When we decided to interview Summer Hall Farmen about her personal journey (that includes being a mom to an adult son with severe cerebral palsy), her journey with ALK-Positive lung cancer, as well as her active involvement in our organization (Board member, ALKtALK Healing Arts program, fundraising, and Summit Committees, to name a few), we didn’t realize we were in for another treat. Summer’s interview didn’t just give us a good glimpse of her own life. It also helped us get to know another prominent ALK member whose life is tightly connected with Summer’s life - her father and active member of the ALK Positive Medical Committee, Ray Hall. As we got to hear and learn more about this father-daughter duo and their partnership to give Summer the longest and best life possible as an ALK patient, we were reminded of the values of family, commitment, perseverance, dedication, and above all – love. And we couldn’t have imagined a better interview to accompany our Lung Cancer Awareness Month 2023 newsletter.

A photo collection of Summer and her family - children Harrison, Lucy and Jackson and her husband, Jeff.

1. Tell us a little about yourself, your personal and professional background, and your journey with ALK-positive lung cancer so far.

Summer Farmen. 47 years old. Diagnosed at age 44 in the height of the pandemic on my 21st wedding anniversary. I grew up talking about cancer at the dinner table. My father (editor’s note: Ray Hall, one of the most active and prominent members of the ALK Positive, Inc. Medical Committee) began working in sales for a pharmaceutical company following college graduation, eventually becoming one of the company’s Medical Science Liaisons (MSLs). He was one of seven in the company who worked with oncologists to facilitate investigative studies and clinical trial development. We talked about cancer like a mechanic’s family would talk about cars. Our family was well versed in cancer lingo. Our vocabulary included words like benign, malignant, metastatic, and remission. All the while we were shown what words like perseverance, dedication, and determination looked like in real life. My father was in a “heart-breaking” industry, but he was full of hope.

I did not stray far from home after college. While my siblings moved out of state, my husband and I moved down the street. We quickly made my dad a grandfather with the birth of twins. The boys were born four months premature, and shortly after their birth we gained a guardian angel. Our surviving son had a tumultuous five-month hospital stay. I used this time to learn everything I could from my son’s physicians, working as a team with the medical staff, as I had seen my father do in his career. Since my husband’s job did not offer much flexibility, it was my father who would race me to the hospital in the middle of the night when my son was struggling. My father quietly supported me as I inquired, prodded, and advocated. I had acquired the commitment that my parents had always modeled. As my son grew, his needs changed. He became healthy and strong, and witty and smart. He required a wheelchair and used gestures and facial expressions to communicate. My father continued to show up. He would attend appointments and procedures with me when my husband could not. As our family grew, my father was ever present in every way.

Summer and her father, Ray Hall, at the 2023 ALK Positive Summit in Philadelphia this past July.

Eventually my husband’s job took us out of state. It was an exciting adventure that we all wanted my parents to be a part of. My father’s work territory included our new state of Pennsylvania, so after a year apart my parents relocated to a nearby town. In 2017 my father retired from his career as an MSL but never seemed to stray far from the oncology world. Whether working as a consultant or advising others, my father always seemed to be “on call.” My father was the person family and friends went to when faced with a devastating cancer diagnosis. He often coached and counseled others through the “now what” phase of their journey. In May of 2020, in the middle of the pandemic, my parents arrived home from their seven-month sailing voyage up and down the East Coast. My family was elated! Meanwhile, my pandemic cough continued to worsen, and my doctor prescribed new medication for my asthma. Although I was still able to transfer and carry my 19-year-old son around our home, my shortness of breath was causing me to struggle. It all came to a head on June 24th when I had a CT scan and was immediately sent to the emergency room. My family was baffled, and my parents gathered with my husband and children at our home to wait for the news. One of my lungs was crushed by pleural fluid. Once the fluid was removed, both lungs and surrounding lymph nodes displayed a portrait splattered with tumors. I caught the pulmonologist off guard as I asked for benign reasons for this. I questioned malignancy and metastasis. The physician looked around and asked who I had been talking to. After I confessed that it was my upbringing, it was admitted that, sadly, there weren’t many benign causes for my imaging that belonged to a healthy 44-year-old without a smoking history. I remained calm as I called and spoke to my husband and parents, but my father struggled as the caregiver. He was at a loss. He couldn’t offer solutions or remedies - he was suddenly in a role he had been built for but hadn’t yet had to occupy.

The next few weeks were a whirlwind, and, although my health was deteriorating, my concern was for my family. This of course was when they all rallied, each in their own way, helping me and helping each other. With my mother’s encouragement, my father snapped into gear. His mind began racing, and plans started formulating. As my lung cancer diagnosis was confirmed my father coached my husband and myself, as well as our family and friends, about our next steps. He taught us about genetic mutations and biomarker testing. He explained targeted therapy, immunotherapy, and chemotherapy. He contacted his old colleagues including thoracic oncologists and others in the pharma industry. He accompanied me to my appointments so that my husband could care for our children. As my pleural effusion dried up and my targeted therapy began to take effect, my father began “walking me” daily to alleviate leg pain and water retention. He called me twice a day for my pill reminders and even brought over high fat meals for maximum pill absorption.

As we navigated my new life with stage IV lung cancer, my father and I joined the ALK Positive Facebook support group. The group deepened my father’s knowledge but also brought patients’ faces to the forefront, which was both a blessing and a harsh reality. Commenting in the daily threads quickly proved not enough for my father. By November 2020 he had joined two ALK Positive committees that focused on research and clinical trial development. He would sit in multiple meetings each week working with ALK experts and researchers to push the envelope of treatment options. Of course, my scans and appointments would always take precedence, with my father driving me two hours one way to meet with my oncologist.

In June 2021, as my one-year Cancerversary approached, I began to notice the same symptoms I had experienced the year prior. . . in my father! My healthy, athletic 67-year-old dad was suddenly short of breath when simply talking or laughing and was getting worse by the day. It was my turn to step up to the plate and make phone calls, secure appointments, and devour research. After months of a variety of tests my father was diagnosed with nonspecific interstitial pneumonia (NSIP), a progressive lung disease. Despite this diagnosis and debilitating symptoms, minimized with steroids and daily medications, my father’s commitment to me has not wavered. He continues to take me to my quarterly scans and appointments and to remind me to go for my labs. He is now actively involved in three ALK Positive medical committees, reviewing research and participating in meetings and phone conferences almost daily.

In the summer of 2022, we traveled to Denver together to attend our first in-person ALK Positive Summit. I beamed with pride as my father sat on the stage as a panelist with other ALK positive committee members and global ALK experts. He is not just making a difference in my life but also in the lives of thousands of ALK positive patients around the globe. This tale is more than simply about the role of my caregiver during my lung cancer journey. To start at the point of diagnosis would be telling a watered-down version of our story. Ironically, I always feared that my father’s career was preparing him for something more. I would have never guessed it would be to assist me in the fight of my life. My parents gave me the most amazing roots and big breathtaking wings. But from the moment I was born, my father has been that wind - the wind beneath my wings.

Other fun facts: my initial college major was pre-Law, but I soon switched to Special Education. I finished my master’s degree in reading soon after I was married, and I was about to start my PhD in Curriculum Development when we found out that I was pregnant with twins, and I decided to put my education on hold. Once Jax came home from the hospital, I never went back to the classroom. This was all by the age of 24 - ha! I switched to working part time in Early Intervention, and though I spent many a year as a behavior specialist, most of my career has been doing in-home developmental evaluations for the birth-to-3-year-old population,.. still all the while being an education and medical advocate for my almost 23-year-old with severe cerebral palsy. We also have a 20-year-old, Lucy, at Penn State, majoring in bio-behavioral health, who hopes to be a Physician's Assistant. She came to the Summit with me this year and worked as a volunteer. She has also volunteered at Dan and Britt Wilson’s Links for Lungs for the past three years and is very close with both of them. All because of my lung cancer. Lucy was also a traumatic birth, abrupted placenta, and emergency c-section. So, we took a break after her, but for years I begged my husband for another, and we eventually had Harrison, who is 14 and is in 8th grade. After a life of competitive cheer with Lucy, I am having the time of my life as a football mom.

My husband sells joints,.. well, hips and knees for Depuy Orthopedics. He began his career selling beer in Rochester, NY, but joints brought us to Hershey 15 years ago. We started dating in 1994 when I was 17, and he's survived my craziness for almost 30 years. Although it hasn't always been easy, we work together like a smooth oiled machine, working together and taking turns caring for our children, especially Jax. Cancer has totally put a wrench in what we thought our future would look like. We planned on growing old together, all three of us, Jax, Jeff and I, maybe traveling the country in a handicap-accessible motor home or something, moving between Lucy and Harrison, wherever they end up. Now,.. we don't tease about those plans like we used to, now we live for today. My kids were never used to seeing me sit still. Prior to kids, I was a fitness instructor when I wasn’t taking college classes or teaching. That fizzled out once I had the twins. I didn’t formally instruct again until the Zumba craze soon after Harrison was born. I did that for a few years but gave it up to coach cheerleading, youth, middle school, and then Varsity. I volunteered for everything at my kids’ schools, every field trip or room mother activity. I worked part time so that I could participate. I believe that seeing me become sedentary when I was first diagnosed was as traumatic for my children as if I had lost my hair to chemo.

Once my first TKI kicked in, I was more myself, but I still struggled. I could walk a few miles, but my legs hurt on the stairs. I could still transfer Jax, but it wasn’t easy. I would have found a way to make that work; however, my liver didn’t like that TKI, so after playing with doses for 6 months, I ultimately ended up switching to the sister drug. And that was a game changer for my family; they could begin to forget I was sick. I was back to carrying 20-year-old Jax up and down the stairs, and I am as close to baseline as ever.

I made that switch in February 2021, and I hope to continue this part of the ride for as long as possible. So, during that sedentary phase, Lucy was home quarantining during her senior year. From the beginning she was very involved in my diagnosis. We watched Dr. Camidge ALKtALK together and had no idea it was a new thing, thought ALKtALK had been around forever. We were amazed at what was coming through our screen. As we watched the hosts, I knew I would become involved, and I knew these people would ultimately become my friends. And how right I was – Gina (Hollenbeck) and Marc (Rosenzweig) did become my very dear friends. Soon after that first ALKtALK, I remember telling Lucy that there was a zoom art therapy class. Lucy yelled at me, “Are you just going to keep sitting there, or are you going to get to class?” That was my gateway into ALK Positive. I found my people, and I never looked back,.. though I quickly became involved and eagerly began giving back! I started with Summit Committee 2021 and got more actively involved for Summit 2022, began helping Marc develop the Healing Arts Curriculum and Calendar and the mission statement. Then I began working with Gina and Marc on ALKtALK programming, and we needed to keep it running,.. website, YouTube, MailChimp…

I joined the ALK Positive Board of Directors in December 2022. I traveled to Nuvalent last November to speak to their team with two other patients, and I am honored to be going again in a few weeks. I spoke at Foundation Medicine for Lab Professionals Appreciation Week last April. I absolutely love expressing gratitude while bringing tissue samples to life and driving home the significance and importance of their work. I have also worked with American Lung Association to assist in advocating for more research dollars and preventative screening. I could go on and on…

2. What do you know now that you didn't know back when you were first diagnosed? What advice would you give a newly diagnosed patient?

I already knew what receiving soul-crushing diagnoses was like. I knew how to be an advocate. I did not need to learn this lesson,.. ha! But, of course, there was an extremely valuable lesson to be learned that I preach to every patient I meet: YOU ARE NOT ALONE! As outgoing as I am, I was always a lurker on list serves or Facebook groups when dealing with Jackson’s cerebral palsy. My husband and I never had outside help with Jax other than traditional babysitters. However, dealing with a terminal illness is another ball game, and there is ZERO reason for anyone to carry this burden by him/herself. That is why I have become so actively involved in ALK Positive, Inc. as a Board member, working on committees, and primarily working with ALKtALK and the Healing Arts. As close-knit as my family is, it does not replace the bond we have with those walking this path.

3. Can you tell us more about the decision to go on Brigatinib as your 1st line treatment? What are your side effects and quality of life on it?

In August of 2020 I began treatment on another TKI; however, my liver enzymes quickly reached unsafe levels. I titrated down the dose for a few months and even took a drug holiday to curb the toxicity, but my efforts were unsuccessful. While I had a complete metabolic response on this drug, I did struggle to lift and transfer my then 20-year-old son. I did not like this, but I was alive. However, once I switched to Brigatinib in February 2021, I started to get my old life back. I am just saying that this brings in waves of emotions. Within weeks I was back to carrying Jackson back up and down the stairs, and, with some effort on my part, I eventually became as close to my baseline as I may ever be. My kids get to see their once active mother back in action. Of COURSE, keeping it completely real, I am ingesting a potent chemical concoction that has my cancer hibernating, so, of course there are side effects. I struggle with fatigue, rashes and such, but all of it is much more manageable for me. I hope to ride this Brigatinib train as long as I can!

4. You are very involved in the organization by participating in the Board of Directors, but also in our ALKtALK program, Fundraising Committee, and Summit Planning Committee. How has this involvement benefited you, and has it given you a new sense of purpose?

The time I give volunteering I receive back two-fold. This ALK community and all those I meet, who strive to assist us, are my new inner circle. They are my lifeline. After my first season helping with the Healing Arts programming, my then 11-year-old Harrison asked if this Zoom channel was going to fade out like the NBA season. Absolutely not Harrison! I am very cognizant of keeping my family front and center - they are my priority. However, my ALK family is close behind, and helping in bringing information, options, community, and mental health support to this family is my major focus.

5. As an active volunteer yourself, would you encourage others to volunteer, and what would you advise someone who may want to volunteer for ALK Positive, Inc. but doesn't know where to start?

If you have the time and desire to volunteer, what's stopping you?! Whether with ALK Positive Inc., another organization, or even informally sharing lung cancer facts on your social media platform, giving back to the lung cancer community is therapeutic, empowering, and healing when living with this deadly disease. What can you do? Perhaps, you have an idea for a Healing Arts Class? Knack for fundraising? Excel at marketing? How about responding to posts in lung cancer support groups and sharing your experience with a patient in need or sending a private message to an ALK community member who seems to need support?

(If you’re interested in volunteering with ALK Positive, Inc., please email info@alkpositive.org )

Interview by: Christina Weber

Patient Spotlight: Summer Hall Farmen, Hershey, Pennsylvania