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The New Normal

A new program gets children's cancer care out of the hospital

Twice a month, Larry, Brenda and Alexandria 'Lexi' Kittle pack several days' worth of necessities – a few changes of clothes, comfy pajamas, books and other items—into their car and head to Boston. The drive from their hometown of Merrimack, New Hampshire, takes about an hour. As the picturesque, green views of their 27,000-person town fall behind them, the pavement and busy sidewalks of the big city loom ahead. But unlike most families traveling to Boston, the Kittles aren't going to the Museum of Science or the Boston Public Garden. Instead, they're driving to Children's Hospital Boston and Dana-Farber Cancer Institute, where Lexi is being treated for cancer. Yet thanks to a new program developed by the hospitals to normalize pediatric cancer treatment, Lexi hasn't, and mostly likely won't, spend a single night in the hospital receiving chemotherapy.

Lexi, who is 7, has a type of bone cancer called Ewing sarcoma that most often occurs in the pelvis and legs. She was diagnosed this January, after Brenda took her to the pediatrician for a swollen right thigh. Lexi's doctor ruled out Lyme disease and ordered a magnetic resonance imaging (MRI), which detected a mass on her femur, the long bone in the thigh. Her pediatrician immediately arranged an appointment with the oncology team at Children's, where Lexi came under the care of Holcombe Grier, MD, associate chief of Pediatric Oncology at Dana-Farber and Children's, and a Ewing sarcoma expert.

Grier and many other specialists from Children's and Dana-Farber with experience treating young children with solid tumors developed a treatment plan tailored to her cancer. In Lexi's case, the cancer had spread, or metastasized, to her lungs, so her plan would include three treatments: chemotherapy, surgery and radiation therapy. Grier explained the treatment plan to the family, and he assured them that, while things had changed, they were fundamentally the same people as before, with all the joys and sorrows that existed outside the current crisis.

A close-knit, faith-driven family, the Kittles took his counsel to heart and returned to Merrimack to explain the situation to their other three children, Tori, 9, Zachary, 13, and Matthew, 16. The family was intimidated at first but knew they had the strength to get through the coming months. "We scheduled our first chemotherapy appointment for February 6," says Brenda. "The drive to Boston was nerve-wracking, but once we arrived, we were ready to get started."

The first cycle lasted three days. Lexi began her infusion in the Jimmy Fund Clinic at Dana-Farber. From there, she was scheduled to move to 6 North, the inpatient Oncology unit at Children's, for subsequent chemotherapy and hydration infusions.

Assuming that treatment could only take place at the hospital, the Kittles decided that Brenda would stay at Children's overnight with Lexi, while Larry slept at the nearby Ronald McDonald House. Much to their surprise, Grier offered them another option: to spend every night together, as a family, outside the hospital.

Understanding chemotherapy

The typical treatment plan for Ewing sarcoma involves a combination of several different chemotherapy medications. These include ifosfamide and cyclophosphamide, called alkylating agents, that slow or stop cell growth.

While these drugs effectively target cancer cells, they can also cause significant damage to a patient's bladder and kidneys when they break down. Furthermore, studies showed that patients who developed bladder and kidney irritation were more likely to have recurrences of irritation or long-term problems, while patients who never developed irritation were less likely to experience any long-term issues.

'As you can imagine, prevention of initial damage became a priority,' says Grier. 'So, hydration, which keeps the urinary system flowing and flushes harmful agents from the body as quickly as possible, became standard treatment for patients receiving this type of chemotherapy.'

Until 2006, patients had to be admitted to the hospital for hydration, which consists of intravenous fluids and a medication called Mesna, which neutralizes ifosfamide and cyclophosphamide. While tethered to an IV pole, patients could visit the activity room or head downstairs for a snack in the cafeteria. But their activities could only extend as far as the hospital walls. During certain chemotherapy cycles, this translated to a minimum of six nights in the hospital. Over the entire treatment period, patients could spend more than 48 weeks in the hospital.

"This was a huge challenge, especially for teens," says Annette Werger, RN, MSN, PNP, a pediatric oncology nurse practitioner at Dana-Farber who oversees Lexi's outpatient chemotherapy. "They weren't able to just go home and pick up where they were when they began treatment. It seemed to take patients at least six months to catch up on the social encounters they missed due to their treatment and hospital admissions."

With quality of life always a priority, the oncology team at Children's and Dana-Farber knew there must be something they could do to minimize hospital stays. The solution they developed was a mobile hydration system.

Hydration on the go

The concept is pretty simple: check into the outpatient clinic to have your chemotherapy and leave with enough fluid to flush the body until the next day's infusion. However, implementation is fairly complex and relies on the cooperation and collaboration of many caregivers, including doctors, nurses, pharmacists, patients and families.

During an outpatient visit, participating families receive a pump, which is about the size of a pair of binoculars, fluid bags and a backpack to carry it all in. Parents learn how to replace empty bags with full ones, which is as easy as disconnecting and reattaching plastic tubing, and when to call a doctor or the pump manufacturer if problems arise. Werger notes that the pumps have an excellent performance record and that there's a back-up system in place, so families always know who to call with questions when they leave with their pack.

Making history

The Kittles were the first family given the option of using home hydration on Lexi's first cycle because the oncology team was comfortable with Lexi's health, the proximity of the family's overnight accommodations (in case problems arose) and the family's willingness to assume responsibility of medical care.

"The concept was a little intimidating at first," recalls Brenda, "but once we realized all three of us could stay together at the Ronald McDonald House, it was an easy decision. We also knew that we were in really good hands. Our team kept us informed every step of the way."

Since beginning treatment in February, Lexi hasn't spent a single night at Children's to receive chemotherapy or hydration. If the family wanted to, they could return to Merrimack after each infusion, while Lexi hydrated from the back seat. But since Boston traffic can be a bear, they prefer to stay close to Children's and Dana-Farber, allowing them time to recover and even to explore the city.

"Sometimes we go to Coolidge Corner and eat at one of the restaurants," says Larry. "Other times, if Lexi's tired after her infusion, we stay in the hotel room and all watch a movie."

The opportunity to have on-the-go treatment hasn't been lost on Lexi. When asked which place she preferred, Merrimack or Boston, Lexi chose Boston because "there are more things to do."

Homegrown strength

Holcombe Grier, MD, and Annette Werger, RN, MSN, think portable therapies that get children out of treatment rooms like the one above help make cancer treatment easier for patients and their families.

But as each cycle comes to an end, there's no place like home for the Kittles. The family car, with Lexi and her hydration pack safely buckled in, always turns north, where the whole family is reunited.

Being away from home and their other children is hard on Brenda and Larry, but Brenda says that they have a "great support system at home from our family and our church." Her children frequently stay at her sister's home, and she's confident the prayers coming from Merrimack help keep her family strong.

Werger and the rest of the care team couldn't be more thrilled to hear the positive impact home hydration is having. "Our goal is to help families live as normally as possible while moving along their treatment plan," she says. "Programs like home hydration help us move cancer treatment into a more comfortable setting, which reminds families that they can live around us."

Werger anticipates that other components of childhood cancer treatments will soon follow home hydration's lead. The Children's and Dana-Farber team is already piloting blood draws at local hospitals, which lets some patients skip trips to Boston when their blood levels don't meet criteria for receiving chemotherapy. For families driving long distances, the extra day at home can mean the world.

The team also sees home hydration's impact on the general community. More children remain in school and extracurricular activities than before. Though discreet, the backpack's visibility demystifies treatment, opening the door for communication and increased support among community members.

"Home hydration has made such a positive impact on our patients, especially our teens," says Werger. "We really feel like we're accomplishing something by helping our patients stay involved."

For Lexi, who is currently recovering from the surgery she had in May to remove her tumor, life won't ever be the same. She still has two-thirds of her chemotherapy cycles to go, and she and her parents will continue to commute to Boston. But thanks to home hydration, she'll be doing it on the move, with her family by her side every step of the way. And, while important to Lexi, this situation is crucial for her family because she's an incredible source of encouragement for them.

"Her attitude is fabulous," says Larry, who recalled how Lexi wasn't the least bit nervous about her recent surgery. "She's amazed me."

– By Nikki Shimshock

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