The “Dream Hospital” Realized After Crowdfunding $950,000
Built by a Mother Who Lost Her Daughter to Childhood Cancer
by Keiichi Tanaka
The Child Chemo House opened at the end of 2013 at Kobe’s Port Island, where there are many advanced medical facilities. This is the first special treatment facility in Japan focusing on childhood cancer and the quality of life (QOL) of the child and the child’s family. The child can undergo chemotherapy in an environment not unlike living at home. Every year 2000–3000 children are diagnosed with childhood cancer, and treatment is advancing, however, there has been little attention to quality of life during the treatment process. The room where children would spend six months to a year was by no means spacious. In order to avoid contagion, their ability to go outside and to meet with friends and family is restricted. It is difficult to say it is healthy for the children when they have to worry about patients next door separated only by a curtain, and spend the day in bed surrounded by their daily supplies. The Child Chemo House NPO set out to change this environment.
“Ordinary Everyday Life” Even While Hospitalized
“When my child was hospitalized, I just accepted all the restrictions on things like daily menus and the fixed times for bathing. But is it true that we have to put up with this just because there is illness? That question is what started everything,” says Child Chemo House’s Masami Hagiwara. After the experience of losing her daughter to childhood cancer, she began participating in a study group established in 2005 focused on improving the living environment of a child and his or her family while undergoing treatment.
Masami Hagiwara of Child Chemo House
At first, Hagiwara visited various places to talk about her personal experience and describe the project in order to gather support. However, many people were reluctant to discuss such a heavy topic as childhood cancer, and it was more difficult than she thought to get people involved. While continuing to persevere, she learned that many families who had children with childhood cancer had similar feelings to hers. One common theme was that the collapse of “ordinary everyday life” during treatment. The most important thing to think about here was the feeling, expressed by children of all ages, of wanting to return home. What they wanted more than anything else was an environment where the family could relax during the hospitalization period.
Mrs. Hagiwara recalls that “During treatment I often thought that ‘it’s an illness, to we can’t make too many demands.’ But after thinking more I realized that the children’s honest expression of their feelings was correct, and began to take my own feelings seriously too.” At most hospitals the family is not allowed to live with the patient. If that is the case, it would be good to make a hospital where life could go on like at home. Aiming to create a specialized inpatient facility merging the clinic and the space of a home, the Child Chemo House NPO was established in 2006.
Realizing a Dream Hospital by “Buying Ideas”
Creating the Child Chemo House NPO involved not only patients and medical staffers, but also many other kinds of professionals, such as art directors, copywriters, designers, architects, and urban planners, who could offer perspectives outside the framework of medicine. They had discussions on how to improve the QOL of childhood cancer treatment. Starting from this broad perspective, they sought ideas on how to spread the word about their activities to as wide an audience as possible. “The biggest obstacle was the heaviness of the topic. It was a kind of invisible wall we couldn’t get past in order to take the first steps forward. What could we do to make it easier to understand? After consulting many different people, we eventually reached the conclusion that the design and copywriting would be the way over that wall.” In 2009, in cooperation with art director Bunpei Yorifuji and copywriter Kinya Okamoto, they created the crowdfunding website “Let’s Make a Dream Hospital Project,” with the goal of raising the one billion yen (about $8 million USD) necessary to build the hospital.
Let’s Make a Dream Hospital Project website
What is unique about the site is that it is not only about fundraising, but includes a system where donors can purchase a number of fictional items “we would be happy to have in the dream hospital.” These include various dream items born from their personal experiences, like ‘a hospital room like a home,’ ‘a stethoscope that isn’t cold,’ and ‘medical tape that doesn’t hurt when you remove it.’ The items cost from between 2,000 yen (~$16) to 20,000 yen (~$162). Not all the items are fictional, however, and some have been realized. “I think the realization of this site and the Child Chemo House came from gathering together our experiences and overcoming our members’ biases through mutual discussion.” Each item includes voices of the children and families who inspired the birth of the NPO, so by purchasing them people can participate in realizing these dreams. The idea of making fundraising feel like shopping helped eliminate the ‘heavy’ feeling, while at the same time spreading the message of the project in a simple and fun way. The site has currently raised a total of 18,140,000 yen (about $950,000 USD). The site doesn’t end with just collecting donations, but provides a place for people to get involved in the project along with the existing members.
Aiming for an Ideal Fusion of Healing and Welfare
The Child Chemo House was completed in 2013, giving shape to these activities. Based on thinking about the child and his or her family as a unit, the clinic is comprised of a gathering of houses connected by various communal spaces. From outside, it looks more like a private home than a hospital.
After opening in 2013, about thirty families have used the Child Chemo House, ranging from just a weekend to stays of several months. For example, a four-year old who previously did not have enough space to move around and therefore lost muscle mass and couldn’t walk, was able to exercise after playing in the playroom of the Chemo House, and the child’s appetite and sleep also improved. A girl who never smiled before began to be more expressive after staying with her family at the Chemo House, and the staff has been able to support her in her future path. Hagiwara notes how “We saw how when children are returned to their usual environment, they are able to get back the strength and feeling they had using their own power.” Among the families who first visited the House, some said “Can we really live in such a nice place even when ill?,” showing how uncommon it is to have an ordinary home environment for childhood cancer patients.
The impact of actually giving form to their plans was huge. “Through the response of the staff, we have been able provide more concrete suggestions for how to improve the care environment elsewhere as well,” says Hagiwara. Recently, the surrounding situation has been to change. At first, the rooms at Child Chemo House was not considered hospital rooms, but from July 1, 2015 they will be recognized as such, meaning treatment fees for the patients can be received. Beyond treatment, we are strengthening the support for education and social welfare as well as helping families navigate the bureaucracy. A monthly study group has been formed based on things noticed during this project, focusing on how to combine medicine and social welfare and how to coordinate human resources. A particular focus is on how to develop welfare support resources for children undergoing treatment. They have already began working on a practical framework based on budgets from the national and local governments.
“Even though it was said to be impossible in a place like Japan, without a culture of fundraising like in Europe and North America, we were able to find a way to fundraise by considering models from overseas. Thinking about how to prioritize children and gather the support of the surrounding adults. Starting from Child Chemo House, I think we can spread an understanding of the importance of creating a social community that supports children.”
(photo: Kohei Shinohara translation Paul R. Shimizu)
Originally published at ignition.co.
