Tag Archive | linear epidermal nevus

Our promise to you…

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What’s to come in 2016?

As we tread towards our first full year up and running we want to give you an idea of what’s to come, If you are new to us and seeing this for the first time, I encourage you to read the very first post on our page “A tale of scales” and see what this venture is all about. Here is part of our line up.

  • End of January we will be meeting up with a fellow Nevus owner face to face to swap stories and learn more about her journey through childhood to adulthood with this disease.

 

  • I recently got an invitation to participate in a research study with Kaiser Permanente where I would provide my DNA and health information to the research center. They will use it to study how genetic and environmental factors affect health and look for new ways to diagnose, treat and prevent certain diseases. I will be looking into the possibility of Mermaid joining this study as well.

 

  • Remember, Mermaid’s official biopsy reading was:

-Epidermolytic hyperkeratosis.

Exam demonstrates aconthotic and hyperkeratotic epidermis with focal dyskeratosis. The differential includes linear epidermolytic epidermal nevus and epidermolytic acanthoma.

So what does this mean? Officially, this means that Mermaid has linear epidermal nevus, which occurs in 1 out of 1,000 people. However, the rare subtype of epidermolytic hyperkeratosis only occurs in 1 out of 2/300,000 people worldwide. We are going to dive further into what this truly means long term.

  • We will have a routine check up in the next few months and report on growth.
  • We are hoping to change the format of our site and be able to do some give-aways of all the amazing products we have encountered from local vendors.

 

  • There seems to be a lot questions surrounding the possibility of increased risk for a Wilm’s tumor so we will diligently research this to the best of our abilities.
  • We will hold a fundraiser for a research organization and donate on behalf of all of us.

Whew… looks like we have a lot to dive into!

We want to thank each every one of our readers and followers for spending the last 9 months with us, you have changed our world and given us strength we may have never attained on our own. If you would be willing to share your pictures or stories for others to see we would love to hear from you and feature you one month this year. I remain committed to understanding all forms of Nevus and continue my personal education to speak factually about it. If you are not yet following us, it’s easy, either change the view on your mobile phone to desktop view or from your PC go to the lower right hand corner and click follow.

Thanks for walking with us today,

Mermaid’s Mommy

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Wild for you…

I’m always so excited to see the products we love pop up unexpectedly. I was recently at a friends house and spotted a bottle of Wild Carrot HERBALS product in her kitchen window. Being that I had never even heard of them until this new venture of Nevus entered our life I was kind of tickled. While shopping at my favorite natural store I came across a whole shelf of products, some of which I had never even seen before!

 

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I will forever be grateful to this company for sending my family an amazing package of their products which we have used in several different situations over the past 9 months. Most recently after trialing a cancer agent, we used the turmeric salve to heal a small burn, and it worked like a charm.

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If you are interested, check out their website at http://www.wildcarrotherbals.com ; they currently have  a sale going on. I’m heading there now!

Thanks for walking with us today!

Mermaid’s Mommy

Will “It Work?”

When it comes to trialing products, aside from a basic moisturizing product, I tend to shy away from Mermaid’s largest area of nevus. Not only is this part of her nevus in a sensitive location but it is the largest area.

However, I feel confident that this product deserves a fair shot to show its potential.

I’m sure by now you have all seen the recent rave over “it works” products. From body wraps to a daily dose of greens to essential vitamins. I have to admit, I recently jumped on the band wagon and purchased a few products.

One that caught my eye as a possible benefit for both myself and Mermaid was the exfoliating peel. Being someone that suffers from eczema on my face and arms it was a no brainer for myself. I get embarrassing spots, though small, on one of my arms and my cheek that crack, bleed and flake. The true purpose of this product is not intended to aide in eczema, and certainly not any form of nevus, but it does state that it will reveal softer, smoother skin.

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The product states that it is intended for the face and neck and we all know our faces are most sensitive. If its gentle enough for that use I see no qualms about testing it on Mermaid’s underarm.

We will trial this product at the 2 times per week per its recommended use for 2 weeks. During this time I will stop all other products to give it a true chance to shine.

Product Highlights

  • The Exfoliating Peel uses microbeads to quicken the process of skin turn over. By rubbing these microbeads on the skin you’re helping to exfoliate and rid the body of old skin cells, allowing the new skin cells to surface faster than they would naturally.
  • These microbeads are encapsulated with aloe, a super healing nutrient for the skin. The process of exfoliation can sometimes cause irritation, but the presence of aloe helps to avoid that. Aloe is a natural anti-inflammatory. As the microbeads are rubbed around, aloe is released to sooth, calm, and hydrate the skin.
  • There are NO HARSH CHEMICALS! The contents of the Exfoliating Peel are derived from fruit and are botanically based active ingredients.
  • The peel takes it all off revealing healthier skin and a more natural healthier you!

Here’s what Mermaid’s nevus currently looks like.

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Looking forward to seeing what happens! Stay tuned for results…

Thanks for walking with us today,

Mermaid’s Mommy

2015 in review

It’s crazy to think that I started this project as an outlet for myself, a place to journal and maybe, just MAYBE be a place for one or two other people to land while feeling lost; as I was.

In 9 short months people stopped by 6,500 times to see what we were up too. Thank you all for your interest and support. You will never know how much it means to us and we hope to double that in 2016!

HAPPY NEW YEAR!

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 6,500 times in 2015. If it were a NYC subway train, it would take about 5 trips to carry that many people.

Click here to see the complete report.

Staying afloat…

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As you may or may not know, the Pacific Northwest has been under a stream of storm systems causing flooding and power outages. I have been on a 2 day staycation and without power for the duration of it. Needless to say… I have been disconnected.

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Mermaid and I went for a short drive up our road to check out some of the damage. The power lines must have felt festive because they managed to wrap themselves through the trees like Christmas lights. We could hear generators running in the distance and saw neighbors along with PGE crews working diligently to cut and move downed trees.

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Outside of our drive; my dimly lit, slightly chilly home is my whole world. As Mermaid naps I sit writing in my trusty notebook by a lantern . (To be fair I am finally getting this typed up as I get a pedicure) It may sound far from ideal but being unplugged from the modern world got me thinking, my stress level is nearly non-existent. Without the constant stream of e-mails, texts, tablets and tv’s going; my focus has been on the simpler things in life.

Building castles, making shadow puppets, wrapping presents, reading, writing and reflecting. Part of that reflection has been pondering what initially caused all my anxieties around Mermaid’s disease? Yes, the initial diagnoses left me saddened but it wasnt until I started surfing the internet that I became so fixated on the potential negative effects of her disease that my fears were magnified. As I watch my seemingly happy healthy child live almost as normal a life as anyone else I think back to those first days. What if I accepted her diagnosis and left it at that, never looked anything up? Its funny, working in the medical field I am fully aware that turning to the internet for answers is one of the most detrimental things anyone can do, yet I did it.

So I wonder, had I been unplugged from our modern world at that time, would I have gone racing to the nearest book store or library looking for medical journals in search of cures and answers? Maybe, but maybe not. Maybe I would have accepted that first short visit as the end of our story and had the faith to blindly walk this path. I suppose we shall never know, and for that, I am thankful.

We live in a world where being uplugged is rare ,and for some, never happens at all. When my power returns I will be inundated with emails, fb alerts, picture texts and emails. This is a good thing, it means I am loved. Ok, maybe Amazon Prime doesn’t LOVE me, but they certainly want to make sure I don’t miss the next big deal!

I was built to find answers, I say I am thankful  for not being a part of the unplugged world because I am one of those  people constantly looking for logic and fixes. My need to have a direct answer to something has been both a negative, and positive in my life. In this case, I see it as a positive.

We all know this disease is somewhat manageable and the likelihood of one of those more severe complications is slim; but on the chance it occurs, I plan to be prepared and educated for what that might look like.

By means of the information super highway that provides me a road map of every potential route, through your stories and all our experiences I will continue to search for those answers and truly hope you continue to do that with us.

Until the power returns and my anxieties slowly creep back, I will enjoy the quiet. I will sit and listen to each raindrop hit the roof, each crackle of the fire and enjoy my Mermaid without distractions.

Where I may not be built to always be unplugged, I must say – I am enjoying it. I challenge both myself and all of you to unplug for a while and see where it takes you. Then rejoin the world and stop in to tell us what you did!

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Stay dry my friends…

Thanks for walking with us today,

Mermaid’s Mommy

Lost in translation…

I feel like we have been consumed by the holiday season, in a good way, but off the grid for a bit. I finally got to work and made some changes to our website.

We now have a page titled “Honorary Mermaid’s” that will house stories about other people’s journeys, afterall – were all in this together! A Mommy’s Mermaid follower and fellow support group member will be featured in January. Looking forward to finally meeting in person and hearing her story.

All other pages have new and updated info so swing in and catch up!

I wanted to share a quick update after our wartPEEL trial. Mermaids nevus is still flat and smooth a month later. She is so proud of it and often shows me how her “owie is gone” – though inside I expect it will return in time, I will take all the days we get without an elevated, painful, itchy nuisance stealing her focus.

Here is a picture of before and now…

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So stop in, see what’s new and we have more to come over the weekend.

Hoping this holiday season is greeting you all in good health and good spirits.

Thanks for walking with us today!

Mermaid’s Mommy

Holiday closure…

This morning my husband woke me to tell me that the ground was covered in snow, he knows I love that sight. It made the morning peaceful and magical. As Mermaid and I listened to Frank Sinatra on the way to school with flakes falling; I glanced back at her in my rear view mirror gazing at the snow-covered trees and thought to myself, Happiness.

I spent the past few weeks writing down all the moments in my day that made me go Ahhhhh…. those times something really struck me as a moment of gratitude. My list is big to say the least; coffee, warm showers, my readers, my Husbands strength, parents that live close, co-workers that thank me when they don’t need too and so on. It’s certainly proof in itself that I truly am blessed, but towards the middle of the list it says “CLOSURE”, I remember the day I wrote this and I think looking back on my year, closure is absolutely the thing I am most grateful for throughout this chapter in my life.

I speak very little about the struggles I have faced both physically and emotionally over the past 4 years. It hasn’t been all bad, don’t get me wrong, there have been amazing times as well, but a little more difficult to navigate. To save you from a novel I will share the lowlights of this time. I use to work for an extraordinary Physician named Dr. Andrew Lum. Someone I considered more of a Father figure than a co-worker. He taught me skills beyond my ordinary reach, compassion and life lessons I use to this day. He had this infectious laugh and he and I often got carried away in our jokes and joy. Work didn’t feel like work with him, he changed my view of medicine and what it means to help people. Andy fell ill in the fall and was off for a short while as they attempted to find a cause. On Dec 5th 2011 I received a message from him that he would be returning to work that following week. That was the last normal conversation I ever held with Andy; and the beginning of many difficult changes for myself.

Shortly after that message Andy was placed into a medically induced coma, he had complications from a disease called myoendocarditis. Multiple clots, aneurysms, brain surgeries. He never returned. I visited Andy in the hospital, care facilities and then I stopped. As far as I was concerned the man I knew no longer existed, he couldn’t walk, talk, eat, laugh, he was lost; and it only brought me pain and anger to see what he had become.

During this time I was blessed with the gift of my baby girl, despite being told it may never happen. Unfortunately that blessing came with an extremely difficult pregnancy, for those present they can understand just how challenging it really was – and no – I don’t just mean the part about me being an asshole. Though I feel absolutely no regret for throwing away your lunches. I had a tough delivery which resulted in an emergency C-section and despite being over the moon about our new edition to the family, I was struggling to heal and felt ill constantly.

Upon my return from maternity leave I switched positions within my company in hopes to leave some of my sadness surrounding Andy behind and better my hours for our little one; but right after doing so is when Mermaid was diagnosed with LEN. I struggled to come to terms with her condition, an incurable disease just did not sit well with me,  and was still fighting a physical illness. I remember my first year in my new position, I sat behind my office door and cried three out of five days a week. I cried about Mermaid, I cried about being sick and in pain. I cried about being somewhere new and not knowing people the way I did at my past clinic, I just cried.

At the beginning of this year I had a hysterectomy. I handled it well, I knew it had to happen and understood its importance for my health. I was strong about it. Until about 2 weeks later. I remember sitting on the edge of my bed and out of nowhere, I lost it. I sobbed. I was completely overwhelmed with grief. I knew I had no other choice in that situation and maybe that’s what it was, the not being in control of my own body and happenings, I wasn’t pining for more children but having that right to decide taken from you… hurts. My Husband held me for a few minutes and told me he understood and I knew he did. I stood up, brushed myself off and never looked back.

Over the next few months I started to heal physically and emotionally. I found my roots in my new office and the idea of this, of Mommy’s Mermaid, started to take shape. Re-directing my negative energy to something positive allowed me to move past the shadows I had been living in for several years and find my happy motivated self again, but something was still lingering.

About a week ago I got see Andy. The progression he had made was nothing short of a miracle in my eyes. He recognized me, we talked, he walked, he laughed – oh did he laugh. We hugged and hugged again, his amazing wife Dale joined in on the hugs and told me all the wonderful things happening in their lives.  It dawned on me while visiting that I had turned away when Andy became lost, but he was now found again. Perhaps it was because I was just as lost at that time and had nothing left to give. Despite the reasons, we sat there together again, both with our recent new findings of strength and I walked away with a full and happy heart. That day, below Eddie Vedder, I wrote down “CLOSURE.”

Had I not traveled the road I did the past few years I don’t know how genuine my feeling of “happiness” would have been this morning as I glanced back at Mermaid, but it was. The fight to overcome and come out the other side makes victory sweet.

I now have closure on Andy and I’s rocky journey and know he is happy. I have closure on my families journey to expand and can look to the future with my health, and I have closure to my fear of Mermaid’s disease because I have all of you to walk through it with me.

It’s that time of year where we look back at what we are thankful for and yes, I am thankful for my friends, my family, my home and my job, but this year – I am most thankful for closure. As this chapter closes and another one opens I thank my family and friends for sticking through it all with me, but most of all, I thank my best friend, my husband. For he stood strong as I crumbled and continuously picked me up, He watched my health deteriorate, my happiness disintegrate and yet still, believed in me. He loved me through it all, To you I say: “Il n’y a qu’un bonheur dans la vie, c’est d’aimer et d’être aimé.” – There is only one happiness in life, to love and be loved.

“There’s a trick to the ‘graceful exit.’ It begins with the vision to recognize when a job, a life stage, or a relationship is over — and let it go. It means leaving what’s over without denying its validity or its past importance to our lives. It involves a sense of future, a belief that every exit line is an entry, that we are moving up, rather than out.” ― Ellen Goodman

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I asked friends and family to share with me what they are thankful for this year in words or a picture and how joyous it was to hear them share…

“The love of good man, a roof over my head, my family’s health, my adorable nephew and my niece that’s due the day after Thanksgiving, a job I enjoy, the best friend’s a girl could ask for…”

“I’m thankful for peace on earth where there is peace, thankful for coworkers and friends I CAN TRUST, thankful for my daily LITTLE struggles as they keep me going, keeping me thankful and my mind open:)”

“I’m thankful I still have a friend like you in my life. “ (and I for you my little cajun partner)

“Working in health care, particularly Oncology and the kind of illness I see people with day-to-day I am thankful for mine and my family’s health this year.”

My personal favorite…

“Many chances… not just the second but the third, fourth and tenth as well – and possibly more.”

My how we should all be thankful for chances.

And the pictures? Love them… Can you tell were from the Northwest?

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I challenge you all to think about what you are REALLY thankful this year.

Looking forward to a year full of joy and adventures!

Hoping this week’s Holiday greets you all with good health and good spirits!

Thanks for walking with us today,

Mermaid’s Mommy

Peeling away our blemishes

I am so excited to share results from our trial of WartPEEL. If you missed the post explaining what the product is just scroll down to the last one and read up. It really is worth educating yourself about and considering a try.

Being that this was our first trial I was indecisive on how many nights to apply it and the exact quantity so we fumbled through this a bit. In the end we applied the WartPEEL to Mermaids wrist for 3 nights.

In all honesty I was shocked after the first application and thought I had done something wrong until I read more about how it works and realized it was ok that it appeared “worse” than better.

So here is what we were working with before using the WartPEEL. Now remember, I chose the spot on her wrist because she verbalizes that it is bothersome to her. It’s difficult to tell in the picture, I should have gotten a better angle, but the crease on her wrist houses a raises patch of Nevus that causes her much angst.

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Mermaid’s nevus is beginning to spread up her arm and hand but thus far is flat. This area on the wrist is much thicker than the picture gives credit. Its rough, bumpy, scaley and bothersome on many levels.

Now to see how it did…

Below are days 2 , 3 and 4 the morning after application.

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a different view…

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The medication requires that you allow 15-20 minutes to dry prior to placing tape over it for the night. However, it also states to wash your hands immediatley if you come in contact with it and I was given direction via phone to ensure my Toddler did NOT touch the product. That being said attempting to get a 2.5 year old to stay still and allow the medication to dry without touching it is slim to none. I covered it immediately after application leading to some of the medications spreading off the direct target and causing mild irritation.

We used one of our generous gifts from Wild Carrot HERBALS called triple Tumeric Salve to help eliminate the redness and swelling in the few days following. Turmeric has been used for thousands of years in Ayurvedic medicine. It offers incredible anti-inflammatory and anti-fungal properties. It is also known for making skin tags, moles, and unwanted skin growths to fall off or disappear.

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Embrace the color, it will be with you for a while but learned it truly IS an amazing product!

In the end, nearly 2 weeks after we started this adventure we are both THANKFUL and HAPPY to show you that Mermaid’s Nevus is no longer present on her wrist.

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In comparison from day 1 to now…

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Allow me to answer any questions I feel might arise… Yes, the redness will continue to subside. No, it will not scar. We will not be using the medication again until it returns and creates problems.

What the pictures cannot show you, is that Mermaid’s wrist is now smooth. No more callus like lesions.

Mermaid will even tell you herself, her owie is all better. I am thrilled with the results and so humbled that this was brought to our attention.

Remember I told you a friend, and fellow Nevus Mommy came to me privately with her own experiences. One major struggle for their families  little is that she has a patch of nevus that grows so thick on her heel and foot it is painful and at times impossible to wear shoes.

Here are a few collages of their WartPEEL results. Knee, foot, ankle.

Left shin collage

Left toe collage

Left heel collage

AMAZING!!!

It so important to remember while gazing through these pictures and trials that this is not just about cosmetic changes. Removing raised painful patches of nevus means comfort. Im sure you can imagine how painful it can be for everyone, both physically and emotionally, those mornings our little ones cried because their shoes hurt or the coat sleeve was too tight and rubbed. One small adjustment in their quality of life is worth every moment we dedicate time to a regimen.

This weeks score… Nevus 0… Mommy’s 2!

Thanks for walking with us today,

Mermaid’s Mommy

A fish tale…

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The legends of Mermaids have long been discounted by modern-day society, they exist only in folklore and fairytale’s. Perhaps they never really existed, but maybe, just maybe… there is truth to those stories.

Some believe Mermaid’s are aliens, coming to us through a wormhole; others, that they are a bad omen – set out to lure men of the sea to their death, and then, the most popular are the tales of a half fish-half woman creature sitting upon the rocks and shores brushing her lavish long hair while singing to her God Neptune in angelic, hypnotic voice. These tales claim that Mermaid’s had a kind demeanor and saved many men from an uncertain fate.

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Believer or not, the conundrum of a Mermaid is nothing shy of fascinating.

It is said that a Mermaid’s complexion is pale and their skin is flecked with shimmery scales. Though you may not notice this as they tend to cover themselves with their wonderous hair.

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Mermaids feed on small fish and kelp. I once asked my Mermaid what she ate when she lived in the ocean and her response then and now has always remained the same. “Little fishes!” She is adamant that at no time did she ever eat crab, seahorses or big fish – only “little fishes!”

Coming from the sea Mermaid’s require hydration so their need for water is their biggest weakness. I read once that while in human form they donned webbed hands and feet.

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Aquamarine, known as the “gem of the sea” is spoke of in legends to be tears of Mermaid’s that hold the power to keep sailors safe at sea. Others claim it was the sacred stone of Neptune, washed upon shore as a gift from the God’s.

Mermaid’s have the ability to control basic elements and weather, they can transform into smaller mammals and even fade away becoming invisible. They love to be free but it is said that they grow lonely and have no power of their need for love. Its is believed that this need to be loved is what brings them to the surface. Watching men from afar feeding their curiosity. during shipwrecks and storms they would save men and it is then, that they would fall in love with humans.

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Ok, so maybe the idea of a half Victoria’s secret model – half tuna, lounging on the jetty stalking pirates is a bit far-fetched, but I will tell you this – something that has the ability to cry pricey gemstones and part the seas receives a glimmer of my belief. Let’s face it, I have no intentions of meeting my own uncertain fate for doubting her being.

Fact or fiction the idea of my baby once being a Mermaid has brought light to an otherwise dark subject.

As Mermaid and her lifelong pal go through life maneuvering their oddities of scales and webbed feet, they are bound to face struggles. Perhaps struggles of pain, itching and surgery, or perhaps bigger ones. The need to hide their gifts, feeling different or being teased. Together, we will face those struggles as we are faced with them. For now, if only for a while, I can enjoy my Mermaid embracing her sea life. When she tells me stories about eating “little fishes” and swimming so fast with her tail, I will smile. If she believes her scales will disappear if she doesn’t take a bath or use her special soap – I believe it too.

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I recently had the pleasure of a local photographer,  who I now call friend, take interest in my blog. She generously spent a day with us, a close friend of ours and our little blessings taking pictures. Here’s the ringer – not only did she arrive at the location but brought a second photographer and a wooden sign she had purchased then had designed by another source. Her genuine desire to help raise awareness is beyond appreciated.

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I cried driving home that day. I had to leave rather abruptly as Mermaid needed a nap in the biggest of ways so I never really got a chance to tell everyone what they did for me.

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I choke up as I write this in a happy, humbled way. You see, time has proven that Mermaid’s case is far less severe than it could have been and our journey thus far has been relatively easy. I could stop writing about it and be satisfied with how far we have come, but I have to remember why I started this. I remember how I felt after first learning of her disease and the sense of loneliness. I remember that I longed for someone to tell me it was going to be ok. I can not tell everyone its going to be ok, because the truth is, for some, it might not. I can not think that a cute little blip about a mythical creature will warm your heart, but I can show you, through this encounter that people you would never expect to care, do. For 4 Women to lend their talents, oddities and identities to our purpose, I thank them.

You have assisted in one small step towards teaching the world about nevus owners.

I thank you for seeing our vision and letting these two little girls be portrayed as fierce, powerful Mermaid’s, if only for a day.

So today, Kinna Clark, Geneva Richardson, Coleen Papike-Robbins and Andi Hakanson, you are our honorary Mermaid’s. May you find freedom in the seas!

To see more work by Kinna Clark go to:

Www.geminiIImages.com

Thanks for walking with us today,

Mermaid’s Mommy

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Prognosis Happiness

To date, this is the most important piece I have ever written. Most important because our family can now embrace Mermaids disease with a true diagnosis  and make constructive but cautious decisions about our future with the right information.

We have so much to share you might want to pause here and move somewhere comfortable…

Ready???

This week we not only received the long anticipated biopsy results but got to meet Mermaid’s new dermatologist and I must say, she was a ray of sunshine in our cloudy little nevus world.

The next sentence is my favorite collaboration of word’s I have ever put to print. MERMAID DOES NOT HAVE CANCER. There is always that higher potential of cancerous cells developing in nevus owners but we are officially free & clear at this time. To be fair, we knew that piece a few weeks ago. Our Primary Care Dr. let us know but we wanted the final reading before sharing. Needless to say I slept a smidge better the night we found out.

Here is our official biopsy reading:

-Epidermolytic hyperkeratosis.

Exam demonstrates aconthotic and hyperkeratotic epidermis with focal dyskeratosis. The differential includes linear epidermolytic epidermal nevus and epidermolytic acanthoma.

So what does this mean? Officially, this means that Mermaid has linear epidermal nevus, which occurs in 1 out of 1,000 people. However, the rare subtype of epidermolytic hyperkeratosis only occurs in 1 out of 2/300,000 people worldwide.

There is a grey area, we cannot yet rule out ILVEN.  The biopsy site did not show the specific subtype but Mermaid has had several occurences that I was able to photograph and share with her new dermatologist. She agreed it was inflammation and said it may in fact be an early onset of ILVEN. We will wait and see what the nevus does from here on.

I know not everyone understands what this means so I’m going to break it down a bit more.

Linear epidermal nevus (LEN) is an uncommon skin condition. It usually affects the limbs and torso on one side of the body. The lesions are typically present at birth. LEN is the result of a genetic abnormality. It is not inherited but arises from somatic mutations in cells that occur after conception.

Linear epidermal nevus follows the lines of Blashko, which are invisible on the skin but thought to follow the paths which cells migrate as the skin develops before birth.

LEN can be linked to complications such epidermal nevus syndrome; abnormalities effecting brain, internal organs, eyes or bones. Tumors can also arise within the lesions. They may be harmless and simply need removal or may be a form of skin cancer.

We can happily report that as of this moment Mermaid does not harbour any of said abnormalities. All our tests and check ups thus far have come back clean.

If she does indeed develop ILVEN the potential treatment options and complications change a bit but the two are extremely close in comparison.

We were also told at our visit that Mermaids chances of developing a Wilm’s tumor are very unlikely as she would have already developed some of the other abnormalities effecting the organs. (I wont personally celebrate until her 6th bday!)

Mermaid occasionally gets small lesions on her scalp which we were asked to come in and have swabbed next time they occur. We were also able to discuss the possibility of Mermaids overheating being correlated. This is more common with giant nevus but it may be that Mermaids sweat glands are not working correctly in the area of her nevus. We cannot say definitively this is or is not the cause as there is no way of knowing for sure and we will continue to monitor it.

From the beginning of this journey I have been plagued by the thought of my Mermaid being teased or self-conscious about her “birthmark”. As we have learned more about her disease and gotten to know fellow Nevus owners that fear has only grown. The emotional effects can be devastating for Nevus owners of all kinds.

We have been lucky thus far that Mermaids nevus is mostly unseen by others with the exception of her arm & hand. Mermaid is very protective of her hand and rarely lets me photograph or touch it. At our appointment it was noted that her nevus is starting to come up over her palm. I can pray this doesn’t happen but on the chance it does I was FINALLY able to have that conversation about what treatment looks like in the future.

In the future, our dermatologist offered a form of cauterization in office that can help flatten and smooth the skin. We discussed both the pluses and deltas of co2 with a decision to avoid that route and of course, the talk of removal.

On the chance Mermaid’s nevus continues to thicken on her hand and move over her palm we will need to take action. At school age we will go through with removal. This can be done by our healthcare system here opposed to out of state which we originally thought.

This decision is based not only on a cosmetic and emotional basis but on the grounds of physical irritation it has caused.

I feel like it has been a struggle to get to a place where we understand our path moving forward; but we have arrived.

Our dermatologist is supportive of our trials, we will see her once every 6 months unless needed sooner. If Mermaid inflames on a more chronic basis or develops the spots on her scalp we will return. We will monitor her body temperature and physical discomfort, being conscious of potential tumors. In a few years we will revisit the surgical options and until then, we will continue our journey with LEN.

I know that our recent decision to find new care and push for more solid diagnosis and treatment information will free me from so much fear.

To all you rare and beautiful nevus owners, we hope our struggles to find the right care and options brings you a sense of direction and understanding.

Thank you to everyone for supporting us up to this point.

Thanks for walking with us today,

Mermaid’s Mommy

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