The more I read, the more I realized, patients and their families are often too drained dealing with the disease and treatments to find the energy to drive fundraising for more research. I vowed to Xan that I would do all I could to help raise funds because I knew this was key to extending his life, and I believe it did.
It was easier to raise funds for Yes We Xan in the beginning because, family, friends and colleagues readily donated to show their support and love for Xan. In all our fundraising efforts, we educated potential donors about how PanCAN has helped our family: from the Know Your Tumor program, to the webinars to the patient support services.
We emphasized how PanCAN has made a real difference in our lives. In 2016, Xan's brother and his wife helped by asking for contributions to PanCAN in lieu of wedding presents, and hosted our own walk in Maine the morning of their wedding.
In the ensuing years, we emphasized the courage and determination Xan brought to each day, to withstand the grueling treatments, to live life fully, to not give up. We spoke of the importance of PanCAN's Know Your Tumor program and how it helped Xan and his healthcare providers decide on treatments after the cancer metastasized in 2015.
We spoke of Xan's personal successes, including the birth of his beloved son. We spoke of the reality of Xan's life ... that he did not have the luxury of quitting, and implored our family, friends and colleagues to continue to support us.
In early 2019, Xan developed brain metastases, and PanCAN has been by our side throughout the journey. In March, Xan participated in the Know Your Tumor program a second time with tissue from the brain tumor.
This was especially significant both for Xan and for researchers because less than 1% of pancreatic cancer patients develop brain metastases, and also because young adults with pancreatic cancer often do not have the KRAS or BRCA gene mutations. Learning what worked in Xan's treatment could help young adults all over the world.
When Xan had his recurrence last summer, PanCAN's Patient Services staff provided us with information and resources. In June 2019, Xan's wife participated in Advocacy Day in Washington, D.C. While there, she met a physician/researcher from MD Anderson Cancer Center who was particularly interested in Xan.
Heartbreakingly, Xan died the day before Thanksgiving, five years and 16 days after his original diagnosis. He was so proud to have reached the 5-year mark. He tried so, so, so very hard to beat this horrific disease, but in the end, the cancer proved too much.
After Xan's death, as I navigated my grief, I felt that I did not have the energy or the will to continue the We Xan team. But as the months have gone by, I realized what an insult that would be to Xan and his memory.
Xan never gave up fighting for his life. I know now that I will never give up raising funds and awareness in hopes that research will yield more treatments and better outcomes, and fewer families will have to endure what we have been through. Yes We Xan, my beloved son, Yes We Xan.
Husband. Caregiver. Widower. Advocate.
Unfortunately, many who read this article are, or have been, on a similar life path. I wish it weren't so, and that is the reason I'm writing my story. Our story. But wishing and doing are at two very different ends of the spectrum of caring. For me, while deeply sentimental, I need to get to a place that inspires hope.Read More
In 2013, Linda, my beautiful wife of 40+ years, began to experience acute pain in her abdomen. Over the next several months and multiple trips to the ER without finding definitive answers, we sought a more accurate diagnosis. The following spring, she was diagnosed with pancreatic cancer and was fortunate enough, as we'd learn later, to receive the Whipple surgery.
During the fall of 2014, we attended our first PurpleStride event. While there must have been nearly a thousand people in attendance, the survivors' tent told the real story – a little cadre of five people were huddled there. Surreal.
The stats were grim in 2014 – 5% survival rate after 5 years. In the advanced scientific era we live in, how could this be? How could this be the reality of a generation raised on moonshots as its expectation?
Our journey continued, and along the way, we'd figure out how to best love, care and deal with the progression of this brutal disease. Until we weren't able to anymore.
Until just before PurpleStride 2018, the sad reality of pancreatic cancer had left us wondering what's next, what more could we have done? What more can we do now for others?
I wanted to figure out how to honor Linda with whatever my best efforts might be. PurpleStride was a start. Pancreatic Cancer Awareness Month in November allowed me to share our story in media interviews. And I began to think of how I might help in other ways to raise support and funding for next year's PurpleStride.
It meant finding my personal 'why' – why I am doing this.
Initially I thought, I don't particularly like raising money, but I love sharing our story. I gathered my list of people I knew, thought of those who may have experienced loss themselves, prepared my introductions and 'asks' and then said to myself, "This is for my bride!"
I prepared myself for personal rejections, but I hadn't prepared for others telling me how they'd love to be a part of this cause. I saw people I knew and those I didn't literally open up to me in ways I'd never expected.
Some continue to leave me nearly speechless with their impact on my life. Good people were waiting to be asked to say, "Yes, certainly. I'd like to help."
At last year's Advocacy Day, my daughter Claire and I joined an Iowa delegation in Washington, D.C. We told our story to Congresspersons as members of one of the most powerful advocacy groups I've ever been involved in. Emotionally, it was so embracing. Our voices were heard. Hope was nearly palpable.
Recently, the 5-year survival rates for pancreatic cancer increased to 10%. Still incredibly meager. But I believe our cause will begin to see forthcoming great results – a doubling, doubling again, and then, momentum until this disease is successfully dealt with ... and surviving is ... our promise.
To say Jim and I were close probably doesn't do our relationship justice. Jim and I had either lived under the same roof or within three blocks of each other for nearly our entire lives. My wife, Julie, and Jim's wife, Lisa, were even best friends before we met them.
During Jim's last few days, there were a couple of thoughts that I could not shake. One was the thought I had failed my brother by letting the hopelessness of his diagnosis overcome me to the point I hadn't sought out more information on possible treatments or care. The second thought was that Jim's passing would not be the last time my family heard from pancreatic cancer.
After Jim passed, I promised myself that if pancreatic cancer ever did make another unwelcomed appearance in our family that it wouldn't be because I hadn't tried to make a difference. I began to search on the Internet for somewhere to focus my efforts and as soon as I saw the WAGE HOPE logo on the PanCAN website, I knew that I had found the place for me.
Along with Jim's wife and kids, Jimmy and Sarah, we decided to first get involved by forming a PurpleStride team for the 2015 event in Washington, D.C. We used Jim's nickname to create Team Big Jim.
That first year, we held only one fundraiser but were fortunate to raise over $5,300 through the generosity of Jim's family, friends and coworkers. Since the first year, we have held numerous fundraisers including a wine tasting, jewelry sale, Super Bowl squares pool and Kentucky Derby contests. We have even sponsored a TeamBigJim.com horse race at Charles Town race track for the past four years to raise money and awareness.
After the PurpleStride walk each year, we host a pool party at my home for all Team Big Jim members and donors where we serve crabs, burgers and chicken.
In the 5 years that Team Big Jim has taken part in PurpleStride Washington, D.C., we have raised over $61,000. I have always set our goal to raise $1 more than the prior year but this year I have set our sights a bit higher.
Our goal for 2020 is to raise $20,000 and for the first time reach the Elite team level. My second goal for this year is to take part in Advocacy Day for the first time.
Unfortunately, our efforts thus far have not kept pancreatic cancer from entering our lives again. In the years since Jim's passing, we have lost an uncle, a couple of friends, and just this past July, my daughter-in-law lost her father to pancreatic cancer.
He passed away just 10 days after his love for his daughter gave him the strength to walk her down the aisle to marry my son. My wife and I honored his battle against the disease by joining Team Babak in their walk at PurpleStride Maryland.
The recurrence of the disease in our family's lives has not broken our will to fight. Instead, we take solace in knowing that the progress PanCAN is making in awareness, research and treatment has helped those we love and everyone impacted by the disease.
Over the years, we talked about everything our daughter and two sons, our grandchild, our love for each other and our shared passion for helping other people.
We always wanted to help and it felt good to do it and do it together.
We were at a charity walk when I noticed something was wrong with Laura's eyes – they were yellow.
The following Monday the doctor told us she had pancreatic cancer and that she'd need a Whipple procedure. We were both shocked.
The doctor told us to stay off the internet but we didn't listen. That's how we found PanCAN. I called Patient Central right away.
I told them what was going on, and they sent me a package in the mail. It had a booklet in it and a bunch of information about pancreatic cancer. They were great. I learned about PanCAN's PurpleStride walk/run events and we registered for PurpleStride Jacksonville.
Everyone was so happy there. Laura was able to get up on stage and tell everyone that she was a survivor. I was so proud of her.
That first year, Team Laura raised $2,500 – five times our fundraising goal. Our second year, we raised $3,000.
Laura did end up having the Whipple procedure, two of them actually, but neither one was successful. Her doctor put her on supportive care to keep her as comfortable as possible.
That's when our Patient Central case manager suggested some clinical trials she might be eligible for, but she had to finish up her chemo treatments first.
Laura never got the chance to start a clinical trial. And she didn't make it to the 2019 PurpleStride Jacksonville. But her spirit was definitely with all of us on Team Laura.
Before she died, Laura made me promise to continue the work we were doing together. Now I'm the Jacksonville affiliate outreach chair and also a PurpleStride team captain. Spreading awareness about pancreatic cancer is my passion.
Laura made me promise and that's what I do now. I'm living for the promise.