September 23, 2010, one day before her 21st birthday, my daughter Jillian was diagnosed with stage IV Melanoma.
In July of 2009, Jillian discovered a mole on her back that started to bleed. The mole was removed and sent off for testing. The results came back showing that she had melanoma. A large portion of the surrounding area was excised, and two lymph nodes were removed. Results from the surgery showed the surrounding tissue and lymph nodes were clean, and free from cancer. One year later, during a routine visit, her surgeon suggested a PET scan for Jillian. From that scan it was discovered that Jillian had a tumor on her liver, and two more small tumors, one on each lung. Since that time Jillian has undergone surgery to remove half her liver, and two radiation surgeries to remove several tumors that were found on her brain.
In April, Jillian began a BRAF clinical trial at the University of Michigan. For several months she responded to the trial drug. In October however, her scans revealed that two of her brain tumors had grown, along with several new ones. After consulting with several doctors, Jillian completed ten days of full brain radiation in preparation for the new FDA approved drug, Yervoy. Jillian continues to attack this nasty beast head on, with her usual strength, courage and determination. Jillian is a true warrior!
On December 29, 2012, Jillian completed her job here on Earth. I will continue to spread awareness and to shine the light that was evident in her life.
In an effort to raise awareness of Melanoma, especially in young people, I have created a not-for-profit organization called, Jilly’s Jems. We are dedicated to educate and to spread awareness of this disease.
Melanoma is the deadliest form of skin cancer, and has become an epidemic in young people. Research shows indoor tanning increases a person’s melanoma risk by 75 percent. Melanoma is the most common form of cancer for 25-29-year-olds and the second most common form of cancer for 15-29-year-olds. UV radiation from the sun and tanning beds also has been associated with non-melanoma skin cancer, such as basal cell carcinoma and squamous cell carcinoma, as well as wrinkles and age spots. .
Please, visit your dermatologist for a yearly skin check. Cover up while in the sun and apply sun screen frequently.
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Bryan was a man who ALWAYS put others before himself. This is not a story about a man who becomes great upon his death; it is a story about a man who truly practiced greatness each and every single day with the way he treated others. A father of three, married for 22 years at the time of his death, he ran an insurance agency. He was the type of man who would pay for his customers’ policies if they couldn’t afford it; who would find work for the poor in our community so they would have dignity; who spent every extra moment he had dedicated to his wife and kids.
Bryan had what I would call a very cute birthmark on his hip. It began to change, but, as life got in the way, we did not immediately seek medical treatment; When we did, we went to a general practice physician, and that proved to be the biggest mistake of our lives. Rather than getting a biopsy, he cauterized the area. It was not until a few months later than we noticed the spot was no better and demanded a biopsy. It came back positive for melanoma. This was April 2014.After more testing the melanoma was found in many lymph nodes in the groin. My husband went through many therapies and even immunotherapy, which ultimately was not successful. The first cancer was discovered right when our oldest son graduated from high school; the return of the cancer was found right when our second son graduated from high school, May 2016. The cancer had spread to critical parts of the brain, and then morphed into Leptomeningeal Carcinomatosis; in other words, the cancer spread to the cerebrospinal fluid. He died eight weeks after that diagnosis at home on October 14, 2016.
With Bryan there was always positivity; always a joke; yet our fear was palpable. If I could give one piece of advice to caregivers it would be this: talk about what is happening, candidly; be at every doctor’s appointment (I was not because of the fear); and love that person with every ounce of your being. My children and I take comfort knowing we will see him again. We go through the struggles of why and how this could happen, but then we must remind ourselves we will not always have those answers at this time.
I am so thankful that groups like Mama Bear’s Spot exists. It gives us a place to go to find comfort and people who can relate to this fire-filled experience. I thank you for it and pray for all of us to become stronger so we can help others.
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In 2003, an ugly looking dark irregular shaped mole appeared on Jodi’s right arm. Because of people encouraging her to go in and have it checked, she scheduled an appointment with her dermatologist. The mole was removed and sent away for testing. On May 8,2003 Jodi received a phone call from her dermatologist. Jodi had just delivered her daughter and was in the hospital. A surgeon came to her room shortly after the call and explained to her that she had skin cancer and that they needed to surgically remove more of the area around the mole. The following week, Jodi was admitted and had lymph glands and a section of her upper right arm removed. The margins were clear and they felt that they got everything. She was instructed see her Family Doctor for checkups. She followed orders and had blood work, x-rays, etc. completed regularly.
In April of 2011, Jodi was having horrendous headaches and sought help from her Family Doctor. It was felt that these headaches could be stress related because of starting a new job etc. But the medication did not help. She was having blackouts that lasted a few minutes.
Because of these headaches, she was encouraged to seek answers by starting at the ER. When she arrived, a CT Scan was performed and two brain tumors were discovered on her brain. She was 36 years old at the time. That afternoon, an MRI was completed and the diagnosis was that Jodi had Stage IV Melanoma Brain Cancer. In the next few days, it was also discovered that Jodi had a tumor on her hip and liver – meaning that the cancer had metastasized.
Within a few days, the decision was made to remove the larger brain tumor and then remove the smaller tumor a week or so later. Chemo therapy was discussed to reduce the growth of tumors and radiation was also discussed. The initial prognosis was 6 months. Jodi had five craniotomies, had intravenous chemo therapy and pill form, and numerous radiation treatments. Jodi was also the second person in the United States to have a new technique known as Brain Port surgery – surgically being able to reach deep tumors without causing damage to the brain tissue.
Jodi fought courageously but passed away on February 10, 2013. Jodi wanted to have an organization formed to give back to the communities and charities in her area and especially wanted youth to be made aware of the dangers of the sun and tanning beds. The organization (Just Believe) was formed shortly after her passing. Since 2014, sun safety/skin cancer awareness and prevention presentations have involved the Kindergarteners, 6th Graders, High School 9th Grade Health Classes and HOSA classes in the county. In addition, Just Believe went further by awarding Sunscreen Dispensers throughout the County and other Counties in the Upper Peninsula (Grants were written for funding in order to provide dispensers and sunscreen free of charge to recipients.)
Jodi fought for almost 2 years. Jodi wrote a blog to try to help others. Her blog can be read at www.ballfamily49866@blogspot.com. The Just Believe organization also maintains a website: www.jodisbelieve.com and a Facebook page: Just Believe.
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Bobbie Lee was born Dec. 17, 1980 and went to Heaven @7:29 on Jan. 18, 2012. She lived 31 yrs & 31 days. She was our only Child. She was married and had a little girl, that was 4 when she left this world. Bobbie’s melanoma was estrogen induced after a miscarriage on Thanksgiving day 2010. In Aug 2011 she was diagnosed with stage 4, she lived 167 days. She was the apple of our eyes, she loved deep and hard. She said when she was diagnosed that she was ok with it being her, cause she would have taken it to safe the ones she loved. Her Faith was solid as a rock and now she is pain free and fear free in Heaven.
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I met Les in 1972 shorty after leaving a small town in Ireland for the bright lights of london .We married very young he was 19 me 18. We were married nearly 45 years married when he went. He was the most wonderful caring husband dad and grandad anyone could ask for, I was blessed to have him in my life and I miss him every day.
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I have been fair-skinned all my life, and also got some pretty bad sunburns when I was younger. I never imagined that I would be diagnosed with melanoma though – that only happened to other people… I thought. I am so thankful to my OB/GYN who advised me years ago to go in for yearly skin checks. If he hadn’t, I would not be here to tell my story. I was diagnosed with a Stage I Melanoma in August of 2012 at the age of 44. It was a complete shock – nothing looked odd or abnormal. Since then, I have had 2 more melanomas appear, and many, many wide excisions on other severely atypical spots – I stopped counting after 35. Since then I also bristle a bit at the people who say, “Oh, it’s only melanoma.” There is no such thing as “only melanoma.” It kills. It is a beast. Do I live in fear? No. Not most of the time. Am I scared once in a while? You bet. But, I will continue to tell my story in the hopes that no one else goes through this journey. I caught it on time (it appears), unlike so many other people who just had no idea until it was too late.
Karen Daling
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Melanoma, Mama & the Mississippi River – Margaret Ann Bruggenthies
As a child I was water skiing at the age of 5 on the Mississippi River in Minnesota before I could swim. To be honest, I never did learn how to swim. My dad raced boats, is a boat mechanic, boat dealer and a fisherman with kids and grandkids that love being in the boat on the water. My mom was “allergic” to the sun. I remember driving back from the river one weekend when she had broken out in itchy hives from a bad burn. Sun block was a rare at that time. I used to say, “I got my mom’s chicken skin.” I did get my mom’s sensitive skin and my children have sensitive skin.
Fast forward to 2003 and my mom had a black ink spot taken off behind her right ear on her neck. She couldn’t see it. We could see it. It was black and it was irregular. It was melanoma. It was very superficial and “the edges were clear” we were told when they removed it. I told her she should get workman’s compensation for that surgery since it was work related being they were in the boating business with inevitable sun exposure.
We already knew the death sentence that melanoma was since my mom’s youngest brother died from it. I was living in Arkansas at the time of my mom’s surgery and my mom said it wasn’t necessary to come home. When I was home for Christmas a few months later and we were buying seafood for our Christmas dinner, mom said, “I want to get the best to celebrate.”
Eight years went by and the scar behind her ear blended nicely with her wrinkles – until she had a stroke. The doctor in the emergency room said to my dad, “The melanoma is back.” His remark was essentially ignored. She recovered remarkably from the stroke until one day the Mayo Clinic called to say that the shadow on the scan of her brain seemed to be growing. “We are 90% sure it is not melanoma,” the neurologist at the Mayo Clinic in Rochester promised as she planned for brain surgery in February of 2011. She waved like the homecoming queen that she was as she left for surgery. “Take care of dad,” she said as she went in for surgery.
My mama left and my life was never the same. She was the foundation of our family. She was our Super Glue. She was stubborn, fair, smart, regimented, the rule keeper – the mother of 6 kids. As small business owners, I like to say that my mom was the brains and my dad was the brawn. The ying and yang……..
As she slept in her hospital bed, and I knitted like an addict to quell my anxiety, I looked at that old scar on her neck from that black ink spot. I noted how close it was to the 57 staples that engulfed the right side of her head. “We are screwed,” I told myself. And we were screwed. The melanoma was now in her brain.
Whole brain radiation. Experimental drugs that the boat mechanic injected into her stomach. Confusion. Seizures. Staph infection. It was a wicked roller coaster ride. We lost my mom on May 15, 2012. I hate melanoma.
Julie Bruggenthies
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Jen was diagnosed Jan 7, 2011 with Stage IV metastatic melanoma and passed away Dec 13, 2011. I have enclosed her FB page which was created to keep the awareness going. She was only 28 yrs old. She never got a chance to be married or have children . Oh how I hate the BEAST called MELANOMA.” Doreen Nortum-Buckel
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We lost our 25 year old son June 29, 2012. He was a former Division One college football player and the picture of health. Life was good. Graduated from college and engaged to the love of his life. Exactly one month before his wedding, Spencer was diagnosed March 21, 2012 with stage 4 Metastatic Melanoma. The community embraced us with bumper stickers, t- shirts, arm bracelets displaying his motto, “Against all Odds”. Spencer was surrounded every day with both families and friends during his 14 week journey of living with Melanoma. We all learned so much about life and not to take one day for granted. This disease does not discriminate. We advocate and encourage everyone to have a head to toe skin check annually. Early detection saves lives.
Thank you for thinking of us. Eight years later and the pain is just as deep but different. I have always felt like our children had a lot in common. Sadly I know you and I do as moms. Have a great day.
Sara Hampton
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One of the greatest traumas imaginable in life is when a parent loses a child. Regardless of age, this is an incredibly difficult reality to accept that can seem to go against the order of nature, only making it more confusing and painful. One of the reasons we share real people’s experiences with melanoma, is to spread awareness of it’s preventable nature as it relates to UV exposure. Jay was a lively, and loving young man, who was taken long before his time from a cancer that possibly could have been prevented.
Here is Brenda’s Story.
In Nov. 2009 at the age of 26, Jay discovered a mole on his scalp just above his left ear. The next morning, we made an appointment with his doctor to have it looked at. His doctor referred Jay to a skin cancer/plastic surgeon to have the mole removed and biopsied. The week before Christmas we received a call from the surgeon saying it was a superficial A Typical Mole. Wanting to make sure, we had requested a Melanoma Specialist in Boston take a look at the slides and examine Jay. Both doctors agreed on doing a PET Scan, CT scan and a wider excision. All came back clear!
On March 4, 2013 Jay had a massive seizure and was rushed to a local hospital where a CT Scan revealed 12 tumors on his brain. At this time, he was immediately sent to Mass. General Hospital in Boston. Several more tests and scans were done and a tumor was also found on his lung. The tumors on his brain were inoperable so a biopsy was performed on the tumor on his lung to determine what this cancer was. Pathology results revealed Stage IV Metastatic Melanoma and he was given just 4 months to live. Our world fell apart!
The doctors at MGH received Jay’s original pathology report with slides and went over all the details with us. Never did we believe that this mole that was removed would come back as Melanoma!
The doctors truly believe that Jay’s tanning bed use at the age of 16 played a role in his Melanoma diagnosis. Back then, we knew nothing about the dangers of tanning beds…my concern for Jay was “Your going to get wrinkly skin Jay! Don’t tan!” Since then, we have learned so much more…
Jay immediately began whole brain radiation, seizure meds, high doses of steroids and Zelboraf to treat the Melanoma. After a few months, scans revealed that the Zelboraf was not working and was causing bad side affects. He then started the Tafinlar/Mek Combo. Jay spent a good portion of his 10 month battle with Melanoma in MGH and under the loving care of Dr. Helen Shih. In September and December Jay received more whole brain radiation as the tumors grew in size and numbers. It was his wish to at least get through the holiday’s. The hardest thing to do was to watch my handsome Jay dwindle away, have several seizures and hear him say “I did this to myself. I just wanted to look good.” It was then that Jay asked us to please help others know the dangers of using tanning beds!
Jay’s battle ended peacefully and he earned his Angel Wings on 1/28/2014 surrounded by so much love from his family and several friends. To honor Jay’s wishes, we have started a non profit 501(c)3 Jason Farley All In For A Cure Foundation Inc. Funds raised are directed to Dr. Shih for Melanoma Research, Awareness Programs and to help those with Melanoma that are in need of financial support. Jay was so full of love and was so kind to everyone he crossed paths with. Always had a smile on his face. Jay’s quote was “Live, Love and Laugh” and he did that up until his last breath. He reminded us all to do just that.
My advice to all parents would be to educate yourself and your children about the dangers of tanning bed use. There are so many facts and great information out there. I wish it was there for me when Jay started tanning. I also urge all lawmakers to ban tanning bed use for anyone under the age of 18! By us sharing Jay’s story with our lawmakers in New Hampshire, we were successful and there is now a ban for anyone under 18. It is my hope and goal that one day there will be a total ban!
My biggest challenge has been living each day without Jay and knowing that I as a mom didn’t try hard enough to stop him and that I didn’t know the dangers of tanning beds. Jay knew he did this to himself and now I’m left knowing that I let him! It’s so painful…so very painful!
Jay, I will live for you.
I will make you proud…
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My son Brian was only 32 when diagnosed with Melanoma He was my oldest of two boys and living at home at the timeHe had a great sense of humor, loved to talk to anyone, and enjoyed life.He was not a sun worshiper or tanning booth person but had a large mole on his torso. He’d had the mole for many years but never thought to have it looked at until a new mole grew on top. By the time he went to doctor and had surgery is was stage 3At that time there was only one drug for Melanoma approved and one in clinical trials however he did not get picked for the clinical trialSo radiation and interferon for 1 year but the cancer did not leave his bodyNow there was also a small spot in his brain, so more radiation and then the newly approved drug, at this time there were more clinical trials at U of M so we went there but he was not eligible because of the spot on his brain
After 8 weeks of chemo and new scans it was now January of 2014 2 years since diagnosed and the cancer had spread to the liverHe was able to get into a clinical trial in Detroit so for 4 weeks we drove to Detroit 2 days a week and spent the night for treatments, but then his blood count was not good and he could not continue In mid March 2014 he was told there was nothing else they could doIt has metastasized to his liver and lungs. We called hospice and they gave him 6- 8 weeks , he died 2 weeks later on March 26 2016 at home with me at his sideA part of me died that day, but he is our hearts forever and I think of him dailyBrian was taken from us way too soon, but God has a plan for all of us and Brian watches over us from heaven. ~Pat Huttenga
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This is Eric he was diagnosed on 1/25/2006. He was 39 years old with a teenage daughter. He was stage 3 when diagnosed for seven years he endured 7 different treatments and 2 rounds of radiation along with 11 surgeries. This pic was a few years in it was our neices graduation. Most of the time people would never have guessed that he was sick, in pain,and dieing. It took everything he had to get up everyday and smile and be positive. But he truly believed that alot of his survival for so long was because of his positive attitude and will power. What people don’t understand is you don’t always see skin cancer even melanoma. Eric’s had no pigment so they never found it on his skin. It was never found until it was in his lympnodes. I was married to him for 26 years and still miss him everyday along with his daughter . She lost her dad at 23. She still hasn’t gotten over it. He was one of her best friends.
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Hello, my name is Traci Christian birthdate 7/25/80 and I was diagnosed stage 4 melanoma on Sept 16, 2010! Worst day of my life! I had no symptoms or anything before finding a little knot which I was told was a cyst for months prior. It had already spread to my lungs before I was diagnosed. I was treated with High Dose IL-2, GM-CSF( clinical trial), chemo pill, Ipi, Cyberknife radiation, surgery to remove it from my small intestines, hysterectomy, and I think that may be all. However, on February 29, 2016 I got my first clear scan! I have been NEC since then, thank you God!
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My late husband of 30 years passed on December 15 2018. He fought 7 years. The beast thought it win but my David fought hard and long and gained his wings. Where the beast will never touch his body again.
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From Eric’s mom, Penny Martin:
My son Eric Martin, was diagnosed with stage 4 melanoma in 2011 at the age of 29 and has quite the story. Nine years of fighting every treatment and failing them and having every side affect. A year and a half ago being as sick as he was, he transformed a retiired school bus into a Mobile Dermatology Clinic because he wants to do free skin screenings to help prevent people from getting this deadly cancer. He was told 2 months ago that there was no more his doctors could for him as his organs were failing. And it was time for hospice. . That was his sickest. He was down to 124 pounds, tumors everywhere, horrible pancreatitis, couldn’t eat, couldn’t get out of bed. We had came to say our goodbyes. But because miracles do happen he is still here today doing so good. Has totally surprised his doctors and everyone else. All those tumors are shrinking or gone, up 12 pounds, eating great, energy getting better each day, he has color again. God has decided to keep him with us longer. He has work to do doing free skin checks with the Mole Patrol. I call him my HERO…
Love and hugs,
Penny
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This is Ben’s story as told by his daughter, Amy.
Sending prayers to Ben and his family. 💕
“His Melanoma journey began in February 2006, where he was diagnosed with stage 4 mucosal melanoma in his nose. He went through surgery, and intensive chemotherapy and radiation therapy afterwards. He remained CLEAR of this disease until 2014.
In August 2014, he was diagnosed with stage 4 Melanoma in the neck. Surgery was performed, and despite a scare in ICU afterwards, he recovered extremely well.
In May 2015, he was diagnosed again with stage 4 melanoma in the neck, with over 20 lumps visible. This time was particularly scary as we were told surgery was not an option for him, so instead he began an immunotherapy trial. Amazingly, within 3 months of this treatment, all lumps were gone.
He remained on immunotherapy from May 2015 to January 2017, and remained clear of this aggressive cancer.
Scans in October 2017 confirmed cancer on his tongue. He underwent surgery for this and it was removed successfully.
Can you tell my dad is a fighter yet?? There’s More.
In December 2017, melanoma was discovered in his head, between his skull and his dura. He underwent a major craniotomy 5 days before Christmas, and miraculously made an incredible recovery. He was home after a week!
He was then put back on the immunotherapy trial indefinitely by April 2018. He had some recurring lumps in this time, however they were managed well with immunotherapy and radiation.
Unfortunately, he had to undergo another craniotomy in February 2020 to remove another melanoma from near his brain.
He is now currently recovering after a further brain surgery in late May 2020, where a tumour was removed from near his brain, and a large tumour was removed from behind his right eye.
This man is a FIGHTER and I am proud to call him my Dad. I want him to be able to enjoy life with my mum once he has recovered, hence why I have begun this fundraiser. We are unsure if he will be able to work again, and I want to do what I can to help.”