Here is my Sabbatical proposal, with some edits to protect the privacy of others:
In May of 2005, my stepson Bradley Rice was diagnosed with Ewing’s Sarcoma/primitive neuroectodermal tumour (ES/PNET), a rare form of a rare pediatric cancer of the bone and soft tissue. Because this cancer is both rare and aggressive it is best treated at a major cancer center using a multidisciplinary approach. We were quickly referred to the University of Maryland Medical Center’s Greenebaum Cancer Center, where an associate director for clinical research oversaw his care. Over the course of the next 10 months, Bradley completed 9 of the 14 rounds of the chemotherapy recommended for ES/PNET, had surgery to remove most of 3 ribs and 6 weeks of radiation therapy.
Our normally well-ordered lives were turned inside out. We could no longer make any plans more than a week into the future because of the complexity of Bradley’s treatment plan. We, who considered ourselves to be competent, intelligent people were totally daunted by the task of learning everything we needed to know about his condition, the treatment plan and the many decisions that would have to be made along the way. We learned not only the myriad symptoms caused by the cancer, but also the side effects of the chemo, the side effects of the medicines used to control the side effects of the chemo, and the medicines to, in turn, control the side effects of those medicines. We kept an oversized desk calendar on the dining room table to keep track of all the appointments and important milestone dates. The pharmacists at our local store knew us all by name. At the end of many of our days, we felt like we had been “run hard and put away wet”, to borrow an old saying. In spite of our and medical science’s best efforts, Bradley passed away on March 21, 2006.
Our entire family found the experience to be profoundly life altering. My personal priorities have changed in such a way that I now wish to engage in activities that improve the quality of life of cancer patients and their families. During my sabbatical, I plan to devote my time to the following four projects, each of which supports that goal.
1. Participate as a driver for the American Cancer Society (ACS) Road to Recovery Program.
2. Perform a variety of volunteer activities at the Ronald McDonald House (RMH) of Baltimore.
3. Lead a Team Sarcoma for the Liddy Shriver Sarcoma Initiative.
4. Create a CarePages chronology of Bradley’s battle with cancer.
At the end of the 6-months, I hope to look back and know that I was able to make the world a better place for people whose lives have been forever altered by the diagnosis of a life-threatening illness. I hope to make an impact both directly through hands-on work with the ACS and RMH and indirectly through fundraising and publishing the details of Bradley’s journey.
American Cancer Society (ACS) Road to Recovery
When people receive a cancer diagnosis, they have to deal with it where they are, along with their current problems large and small. In many cases, there is very little time to re-arrange one’s life in order to accommodate the most effective treatment plans. My husband Brad and I were EXTREMELY fortunate in that we are both long-term company employees with very supportive, caring management teams. We were able to arrange our schedules as needed to drive Bradley to appointments in Baltimore on an average of 20 days in each month. During radiation therapy, he was at the hospital every day for 6 weeks, including some Saturdays.
We spent many hours at the infusion center, outpatient clinic and radiology nursing stations. From time to time, we would hear nurses say that a patient was a “no-show”, with much concerned murmuring. We knew that if a person was scheduled for chemo or radiation, it was for a good reason, not an optional choice. I wondered if some of the no-shows were sitting at home fretting because they could not get a ride.
For this reason, I contacted the Mission Delivery Manager for the South Atlantic Division of the ACS to get information about becoming a driver for the Road to Recovery program. She informed me that for Howard County, there is a great need for drivers, especially drivers who are willing to transport patients to the major medical centers in Baltimore. They currently have only 8-10 drivers, most of whom are retired and not able to drive into the city. My application for the program has been accepted and they have completed the background check of my driving record and vehicle registrations. I will start driving for the program once a month now, and will increase the number of driving days to 2-3 days a week if I am awarded this sabbatical. There are no time constraints on this project, as it is an ongoing effort for which there is always a need.
Ronald McDonald House
I have been a long-time financial contributor to the Ronald McDonald House of Baltimore, the only RMH in the state of Maryland. By complete coincidence, the RMH Development Associate called to offer me a tour of the house a month after Bradley was diagnosed. In the course of the tour, I learned a great deal about the many types of services provided by the house as well as some interesting details of how non-profits work and what the real needs are. The RMH can house up to 52 families at one time, all of which must have a child under 22 years old actively in treatment at one of five major hospitals in the area. They provide guests with breakfast and dinner, shuttle services to hospitals and a variety of entertainment options for the children. They rely on volunteers to prepare the meals and put together special treats, such as trips to museums, concerts and sporting events.
We were offered unlimited access to the house to take rest breaks, have meals, use computers and, most importantly, clear our heads of the medical information overload we were experiencing. We were fortunate not to require the services of the house during Bradley’s treatment. However, during his final hospitalization, family members arriving from out of town on short notice stayed at the RMH and it was a huge relief to have them there, minutes away from Bradley’s side.
I called the house to discuss opportunities for helping the RMH during the sabbatical. They are, of course, delighted as they can always use volunteer help with day-to-day tasks. In 2007, there will be a special opportunity to assist with a “Bedroom Remake” project. The project needs a person to contact several stores with on-line gift registry services (for example, Target, Crate & Barrel, Bed Bath & Beyond), set up and populate the registry with the items that the House needs, and write user-friendly instructions for accessing each registry to be included in e-mail notifications and post cards. I have never been interested in fund-raising, as it has always taken the form of making phone calls or knocking on doors. The gift registry style of acquiring products needed for the RMH represents a departure from any work I have ever done before. I hope that it gives me a new perspective on salesmanship and cheerleading for a cause. In this respect, I feel the RMH project will add to my skills in a way that would benefit my employer. The specific timeframe for starting work on this project has not yet been established, but it will likely begin in early Spring of 2007.
In addition to working on the Bedroom Remake, I would provide single-serving, frozen meals that can be available for families that miss the regular meals or cannot eat the meal for dietary reasons and assist families in creating their own patient CarePages. My volunteer application, complete with three references, has already been submitted and accepted by the RMH.
Liddy Shriver Sarcoma Initiative Team Sarcoma
Bruce and Bev Shriver founded the Liddy Shriver Sarcoma Initiative, a non-profit public 501(c) charity, after the death of their daughter Elizabeth (Liddy) in 2004. This paragraph from the Initiative website summarizes their goals:
The Liddy Shriver Sarcoma Initiative undertakes activities that help improve the quality of life for people dealing with sarcoma. Central to this mission are our goals of increasing public awareness of sarcoma and the lack of young adults in cancer-based clinical trials and raising funds for sarcoma-related research. We believe that increased public awareness of sarcoma will lead to increased research funding and that research will ultimately lead to a cure for sarcoma. (http://liddyshriversarcomainitiative.org/index.html)
It is important to me to contribute in a significant way to an organization that directly supports activities to find a cure for pediatric cancers and sarcomas. The core function of the Initiative is to raise money that is used to fund research grants to facilities specifically involved in finding a cure for sarcomas.
The main fund-raising activity consists of a main international Team Sarcoma bike ride and Virtual Team Sarcomas in local communities all over the world, following the model of the ACS Relay for Life. In 2005 and 2006, there was no Team Sarcoma representation in the state of Maryland or in DC. I would like to organize a local ride in 2007. As a team leader, I would recruit my team, select a route for either biking or walking, make maps, coordinate as needed with local officials, notify local news organizations of the event and find other creative ways raise public awareness. I have notified Bruce Shriver of my intention to serve as a team lead if I am awarded the sabbatical or a less time-consuming role otherwise. The event is held in early July, with planning starting several months ahead of that. Participation in this event would not only benefit all sarcoma patients, it would give me the opportunity to meet members of the Association of Cancer Online Resources (ACOR.org) Ewing’s Sarcoma support group that was of so much help to us during Bradley’s illness and with whom I continue to interact. As with the RMH project, this is a fundraising project that would give me experience in a new area.
Brad and I will be attending the Team Sarcoma 2007 international ride, which is being held in Vermont this year! My daughter and I will team up with local family members to also hold a local Team Sarcoma event in Frederick, MD while we are in Vermont. So we will hit both types of events this year! While at the international event, we’ll meet people from all over the world who have successfully hosted a variety of types of fundraising events. I’ll exercise my project management skills by picking their brains for task lists, what works where, and all the other stuff I don’t know now.
CarePages is a free on-line service used by patients and their families to publish daily journals and photos to the web. They creator of the page gives extended family, friends and support group members the name of the page. After filling out a simple registration, others can access the page, post messages and opt to receive e-mail notifications whenever the page is updated. During phases of intensive treatments, the CarePage is a valuable resource for disseminating information quickly and easily to many people. Bradley’s condition was so rare, I found CarePages to be a gold mine of the type of information the doctors did not provide. Buried in these family-generated mini-documentaries, I found many tips and tricks for dealing with treatment side effects, better explanations for some of the procedures than those the doctors gave, previews of what we could expect if certain medical events occurred, and most importantly, insights into how young adult cancer patients feel and what they want.
I would like to create a CarePage for Bradley now, in his memory, for the benefit of others fighting ES/PNET. To create this page, I will collect our family calendars, Day Planners and notebooks and printouts of posts made to support groups. I will use the daily journal format to organize the information according to the phase of treatment. One day’s entry will describe the diagnosis phase, including which tests were done and what they proved. The next entry will provide the outline of the standard Children’s Oncology Group (COG) protocol for Ewing’s Sarcoma. I will proceed in a similar manner to provide the full chronology of Bradley’s treatment, including all appointments, details of each round of chemo, tests with results, when and why he needed transfusions, planning for and then undergoing surgery, how the decision was made to do radiation, and the aftereffects of the radiation. These details may seem dry and boring to most people, but those of us dealing with rare life-threatening diseases spend hours on the Internet searching for just these types of details and the unique perspective they offer. I did attempt to start the CarePage shortly after Bradley’s death; however, I found just the act of pulling out my old Franklin Covey pages was too gut-wrenching and I wasn’t able to continue. Since this will be an extremely emotional experience, I would focus solely on this activity for one week with no other obligations. There is no specified timeframe during which this must be done. I would likely work on the CarePage at the RMH in order that the families there can observe how it is done and ask any questions they might have.
The above projects are all related to improving the quality of life of sick children and their families, cancer patients in general and sarcoma patients in particular. The work of cancer-related non-profits is never done, so the timeframe for each is flexible at this point, except for the Team Sarcoma ride, which is always in July. I would have a unique opportunity to work with others who are passionate about finding cures, sharing information and simply helping others go through treatment with dignity. It is my belief that any act that contributes to the well-being of one individual benefits the community in which that person lives. Stronger individuals build stronger communities.