If you happen to follow our “My Story” series regularly, you may recall we featured a mother’s experience with her young daughter’s diagnosis and treatment of melanoma. Jenny is an incredible mother, and her daughter, Leah, is nothing short of an inspiration. Together they form a pretty unstoppable team (i.e. Skin Cancer Stinks!) We gave you Jenny’s perspective a few months back, and we are here again to give you Leah’s version.
Here is Leah’s Story.
How old were you when you discovered you had Melanoma? How did you find out?
I was 8 years old. I found a tiny bump on my leg and told my mom it bothered me. It looked like nothing because it was pinkish and looked almost the color of my skin.
What were your treatments like?
They were terrible. I had lots of surgeries. First they took out my melanoma. I had a lot of stitches and my scar is over 6 inches long on my thigh. Then I had my lymph nodes removed because they found cancer in them. I had a lot of stitches and a drain tube that drained fluid and blood. Next I had to have surgery to get a pic line put in so I could start chemo. I had to move in to the Ronald McDonald House in Orange County because my hospital was too far away. At first each day we went to an infusion center for hours where I received interferon and then we slept at the Ronald McDonald House but after awhile I got very sick with an infection so I had to stay a long time at CHOC hospital. I had blood clots too so they had to take my pic line out and give me another surgery with a new pic line in my other arm. My infection did not go away so I had to have antibiotics in my iv for a month. Then they gave me a pump that I had to wear so the antibiotics could go in constantly in to my line. I got more blood clots so had to go back to hospital. They gave me shots in my stomach all the time. Those actually hurt worse than all the rest. After being back in the hospital in treatment they discovered that my liver just could not handle it so I had to stop the high dose interferon. I got better and went home where my mom gave me shots in my stomach every day for awhile.
What would you say has been the most impactful experience since your diagnosis?
I love speaking to kids about preventing melanoma and I really loved speaking to Senators in Washington DC about Melanoma Prevention and education.
What organizations have been the most helpful to you and your family?
The Michael Hoefflin Foundation for Children’s Cancer, the Ronald McDonald House, Make a Wish Foundation, and the Melanoma Research Foundation.
What has been your biggest source of strength through this experience?
God and Bethany Hamilton. Her movie soul surfer inspired me to fight, be strong and stay very positive. I watched her public speaking events on my iPad when I was scared or in pain.
And your biggest challenge?
My biggest challenge besides when I was sick is when other kids found out I had cancer they look at me differently. I try not to worry about it but sometimes I can tell by the way they look at me. Also I had to miss 6 months of school so I had to redo a year of school which separated me from all my best friends. Of course I stayed close to a lot of them but because I did not see them anymore at school I had to start over. I always felt like I was not where I was supposed to be. I met a lot of new nice kids but never felt right. I worked really hard and studied a lot and after two years I wanted so badly to move on to middle school with my best friends. My mom and I went to the school district and they helped me skip sixth grade and start middle school with all my old special best friends. It was the best day!
Another big challenge was the nightmares I had in the hospital and that continued at home. I would sleep and wake up because I thought someone was going to put a needle in me or do a procedure. ( I would remember things that happened and think they were happening again) Now I have a new challenge that I will beat. I have lymphadema but I will find a way to make it better. I am just sad because I love running and I have had to stop sometimes because my leg and toes hurts so bad…Most the time I can keep going but it hurts lately. I will figure it out because I love running!
Tell us about SkinCancerSkinks.org. How did it all start?
I made a shirt for a run I was doing to raise money for pediatric cancer. I came up with “Sunblock Stinks? Cancer Stinks More!” Because kids would ask me, “Why are you wearing sunscreen, you stink!” I would say, “Cancer stinks more!” Then once I taught them about melanoma they all started wearing sunscreen. I wanted the world to learn about preventing skin cancer and how to detect it early too so they won’t have to go through what I did or pass away like people I know. So my mom helped me start Skin Cancer Stinks. I have had celebrities and very nice people help spread my message about skin cancer to save lives. I am so grateful for their help and I have received emails that people have gone to the dermatologist and it saved their life or they stopped tanning. Sometimes I think I just want to forget about cancer and not talk about it but then I am so happy when I hear it actually made a difference. It makes me so happy when other kids want to now help educate too. I hope to maybe be a Senator someday to really change laws and help people.
What would you most like people to know about skin cancer?
It can be prevented! Wear sunscreen or stay in shade. Have fun but protect your skin. Also to see a dermatologist often. Pay attention to your body and follow your gut.
Is there an inspirational quote, song, or book that inspires you that you would like to share with our readers?
The song, “Think Good Thoughts”, by Colby
What advice would you give someone who thinks skin cancer won’t happen to them or a member of their family?
I didn’t think it could happen either. But it did. It can happen to anyone at anytime. It does not matter your age or your skin color. Please listen and take care of your skin. Please see a dermatologist too.