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Gabe’s treatment for a childhood cancer called rhabdomyosarcoma began when he was about to turn 1, and the new Monroe Carell Jr. Children’s Hospital was still being built. From his room in the pediatric hospital-within-Vanderbilt University Hospital, the Sipos family watched as the walls of the new building rose 300 yards to the south on the Medical Center campus.
The hospital, designed by and for families, opened its doors on Feb. 8, 2004, but the dream began 90 years before that.
In 1924 the Junior League of Nashville Home for Crippled Children opened, and in 1970 the Junior League and Vanderbilt combined efforts when Vanderbilt Children’s Hospital became a “hospital within a hospital,” located on three floors within Vanderbilt University Hospital.
Monroe Carell Jr. Children’s Hospital, named for the former CEO of Central Parking, expanded in 2012, with a five-story, 30,000-square-feet expansion for 33 additional acute care, surgical and neonatal intensive care beds. The hospital is now licensed for 271 beds and has 650,000 square feet.
During fiscal year 2013, more than 224,000 patients were seen in Children’s clinics. The hospital’s Emergency Department cared for 54,092 children. There were 14,756 admissions during this period. Patients came from 48 states and the District of Columbia.
In 2013 Children’s Hospital was again named among the top pediatric health care hospitals in U.S. News & World Report magazine’s annual Best Children’s Hospitals rankings. It is the only pediatric hospital in Middle Tennessee providing a comprehensive array of specialty and subspecialty services to receive this honor, achieving national rankings for nine out of 10 of its pediatric specialty programs. Children’s Hospital has been ranked every year by U.S. News since the inception of the publication’s pediatric rankings, now in its seventh year.
Monroe Carell Jr. Children’s Hospital at Vanderbilt opened its doors a decade ago, a nationally ranked beacon of patient- and family-centered care that the children of Nashville and the surrounding area deserve.
Thousands of children and families have passed through the doors of Children’s Hospital since it opened a decade ago, patients referred by the more than 300 community pediatricians in private practice throughout Middle Tennessee and parts of Kentucky who coordinate and refer patients to the physicians and subspecialists at the hospital.Twelve-year-old Gabe Sipos, whose story is told here, is just one of those patients.
What a difference a decade makes.
Gabe Sipos was only 2 in spring 2004 when he first set foot in the brand new Monroe Carell Jr. Children’s Hospital at Vanderbilt.
His experience quickly became a part of the building’s very roots. Articles in publications about the opening of the new Children’s Hospital featured Gabe’s story along with images of his smiling face and round, bald head.
Today, as the hospital celebrates its 10th anniversary, Gabe is a middle-schooler, possibly with a future as a programmer, a testament to the care he received at Children’s Hospital. Typing and swiping on electronic devices almost before he could write, he can now hack the systems for his favorite games on his iPad.
Rhabdomyosarcoma is a cancerous tumor of the muscles that are attached to the bones. It can occur in many places in the body. The most common sites are the structures of the head and neck, the urogenital tract, and the arms or legs.
By April 2004, as the building was dedicated, Gabe was wrapping up treatments and recovering from surgery to remove the cancer behind his jaw and within his right sinus passage. The toddler enjoyed learning to walk and run down the wider, more colorful hallways of the new hospital. But the experience was different for his parents, Rob and Lu. The year was a turning point in multiple ways.
Hope and promise
Rob was a construction engineer who helped finish the inside of the eight-floor facility. He and Lu spoke to news reporters about Gabe’s treatment and Rob’s work to build a hospital that would house the doctors and nurses they hoped could save their son’s life.
“Every time something went up in the construction, I thought about how many lives it would impact, lives like ours,” Rob said.
Lu was always on duty to entertain her rambunctious toddler. She put her artistic flair and British sense of humor to work, sewing some hospital pajamas for a plush duck companion for Gabe.
“Initially I thought it would be a fun joke, doctors would laugh and it would be nice for Gabe; just amusement and laughter,” said Lu.
But with a chemo port and head scarf much like his own, the duck became serious therapy for Gabe. Soon friends in the infusion clinic wanted a duck too. Lu founded a non-profit organization called Gabe’s My Heart to mass-produce “Chemoducks” for children with cancer.
Gabe Sipos and his mom, Lu, make the best of his time at the new Monroe Carell Jr. Children’s Hospital in 2003.
Four-year-old Gabe Sipos, right, and patient Michael Stanley, 4, make dueling faces during a 2005 launch party for “Chemo Duck,” created by Lu Sipos.
The Sipos family found that not every turn in their life story was scary or negative. There was a lot of hope and future promise there too.
Promising future for cancer therapy
A young pediatric oncologist named Richard Ho, M.D., moved his practice into the new Children’s Hospital in 2004. He was determined to use this time of rapid growth in the basic science of cancer therapy to make a difference. His goal was to move the needle of pediatric cancer survival from the 75 percent mark toward 100 percent.
“You think you can do everything as a young researcher; you feel you will find many new therapies to cure children. And that was an exciting time,” Ho said.
Survival rates in childhood cancer had increased dramatically in the previous decade. Now there were investigational trials for new, targeted therapies. The Vanderbilt Center for Vascular Biology had just been established. Ho and his colleagues had their hands full evaluating new cancer drugs. Four angiogenesis-inhibiting agents (targeting the blood vessels malignant tumors were known to create and depend on) were being tested in adult cancer patients at the Vanderbilt-Ingram Cancer Center (VICC).
“It was big news how well these therapies worked in certain adult oncology patients,” Ho said.
But as Ho met young patients like Gabe in his pediatric oncology clinic, he felt anticipation. He looked forward to the day he could offer these new therapies to his own patients.
Changing focus: survivor’s clinic
Jennifer Najjar, M.D., a pediatric endocrinologist, was bumping into colleagues like Ho more frequently in the new building. She began to take a special interest in young cancer survivors.
“It had been exhilarating to watch the successes of cancer therapy, but the field of long-term health of cancer survivors was really new. There were only a few well-established clinics for pediatric survivors in the country. We knew we would need many more,” Najjar said.
Najjar was one of a group of pediatric specialists who set to work on a clinic to treat late effects of cancer therapy in children. About half of children experience neurologic or endocrine damage from cancer therapy.
In 2006 the cancer survivor’s clinic at Children’s Hospital opened. Gabe, now a preschooler, was featured in an article announcing the clinic’s opening.
“I met Gabe there when he was just 4, and we were able to watch him closely for late effects,” said Najjar. “We discovered Gabe had a severe growth hormone deficiency.”
Around that same time, Ho had become Gabe’s primary post-cancer therapy oncologist. Some spots were discovered in Gabe’s brain. Ho recalled they didn’t look like cancer, but they were the sort of finding that could bring a halt to early treatment to correct growth problems.
“Even if these lesions were benign, there was a theoretic concern that the hormone might stimulate growth,” Ho said.
It was just the sort of moment that was best addressed in a place where experts in multiple specialties work closely together: like the Monroe Carell Jr. Children’s Hospital at Vanderbilt.
Najjar and Ho decided to watch and wait.
“The lesions did not grow for a couple of years, so after laying out what we had found to his team of physicians, they were comfortable deciding to start the growth hormone,” Ho said.
Najjar said because of the relationship and trust between providers, Gabe was able to begin growth hormone within a critical window of his development. He immediately began to catch up.
That was 2008, the year Gabe hit the five-year mark of being cancer free. The family celebrated with a trip to Disney World.
Najjar says she believes the decade since 2004 has been defined by a change in focus in pediatric cancer, from survival-only to maximizing the chances of growing normally, having a family and being able to be a working, productive member of society.
“These are things we didn’t even think about 30 years ago when I started in medicine. Now we are meeting families earlier and earlier, some just as they begin their cancer treatment. That’s great because it shows families right from the start that we fully expect their children to survive and live long and full lives,” Najjar said.
Ho says long-awaited studies to evaluate targeted therapies are now underway for children. The medication is used in combination with conventional chemotherapy for children with high risk or relapsed rhabdomyosarcoma.
“We hope these targeted therapies will do two things: improve the odds for difficult-to-treat cancers; and perhaps they can replace some measure of more damaging standard therapy in more moderate cases, like Gabe’s was,” he said.
Ho says he now understands success isn’t defined only by discovering new cures. He expects the next decade will be marked by more conservative therapy, time-compressed or short-burst treatments expected to be just as effective but less damaging.
Gabe is a sixth grader at Spring Station Middle School and is growing fast. He’s projected to reach between 5-foot-6 and 5-foot-8. He will have to be watched for thyroid and other endocrine problems, and he faces plastic and maxillofacial reconstruction to repair the damage from surgery and radiation.
Lu says she hopes to hang onto her “family” at Children’s because for her, concerns are always there.
“I think we turn to them because we have a relationship with all of them,” Lu said.
Meanwhile Gabe is too busy working on that budding programmer career—or whatever he may turn out to be.
“I’m open for anything, but I think I am more into the engineering thing,” he said. Then said in a hushed tone: “Right now I am working on an app for a game!”
He won’t reveal the details, but it’s clear his next decade is off to a good start.
- Carole Bartoo