Lightening the load of chemotherapy for teens, one backpack at a time

Until now, treatment for paediatric sarcoma (bone and/or muscle tumour) in Canada has been done in the hospital. Typically, patients check in for a few days or up to a week at a time to receive their chemotherapy treatment. A new pilot project at The Hospital for Sick Children (SickKids) aims to deliver treatment at home and dramatically reduce time spent in hospital.

For 16-year-old soccer player, Yusuf Hirji, the time spent in hospital was one of the most dreaded parts of his treatment. “Being in the hospital is a constant reminder that I’m sick. My spirits aren’t the best, I feel glued to my bed, and am constantly watching the clock,” says Yusuf, who was diagnosed with osteosarcoma, a bone tumour that develops in adolescence, in July 2012.

On the first day of treatment, patients with osteosarcoma receive about four hours of a common chemotherapy drug called methotrexate. They must stay in hospital for an additional three to four days until the drug has cleared from their body. Yusuf, and other teens with cancer, have asked if it was possible to do some of this treatment at home. In hopes of addressing this question, a team at SickKids started a pilot research project to deliver outpatient methotrexate treatment that allowed patients to go home every day. This is the first time aggressive chemotherapy (high dose methotrexate) has been given as an outpatient treatment to paediatric patients in Canada.

A blue backpack filled with three litres of fluid gives Yusuf the freedom to leave the hospital each day after chemotherapy. “I can continue my driving lessons, go out with friends, have dinner with my family, sleep in my own bed and I’ve even started learning to play the guitar,” says Yusuf.

Eleanor Hendershot, Nurse Practitioner in Oncology at SickKids, was at a conference in Brazil in 2009 when she first saw this model of outpatient cancer care. “I thought, if they can do this in Brazil with limited resources, then we must be able to do it at SickKids,” she says. This type of treatment is offered at several centres in the United States but nowhere in Canada.

It took a multidisciplinary team of nurses, doctors, pharmacists, researchers, patients and their families to get the project up and running. “We needed to make sure that the outpatient treatment would not only be safe and effective for patients, but also be feasible for the medical team and the family.”

Eleanor explains that in order to give methotrexate safely, the patient must receive a lot of fluid, which is given through an IV. Eleanor worked with the Department of Pharmacy at SickKids to ensure that the hydration could be delivered through this backpack and that other medications required for care could be given orally. This had never been done in Canada before, so Eleanor and her team also needed to educate the staff at SickKids about this new concept of outpatient methotrexate treatment.

Yusuf’s mom also needed to be trained on how to check the acid levels in her son’s urine and give medications that are typically given through IV, orally instead.

“It is work to manage this at home, but when I see Yusuf at home with the family, happy and feeling healthy, it’s totally worth it,” says Yusuf’s mother, Shyrin Hirji. “He’s engaged and empowered to pursue new things and continue living his regular life. Once you understand the process and see how much your child is benefitting, there’s no turning back. I wouldn’t have it any other way.”

Patients who are receiving this outpatient cancer treatment must still return to SickKids daily for continued monitoring of urine, kidney function, drug levels and potential side effects. More importantly however, is the number of hours spent in hospital is significantly reduced with this method of treatment. Yusuf went from spending approximately 96 hours (four days) in hospital to just 22 hours, a reduction of 75 per cent less time in the hospital. This project has had a huge impact on the quality of life of the patients. “It is so rewarding to hear about all the great things they’re able to do in their ‘free’ time,” she says. The project also results in significant savings to the  health care system, as the  outpatient care provided for this treatment is much less expensive than the several days of hospitalization that it replaces.

Since using the outpatient hydration backpack, Yusuf has had a bigger appetite, better sleep, better mood, and overall has felt much healthier.  “With my backpack, I don’t feel like cancer is taking over my life.  Whether it’s driving, participating at a Terry Fox event, or just playing video games with my brother; I can do it. I’m just a kid with a backpack, like so many others my age.”

The pilot project was supported by The Garron Family Cancer Centre and the team plans to expand the project so they can treat teens with Ewing’s sarcoma as an outpatient soon too.