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At just 17 years old, Fernando Morales's life is still very much a blank canvas. The talented young artist used to spend every afternoon playing soccer or running track, but a cancerous bone tumor in his pelvis, called Ewing sarcoma, put his athletic career on hold. Adjusting to a more sedentary life was difficult for him, but an innovative form of chemotherapy supportive care developed at Dana-Farber/Children's Hospital Cancer Center (DFCHCC) allowed Fernando to spend a majority of his recovery at home, where he quickly developed a newfound love for art.
By approaching painting with the same vigor he once showed on the field, Fernando's budding skills are becoming as sharp and vibrant as the acrylic paints he uses. More than a distraction from his fight with cancer, art has been instrumental in keeping Fernando's sprits up during treatment and his time away from sports.
Treatment advancement
Just a few years ago, patients with Ewing sarcoma like Fernando had to spend countless days and nights in the hospital receiving an assortment of chemotherapy drugs. These regimens are effective in targeting cancer cells, but can also damage the bladder and kidneys as they break down in the body. To flush those chemicals, the patient needs to be hydrated at all times so his urological system can remove any toxins left after treatment. In the past, doctors helped the process along by hooking patients up to an IV drip or pumping mechanism that would inject them with a special fluid. It's a painless but time-consuming process; most hydration sessions last for a full 24 hours once the chemotherapy drugs have been administered.
So people like Fernando would be bedridden during hydration because chemotherapy often leaves people—especially children—feeling nauseous and exhausted. But in recent years, big advances in chemotherapy supportive care have made the process far less stressful and draining.
Meanwhile, as select chemotherapy regimens became less taxing on patients, doctors and nurses at the DFCHCC encountered a new side effect of cancer treatment that they weren't used to dealing with: patient boredom.
"Supportive care has come so far in a few decades, it's really opened up new doors for improving other aspects of treatment," says Barbara Cuccovia, MSN, RN, CPON, nurse manager for Children's Hematopoietic Stem Cell Transplant Program. "At one point, we had a decent number of kids receiving hydration here at the hospital who were getting bored just sitting around. It got us thinking: If these kids feel well enough to be bored, how can we provide them with both the hydration treatment and the freedom to leave the hospital and get back into the real world?"
So a team of doctors and nurses from the DFCHCC put their heads together and created the Home Hydration program, which is as effective as it is simple. The program connects a portable IV pump, about the size and weight of hardcover book, to an IV catheter in the patient's chest via a small, self-attachable tube. Once the tube is in place the pump injects fluid into the body from a concealed IV bag. Both the pump and fluid bag are small and light enough to be carried in an unassuming backpack, letting the wearer receive hydration on the go.
Treatment on demand
For a teenager who describes soccer as "one of the greatest things in the world," being benched by a bone tumor is tough. Hard as it may be, Fernando says being able to cheer and support his teammates from the sidelines helps him feel less isolated. It's a small but important comfort, and one that wouldn't be possible without his Home Hydration backpack.
"The Home Hydration bag is a lot like wearing a regular backpack," Fernando says. "Once I'm hooked up, I can go to school with it, paint or go out and watch soccer games. It's obviously not as good as being on the field, but it's definitely better than being stuck at the hospital the whole time."
Fernando knows that stuck feeling all too well. Early in his treatment, a complication kept him in the hospital for 18 days straight. It was a grueling two and a half weeks that resulted in sleepless nights and plenty of lost workdays for his parents while they spent time with him.
"Hospitals are busy places, 24 hours a day, and there's very little privacy to be had," says Fernando's mother, Esther. "Of course you are grateful for the care they provide, but spending the night there can be hard. Even when you get out the next day you still feel out of synch. It's like being in a different world, and getting back to normal is difficult."
Since his setback, Fernando has been to the DFCHCC dozens of times for daytime chemotherapy sessions, but hasn't spent a single night at Children's for the hydration portion of his treatment. By Esther's count, the Home Hydration program has spared her family around 50 hospital overnights, which has let them live a far more typical life during Fernando's treatment.
"Cancer is never an ideal situation, but this makes it just normal enough that we can go to work, eat as a family, keep up with house work and look after our dog Jonah," she says. "If we were stuck at the hospital for days at a time we couldn't do any of that. Thinking back to the three weeks we spent there really makes me appreciate the Home Hydration program even more."
It's an appreciation common among many DFCHCC families. Since being introduced in 2008, the Home Hydration program has helped many families avoid at least one hospital admission for each treatment cycle. By eliminating so many overnight stays, the program has saved about $1.25 million in estimated payments, and the savings are expected to grow as the program expands.
"Adopting the Home Hydration program was not only the right thing to do for some of our patients getting chemotherapy, it also helped free up room in the hospital for other patients who needed that bed space or medical attention more," says Cuccovia. "To my knowledge the fact that doing so would lower revenue was never even brought up. It speaks volumes about what really matters to the leadership at Children's and Dana-Farber.
A brightly painted future
Fernando is scheduled to finish his chemotherapy this winter, and says he's looking forward to getting back on the soccer field, being in school on a regular basis and having his life return to normal. In the meantime, he and his parents are thankful for the comforts that the Home Hydration programs affords them.
Each day that he wakes up fully rested in his own bed or takes a bite of his father's rich home cooking is a reminder of the days before Ewing sarcoma, and a pleasant glimpse of what life will return to when his cancer is in full remission.
"I'm excited that my treatment is almost over, but I also know it could have been worse," Fernando says, sitting comfortably on his family's living room couch with Jonah at his feet. "At least with Home Hydration I didn't have to eat too much hospital food or go too long without seeing my friends. Sometimes it's the little things in life that get you through the tougher ones."
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