One reason I appreciate social media is it allows us the opportunity to meet like-minded individuals and organizations that we can connect and share stories with. I came across Skin Cancer Stinks (@SkinCancerStnks) while checking in with the melanoma community on Twitter, and was immediately intrigued! After checking out the organization’s website, www.skincancerstinks.org, I quickly discovered that the faces behind “Skin Cancer Stinks” awareness efforts, were that of a sweet, young melanoma warrior named Leah and her passionate mother, Jenny. At the age of 8, Leah was diagnosed with melanoma, and instead of letting fear cripple their family, they have risen above and dedicated their lives to raising awareness about melanoma and the importance of sun protection…
Here is Jenny’s Story.
How did your daughter, Leah, discover she had Melanoma? What type or stage was she diagnosed with?
In 2011, at the age of 8, Leah discovered a very tiny raised skin colored bump on her thigh. Two dermatologists dismissed it as a wart and told us to watch and wait, because of her age. The bump grew slightly over a couple of months and Leah insisted it was not right. So I couldn’t wait any longer. I went back to a dermatologist and pressed for more tests.
After a biopsy, three pathology reports, and months of searching for answers day and night, Leah was finally diagnosed with Melanoma Skin Cancer. The doctor told us that Melanoma grows fast, and can travel quickly to your lymph nodes and then attacks your vital organs like the brain. Within 2 months, Leah had 6 invasive surgeries, including removing all the lymph nodes in her groin, tubes, pic lines, daily cancer treatments with chemotherapy, infections, complications and hospitalization to deal with her Stage 3 Melanoma. Test after test, poke after poke…her scars are a constant reminder even now.
What was the primary treatment facility involved in her care?
CHOC: Children’s Hospital Orange County
What would you say has been the most impactful experience from Leah’s diagnosis and treatment?
When she was hospitalized for quite some time due to complications, blood clots, infections etc. we saw first hand the suffering that goes on with children diagnosed with cancer. Seeing my daughter and all the other children on the oncology floor helpless but fighting is a visual memory I (we) will never ever forget. It fuels us to help. Help raise awareness and educate others about skin cancer prevention and early detection, help raise money to find a cure, help provide emotional support for families going through a cancer diagnosis. Just help in anyway we can.
What organizations have been the most helpful to your family?
- Dr. Leonard Sender- medical director of Hyundai Cancer Institute at CHOC Children’s Hospital. He is more than an oncologist, medical director, researcher, leader of AYA movement – look him up and see what this amazing man does for cancer world wide – Brilliant. And his heart is in it!
- Michael Hoefflin Foundation for Children’s Cancer – The foundation has provided us with emotional and financial support. I had to drive back and forth to CHOC Children’s Hospital in Orange County. A 1.5 hour drive and they provided our family with gas cards. I eventually moved in to the Ronald McDonald house in Orange (and then just lived at the hospital) and MHF provided grocery cards to our family too. After cancer we both suffered from post traumatic stress syndrome and Leah and I went to therapy that we could not have afforded without the MHF covering the costs. These are things people don’t think of and yet are SO important.
- The Melanoma Research Foundation has connected me with a group of Pediatric Melanoma Families and continue to be progressive in research and raising awareness for Pediatric Melanoma. I am truly grateful for their work.
Leah, her family, and Dr. Leonard Sender
What has been Leah’s source of strength through this experience? And what
has been yours?
My strength has been God, my husband, my two boys Bryce and Dylan, my parents and LEAH. When a child goes through what she did and sits by your side and says “mom it’s okay – let’s just pray and meditate together” – at age 9… She always found a bright side or the light of hope…I had to rise up and GET strong! She gave me strength!
What has been Leah’s biggest challenge since her diagnosis?
The blood clots from her pic lines and dangerous infections that landed her in the hospital during treatment for a lengthy time and created serious complications. Then, after treatment and once home it was the psychological aftermath of nightmares she would have from all she went through in the hospital.
Tell us about SkinCancerSkinks.org. How can people get involved and show their support?
Tell friends to visit skincancerstinks.org to get the facts and help spread Leah’s message. By just sharing with even one person you could save a life. Leah wore her shirt “Sunblock Stinks? – Cancer Stinks More!” at the Revlon 5K run and a woman running next to her read it and asked questions at the finish, which led her to convincing her husband to visit a dermatologist. Her husband was diagnosed with stage 3 melanoma. She contacted us and said Leah’s shirt with the Big message saved his life. One person spreading the message can make a difference! Leah has the shirts and hats on the website. All net proceeds go the the Hyundai Cancer Institute at CHOC Children’s hospital, and to help provide sun shades in schools to protect children. She also is sending a toy for every shirt purchased that she selected to help distract children during cancer treatments. She always had ideas for this during treatment and wanted to give kids something that can help distract them during pokes, chemo, procedures etc. She knows first hand that a distraction is an amazing tool with children.
Leah at 5k event raising money for MHF and Children’s Cancer
What would you most like people to know about Leah?
Well there is a lot to say! She loves life and puts 100% of herself into everything she does. I admire her determination and positive attitude! It still amazes me each time I see it. So many times people have told her you can’t do that or that is too hard and she says “watch me! I can and I will!” It is always with crazy hard work (it does not come easy and sometimes there are disappointments) but she never gives up! This year is yet another example of believing you can do something and going for it. She had to be held back in school a year due to her surgeries, long hospitalization and treatments. She was absolutely determined that eventually she would catch up to her peers. Finally two years or so later she was able to skip sixth grade this year and move on to seventh (middle school) with her peers. So many said it would be too hard on her and to just let it go and stay in the grade she is in. She said, “I don’t belong there and I will get to where my heart belongs!” She works for everything and this time it paid off. Of course skipping sixth grade comes with its challenges and our entire family studies with her for hours! But she wants it so badly that it is worth it. She just came home with an award for the honor roll with a 4.0! She never has had straight A’s even when she didn’t skip so this is a huge accomplishment! I was blown away and sat and cried for her…She sure did it! (Even I kept saying. “don’t pressure yourself – if you get B’s and C’s it is wonderful because you skipped a whole year.”) Of course there have been days with tears of frustration. But that never lasts long with Leah. We both realize how lucky we are that she is still here. Then we want to fight for all the others!
Is there an inspirational quote, song, or book that inspires Leah that she would like to share with our readers?
Leah loves the book and movie Soul Surfer by Bethany Hamilton – Bethany reminds me so much of Leah- she gets up and try’s again until she makes it happen! Very inspirational story and when Leah was in the hospital Bethany’s story really helped Leah get through some tough times.
Leah with Bethany Hamilton, Pro Surfer / Soul Surfer
What advice would you give someone who thinks skin cancer won’t happen to them or a member of their family?
Think again….It can happen to any age, any gender, any skin color…Early detection is the key and you never want to look back wishing you went to the doctor earlier. Also follow your gut, it was Leah’s gut feeling and my mothers instinct (crazy determination) that pushed me to get second, third opinions and so on, when she was first misdiagnosed. It was a life saving choice to press for answers.