Saturday, July 13, 2013


By Shannon Wilkes
From DHOH’s Voyager Newsletter
July 2013 Inaugural Edition

When I was a little girl, one of my biggest fears was waking up in the morning and discovering my hair was no longer attached to my head. For some reason I was under the impression that is how you knew you had cancer, because your hair started falling out! Don’t worry; soon my fears were dismissed with some solid advice from my wise mother.

As I got older, I adopted one other, more common, but still just as faulty, assumption about cancer. I thought that cancer was something only kids or old people got. This time I got to learn firsthand that I was mistaken.

It turns out, according to the National Cancer Institute, that 70,000 adolescents and young adults are diagnosed with cancer every year in the United States. Because there are enough people who identify with this group and acronyms seem to be the “in” thing these days, the NCI decided for simplicity’s sake to call 15-39 year olds with cancer AYAs. The diagnosis, treatment, coping, and support system of this age group is tricky as it is severely unique when compared with children and older adults. Adolescent and young adulthood is usually a time when one is becoming independent from his or her parents, finishing school, starting a career, getting married, having kids, establishing one’s self, etc. Cancer is challenging, to say the least, for any person, but there are unmistakably distinct trials for an AYA due simply to his or her stage of life.

In October of 2008 I unexpectedly became part of this unusually complicated, problematic group of people with the diagnosis of osteosarcoma, a type of bone cancer. It has been and continues to be an incredibly difficult journey with a mountain range of ups and downs.

I am 24 years old now and have had the privilege of being treated in the pediatric units of Akron, Ohio and MD Anderson in Houston, Texas. I could not ask for a more competent, compassionate, loving, and knowledgeable group of people to care for me in both of these hospitals. But even with this unparalleled medical treatment, I could not find local, non-medical support geared towards AYAs in the hospital or various surrounding organizations.

After five months of being treated at the children’s hospital in Akron, Ohio, my oncologist humbly suggested, due to my advancing cancer, I see somebody who specializes in sarcomas. My parents and I headed down to MD Anderson in Houston in early 2009 and I have received my primary medical regiment and treatment plan from there for the past 4 years. When a certain treatment can be administered in Akron, we are home. When I need to receive a trial drug, radiation, surgery, or less accessible chemotherapy agents, we are in Houston. We have spent around 25 weeks living in a state that is very far away from our support system.

Because of the expertise of this hospital, people come from all over the world to seek live-saving cancer treatment. This is an incredible gift, but not without a cost. It is exceedingly difficult for friends and family to travel across the United States or the world to escort or visit loved ones. To accompany the dreadful side effects of whatever nastiness is being forced upon one’s body, the distance only adds isolation and dreariness to these prolonged Houston trips.

An already isolated group, as mentioned previously, AYAs are in dire need of community and support during their time in Houston getting scans, anticipating and/or receiving life-changing news, or doing various treatments, whether that time is 3 days, a couple weeks, or months.

There are really some great options that provide AYA support at MD Anderson, including an AYA only game room called “Kim’s Place” and some coordinated social outings through the Cancer180 program. But these options do not compare, in my mind at least, to the hugely significant project that Dawn and Roger Kenneavy are strongly attempting to make a reality.

We met Dawn and Roger in 2011 and learned about their lives and their pursuit of an AYA hospitality house. Their son, Dan, who passed away from osteosarcoma in 2009, experienced a similar lack of community support during his treatment that I was and still am currently experiencing. Instead of simply continuing to allow this common need to be overlooked, we learned that this couple is passionately working to change it through establishing a hospitality house for AYAs called Dan’s House of Hope.

Immediately upon hearing this amazing idea that would undoubtedly provide much needed social, emotional, monetary, and spiritual support to 17-39 year olds with cancer, my parents and I were completely on board.

I have spent over 25 weeks in Houston over the course of 3 years and it was not until my most recent venture down there that I truly felt the impact of the importance of community. Assuming the model of our many previous Houston stays, I just assumed this trip would be characterized by a nice, healthy dose of loneliness and isolation. But this time was different.

I’m not even sure how it happened, but during the 5 weeks we spent in Houston we had the privilege of interacting, to differing degrees, with 4 other AYAs. A couple of these interactions were short in duration because they took place in the waiting area. But they were incredibly significant in that a long conversation took place in which we exchanged stories, talked about chemo, side effects, surgery, school, living with an unexpected illness, and God. When you run into another person facing such a similar circumstance, it is easy to get in a deep, meaningful conversation very quickly.

The other interactions turned into more permanent relationships. The first was a 16 year old girl and her parents that we happened to start talking to in the waiting room. We discovered that we not only had the same type of cancer that was acting in very similarly abnormal ways, but also that we both lived in northeast Ohio and were treated at Akron Children’s Hospital. After this discovery, we exchanged numbers, had a couple meals with them while in Houston, and continue to keep in regular touch and pray for each other. It is wonderful to be able to talk with and mutually encourage somebody in such a similar situation.

Lastly, we had the privilege of being introduced by a mutual friend to another AYA. She is 32 years old, married with 3 kids, lives in northeast Ohio, and going through treatment for a type of leukemia. Our family has formed a relationship with her and her family that is so special and encouraging. While in Houston we spent time together, talked about things that people at home couldn’t possibly understand, shared meals, went on walks, helped each other out with various issues, happily babysat her children, and discussed life and death from an eternal perspective. We continually keep in touch through texting, calling, and occasional visits.

It may not seem like a huge deal, but these new relationships made a world of difference. Simply having these few folks available to talk, discuss treatment, hang out, and cry with completely changed my Houston experience. Interaction with and encouragement from other AYAs helps me to keep fighting. I could offer advice and get advice. That is true community.

Living in the same house would only enhance this community. I cannot wait until Dan’s House of Hope’s is completed so that each time I have to go get treatment in Houston I will have the opportunity to be with other AYAs, participate in support groups and activities with patients who are in my age group, cook in an actual kitchen, watch movies with new friends after rough treatment days, have a house to come back to instead of a puny hotel room, and play board games with groups of people. It will be more like home.
The dreaded Houston trips will not be so dreaded after all as Dan’s House of Hope opens new doors that will ease the isolation of young adults like me who are battling cancer.

(Dan’s House of Hope is scheduled to expand services in 2013 through a combination Bed ‘n Breakfast / Programming Community Center. Your caring support will help make this available as quickly as possible for Shannon and so many on a similar journey. Please give generously; your support makes a world of difference!)