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Dr. Rajaram Nagarajan has treated Hannah since she was first diagnosed with a rare form of leukemia five years ago. She’ll continue to see “Dr. Raj” and his team into adulthood through the Cancer Survivor Center at Cincinnati Children’s.
Seven-year-old Hannah sat with an enormous smile on her face as her mom cut into the cake with a big 5 on it. Hannah’s family didn’t get the number wrong – it wasn’t her birthday they were celebrating, but a milestone that is just as important.
Hannah and her loved ones were ringing in the five-year anniversary of conquering a rare form of leukemia. Just 50 CCs of donated cord blood – less than four tablespoons – replaced the bone marrow in her body and gave Hannah the opportunity for a healthy life.
“We always said at five years we’d have a big celebration,” says Mei Ling, Hannah’s mom. “We wanted to thank everyone who supported us through her treatments and the 170 nights we spent in the hospital. We wanted to celebrate that she’s cancer free.”
Hannah will continue to see specialists at Cincinnati Children’s for years to come – because our care doesn’t stop when the treatments do. The expert care of Cincinnati Children’s Cancer Survivor Center will be there for Hannah, and thousands of other cancer survivors, long into adulthood.
As medical advances help more and more children survive cancer, the need for long-term care and research to improve outcomes also grows. The effects of disease and treatment on the body can create later health problems, including an increased risk for heart, lung and kidney disease, intellectual challenges, endocrine and fertility issues or secondary cancers.
For more than 20 years, our Cancer Survivor Center has been helping pediatric cancer survivors thrive. One of the first centers of its kind, it is the largest and most comprehensive cancer survivor program in the country. We now care for more than 1,000 survivors who range in age from 5 to 60 years old. Patients do not need to have been treated by Cincinnati Children’s to receive follow-up care. The center’s multidisciplinary team of experts provides life-long care, consultation and research to empower survivors to lead long, healthy lives.
“Our Survivor Center is unique,” says Karen Burns, MD, MS, director of the Cancer Survivor Center. “We follow patients long-term into adulthood. We accept any patient who has survived pediatric cancer, who is at least five years out from their treatment, regardless of age. Our ultimate goal is to ensure that each patient is receiving the care they need based on their previous cancer and treatments.”
An expansive array of specialists, including an adult-trained physician, work with the patients cared for by the Survivor Center. Patients check in regularly not only with their oncologists, but also with endocrinologists, gynecologists, radiation oncologists, geneticists, neuropsychologists, social workers, nutritionists, cardiologists and more.
The team works to create an individualized care plan for each patient based on past treatments and helps identify risks for future health problems. All patients receive a treatment summary to help them understand their initial diagnosis and the care they received so they can share that information with doctors they may see outside of Cincinnati Children’s. This is especially important for survivors who were treated when they were very young and who may not remember much about their experience with cancer.
“The center doesn’t act as a patient’s primary care provider, though,” explains Rajaram Nagarajan, MD, MS, Cancer Survivor Center physician and one of Hannah’s favorite doctors. “Instead, we provide the oversight needed to help ensure the patient receives appropriate survivor care.”
Through regular visits, open communication with the patient’s primary care provider and targeted preventative tests, the center helps educate patients to advocate for the healthcare they need today and long into the future.
Information gathered from the more than 20 years of care provided through the Survivor Center at Cincinnati Children’s, as well as partnerships with other programs across the country, enables doctors to track what kind of late effects can occur from a particular cancer or cancer treatment. Being able to look ahead at what specific problems a patient may face later allows doctors to better target individual treatments from the very beginning.
For example, the chemotherapy and radiation that is used to treat cancers like Hodgkin’s lymphoma sometimes leads to issues with the heart and fertility. Doctors are now looking at giving limited amounts of chemotherapy and avoiding radiation based upon how the tumors respond to the therapy to avoid long-term issues.
Hannah’s treatment was also improved because of research.
“When she was diagnosed, we thought she had a very common form of leukemia,” Mei Ling says. “But they did genetic testing and found that she actually had a very rare, aggressive form called near-haploid acute lymphoblastic leukemia (ALL). If she didn’t have a bone marrow transplant, it would come back.”
Because doctors and researchers mapped out the specific genetic code of this type of leukemia years before, Hannah’s care providers knew to treat her cancer aggressively. Instead of allowing the cancer to return, they used bone marrow transplantation as a first line of defense.
As Hannah gets older and continues her annual visits to the Survivor Center, specialists will provide treatment based on her previous therapies and track her progress. They will also use what they learn to continue to improve care for the patients who come after her.
“There are risks involved with all treatments,” says Nagarajan. “We have to think about the best approach to treat their cancer and then think about long-term implications.”
While doctors gather this information, they still set their sights on what is most important: the patient. That is why Mei Ling is so reassured by the care her daughter receives at Cincinnati Children’s.
“We will always come back,” she says. “Even if we move away from Cincinnati, we will make a trip back each year. This is important. They know Hannah’s history and they know what to look for.”
For now, Mei Ling and Hannah have a special ritual for their visits to the Survivor Center, but Hannah has other plans for when she’s older. “When we go to the hospital, my mom brings me and then she takes me out to lunch,” Hannah says. “But when I’m a grown-up, I’m going to drive us to Cincinnati Children’s and I will take my mom out to lunch.”
If you have had an experience with Cincinnati Children's, we invite you to share your story.
Hannah was taken to the Pediatric Intensive Care Unit due to complications from chemotherapy treatment.
Hannah received less than four tablespoons of cord blood that replaced her bone marrow.
Hannah recovers from her bone marrow transplant.
Hannah’s mother, Mei Ling, brings Hannah to the Cancer Survivor Center each year for follow-up care.
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