In the weeks since the article about our daughter’s battle with leukemia appeared in the Bangor Daily News, a number of readers have asked how they can best support families, like ours, who are confronting the challenge of a very sick child. This is the time of year when many are looking for worthy charities to support, and we are happy to suggest a few from our experience.
Our key interest, and the key interest, of course, of every parent of a child fighting a life-threatening illness like cancer, is seeing the child returned to health. While we are fortunate that great strides have been made in the fight against childhood cancers (the type of cancer our daughter is successfully fighting was virtually incurable 50 years ago), the fact is that cancer, in all its forms, remains a potent killer, taking the lives of more Mainers each year than any other disease.
While large government grants and the R&D investments of private-sector drug companies typically support the bulk of cancer research, charitable foundations such as the American Cancer Society also make significant investments in the fight for a cure. Those organizations support the work of cancer researchers, such as those at the Dana Farber Cancer Institute, which is just across the street from our daughter’s room at Boston Children’s Hospital. Charitable organizations such as these work every day to ensure that effective treatments are available to families like ours.
Families of sick children also face the challenge of navigating the complex world of 21st century medical care, a daunting task for those still reeling from the news of a child’s diagnosis. We were fortunate that the Maine Children’s Cancer Program in Scarborough, the pediatric oncology practice coordinating our daughter’s care, is not only home to an expert team of pediatric cancer practitioners, but also employs a team of social workers and other staff who help guide families through the maze of appointments and paperwork that come with a diagnosis of this kind. Assistance of this kind is critically important to families and worthy of charitable support.
Similar support has been provided to Katherine herself by the Child Life specialists both at Barbara Bush Children’s Hospital at Maine Medical Center in Portland, where she was initially treated, and now at Boston Children’s Hospital. While the doctors and nurses at these hospitals have provided Katherine with exceptional medical care, it has been the job of the Child Life teams to make her stay at these hospitals as comfortable and enjoyable as possible. By making games and activities available to the young patients they serve, and by maintaining an unrelenting cheerfulness and optimism in the face of crisis, these teams are, in many ways, as critical to the healing process as the medical teams with which they work.
Outside the walls of the hospitals themselves is another worthy charity providing critical support to the families of sick children. The so-called “hospitality houses,” such as Ronald McDonald Houses, provide families of pediatric patients with a place to stay near the hospital. As we write this, we have been guests of the Ronald McDonald House in Boston for more than a month. It simply would not have been possible for us to stay so close to our daughter’s hospital if this resource was not available, and when people ask which charitable organization we have been most thankful for during this little calamity, Ronald McDonald House is near the very top of the list.
The BDN article about Katherine highlighted the work of Grahamtastic Connections, a Maine-based charity that provides sick children with technology to keep them connected to school and friends, and Raising the Blues, which supports young musicians, like Katherine, who are facing medical challenges. These are just two of the many charitable organizations that make it their mission to provide encouragement to sick children and their families and help them maintain some sense of normalcy as they confront these challenges. Camp Sunshine, in Casco, is another example of a worthy charity that supports these kids and their families in this way, and there are dozens more.
For us, as for many families, our local church community has been yet another source of invaluable support. We sometimes forget that the houses of worship in our communities not only provide direct support to their congregants, but also run soup kitchens and food pantries and in a hundred other ways provide care to our neighbors in need. This holiday season is a good time to remember and recognize the many ways faith-based charities make a profound difference in our communities.
As we’ve confronted the challenge of our daughter’s illness, we’ve been very fortunate to have a loving community of friends and family behind us. For that love and support we are eternally grateful. Families like ours also rely, though, on a vast network of charitable organizations such as those described here, organizations that make it possible for us to battle and beat cancer and other childhood illnesses. Those charities, in turn, rely on all of us for the resources they need to do their excellent work. Please consider supporting them, and by extension, kids like Katherine all across our state.
Stephen and Heather Bowen live in Rockport. Stephen Bowen served as commissioner of the Maine Department of Education from 2011 to 2013. Heather Bowen is the director of education at Peopleplace Cooperative Preschool in Camden.