate, yet lasting impact for the kids and families embrace music with their own families, and I started to they support, is part of their legacy, and we are thankful realize how excited they were about how it can help beyond words for all they continue to do.” children.”

The Panzetta Family Education & Training Endowed “We really believe in the power of music as a healing Fund will support pediatric fellowships, which help train the tool, and it’s wonderful that people are starting to embrace next generation of pediatric specialists. Golisano Children’s that message,” said Rosie Obi, director of the music therapy Hospital currently has 18 different pediatric fellowship program at Golisano Children’s Hospital. “We are so, so programs, and approximately 45 percent of fellows are grateful for Jim’s support.” eventually hired as full-time faculty members.

We are extremely grateful to our community fundraisers!

Hilton Applefest Auto Show Alexis LoBretto Red Jacket Middle School 8th Grade Family & Consumer Science Calkins Road Middle School Student Council Cycle for Hope 16th Annual GCH Ski Day Smile Bracelets Webster Thomas Boys Basketball Team Lily Finger Ronald McDonald House Livonia Central School - Middle School Lauren’s Legacy 25

UR MEDICINE | GOLISANO CHILDREN’S HOSPITAL

All American Classics Auction Rochester Amerks Star Wars Night Rainbow Classic Mr. & Mrs. Jerry Engel’s 50th Wedding Anniversary Zoey’s Lovely Heart Club Christmas Tree & Wreath Sale Nazareth Music & Dance Dept Charlie Brown Christmas Daughters of Mokanna Lalla Rookh Caldron #68 Anthony Poselovich Foundation Rockin Burger Bar Fall Festival WNY Optics Golf Tournament Mendon Center Elementary School Council Rock Primary School

Upcoming Community Events

Golisano Children’s Hospital Advancement Office

June 2, Stroll for Strong Kids

585.273.5948 | www.givetokids.urmc.edu

The 5K race will begin at 8:30 a.m., followed by the walk at 10:30 a.m. The event will continue until 1 p.m. with family-friendly activities, including over a dozen bounce houses, carnival games, photo booths, and much more! The event is presented by Abbott’s Frozen Custard. For information, to register, create a team, and fundraise for the Stroll for Strong Kids visit: www.givetokids.urmc.edu/stroll.

Scott Rasmussen Sr. Assistant Vice President for Advancement 585.273.5932

Genesee Valley Park, 1000 East River Road

June 9, Team Ali-Gaiter Clambake

Honeoye Falls Fireman’s Training Grounds, 321 Monroe St. From 2 p.m. to 7 p.m., attendees will enjoy clams, pulled pork, hot dogs, salads, desserts, and drinks. There will also be live music, raffles, bounce houses, costume characters, and pony rides. Tickets are available in advance and at the door. For more details, please contact Jackie Klube at 585-704-4124.

July 14, Prince Elite Beach Hockey Classic The Beach Hockey Classic is an annual celebration of the life of 11-year-old Patrick Carr, affectionately known as the “Lil’ Fighter.” The community celebrates Patrick’s life by gathering to compete for a chance to have their names engraved on the Patrick Carr Memorial Sandley Cup while raising awareness and funds for the Golisano Children’s Hospital. For information and to register, visit www.beachhockey.org.

July 16, RBC Golf Tournament Country Club of Rochester (CCR)

The Rochester Business Classic (RBC) is a charity golf event tournament hosted by the Rochester Businessman’s Charitable Organization (RBCO). One of the beneficiaries is Crosby’s Fund, which benefits Golisano Children’s Hospital. For information, please visit www.rbcgolf.com.

Betsy Findlay Director of Advancement, Special Events and Children’s Miracle Network 585.273.5933 Linda Shillabeer Advancement Assistant 585.276.3568 Katie Keating Office Assistant 585.273.5931 Jennifer Paolucci Program Manager, Special Events and Children’s Miracle Network 585.273.5936 Stephanie Sheets Assistant Director of Community Affairs 585.275.2268

July 28, Douglas E. Riggs Memorial Golf Tournament Victor Hills Golf Course

Check in at 9 a.m., shotgun start at 10:30 a.m. Cost of $80 includes golf, cart, welcome packet, snacks before tee off, lunch, and dinner. Dinner only option is $15.

All proceeds will benefit Golisano Children’s Hospital NICU. For information and to RSVP please contact Kevin Riggs, (585)230-0180 or kriggs12@yahoo.com.

Aug. 2, Dairy Queen Miracle Treat Day Rochester area Dairy Queen locations

Miracle Treat Day will be held on Thursday, August 2nd at the three Rochester area Dairy Queen locations. One dollar from every blizzard sold that day will be donated back to Golisano Children’s Hospital. Customers can also donate to the hospital by purchasing a Miracle Balloon at the register beginning June 1st.

Aug. 12, Bill Frisbie Memorial Golf Tournament Trumansburg Golf Course

Public Relations and Communications Sean Dobbin Senior Public Relations Associate 585.273.2840 Jessica O’Leary Public Relations Associate 585.276.4298 Heather Deal Graphic Designer 585.275.7779

Scramble-style tournament will begin at 9 a.m. with a shotgun start. The Bill Frisbie Memorial Golf Tournament will benefit pediatric cancer research at Golisano Children’s Hospital, specifically, the Bright Eyes Fund. For more information, please contact Mark Taber at 607-387-9549.

Aug. 24 & 25, Fairport Music Fest This fun-filled event, located along Fairport’s Liftbridge Lane, is great for the whole family! Enjoy two days of good music and food for a great cause.

Fairport Music Fest has impacted Golisano Children’s Hospital in a number of ways and is committed to supporting the pediatric cardiac surgical room. Visit www.fairportmusicfestival.com for more information.

Find us on social media: facebook.com/GolisanoChildrensHospital

Aug. 27, Golisano Children’s Hospital Golf Classic

twitter.com/urmed_gch

Golfers from across the Finger Lakes region will come together to play for kids at the 22nd annual Golf Classic. For more information, contact Betsy Findlay: bfindlay@admin.rochester.edu or 585-273-5948.

instagram.com/urmed_gch

Monroe Country Club, the Country Club of Rochester, and Oak Hill Country Club’s West Course

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University of Rochester Office of Advancement and Community Affairs 300 East River Road PO Box 278996 Rochester, NY 14627-8996

givetokids.urmc.edu