Mom as an Advocate

by Jean Ellsworth-WolkJuly 4, 2019View more posts from Jean Ellsworth-Wolk

My journey as an AYA advocate/nurse/mom began 12 years ago in tears on a surgical waiting room bathroom floor.

My 19-year-old daughter had gone into a routine surgery with a presumed diagnosis of a large fibroid and came out with the life changing diagnosis of dysgerminoma (germ cell ovarian cancer, female version of testicular cancer).  After the surgeon had turned our world into chaos with this diagnosis ,  I needed to find somewhere to hide, to wail, to comprehend what had just happened and the closest place was the bathroom which I could lock.

So there I sat cramped on the floor, an oncology nurse for over 30 years and I had never heard of dysgerminoma.  From that moment on I have been on my journey as an AYA (adolescent and young adult) advocate within the adult oncology world.

My daughter’s journey has not been easy, but she is “cured”.  She has been left with some long-term side effects, like possible infertility and a body, as she tells it, “like a 70-year-old”.  But I have watched her grab life and do it her way by making choices I don’t know she would have made if cancer had not touched her at an early age. Silver lining maybe?  I don’t know, my jury is still out on that one.  But what I do know for sure is that one of my long-term side effects was being angry at knowing how little support and resources there were at the time for young oncology patients and their parents/caregivers.

Since that fateful day on the bathroom floor I have become a woman with a mission. And there is no passion like a mother advocating for her child.

So where to begin?

It only makes sense to start where you are.  So, my start was more tears whenever I saw a young adult patient at our adult oncology center.  A little PTSD maybe?  I saw these young adults trying to disappear in our infusion suite. In the corner, headphones on, chair, curled into a ball, eyes closed waiting for their nightmare to be over.

And next to them was a mom…or dad…or sometimes a husband or wife looking lost, and afraid but trying so hard to be brave for their loved one.  I knew I had to make it better for them.

So, I just dug in…in my job as a cancer survivorship coordinator I met with adults’ patients at the end of their treatment to discuss the importance of self-care going forward.  But with the young adults I met with them early to do a number of things. I offered them a list of the increasing number of AYA resources, I offered validation of the insanity of getting cancer as a young person and I offered a shoulder of support for the parent/caretaker. I stressed the importance of meeting with me following their treatment for a “survivorship visit” to plot a plan of health going forward.

From there I began advocating for them wherever I could.   I made sure they were offered the opportunity to preserve their fertility.  I educated and educated and educated my fellow health care professionals about AYA needs and differences. I presented at my national professional nursing organization about strategies to improve AYA care within the adult oncology world.   I made sure our cancer center used standards addressing the unique needs of the AYA patient.

I stalked people who may have an interest in AYA or could help develop a larger program at my hospital.  I became known as the nurse who always brings up AYA in any oncology conversation.  I have even become a life coach to help AYA patients after treatment get their lives back on track and make sense of their cancer journey.

And I am so not done.

We have a long way to go in many different areas, but I am starting to feel traction finally.  When my daughter was diagnosed, there were very few resources available for AYA, but now it is a crowded field, about time, right?

So why am I writing this?  I believe that the story of how my advocacy journey began is both uniquely mine as well as a common one and I hope it will help others to know they are not alone and perhaps even serving to inspire their own journeys.

We always need to tell our stories to heal, and I continue on that road as I watch my daughter navigate her emerging world that is not the one I had hoped for her.   I also hope by sharing my story  I will find more allies as I have found in Angie Giallourakis and the Steven G AYA Cancer Foundation staff  because it is always better and more fun with friends along to help.

There is power in numbers… as in “The Herd”

As I said before, we have a way to go before I will say that the AYA patient and their caretakers have what they need when the surgeon comes out of the operating room with the life changing diagnosis of cancer.  So please join me, my friends on this journey to make it a reality.

PS…I also want to take this opportunity to thank the Steven G AYA Cancer Foundation for providing Wellness Bags for the AYA patients  at my cancer center.  This huge goodie bag is filled with things that are geared toward a young adult going through treatment and is amazing.  The look on the faces of the patients when I give it to them is one of joy and happiness and it might be the first time, they have felt that in a while.