Community Champion Scott finds Strength in Community
For the past three years, Scott Waldman has hosted De’s Memorial Block Party in Baltimore, bringing together friends and family from all over the northeast US to celebrate Denese “De” Waldman and the legacy she left behind. Scott is a fierce advocate for spreading awareness about cholangiocarcinoma (bile duct cancer), particularly among the medical community, to ensure that patients are diagnosed and treated sooner in their journey. We are so grateful for Scott’s dedication to our mission and to making an impact in the lives of future patients through advocacy and fundraising. No matter how you’re involved with the Foundation or where you are at in your cholangiocarcinoma journey, Scott wants you to know you don’t have to do it alone – “People want to help. Let them.” You can always find strength in your community.
1. Tell us a little about yourself.
I grew up in Glen Burnie, MD, a town just south of Baltimore City. My work with the federal government eventually took me to Washington, DC, where I lived for about 25 years. While in DC, I met my future wife, Denese (De) Murphy. De, who grew up in Greenwood, Indiana, was in DC attending the American University for her MS in fitness. She was one of the best athletes I had ever known and from the time we met, we constantly played sports together. De was actually training for a sprint triathlon when she was diagnosed with cholangiocarcinoma. Everyone who knew her was shocked by the diagnosis, especially because of her health and fitness routines.
After I retired from the government, we eventually moved to Baltimore City, which, even though we didn’t know at the time, ended up being a blessing, because Johns Hopkins was less than 20 minutes from our house, and that’s where De’s treatments began.
2. How have you been involved with the Cholangiocarcinoma Foundation?
Before I can answer this question, I need to provide some background. In August of 2020, Denese developed a rash. Over the next five months, we went to two GPs, a dermatologist twice, and an allergist. Not one of them could identify the rash. It wasn’t until the following December, when she was jaundiced, that a doctor advised us to have her liver tested. It was then that her cancer was finally diagnosed.
Anyone who has dealt with cancer, either themselves or with a loved one, is devastated by this news. And it didn’t help that the first surgeon we met with made the comment, Well, you would have been better off with…”, and named several other types of cancer.
But the oncologist at Hopkins was a positive type of guy who gave us some hope. We went over all of the treatment plans that might possibly help and we asked him if we should look into any clinical trials that might be available. He advised us to get in touch with the CCF for support and for further information. We did that immediately and the people at the Foundation couldn’t have been more helpful throughout her fight.
In May or June of 2021, the CCF was promoting a “Moving for the Cure” campaign, where folks were encouraged to organize a walk to raise funds for research. Without much notice, a friend quickly sent out word that there was going to be a fundraiser for the CCF in support of Denese. It was amazing to De and me how many of our friends, relatives, and neighbors showed up for the walk on such short notice. I believe about $11,000 was raised.
Besides Hopkins, De’s journey took us to the University of Penn and the University of Maryland to get further opinions from the oncologists there. After an unsuccessful operation to remove her tumor, radiation, and more chemo at Hopkins, she eventually was under the care of NIH, which was going to attempt a clinical trial with her. After a courageous battle, De passed away in February of 2022, at the too-young age of 55, before the trial could begin. Less than a year after she passed, I was sitting with some friends at a local pub, and we ended up discussing what we could do to educate doctors about this disease, and the idea of a fundraiser in De’s memory for the CCF was agreed upon.
We held the “Third Annual De Waldman Memorial Block Party” this past June. The event is what it sounds like – a party, which is exactly what De would have wanted. We obtain permits from the city to close the street next to one of the sponsoring restaurants and have a DJ, provide a couple of free beers or an orange crush for those folks who registered, a large silent auction, and well, have a party. Each year, we have raised over $21,000 at the fundraiser, which, combined with the 2021 walk, is close to $75,000 in total. The staff at CCF has been there with me every step of the way, providing handouts, awareness bracelets, and anything else we might need.
3. What has been the most meaningful part of your involvement?
The most meaningful part of my involvement is that as more doctors become aware of the symptoms of cholangiocarcinoma, perhaps it won’t take over four months for someone else to be properly diagnosed. If that can be achieved, then I believe that all of the work that my friends, family, neighbors, and I put into these fundraisers has been well worth the time and effort.
4. What message would you like to share with others in the cholangiocarcinoma community?
People want to help. Let them. None of the fundraisers would be possible without the help and generosity of so many people. The owners of the local pubs, restaurants, spas, hotels, our local brewery and a vineyard have been more than willing to provide gift baskets or gift certificates for the silent auctions. We have received many items of clothing for the auction from a major sports apparel company and one of the large Maryland colleges, as well as many other businesses. A national beer company has been one of our major sponsors. Then, the friends help with the logistics, recordkeeping, DJ, setting up the tents, etc. It has been heartwarming and amazing to watch everyone get involved to make these events successful. Along with the block party, we also ask for donations and I have been amazed at the wide variety of friends, family, and former co-workers who are spread all over the country and even Great Britain who have so generously donated. But, one has to ask.
5. How do you stay motivated and hopeful in this work?
If our efforts perhaps save someone else from going through what we went through and so many others have, being motivated hasn’t been an issue whatsoever.
6. Anything else you’d like to add?
At first, I was mad at God and asking the same questions that many of us ask after the loss or suffering of a loved one – “How could you let this happen?” But as I was preparing for the service that was being planned at our church and the Celebration of Life event after, I read this, “God promises a safe landing, not a calm passage.” (Psalm 27:5). It changed my thinking. I now thank God for sharing this incredible woman with me for almost 30 years. We never “move on” or “get over it.” That chapter of our lives will never close, but that doesn’t mean we can’t open new ones.
When you hear someone say that he or she would really like to do this or that, or go here or there, stop them and tell them to go or to do those things on their bucket list. Don’t wait, don’t hesitate. We don’t know what tomorrow will bring.
