Both Dan (the ALK patient) and Brittany (the spouse-caregiver) are actively involved in ALK Positive and are also this year’s ALK Summit Chairs coordinating our Summit in their home city of Philadelphia, Pensylvannia. We interviewed them both about their background, their life with ALK, and about how their volunteer activity has enriched their lives.

Tell us a little about you guys - your personal and professional backgrounds and your journey with ALK-positive lung cancer so far, from the patient and caregiver perspective, as well as that of parents to young children.

We are high school sweethearts that have been together for over 20 years now—Crazy right?! Brittany is 36 and Dan is 39 with two girls aged 9 and 6.

Brittany- I am a STEM teacher that teaches grades 1-6 and before that, I was a special education teacher. I switched jobs a little over a month before Dan was diagnosed and it was perfect timing. I was able to continue working without taking any leave of absence. When Dan was diagnosed at 34, we were obviously devastated, shocked, sad, angry, all of the emotions came forward. We were so young, had a 2- and 4-year-old and had our whole lives “planned out”, but that all froze. Time stopped and we had to think about so many big things, the what if’s, trying to also keep things “normal” for our girls until we figured everything out during the “waiting game”. Our oldest was extremely preceptive and could tell things were happening that were not normal. We wanted to control the narrative she was given and didn’t want her to hear the word “cancer” in passing from someone else, so we told her. We answered and still answer her questions with age-appropriate honesty, which unfortunately is a good and bad thing as they get older. We have taught them that cancer looks different for everyone and the only way to help ourselves is to help others, too, so they are very involved in all our lung cancer related activities—and they wear it proudly instead of being ashamed.

Dan- I am a compliance auditor for a large financial company. Three and a half months prior to my diagnosis I left a role where I traveled 30-50% of the time. It was a true blessing to pivot internally to another role that only required local travel. My symptoms began as a chronic cold early to mid-November 2018 and would only progress to chronic cough and shortness of breath. Something as simple as carrying one of my children to bed or walking to my desk from my car went from an easy task to somewhat challenging. My ALK diagnosis was pretty quick after visiting the ER on February 1st, 2019 as the diagnosis came back on February 12th, only 4 days after a bronchoscopy. I am very fortunate to have a village of family and friends that supported us from day one of our journey.

What would you advise a newly diagnosed patient and their family/caregiver(s)? What do you know now that you wish you knew back when you first got Dan's diagnosis?

The biggest and most important thing is to find an oncology team that is interdisciplinary and includes social work, palliative care, a nutritionist as well as the oncologist. If your team doesn’t give you their cell number or doesn’t invest their time into you, then move on and find another. Use the social worker to help you and ask about grants that may help you financially, if necessary. It is okay to ask for help. Start with palliative care right away – it isn’t just for end of life. Get the second or third opinion – ask a million questions but record the answers on your phone or have someone other than you take copious notes. There is so much information coming at you at the beginning, you may think you will remember things, but it will be a blur, and you will be overwhelmed. It’s okay to be overwhelmed—but having those notes will help you later on to understand everything.

Tell your partner how you are feeling. Are you scared to die? Are you scared to raise kids by yourself? Then, come up with a plan for all those things to help get your life in order. Get your will in order, figure out what is going to help ease your anxieties a little bit.

Don’t keep the information hidden—share your story. The more people who hear your story, the more people you have in your corner rooting for you and your family. People will show up (or not show up) in times like this and may surprise you. Sharing your story will spread the word that we need more research. More research means more life.

You are both heavily involved in volunteering for ALK Positive, Inc. On top of organizing fundraisers, you two are this year's ALK Summit Chairs. Brittany also volunteers in back-office operations within the organization, whereas Dan also leads the ALKtALK "Men's Group". What has inspired you both to get so involved and donate so much of your time and skills to the organization?

Honestly, it was the first Summit after Dan’s diagnosis. It all started when we met Gina Hollenback and Amanda Nerstad at our first Summit in 2019. They both knew we were new to this journey and wanted us to feel welcome. We met so many people, which created everlasting memories and friendships. After that Summit, we knew we wanted to find a way to give back. It was the first time that we FELT the HOPE. We kept being told Dan hit the lottery of lung cancers, but we didn’t fully understand what that meant until we got to experience it. We cannot even express the relief it was to see people with stage 4 lung cancer living normal lives, amazing lives despite the horrible diagnosis that brought us together.

Has getting involved with volunteering for ALK Positive given you a new sense of purpose? Does it make it easier to cope with Dan's diagnosis on a mental and emotional level? And what has this year's experience of coordinating the ALK Summit taught you?

ALK has given us a family we never would have met if it weren’t for this crazy ride. It gives us and our kids a purpose to change the stigma, to show our girls that cancer stinks, but it doesn’t all have to be negative. We have made so many friends who are more like family, and it allows us to talk to others who are going through the same exact thing we are. We can lean on our ALK family just like we can our given family.

The Summit has shown us just how many HOURS and how much heart everyone puts into growing ALK Positive, Inc. The amount of effort that is put in on a daily basis is awe inspiring and until you are actually knee deep in it, you would never know because it is a well-oiled machine. In order to grow, and in order for research to help us, we need more people willing to volunteer their time. If it wasn’t for the volunteers and now for Ken (Culver, Director of Research and Clinical Affairs) and Lonna (Smith, Executive Director), there is absolutely no way we as a primarily patient-run organization could raise as much money as they do.

Interview by: Christina Weber

Patient and Caregiver Spotlight: Dan and Brittany Wilson Philadelphia, Pennsylvania, USA