In our most intimate ‘My Story’ to date, UV Skinz founder, Rhonda Sparks, talks frankly about the pain and fear she experienced during her husband, Darren Lee Farwell’s nearly five year battle with melanoma, the agonizing treatments he had to endure, the unimaginable decision he made to end those treatments, and where life has taken her family now.
Here is Darren Lee Farwell’s story.
How did Darren discover he had Melanoma? What type or stage did he have?
Darren discovered his melanoma when he noticed a small mole on his upper middle back began changing shape and size. He made an appointment with a local dermatologist to have it looked at. They did a local biopsy on the mole and it came back as melanoma. His original diagnosis was ‘melanoma 1a’, Clarks Level II, and a Breslow’s depth of .08mm. All of these original findings were considered very early stages and the only treatment was to excise the mole and the surrounding tissue. There was no follow up treatment recommended since, at that time, if the Breslow’s Depth was found to be below 1.0mm, nothing further was done. (I believe they now will do follow up treatment with a depth of .08mm.) This was in early 1997. In early 1999, Darren noticed a swollen lymph node on the side of his neck. The whole family had just gotten over being sick so I figured it was just his body’s natural reaction to a simple flu virus. He felt differently about the swollen lymph node. He felt he needed to go get it checked. Darren KNEW it was the return of the melanoma before even getting the diagnosis. He said he could just feel something wasn’t right. Waiting for the biopsy results seemed like it took forever. It was Friday, February 19, 1999 at 5PM when I finally called the doctor’s office and requested we learn about the biopsy results before we went into the weekend. It was then, over the phone, that the nurse said “I’m sorry, we thought someone had called you. The results came back positive for melanoma. This means that the melanoma is now at a stage III level and we will need to refer you to an oncologist.”
Needless to say, we were shell shocked. I will NEVER forget that day or that weekend as we barley could say one or two words to each other. We had two little boys at the time, Ethan and Seth, who were 3 ½ years and 1 ½ years of age, and all I could remember is watching them play and giggle and be filled with so much sense of joy while Darren and I lived in our heads with the ‘unknown’ looming in front of us. After the initial shock wore off, I immediately kicked it into high gear of researching and doing all that I could to discover what our options were to treat Darren’s disease. Interestingly enough, at the time, there was an article in People magazine about a new treatment they were trying for stage III melanoma patients at a hospital in NYC. It was a vaccine study started by a doctor named Dr. Malcolm Mitchell. I called the NYC hospital and started inquiring about the study as we were prepared to make the trip to NYC as often as needed as Darren really liked what we learned about this vaccine study.
What was the primary cancer treatment facility involved in his care? What were his treatments like?
As luck would have it, they had also opened up a leg of the study at University of San Francisco (UCSF) Hospital, which was only a few hours drive from us. I also, persistently (relentlessly!) tried to reach Dr. Mitchell personally and I was able to finally talk to him. I wanted to hear from the doctor firsthand about his study, his current findings, and what he felt the odds were. Of course he had nothing but great things to say, which had Darren believing in the treatment that much more. We immediately made an appointment to go see the doctors at UCSF and his primary physician at the hospital ended up being Dr. Kashani-Sabet, a renowned doctor in the field of melanoma. The study was a phase 3 randomized non-blind study, which meant half of the patients would receive the vaccine and a years’ worth of low dose Interferon and half would not receive the vaccine, but they would receive a 6-week treatment of high-dose Interferon that would mean they would have to stay in the hospital the whole time. Either options had brutal side effects, which we discovered once we began our journey, but before Darren could even be considered for the study, he had to have major surgery and have as much (or all!) of the melanoma removed as possible. This entailed a ‘modified neck dissection’, which meant they went into the side of his neck and under his armpit and removed a majority of his lymph nodes. It was a painful operation that took weeks to heal from and left him permanently deformed on the left side of his neck/arm area. I remember Darren being really bummed by this change to his physical body, even though for me, it didn’t matter one bit if it was going to save his life. In the surgery they found ‘two’ lymph nodes that were infected with melanoma. This information proved critical at the time for getting Darren what he wanted with regards to the treatment because to be accepted into the treatment, they take the findings from the surgery and biopsy and submit this info into the database and whatever criteria they used at the time, would put Darren on one side or the other of the study (with or without the vaccine). Unfortunately Darren’s recommendation came back to be placed on the side of the study without the vaccine being administered. He was crushed! He truly believed in the theory of this study and really wanted the vaccine. This is when I went to work to convince the doctor and his head nurse that Darren really should be on the side of the study that was administering the vaccine! I built my case around the idea that they needed to put emphasis on the fact that the patient BELIEVED in the vaccine and that alone would play a positive part in having the treatment work and that if we didn’t give Darren the vaccine, he would already feel defeated right from the start. I was relentless with my request. I became very close to Darren’s main nurse, Carol, and would practically beg her every day to try and convince the doctor to reconsider. Carol also played an important role for Darren at this stage as she was able to talk to the doctor and find the ‘shade of grey’ within Darren’s recent biopsy and that instead of there being ‘two’ lymph nodes, couldn’t they say it was ‘one’ as the other finding was a spot of melanoma right ‘outside’ of a lymph node? It was a creative approach that I would be forever grateful for. I know this all sounds weird but what this allowed to happen, was both Carol and I were able to convince Dr. Kashani-Sabet to resubmit Darren’s information to the study database and allow it to spit out a new consideration. Of course we were still taking a chance that he would be placed on the non vaccine side, but it at least GAVE us another chance. Luck was on our side! I will never forget the day that Carol called Darren and I and said “Darren must have some strong angels by his side as he is now considered for the vaccine!”. Darren and I were so happy! He really believed in what Dr. Mitchell was doing and he felt good to be a part of it. He also was very fearful of doing six weeks of high dose Interferon and having to stay in the hospital all of that time so knowing he could stay at home and administer the Interferon himself, three days per week, was another plus. Of course there was really no ‘win’ either way as the low dose, self-injected Interferon proved to be extremely debilitating on his body. I will never forget the first time he took the Interferon. It was at the doctor’s office as they needed to show us how to administer the injections and then we had to spend the night in a hotel in San Francisco as they wanted to see Darren the next day. Poor Darren was miserable all night. Neither of us slept a wink as it was spent surrounded by the toilet or with me literally laying on top of him trying to control the violent rigors the medication caused. I felt like we were living a nightmare that night, not knowing how we would get through a full year of this, but somehow we did. Darren’s interferon would show up each week, packed on dry ice and ready to be administered. It turned into an event, every time he had to inject himself, as he KNEW how it would make him feel. At least three nights out of the week, he experienced the extreme vomiting, fevers, violent rigors, aches, pains, etc. The other four nights, in between the injections, were still bad but not as severe. I remained by his side and encouraged him the whole time.
I will never forget the first time he took the Interferon…. Neither of us slept a wink as it was spent surrounded by the toilet or with me literally laying on top of him trying to control the violent rigors the medication caused.
And on top of all of this, we had our two boys and I was pregnant with a 3rd! I look back on those days and honestly don’t know how I survived them.
At the time, we lived with so much hope. Hope that the vaccine would save Darren’s life, hope that the weeks and weeks or painful Interferon injections and side effects would be all worth it. Unfortunately the outcome was not good. Darren’s cancer came back before the year was out, right before his final weeks of Interferon treatment. He stopped the treatments and went back in for another major surgery. A few months after this surgery, the cancer came back again. This time it was lighting up the PET scans everywhere … brain, lungs, liver, mediastinum, lymphatic system, etc. The treatments were slim to none at the time. He could choose to do full dose chemotherapy and brain radiation and this would give him about a 7% chance for a 2-year survival. I went back into ‘research mode’ and was trying to find all of the success stories I could find of stage IV melanoma survivors, but Darren had already made up his mind. He made the choice to stop all treatments and live his last days out as much as he could, as healthy as he could. I was scared and anxious by this decision. I wanted him to keep fighting, even with the extremely low odds for success. I’ll never forget Darren’s words at the time...“Babe, its okay. I want you and the boys to remember me as ME, as a whole person, not someone who withers away in a hospital bed, as a bag of bones, with a bed pan next to me.”
It was an extremely emotional time for our little family. I had to accept Darren’s decision and believe it was the best one for him. It was April 2001. From April 2001 until he passed in September 2001, we did A LOT of LIVING. We took the boys to Hawaii and Disneyland. We expedited plans on the new house we were building as Darren wanted to know his family was safe and secure. We also had a huge ‘wedding’ on June 23rd 2001 and invited everyone we knew. It was much more of a ‘celebration of life’ than a wedding, and it was perfect. There was SO MUCH LOVE surrounding us on that day. It was a magical time.
Babe, its okay. I want you and the boys to remember me as ME, as a whole person, not someone who withers away in a hospital bed, as a bag of bones, with a bed pan next to me.
Darren lost his battle at 4:20AM on September 14, 2001 surrounded by me, his family and our closest friends. It is the most surreal experience in the world to have someone you love so deeply take their last breath in your arms. I will never forget that moment for as long as I live.
What would you say has been the most impactful experience from Darren’s diagnosis and treatment?
My experience with Darren and his melanoma has been life changing. Darren truly taught me how to LIVE. The way he chose to handle every aspect of his disease was phenomenal. I have never met someone so brave and so gracious. To this day, I still can’t imagine being faced with the decision to continue treatment or to not continue treatment and to know that he made the choice to leave this earth so courageously continues to amaze and inspire me. Knowing that every day he lived with the knowledge that he was dying is surreal. I look back now and I see so many signs that he shared and left behind, knowing that he wouldn’t be around to deliver them himself.
After Darren’s passing, you were left to raise your three young boys on your own, what was that like? How did you find strength through such a difficult time?
I honestly have no idea how I survived those early days. What I DO know is that I had AMAZING PEOPLE surrounding me and caring for the boys and I, literally carrying me day to day as it took all the effort I had to even get out of bed. The first year was a tremendous blur. I did a lot of ‘running’ away, trying to deal with the extreme pain. One of the first things that we did after Darren passed was to rent a motor home and my brother, my mom, and the three boys and I just drove down the California coast. We didn’t have any agenda, we didn’t know what each day would bring us, but we just knew we needed to GO. The time was so surreal and such a dichotomy as you have these beautiful innocent little children that are full of so much joy and anticipation for each new day and then you have us adults who were in so much pain, and grief, and really weren’t caring what the day would bring. I was so grateful for my brother and mother at this time in my life.
I also went through a lot of fear. Darren passed away just three days after the tragic 9/11 incident so our whole country was also in a state of grief. This time in my life, in our country’s life, created such uncertainty about our safety and our future. This had a profound effect on me. Admittedly there were many times that if there was some sort of ‘potion’ that the boys and I could drink and it would take us to be with Darren, I may have done it, or at least I would be lying to say my mind didn’t go there at times. (But again, I am so blessed by the angels I had on earth that pulled me through these moments of deep despair!) I also developed huge fear in my life. The boys went back to their daily routine of school and activities and I would spend hours and hours knitting and trolling the internet, trying to connect with wives and parents in a similar situation as mine. Back then I think I knitted 20+ hats and scarfs and I even knitted a full sweater for my boys! (Anyone who knows me now, will get a chuckle out of this as I haven’t picked up knitting needles in years.) I also had a huge fear of bridges. This was so absurd to me as I grew up in the Bay Area and we crossed bridges every day. But after Darren passed, I couldn’t drive across any bridges for a while. I reflect back on this time and I wonder why I chose to be fearful of bridges, but I did. (Luckily that fear is now long gone.) I know the grieving process is so personal and unique to each individual and as I look back and reflect on these times, all I can do is be so grateful and feel so blessed for the people in my life who were emotionally strong enough to hold me tight and love the boys and I.
You created UV Skinz after losing Darren, tell us about the inspiration behind this company and your sun protective clothing line.
After Darren’s diagnosis and becoming hyper aware of the need for sun protection and realizing that at the time the only options were really to slather our skin with topical sunscreen every few hours, I realized there was a need that could be filled with something better.
It didn’t make any sense that a stupid sunburn could be the cause of this extreme life loss and this is why I made it my mission to help raise awareness on this often preventable disease.
Before Darren passed, during our family trips to Hawaii with the boys, we would buy surfer rash guards for the boys to wear. Even though they weren’t specifically used for sun protection, my ‘mama gut’ was telling me that these traditional surfer rash guards, made of a thick stretchy material that were meant to be worn close to the body, were a better option than the chemical ridden topical sunscreens that were available at the time. It was these rash guards that gave me the idea for UV Skinz. I would feel so relieved that the boys wouldn’t get burned and I wasn’t having to stop their playtime and slather them up every few hours, but the questions I started asking myself were things like “I wonder if we could make a lighter weight fabric that would withstand the sun’s rays?” or “I wonder if we could create fun, bright, playful prints that kids would then WANT to wear?” (At the time, the rash guards only came in solid, basic colors like black and white and red.)
These were the first thoughts and inception of UV Skinz. We are now approaching our 10-year anniversary and I couldn’t feel more proud of the work we’ve accomplished of bringing quality sun protection products to the market and raising awareness about the importance of sun protection.
What has been your biggest challenge through this life changing experience? And your biggest source of strength?
The biggest challenge has been the extreme pain of losing someone so close. Darren was my soul mate. We had a really special bond and it was devastating to have this taken away from me and our three little boys. It didn’t make any sense that a stupid sunburn could be the cause of this extreme life loss and this is why I made it my mission to help raise awareness on this often preventable disease.
My biggest source of strength has been my boys! They are absolutely incredible and have kept me going for all of these years. I love them dearly and often feel such sadness that they didn’t get to grow up with their daddy and that they had to endure this tremendous loss at such young ages. It also keeps me going (and takes my breath away!) to see Darren in each of the three boys. He lives on in their spirits, their antics, and their genetic features that are so strong and similar to Darren’s. This gives me strength.
It also keeps me going (and takes my breath away!) to see Darren in each of the three boys. He lives on in their spirits, their antics, and their genetic features that are so strong and similar to Darren’s.
What would you most like people to know about Darren?
Darren was a lover of life. I have never met anyone with such a deep soul. He changed my life, in more ways than I can count. I was always fascinated to be able to see life through his eyes, as he had such a unique and intriguing viewpoint. He broadened my perspectives, he made me laugh every day with his fun and crazy sense of humor, and he loved me SO DEEPLY. I knew this, I felt this every day, and I loved him for this. I truly know how blessed I am to have had such a deep love in my life and I am grateful for the 10 years we had together and for the three beautiful boys he gave me.
Is there a quote, song, or book that inspired or helped Darren stay positive through treatment that you’d like to share with our readers?
Darren had many fun and crazy antics in life, that I get to keep in my memory bank and enjoy whenever something reminds me of him. During his treatments, he had photocopied this cartoon that says ‘NEVER GIVE UP’ and gave it out to anyone and everyone he would run into. It was his mantra during the time he needed to find true physical, emotional, and spiritual strength.
What advice would you give someone who thinks skin cancer won’t happen to them or someone they love?
Don’t believe it. It can happen to any of us. Darren had no history of skin cancer in his family. In fact, he had no history of ANY cancer in his family. His grandparents lived long, fruitful lives as are his parents. It can happen to any of us.
Even though what I went through as a wife and what we went through as a family was devastating and something I would never wish on anyone, life does continue. Since Darren passed I’ve been blessed to be able to start UV Skinz and help hundreds of thousands of people with sun protection products and sun awareness education. I’ve also been able to find love again, and have remarried in 2007 to a WONDERFUL man who loves me and the boys so deeply and with so much passion, I am beyond blessed. He was a friend of my brothers and knew Darren and felt honored to be able to be in my life and the boy’s lives. Our family has also been blessed with two more kids! We had another son, Jesse, in 2007 and a beautiful daughter, Cassidy, in 2009. Life is surreal. Life is a roller coaster. But life is good.
Thank you for reading Darren and my story.