lynsey and ryan with parents gail and ken pina colada pineapple kit sun protection

Where the Heck is the Instruction Booklet for This? A Parent's Perspective on Melanoma

As parents, we are programmed to love and give our children nourishment for their minds, bodies, and souls. What a pleasure to teach the importance of faith and the love of God, or of reading a great book and the places it will take you. Or just about the happy endorphins of dancing, cleanliness and proper exercise with the right equipment for doing your best. How to prepare a balanced meal (haven’t we all made a heart shaped meatloaf masterpiece).

We teach proper dress and body image – “a little less skin please!” “You are beautiful without all that makeup so go and wash your face, now!” and behavior in social settings – “No jumping on Nana’s furniture please!”, “Don’t touch a hot stove!” right down to, “No open toe shoes for interviews”. We are the first teachers of these beautiful young people. We give our all to protect and shield from danger, to instruct in right and wrong. None of these lessons are simple but we do our best with all of the lessons passed down from one loving parent to the next.

lynsey capone smith and parents wedding day kiss cheek flowers 

Well, this booklet of lessons missed some huge ones -- like what to do when dun.dun.dun.dah... the “M” malignant word enters. What can we do to shield her when the danger comes from inside our little one who is not so little anymore (though always our baby girl)? This was the way it felt with Malignant Melanoma, which like so many other deadly diseases, is still without a cure.

With our years as pharmacists, at the time of Lynsey’s first diagnosis of Malignant Melanoma, we were blindsided. Who to call? How can this be? She is only 21, isn’t this old man cancer?! If we can take this from her -- let it be us! Let me fix this -- kisses always worked before! So much guilt came with her diagnosis. Why, dear Lord, did we have a tanning bed in the house? Why did we travel to tropical hot spots for breaks? Why did we buy #8 or #15 suntan lotion and not promote SPF55 sunscreen?! What were we thinking?! Protecting her from hot stoves...but not from the sun! The beautiful sun that rises all purple and pink and sets all flaming reds.  How can this be?

I took a step back and told myself, “Suck it up buttercup.” (Lyns says, cover up buttercup) this is not about us. BUT somehow it is, this is OUR child, always our little one and we were helpless.

Now we are writing our own pages of the parenting instructional booklet. Lynsey asked us to share our feelings on being the parent of a Melanoma Survivor and what prompted her Dad to get his skin checked. Well, the short answer is -- she did! In 2013 I noticed a mole on Ken (Lynsey’s Dad) that looked different (size/ shape/edge and color). Of course, being a man he said: "it's fine". I did the guilt thing and said: “You need to get this checked or I will call the kids” – my have the roles changed!

Quick appointment with the doctor and the seven day wait for results gave us a MM insitu diagnosis. Then we were then to the surgeon who recommended we come back for excision at a later date. Ken decided to follow his daughter’s lead and get the surgery done right then -- why wait? Let’s get this done and off his body!

Flashback to Lynsey’s original surgery in 2001 when she couldn’t show her Dad her wide margin excision. Her words, “I don’t want him to think I am ugly and get grossed out by the way it looks.” and Ken’s response as he hugged her close and kissed her tears: "You are beautiful inside and out and I wish I could take this from you if I could." He now joined the club with her, had his own battle wound and compared stitch count with Lyns -- always a bit of playful competitiveness in our home!

Now our parenting booklet includes first and foremost –sunscreen and skin checks. Then lots of love and kisses -- you can never have enough! We have become stronger somehow watching our daughter step up to this life challenge and continue her healthy lifestyle through triathlons. Not just the beautiful sun safe Tri Sirena gear (which she and her survivor tri friends rock) but giving us more courage than we thought we had in ourselves.

Lynsey has taught us that, man oh man, we can do anything if we give our all and show our passion. She will deny she teaches these things since she is so very modest and humble, but she truly has, in the poise she shows as she bares her beautiful self to the world. Lynsey has lifted both of our faces back up to the sun with her strength, determination, and resilience! Every diagnosis and surgery (over 120 biopsies to date) have been a test for each of us who love her.

lynsey capone smith with parents Gail and Ken

We have had to learn patience as we wait for her to call us with an update after her skin checks every 2-3 months. As I write this (in mid-April) we are currently waiting for five biopsy results -- prayers gratefully accepted! We have learned to pray more simply -- Thanking God for every result caught early or clean. Do we still pray for a miracle for Lyns -- absolutely!

There are so many things I would add to the parenting instructional booklet, oh so many things. But most importantly a special chapter on this. Love the skin you’re in and take care of it and never be ashamed of a scar, it simply means you were stronger than whatever tried to hurt you.

We thank our beautiful role model Lynsey for this attitude of gratitude.

Written by Gail Capone 

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