Graham Fowler: Melanoma Survivor

From Graham’s mom, Cheryl: Graham’s story as seen through my eyes. It is hard to be a mom, even harder to be a good mom, but nobody can prepare a parent to hear the words, “Your child has cancer.” It hit me like a ton of bricks, I never saw it coming and the sinking feeling inside me still remains—almost 5 years later.

In early 2013, Graham developed a small, raised bump on his arm that resembled a blood blister. He picked at it, and it would bleed more than a normal scab. It continued to grow back, so we asked his pediatrician to remove it. We were not concerned in the least. It did not look concerning. His doctor was not concerned. After the removal, his pediatrician said that it looked, “inflamed” under the microscope, but nobody was concerned as they thought it was because he had picked at it so many times. They took a little more and again told us not to be concerned. We named the little bugger, “Adolf.” Adolf continued to fascinate the pathologists, and they continued to take more of Adolf. Nobody seemed concerned or even used the word cancer. Adolf went on tour, too many pathologists. On April 19th, 2013, Graham was diagnosed with Spitzoid melanoma. On April 23rd, he had Adolf removed, along with several lymph nodes. That was the start of our never-ending journey.

Graham has a fascinating history, including a first cousin who had melanoma as a child. His tumor was classified as Clarks Level V. His original surgery was at Children’s Hospitals and Clinics of Minnesota, his follow up care at the Mayo Clinic in Rochester, Minnesota. He has a remarkable team of doctors at the Mayo Clinic, but kids don’t get melanoma. He had no egregious sun exposure, we live in Minnesota! Graham’s team watches him very closely because there is no real universal protocol for pediatric melanoma. I call Grahams’ follow up plan, “the sitting duck plan.” As more options become available, such as the recently approved use of Ipilimumab, children will have better options for early intervention and ultimately better outcomes.

As a parent, you wait, you watch, you check their skin every night and panic over things like a pen mark, or a little food stuck on their face remaining from lunch! Living every day with this beast is hard. Graham endured dozens of surgeries, has battle scars that he has adjusted to, and lymphedema that causes him great pain. He misses school, relies on medication to control his pain, and tries to hide is compression stockings from all the other 14-year-old kids that make fun of him. It sucks.

I was fortunate to give birth to this fabulous little boy that has decided to turn his experience into a passion for sun safety education and melanoma philanthropy. He rarely cries, never asks, “Why me?” and forges through with strength and enthusiasm. I do worry about those few days when he does cry. He once asked, “When will I be old enough to decide for myself to not have any more surgeries?” I cried that day, too. I cry in the shower a lot. He wants to play hockey, but he hurts. He loves lacrosse but has never made it through a season without having to recover from a surgical procedure. He wants to play basketball this winter—I signed him up and pray he makes at least half the season.

Graham started raising money when he was first diagnosed. He makes and sells bracelets for $1.00. All of the money raised he has donated to cancer research or melanoma research. He recently has joined forces with the Melanoma Research Foundation in hopes raising enough money to someday sponsor a pediatric melanoma research grant.

He fell in love with Tracey Callahan and the Polka Dot Mama Melanoma Foundation and helped create an awareness video called “These Tan Lines Don’t Fade”.

He attends Hill Day each year to talk to Congress about increasing funding for melanoma, and he even was invited by President Obama to visit the White House. As of today, he has raised over $100,000 for cancer research and also volunteers with Make-A-Wish Minnesota. He looks forward to attending the Pediatric Melanoma Summit that Brenda Busby and the MRF sponsor, where he gets to meet other kids that have melanoma and share their stories, learn about their disease and help educate those that don’t.

But, all that being said, he still has melanoma. There is no cure. He hurts every day and is a sitting duck. His childhood has been robbed by a beast that I, as a mother, have absolutely no control over. It is a horrible feeling. I have joined organizations, foundations, support groups and most recently became a facilitator with the melanoma exchange.

He misses a lot of school, missed his 7th-grade yearbook picture, misses field trips, and struggles to play sports. He has traded in his tank tops for UV blocking clothing, he packs sunscreen in his backpack, and he wears a hat. He is tired after school and relies on pain meds at night. He is still a happy little boy that loves life—he just got dealt a bad card.

Please follow Graham’s Gift on YouTube and Facebook.

Karlee Steele: Melanoma Survivor

“MOMMY look this tadpole is one of the ones that still has a tail and little legs too!”

That’s not what you thought I was going to say was it?

You see it’s a hike. A climb. A Texas climb straight up from Lake Travis, through the Lake Pointe Preserve, straight up. I know this climb well, in fact my son and I know it very well as one of our favorite fishing and tadpole spots. It’s hidden under crystal green spring waters only found in the Texas hill country. No one is ever there. Ever. Which is why we love “our spot” so much.

As we journey home that crisp day in January last year my phone rings. Weird as it was a holiday Monday, I knew it was the call we anticipated for 10 days.

“Karlee, Dr. Gambarian, your surgeon. The needle biopsy we did 3 weeks ago, the one that we thought was negative. Well it’s actually, positive. After your second surgery last week it has been confirmed you have stage 3 melanoma.

“Wait. What do you mean?”

“I mean you need to find an oncologist immediately. You have full blown melanoma skin cancer. Not skin cancer on the outside of your skin. But inside. It’s in your nodes under your right arm. I have an oncologist I can recommended. And you need to make an appointment tomorrow…”

So there I stopped, up that steep Texas climb I referenced. Stopped dead in my tracks. Rocks sliding out from underneath my feet and tears falling. Hidden, thankfully, behind my sunglasses. The kind of tears you can’t control. They just fall.

Fortunately my son and our big red dog were pulling up the hill ahead of me with determined vigor and speed that only 9 year old little boys have.

“Mommy, why did you stop? You’re never far behind me. Usually I am the one trying to catch up to you. Let’s go mommy!”

“Coming babe, I’ll be right there.” And so I was. As I always am for him. But now what?

I can’t put words around what it feels like to get the cancer call. You can’t describe it unless you have traveled down that path and heard those words. Stage III cancer – how do I have stage III cancer? I eat more veggies before 10 am than most eat all day. I teach cycling class 3 days a week and exercise 6 days a week. Weekly, I meal prep and plan to put the most nutritious food in our bodies. I take pride in living a strong healthy life not only for me, but more importantly for my son.”

Source: Karlee Steele – YouTube

Julie Witts: Melanoma Survivor

Ten years ago, I found a mole that got me concerned on my right shoulder. I had it removed in December and it came back the following year as a lump in my neck. I was told it was stage 3 melanoma, I had a ten-hour operation to remove the melanoma and they also took out 12 lymph nodes. 3 others were infected, so I went to the Royal Marsden hospital for a trial drug and regular treatment and managed to survive it. But, a recent CT scan showed a 5mm nodal on my lung and by the second scan, it had grown to 6mm. I’m waiting to have a biopsy done on it after the next scan. Last week I had another suspicious mole removed from my right arm, and I have also found another lump in my right hand which I now have to get checked out by my doctor. I just hope it will be good news this time. Thanks for reading this if it can help in any way.

Sarah Spencer: Melanoma Survivor

Oddly enough, my skin cancer story began with my birth! Well, to be more specific I was born with a congenital nevus (aka, birthmark) on the second toe of my left foot. It was a dark, asymmetrical mole that I always thought was ugly and so for the first thirty-odd years of my life, I just ignored it until it became impossible to ignore. In my early thirties, this mark began to slowly change. It was almost imperceptible at first, so it didn’t raise a red flag right away. Eventually, I did notice that it appeared to be getting bigger and by this point, it was even starting to itch and give off little random burning sensations. My husband and I made an appointment with a dermatologist but in the meantime, I was googling all about melanoma. After finding out about the “ABCDE” warning signs of melanoma, I was fairly certain already that this was what was going on with my toe. But I still couldn’t really comprehend what a melanoma diagnosis would mean for me.

On New Year’s Eve 2013, the P.A. at the dermatologist’s office called me and confirmed my suspicion. Not understanding the sneaky and aggressive nature of melanoma, I just assumed that the offensive birthmark would be cut off, I’d have a little toe scar, and that life would go on as usual. I was so very wrong! The dermatologist’s office referred me to MD Anderson Cancer Center in Houston. I went to my first appointment not really knowing what to expect but I definitely DID NOT expect to be told that the top half of my toe would need to be amputated. The surgical oncologist informed me that I was in good company as Bob Marley had also been diagnosed with “acral lentiginous melanoma” and she reassured me that although I was undergoing a distal toe amputation, I would still be able to wear flip-flops—silver lining!

The biopsy showed the melanoma was very slow-growing, not very deep, and there was no visible mitosis. I was assured that prognostically, this was all very good news. But to be on the safe side, I would also undergo a sentinel lymph node biopsy while I was in surgery for the toe-top removal. My oncologist informed me that she was 98.99999…% confident that the melanoma had not spread.
Despite her well-intentioned and optimistic prediction, unfortunately even the best doctors are not always right. The sentinel lymph node biopsy revealed a microscopic amount of melanoma in the largest of three nodes. This advanced my clinical staging to Stage 3A. My heart sunk. After picking it up and dusting it off, the next course of action was an inguinal lymphadenectomy wherein another 16 lymph nodes were removed and dissected. Good news this time, all of those lymph nodes were clear!

All follow-up scans since the last surgery have shown “No Evidence of Disease” and for this, I am so grateful. But fear of recurrence is always in the back of my mind and the permanent side effects of the operations I had are a daily reminder of the physical and emotional damage that melanoma can leave behind.

Jessica Vines: Melanoma Survivor

I worked in a tanning salon for a few years while I was in high school. I used tanning beds on and off for probably about 3 years. Around age 23 I noticed some changes in my moles and decided to go to the dermatologist for my first skin check. Luckily, my moles came back as mildly atypical and no further treatment was required. I stayed diligent from that point forward and had skin checks once or twice a year. Fast forward to summer of 2017. I am 29 years-old and busy planning my wedding. I had recently moved to a new city and found a new derm. I went in February to see her but didn’t feel like she was “thorough” enough so in July I decided to get a small mole on my foot rechecked by a new derm.

About a week before my appointment, a small mole on my right shin began to get darker and slightly scabbed. I mentioned it during my appointment and the derm decided to biopsy it as well. My foot came back fine but much to my shock my leg was melanoma in situ (earliest stage). I had surgery 4 days later.
I went through all the emotions immediately. I was a wreck emotionally and still struggle to keep a balance in my mind. It’s a scary shocking road to have your whole world rocked 8 weeks before your wedding.

What I’ve come to realize in the last 3 months is to trust God more and worry less. I am also extremely thankful for how early I caught it and how in tune I am with my intuition. I’ve learned more about life in the last 3 months than I did in my 29 years on this earth. In a weird way, I am thankful for this eye-opening experience and I plan on living each day the way I should’ve been living prior to this diagnosis. I will never take my health for granted again and now I know how precious each day truly is.