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Vol. LXVII, No. 17
August 14, 2015
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Inn Celebrates 25 Years of Helping Pediatric Patients

On the front page...

NCI’s Dr. Lauren Wood moderated the anniversary event in Masur Auditorium.

NCI’s Dr. Lauren Wood moderated the anniversary event in Masur Auditorium.

Most parents would do almost anything to help their sick child. When children have rare, difficult to treat or undiagnosed conditions, they can be seen at the Clinical Center while they and their parents stay together at the Children’s Inn at NIH.

Many call NIH the “National Institutes of Hope.” The inn is a big reason for that title, explained NIH director Dr. Francis Collins at the inn’s 25th anniversary symposium held recently in Masur Auditorium. The event celebrated the inn’s role of assisting families who come to NIH for treatments that hold the prospect of improving the children’s health and even curing their diseases.

Since 1990, inn CEO Jennie Lucca said, the inn has provided “a place like home” for nearly 13,000 families. Although it sits on government property, the inn is a nonprofit charity supported through private contributions. Besides offering a free place to stay, the inn presents residents with a range of therapeutic, recreational and educational programs and services.

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“We do everything we can to provide a complete sense of respite,” Lucca said. “We want to make sure these families feel safe, cared for and supported.”

CC director Dr. John Gallin recounted the “awful conditions” families faced before the inn opened. As a young NIH physician in the 1970s, he regularly saw families sleeping in their cars or in hospital waiting rooms. The only food they ate came from vending machines. Those who stayed in hotels did so at their own expense. Among parents facing such stress, divorce was common.

The idea for an inn came from Dr. Philip Pizzo, who was then chief of pediatric oncology at NCI. He told Gallin about his vision of a home-like environment where families could take refuge from the hardships accompanying treatment of oftentimes gravely ill children. Determined to succeed, Pizzo, with the help of congressional leadership and private industry, eventually made his vision a reality.

“The Clinical Center cares for a child’s medical needs,” said Gallin. “The inn tends to a child’s heart, soul, spirit and family.”

Dr. Lauren Wood, head of the NCI Vaccine Branch clinical trials team, moderated a panel of three NIH investigators and three young patients who were returned to health through experimental treatments, compassion and years of persistence.

“It’s the ultimate professional reward of your life’s work to see your patients restored to health,” said Wood.

Robert Harding, now 25, came to NIH 20 years ago with a serious liver infection, a complication from his chronic granulomatous disease, an immune system disorder. Amanda Lee, 20, came to NIH 3 years ago with synovial sarcoma, a rare form of cancer.

Dr. Crystal Mackall, chief of pediatric oncology at NCI, said the inn is vital for observing the effects of treatments over time. Kathe Barchus (l), her 11-year-old son Isaac and Dr. Raphaela Goldbach-Mansky of NIAMS talk about Isaac’s rare autoinflammatory disease and how the Children’s Inn eased the burden during his frequent visits to NIH for treatment.

Dr. Crystal Mackall, chief of pediatric oncology at NCI, said the inn is vital for observing the effects of treatments over time.


Kathe Barchus (l), her 11-year-old son Isaac and Dr. Raphaela Goldbach-Mansky of NIAMS talk about Isaac’s rare autoinflammatory disease and how the Children’s Inn eased the burden during his frequent visits to NIH for treatment.

Photos: Ernie Branson

Harding and Lee hadn’t responded to standard treatments elsewhere so they took a chance on NIH clinical trials, a decision that paid off for both. Dr. Steven Holland, chief of NIAID’s Laboratory of Clinical Infectious Diseases, who treated Harding and still monitors his progress, beamed about watching him grow from a young child who hated getting his belly examined to a young man about to enter the police academy.

“I keep coming back because of Dr. Holland,” said Harding. “He saved my life.”

Dr. Crystal Mackall, chief of pediatric oncology at NCI, who treated Lee, said the inn is vital for observing the effects of treatments over many weeks, especially given the toxicity of some therapies.

“The fact that [children and young adults] can live at the inn during that time and have a home away from home, get caring and develop community with other people going through similar experiences…makes all the difference in the world,” Mackall said.

Isaac, 11, has been sick since he was 2 weeks old and has come to NIH regularly since age 2. It took 7 years of trial and error before his doctors could identify the reason for his rare autoinflammatory disease called CANDLE. In Isaac’s case, his immune system wouldn’t shut off and was attacking his body’s healthy cells, causing him to suffer fevers, rashes and joint pain, said Dr. Raphaela Goldbach-Mansky, acting chief of the translational autoinflammatory disease section, NIAMS.

Inn CEO Jennie Lucca said the inn has provided “a place like home” for nearly 13,000 families.

Inn CEO Jennie Lucca said the inn has provided “a place like home” for nearly 13,000 families.

“The Children’s Inn was a blessing because [NIH] is so huge; we were overwhelmed,” said Isaac’s mother Kathe. “[It was wonderful] to be able to go back to the inn at night and know that it was welcoming and inviting. We could have something to eat and relax and talk to someone else who knew what our path was. We could have spiritual help and guidance with other families.”

The inn helps alleviate the fears and frustrations of exams and treatment, offering both a refuge and a bustling community. Young patients enjoy playing video games and bingo, having family dinners and taking group trips to the circus or sporting events. There are also “thoughtful treasures”—donated toys or other surprises left in each child’s mailbox daily.

Isaac said he always looks forward to socializing at the inn after a long day at the CC. Amanda recounted that, while undergoing immunotherapy at the CC, her window faced the inn, which motivated her to get through the day so she could return there.

The inn empowers the work of NIH researchers and continues to “evolve and grow to support their needs,” said Lucca. The inn also has resources to allow patients to continue long-term protocols.

The Children’s Inn-Clinical Center partnership fulfills a critical need to study diseases from infancy to adulthood. Inflammatory diseases in children are chronic and often last a lifetime, said Goldbach-Mansky; it’s important to assess the long-term effects of treatments. Research is under way to explore whether drugs used in rare children’s syndromes could also help adults.

Investigators said they welcome the opportunity to follow patients for many years after recovery. Holland also lauded the opportunity to study interrelated conditions and symptoms. “Many times, we’ve found [health problems] that turn out all to be unified together in the condition the patients have. Precisely being able to do that here is unique and exquisite.”

In his keynote address, Collins said scientists have discovered the genetic basis for some 5,500 diseases since the Human Genome Project was completed in 2003. While this is encouraging, he noted, so far only about 500 of these diseases have treatments.

Amanda Lee (l) and Robert Harding (r), who came to NIH with rare diseases, listen as Dr. Steven Holland of NIAID talks about following the progress of young patients to gain a better understanding of a range of diseases.

Amanda Lee (l) and Robert Harding (r), who came to NIH with rare diseases, listen as Dr. Steven Holland of NIAID talks about following the progress of young patients to gain a better understanding of a range of diseases.

“It’s a very difficult and long process to go from knowing a molecular cause to coming up with an intervention—whether it’s a drug or some other kind of therapeutic,” he said.

He said the National Center for Advancing Translational Sciences and other ICs are committed to accelerating the development of new treatments and even repurposing approved drugs to sidestep the time-consuming process of drug development and safety testing.

Collins told the story of Kayla Martinez, a patient with neonatal-onset multisystem inflammatory disease, an often-fatal rare illness that causes chronic inflammation. At NIH, her doctors discovered the disease’s genetic mutation and wanted to test an anti-inflammatory drug that was already approved to treat rheumatoid arthritis. Kayla was one of the first patients enrolled in a clinical trial testing this drug and her condition improved dramatically.

Isaac and Goldbach-Mansky pause for a photo.

Isaac and Goldbach-Mansky pause for a photo.

“That’s the kind of thing we’ll be continually looking for in the future—how to shortcut this process,” Collins said.In all his time at NIH, Collins said, he “couldn’t remember a day that was more powerful” than when he joined U2 guitarist The Edge and three young CC patients—Lauren Weller, Nachiketa “Nachu” Bhatnagar and Andrew Windland—for a U2 concert at Baltimore’s M&T Bank Stadium. Before the show, The Edge invited the youngsters onstage to play his guitar.

All three were undergoing rigorous chemotherapy at the time, but “for a few hours none of that seemed to matter so much. They were there as guests of the guitarist who leads U2 and they were having a ball,” Collins said.

Sadly, all three since have passed away. Collins said such disappointments drive both himself and other researchers to discover treatments that will work “the next time and the time after that and the time after that.

“Lauren, Nachu and Andrew—they’re heroes, they’re our partners and part of our family,” he concluded. “They were then and they are now. They are what makes this place special. They were willing to put their trust and faith in the Clinical Center and the Children’s Inn to try and see if something can be done—if not for them, then for others after them.”

Ben Banks: A Patient’s Story

A bubbly, giggly toddler named Finley ran up and down the aisle in Masur Auditorium during the 25th anniversary of the Children’s Inn at NIH. Finley is a healthy 2-year-old whose dad, Ben Banks, was her age when he was diagnosed with advanced cancer.

Speaking at the inn symposium, Banks said doctors once told his parents it would be miraculous if their 2-year-old son survived surgery. He had stage 5 bilateral Wilms’ tumors on both kidneys and the cancer had spread to his lungs. While still a toddler, Banks would endure two surgeries, three blood transfusions and serious side effects from 15 months of chemotherapy and radiation. It was a miracle he survived. Over time, he gained strength and recovered.

Ben Banks, now 36, stays involved at the inn as a volunteer and participates in long-term follow-up and other clinical studies.

Ben Banks, now 36, stays involved at the inn as a volunteer and participates in long-term follow-up and other clinical studies.

But at age 12, while celebrating 10 years cancer-free, a routine checkup revealed devastating news: Banks was HIV-positive. “So here I had to face the fact that one of my blood transfusions I received that saved my life from cancer was tainted with HIV,” said an emotional Banks. “I immediately froze, went numb and collapsed into my mother’s arms.”

Little was known about childhood HIV back in 1991. A pediatric infectious disease specialist at Bethesda Naval Hospital put Banks on the antiretroviral drug AZT. Soon after, Banks arrived at NIH.

His mother enrolled him in the first interleukin-2 protocol, a grueling regimen that tested his strength and spirits. During his treatments, Banks stayed at the Children’s Inn.

While there, he became friends with kids of all ages from around the world and said he loved the camaraderie and diversity of the inn. He fondly remembers time spent in the game room and the daily gifts waiting in his mailbox, donated by generous patrons.

Banks, now 36, stays involved at the inn as a volunteer and participates in long-term follow-up and other clinical studies. In 2013, a sperm-washing procedure along with artificial insemination allowed his wife Kasiah to give birth to their HIV-free daughter, Finley.

Banks remains grateful to the Children’s Inn. “There was always someone there to take away the stress from the day,” he said. “There’s so much love and care that goes into that place...The inn provided me with hope for the future.”—Dana Talesnik


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