Tag Archive | skin condition

Buzz buzz little bee…

After using a product called WartPEEL on Mermaid’s thicker patch of Nevus it proved to be raw and a bit painful. I had been sent some amazing products from a company called Wild Carrot Herbals and amongst them was a salve. I personally had never used one but thought it might be the trick, within 24 hours all the rawness, swelling and discomfort was gone. I was beyond tickled and started reading more about “salves”.

Mermaid has one particularly “itchy” spot on her back so I thought I would take a swing at making my own. I researched all the ingredients that potentially soothe dry or itchy skin, a few recipes and came up with my own concoction.

I’m blessed to have a lot of savvy people in my life so most of these ingredients were gifts from people’s own labor’s of love. I included:

Pure raw honey – (given a jar from the neighbors hives)
Organic Beeswax – (given a bar made by my parents from their swarm)
Shae butter – (given a pure bar from a local Oregon company)
Lavendar oil – (a gift from Mermaid’s Grandma)
Coconut oil
Baking soda

The process in harvesting beeswax is interesting and my Mom had some pretty great pictures – here are a few.

We gathered our ingredients:

Started prepping them, if you have ever tried “grating” beeswax, it’s not easy, Mermaid gave up on that part and let Mommy finish.

Melted part of them together:

Time consuming, I learned quickly that slow and steady is required. After it was all melted we removed it from the heat and slowly added our other ingredients.

We poured it into a few containers and waited for it to cool. I feared for a minute that it might not bind, it stayed liquid for better than an hour and we continued to mix it, but eventually, it became this nice smooth product.

Given the ingredients I expected it to be slightly oily, which it is but we put some on Mermaid’s arm and it absorbed quickly with less grease left behind than I assumed would be present.

We added a little garnish and closed up our afternoon project.

I suppose the real test will be to see how well it really works, I have high hopes!

We are going to ship a container to one of our “itchiest” Nevus babies on the other side of the country and let them be the true judge.

We have plenty of leftover ingredients so I feel a round two of a lotion coming on.

Round one of find a natural aide complete.

Thanks for walking with us today,

Mermaid’s Mommy

Happy Mother’s Day!

May9

Mother’s Day, by definition, is a celebration honoring the Mother of the family, as well as motherhood, maternal bonds, and the influence of mothers in society. Over the year’s, like many other holidays, it has bloomed into a bit of a Hallmark holiday. Cards, flowers, a gift, perhaps a nice gesture… and done. I question if buying someone flowers and signing your name on a card really encompasses “honoring” what Mother’s really are. So this year (yes, we still made cards and will do a nice gesture) I want to capture a little about what makes Mom’s so special.

For me, I don’t think I ever really grasped how important or hard a job it is to be a Mom until I became one myself. Sure, my Mom always asked me if I had clean underwear on while we were driving to the Dr. (what would she have done if I said no?), she fed me ice cream when I had my tonsils out, carted me back and forth to girl scout meetings, softball, basketball, volleyball, took me prom dress shopping, bought me my favorite ice cream from the schwan’s man, and let’s just be honest here…. she still loved me through my terrible teens and early twenties when I thought I knew it all, yet managed to screw up everything.

My Mom also did some things I will never forgive her for, like letting my Dad drive us to my junior high concert in a yellow 70’s something Chrysler my Grandparents had given us, it was the size of a house, literally, you could fit 17 people in it comfortably and if my memory serves me right, we got pulled over in front of the gym for everyone to see. She took me through the bank drive thru with curlers in my hair for all the ladies to gawk at and I’m pretty sure I had a mullet for a solid 2 years. She made me sit at the table with a plate of eggplant parmesan in front of me for at least 14 hours, what kid eats that? Really, what adult eats that? Gross. She made me pick up filberts, apples and plums from the yard for hours. Ever owned a filbert tree? Your lucky. It’s a really quick way to turn your children against you. When I was a teenager, my Mom & Dad rode their bicycles through town in spandex and helmets, even to the river where I was hanging out with friends jumping out of a tree into the water cheering me on. Talk about embarrassing. Worst ever, wore matching fanny packs with my Dad in PUBLIC, once, for an ENTIRE vacation in California.

So ya, My Mom did the great normal Mom stuff, the embarrassing, I will never forgive or forget stuff… but she did two other things and these are the things I want to recognize today, as we honor our Mom’s.

#1. My Mom created stuff and let me be free. She did and still does all those things that are a dying breed. She painted, did ceramics, quilted, canned, made jam, salsa, sewed my Halloween costumes, gardened, took us to the river and let us run free while she enjoyed the sunshine and a good book, let me float the creek with friends and walk on the country road back home with no parents, let me ride my bike all around town with friends for hours, play kickball in the middle of the road with the whole neighborhood, go on a road trip with the neighbors, travel to Canada with my aunt and uncle, sleep in tents in the yard, be bussed to a school 20 miles outside of town in the middle of nowhere with about 20 kids where we learned about the forest, hiked and got to play hockey in the gym with the Portland Winterhawks… she taught me how to be creative and make things and live outside the box. She stayed close, but let me wander.

I look around my house today and see things she has created, and things I have created. Had she not done those things, I probably wouldn’t have either. I truly believe my expression through writing stems from feeling a sense of freedom for so long. The world feels like a different place now and some of the things we were free to do as kids may not pan out but I am grateful that at that time in my life, my Mom recognized that it was ok to let me find my own adventures. I already see myself doing the same things with my own daughter. Teaching her to cook, taking her to the river for the entire day while she explores, creating lotions and scrubs for her skin, it all stems from my own Mom’s creativity. For that, I feel honored.

#2. I selfishly resented my Mom for this decision for a long time, but stay with me, it makes sense, I promise. Up until a certain age my Mom was always around. She was there when I got home from school, took me everywhere I needed to go and tucked me in at night. She had gone to college when she was younger and graduated but didn’t find a good use with her degree, then came marriage and kids, for so long we were her world, and she was mine.

She made a decision when I was in grade school to go back to college to become an RN. Suddenly she was gone, or studying and wasn’t all mine anymore. After she finished and started her career she was gone nights, weekends, holidays… paying her dues as a new nurse, but all I knew, is that she wasn’t there as much. I don’t know that until this very moment that I have ever actually admitted that I was jaded about it for a while. When your young, you don’t always understand the reasons for adult decisions. I wasn’t able to see that as much as she needed her own identity, she did it for us, her family.

As an adult I now understand and respect that decision. I can’t imagine our lives had she not made that decision, but I didn’t always make it easy on her, I became a rotten and at times ungrateful teenager and for that, I am sorry. As I look back now, and from a “Mom” perspective, I can’t even begin to imagine how hard that was. To juggle family, home, work and school, it’s a tough feat. Something I certainly do not long to do. As a result of her decision she has done some of the things that make me admire her the most. Like working in hospice. A job where you are there to make people comfortable in their end days, you become attached to their families, to the patient, only to have to let go. A job I truly believe only an angel can do. She worked her way through the ranks managing many different units and teams, worked in critical settings making life decisions and made career choices that ensured a better future for all of us.

I didn’t like college, more than a few times I changed my path, stopped going, wanted to quit… but I knew if she could do it with all those other factors in play, I could too. My Mom gave me the strength to finish, and for that, I am honored.

It’s important for me to recognize the things I did not always understand at the time because one day, I may be in the same boat with own daughter. On the flip side, it’s equally important for me to share what these things mean to me today. I am much better at putting things in writing than saying them in person so I dont give my Mom the credit she deserves on a daily basis but need her to know her worth.

Our Mom’s are so much of who we are, I only hope that when my Mom looks as me, it’s with the same pride and honor as I have when I look at her.

There is no truer statement than “it takes a village”, I had surrogate Mom’s that took me in as well, Aunts galore; Cindy, Leora, Pam, older cousins, My Mom’s best friend – my Aunt Miss, my Godmother Peggy my best friend’s Mom’s Tammy and Maryellen, they all fed me, kept me in line… called my real Mom when I was hanging out with boys I shouldn’t have been or throwing parties when my parents were gone, thanks for that by the way, but they too helped plant seeds of freedom, creativity and hard work. As I look back I feel so thankful for my village.

I now have my own daughter, and she too, has her own village. Where I try to instill all the wonderful things my village gave me, I am a working Mom, I love my job, I sometimes contemplate if I’m doing the right thing, that perhaps I should stay home with her, but the truth is, I am my best me when I have more than one responsibility. I was nearly 9 years into my career before she came so in a sense, it’s my baby too.

When I cannot be there she is in the hands of her teachers who have helped raise her since she was 4-months old. A group of Women who I trust whole heartedly to do right by my precious gift and encourage her free soul. She has Auntie Nay and Grandma who step in when needed. She has Mommy’s friends Jen and Molly who treat her as their own and she has this whole network of people here, from around the world, rooting her on in her uniqueness.

My favorite thing about being a Mom is watching the world through Mermaid’s eyes. With the exception of believing swiper fox will steal everything she owns, she is unscathed. Everything is amazing and exciting. The tiny villages of ants in our yard are a precious world to her. She thinks the bees live here to make honey just for her. There is no concept of time outside of light and dark and responsibilies are an after thought. She believes she is a ninja, a mermaid and a chef, so I believe she is too.

This Mother’s Day, opposed to just a card or a nice gesture, I challenge you to tell your village those things they did that make you proud, the things that make you feel honored to have them. The things that added value in making you who you are today.

To my Mom and my village, where I know I did not always make the best choices, I came out on the upside because of who you all have been for me. Mom, I am proud and honored by each and everything you have taught me, each and every decision you have made for me, be it easy or hard, and thankful that you were chosen to be mine.

Happy Mother’s Day to all my fellow Mommy’s.

Thanks for walking with us today,

Mermaid’s Mommy

Isotretin what?

May7

ok… it’s Accutane, otherwise known as Isotretinoin or Roaccutane, depending on what part of the world you are in. Most of us just think of it as acne medication but has recently been suggested to a friend for ILVEN. So let’s take a closer look at how it works and the risks.

Accutane is a form of vitamin A and is part of a class of medications called retinoids. It was originally marketed as a chemotherapy drug.

Exactly how Accutane works on a cellular level is unknown but we do know that it affects all four ways that acne develops.

1. It dramatically reduces the size of the skin’s oil glands (35%-58%) and even more dramatically reduces the amount of oil these glands produce (around 80%).
2. Acne bacteria live in skin oil. Since oil is dramatically reduced, so is the amount of acne bacteria in the skin.
3. It slows down how fast the skin produces skin cells inside the pore, which helps pores from becoming clogged in the first place.
4. It has anti-inflammatory properties.

Number 3 and 4 are probably the most important factors when considering this drug for ILVEN.

The most common side effects of Accutane are dry skin, itching, rash, dry nose, nosebleeds, cracks in the corners of the mouth, dry mouth, dry lips, cracking or peeling skin, inflammation of the whites of the eyes, dry eyes, joint pain, back pain, dizziness, drowsiness, nervousness, or changes in your fingernails or toenails.

There are more severe side effects but they are very uncommon and let’s honest here, all medications come with a laundry list of side effects, however, here is one of the more significant ones.

Accutane can cause birth defects in babies, so women should never take the drug if they are pregnant. I found some literature stating that women have to sign an agreement to take two different forms of birth control and take pregnancy tests while they are on Accutane, to make sure that they do not get pregnant while taking the drug. Because of all of the negative side effects that Accutane can cause, the negative aspect of the drug has been played up significantly.

There is no scientific evidence proving that Accutane can cause infertility later on years after taking the drug, but there are lots of online forums and message boards that indicate that many women think that Accutane is the reason for their fertility difficulties. I visited many of these me boards and asked for feedback, to my surprise, several people wrote back that they did in fact get pregnant in time.

I must have read 10 different case studies that offered little to no information about why Isotretinoin did not work as therapy for ILVEN but all cases suggested minimal effects. Minimal meaning, it DID in fact have some effect, just not enough to continue.

To my fellow readers, I am curious to know if you have tried this form of treatment and if so, what were the results? Do you have any advice for those being offered this as a potential treatment? Thanks for your feedback!

Thanks for walking with us today,

Mermaid’s Mommy

Sun’s up…

Apr11

It seems like only days ago it was near dark as I drove home from work. I’m use to it spending the majority of my life in the Pacific Northwest, and don’t get me wrong, I love it here, I have tried living other places only to miss my four distinguished seasons; but this year I seem to be ready sooner than most for longer days.

Nearly overnight we went from being stuck inside from 5:00 pm until the following day, to not even thinking about stepping foot inside until close to 8:00. The past few nights we have witnessed the signs of summer creeping in. The neighbors came out and we shared an evening walk/bike ride, dinner on the patio, lawns being mowed, flowers blooming, birds chirping… It’s as if new life has taken form on our sleepy country road.

Those that know me well; know one of my happy places is surrounded by our friends. Many of them I consider family. The first sight of sunshine and I was already planning a BBQ. Yes, I love our friends, but their presence is so much more than just company. These are the people who stood beside us as we said our vows, paced the lobby with my family when Mermaid was refusing to join us in the world, cried with us when we lost loved ones, supported me when I said I have this crazy idea to start sharing our life online, reached out and waited just as impatiently as we did for Mermaid’s diagnosis, get us through our days when we are away from our family and did all of this, plus countless more, not because they had too, bound by blood, but because they wanted too.

(Don’t worry those of you that couldn’t make it, we feel the same about you!)

We are blessed ten fold to be surrounded by people who despite our individual religious or political views, despite where we came from or where were headed, continue to make that choice in walking with us. I have spoke before about how important the people we walk through life are, they have helped shape who we are today and who we will become tomorrow. They are a solid. It’s important to me to show that solidarity to Mermaid, to show her that from the beginning she has had all this support. That despite her differences, she is now and always will be surrounded by a solid. If we can teach her now, the importance of building those meaningful, lasting relationships, she will build that for herself when we are no longer responsible for her surroundings.

I took a brief moment to stand in the kitchen, veered past the dried out yellow rose in my window sill, and watched life happen from a distance. I saw one of our Groomsmen catering to a 3 year old child he felt as his own, a couple well on their way to beginning life – attempting to have a child, a former co-worker turned best friend laughing a belly laugh I hadn’t seen in quite some time, my soul sister watching her new love with gazing eyes, Our responsible DD on duty waiting for her next call indulging in everyone’s antics, Newer friends sliding into the madness as if they had been there forever.. I paused, took it all in… and rejoined life.

I hope if for nothing else in this world for my Mermaid, that one day, she too, will look out her own window and see how grand life can be. That for small moments in time we are all connected, all the same, despite how different we really are.

I started this post the night after our BBQ, above is as far as I made it, I had a better ending, I had a real connection to my point, but that fell short by one of the people I gazed out at…. tragically losing their life the following day. I have hesitated to post this, perhaps it would feel inappropriate in the wake of life’s events, drudge up hurt or sorrow, but I decided to finish. Afterall, our journey, be it Doctors appointments, public shame, questions, is what I signed up for. I took an oathe to myself and or readers to share our journey, so I will now try to conclude.

Many moons ago I met an amazing young woman, we went to college together. We started within a short time of eachother at the same company, in the same department, with the same doctors. Our professional connection means little. I honestly cant remember a time in my life where said person and I couldnt pick up the phone and hash out lifes issues, Through weddings and babies, SO many crazy nights, our “crew” moving away, making new lives, and finding ourselves, we were there.

I hadnt seen her happiness shine through the way it did that day in a long time. They were the couple starting a new life – attempting to have a child. Her better half lost his life in a tragic motorcycle accident the following day. For someone who feels pretty confident in their words, I don’t at this time. I wish I could say that things get easier with time, I can’t. I want to text, call, show up and think that my presence makes it better, but I know it doesn’t. I KNOW more than anyone could ever possibly imagine that an event of this magnitutde leaves you stranded.

Here is what I will remember, on a sunny day in April, rare to the pacific northwest, I got to laugh and share about life with the person that made her so happy. We shared not only a Birthday month, but a work anniersary. That for a brief moment, I stood back and watched, I saw, I know, what happiness is.

I cannot give the happy ending I intended this post to have the way I would like too, but what I can do, is promise you, promise you all, anyone that takes the time to read this, that whether you know I feel it, or see it, your presence, big and small, gives me hope for better days. Your mere presence gives me the strength to continue writing about our journey and know, to really, really know, that Mermaid has the best most amazing foundation anyone could ask for.

Our random April get together was sporadic, it was fed by my own selfish need to feel the rays on my back and the love of our friends, and it will forever remain that.

I will share with Mermaid, later in life, the people that made me… well… me… and to everyone present, know that you too, will forever be a part of our solid.

Cheers to sunny Saturday’s.

Thanks for walking with us today,

Mermaid’s Mommy

DSCN1051 (2) DSCN1027 (2).JPG

Are Mermaid’s real?

Mar31

Only 5 days until our 1st Birthday and our week reminiscing about the past year together continues. Tonight we are going whimsical and sharing one of our all time favorite posts, A Fish Tale.

That was such a fun experience and definitely humbled us. Never saw it? Read it, but don’t remember? New to us? Take a peek!

https://mommysmermaid.com/2015/10/05/a-fish-tale/

To see more work by Kinna Clark go to:

http://www.geminiIImages.com

Thanks for walking with us today,

(and those of you in the PNW, enjoy that sunshine!)

Mermaid’s Mommy

Epidermo what???

Mar30

As we continue to close the gap on our one year anniversary I share another gem from our first few months. If you have yet to read it, this is the article after we got the results from Mermaid’s biopsy, what a happy day this was. To have answers and be cleared of cancer was so joyous, enjoy!

https://mommysmermaid.com/2015/09/27/prognosis-happiness/

Thanks for walking with us today!

Mermaid’s Mommy

Make a brushstroke

Feb25

This piece was both the hardest and most inspiring piece I have shared about a fellow nevus owner, I spent a significant amount of researching and learning about the journey the Lopez family is on; and where I could never begin to scratch the surface of what they have endured, I hope to highlight in this brief post the most important facts surrounding their situation. It in no way, shape or form takes anything away from any nevus owner, but the unique situation this family is in, adds another layer of complexity to not only their child’s disease; but his ability to receive care. I have stated before that I intend to learn and teach about all forms of nevus and have been lucky enough to connect with a special family in Colombia to share a bit of their story with us. Nevus itself comes in many forms. One of the more rare and complicated types is Giant Congenital Melanocytic Nevus.

Let’s start by learning what Giant Congenital Melanocytic Nevus is:

Giant congenital melanocytic nevus occurs in approximately 1 in 20,000 newborns worldwide.

Giant congenital melanocytic nevus is a skin condition characterized by an abnormally dark, noncancerous skin patch (nevus) that is composed of pigment-producing cells called melanocytes. It is present from birth (congenital) or is noticeable soon after birth. The nevus may be small in infants, but it will usually grow at the same rate the body grows and will eventually be at least 40 cm (15.75 inches) across. The nevus can appear anywhere on the body, but it is more often found on the trunk or limbs. The color ranges from tan to black and can become darker or lighter over time. The surface of a nevus can be flat, rough, raised, thickened, or bumpy; the surface can vary in different regions of the nevus, and it can change over time. The skin of the nevus is often dry and prone to irritation and itching (dermatitis). Excessive hair growth (hypertrichosis) can occur within the nevus. There is often less fat tissue under the skin of the nevus; the skin may appear thinner there than over other areas of the body.

People with giant congenital melanocytic nevus may have more than one nevus (plural: nevi). The other nevi are often smaller than the giant nevus. Affected individuals may have one or two additional nevi or multiple small nevi that are scattered over the skin; these are known as satellite or disseminated nevi.

There is a 1-2% chance of Melanoma developing in those with CMN and these typically develop by age 5. (note: Mermaid’s possible complication is also typically developed by age 5, I found this to be an interesting connection)

Synonyms of Giant Congenital Melanocytic Nevus:

Bathing trunk nevus, Cape Nevus, Congenital pigmented nevus, Garment nevus, Giant brown birthmark, Giant hairy nevus, Giant hairy pigmented nevus, Giant mole, Giant nevus, Hairy birthmark, Leptomeningeal melanosis, Multiple congenital melanocytic nevi, Neurocutaneous melanocytosis, Neurocutaneous melanosis, Satellite nevi, Swimming trunk nevus.

Let’s meet Lucas:

Lucas was born in Colombia on August 9th 2014, to Pedro and Angela with a giant congenital melanocytic nevus on the left side of his face. You can imagine as any parent would feel, the fear that ensued. Pedro stated that they felt overwhelmed because the Doctors didn’t know how to treat it or how to proceed.

While this condition is not threatening his life at the moment, Doctors have recommended its removal due to a history of skin cancer in Lucas’ family (Melanoma) and to correct a deformation.

Lucas had his first surgery April 23rd 2015, at the young age of 8.5 months old and his most recent surgery was completed February 18th 2016 but he is doing well and getting stronger every day. Lucas will be back to his favorite pastime of playing with cars in no time at all!

Because of the complexity of his case, Lucas has to travel to the US for treatment, from Colombia (South America).

The Physician’s in Colombia did not have enough experience with the removal process, specifically on the face so the family made the decision to bring baby Lucas to the US to receive treatment in Chicago. They continue to reside in Colombia and travel to the US for each consult and surgery. Their insurance does not cover the procedures here so everything has to be paid for in cash.

The reason for the entire procedure is to prevent future physical degradation of the CGMN and melanoma.

The total number of procedures suggested is of 9, however, there is a chance of having that reduced to 6 depending on how well treatment works along the way. Below is a suggested timeline for Lucas.

1st Procedure: Healthy skin expansion, April 2015 – (Schedule update DONE)

2nd Procedure: Nevus partial removal, July 2015 – (Schedule update DONE)

3rd Procedure: ear reconstruction, November 2015 – (Schedule update DONE) the surgery was in December 4th Flap Reconstruction, Part of ear reconstruction, Healthy skin expansion

4th Procedure: Healthy skin expansion November 2015, (Schedule update DONE) Change the schedule to February 18th 2015, Nevus partial removal

5th Procedure: Nevus partial removal. February 2016, Schedule update Change the schedule to June 2016 Nevus partial Removal

6th Procedure: Healthy skin expansion June 2016, Confirmation pending

7th Procedure: Nevus partial removal. September 2016, Confirmation pending

8th Procedure: ear reconstruction, September 2017 Estimated

9th Procedure: ear reconstruction, September 2020 Estimated

The total estimated time frame is 5 years (subject to funds, medical team availability and trips)

Budget

1st and 2nd procedures: US $ 54299 DONE

3rd to 5th procedures: US $ 71428

6th and 7th procedures: US $ 54199

8th procedure: US $ 36347

9th procedure US $ 39618

Budget includes: Doctors, anesthesia and hospital fees. Travel expenses between Colombia and the US. Living expenses and health insurance in the US for Lucas and his parents.

The power of love is a beautiful thing, understandably Lucas has amazing parents that are going to every length to ensure he receives the best treatment possible but they are not doing it alone, nor without returning some of that generosity extended to them.

The Lopez family has set up a foundation in Colombia to help others with CMN. Through a combination of this foundation and a crowdfunding account they raise funds to cover all the costs. Recently, there was a change in the exchange rate lessening the amount of US dollars received through donations but their hard work and dedication to making all of this possible actually brought in more donations than needed and just moments before Lucas finished his last surgery, they exceeded the amount needed for this round of treatment.

I asked the family to share with me any positives they have found throughout their journey and what they would like to share with other families going though similar experiences. The response I got was simple, yet powerful. They enjoy helping others and meeting wonderful families with incredible journeys, Pedro said “Your baby is a miracle that will challenge you to do amazing things, stay strong.” Is that not the truth.

I keep the very first piece I ever wrote as a permanent sticky on our website because it reminds of where this whole journey began, that place of fear and desperation. I often forget I ever felt that way because I am surrounded by so many amazing people who fight not only for us to find treatment and cures, but for everyone effected by this disease, despite it’s form. Had I opted not to start this I may never have come across this amazing family.

Pedro made a comment on one of his fundraising sites that nailed the emotional roller coaster we are all on.

“We are all supporting actors in a story,

Recently I heard a message that mentioned how we ask many times questions about why we go through certain situations we do not understand and feel that life has been unfair to us. Why? Why? It is in our mind for no apparent answer, only time will give us the answer, and further away from our lives the butterfly effect will be reflected in the offspring of our next generation.

But meanwhile we can see small brushstrokes of such great masterpiece as evidence of what we are doing is not only for our child but also to impact the lives of others who are going through similar situations to ours.”

“Small brushstrokes of such great masterpiece”

Every move we make to put those effected by this disease at the forefront of our day, if only for a moment, is a small brushstroke.

We always speak about the strength and courage of those with a nevus and our support naturally goes to the individual effected, but it’s important to remember the families as well. In this case the Lopez family is traveling to a different country, without insurance and uprooting their lives to support their son. Pedro and Angela – you are in my thoughts as well and Lucas is lucky to have such strong role models in his life.

To learn more about Lucas’s journey or to donate you can visit their page at:

http://www.youcaring.org/lucaswantstoprevent

Thanks for walking with us today,

Mermaid’s Mommy

Wild for you…

Jan17

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!

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.

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

Prognosis Happiness

Sep27

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

Do frogs give you warts?

Sep21

We have an exciting product to trial and are patiently awaiting its arrival. It’s called WartPEEL; an acquaintance and Mommy’s Mermaid follower turned us onto this exciting endeavor. WartPEEL is a wart removal product that treats planter warts, foot warts, and other warts found on skin. It is a compound medication available only in certain locations in the United States and is typically a cash product running $79.00 per 5 grams (0.17 ounces).

In 1997 MedCara’s pharmacist founders experimented with a compounded treatment using chemotherapy drugs which is marketed as WartPEEL. This compound has been used by medical practitioners to treat more than 50,000 patients.

WartPEEL is available as a compounded medication exclusively from MedCara, LLC and it’s contracted pharmacy, NuCara. Dispensing of WartPEEL requires that an appropriate doctor-patient-pharmacist relationship be maintained. NuCara Pharmacy will not fill prescriptions for patients that do not have a valid patient-doctor relationship.

What does an appropriate doctor-patient-pharmacist relationship mean? This means you cannot call NuCara and simply purchase the product on your own. You must have a physician complete a prescription form and fax it directly to their compound pharmacy.

Where Mermaid’s Nevus is not a wart she does have a problematic spot on her wrist that is thickening. This is a particular spot she picks and says hurts – so whenever it arrives we will start with a small trial on that one designated area. Considering the medication contains a chemo agent and typically isnt used in patient’s this young we will be more cautious about the usage.

We got so caught up in our busy lives we forgot to share the results of our last trial, we took pictures and documented everything and then dropped the ball. Like other Amlactin products tried in the past we saw little to no improvement but I will still post the picture and information on my “Got any secret solutions?” page with the others.

As a quick reminder we used AmLactin Moisturizing Body lotion and below is the decription from their website.

“AmLactin Moisturizing Body Lotion has a special formula with clinically proven 12% lactic acid that’s pH balanced for the skin. Don’t let the word “acid” concern you. Especially since lactic acid is a naturally occurring humectant for the skin with a certain affinity for water molecules to help keep skin hydrated. And the more moisture that can be retained deep within the skin, the softer and smoother your skin feels. In addition, by encouraging natural skin cell renewal through exfoliation and delivering intense hydration deep within the skin, this lotion creates a soft, smooth texture.”

Monday 8/17- Monday 8/31.

Monday 8/17/2015:

During this time I again noticed no change in Physical appearance, she continued to speak about it just as much as before. At one point Mermaid developed a skin rash which I do not believe to be corrolated with the AmLactin product in any way but added a small complication.

Ultimately we came to the same conclusion as the other AmLactin products, they work for hydration but moving forward we will opt out of trialing any other versions for the soul fact that we know the extent of their use.

Monday 8/31:

Stay tuned for results and more information on WartPeel!

Thanks for walking with us today,

Mermaid’s Mommy

Mommy's Mermaid

Our Journey

Tag Archive | skin condition

Buzz buzz little bee…

Happy Mother’s Day!

Isotretin what?

Sun’s up…

Are Mermaid’s real?

Epidermo what???

Make a brushstroke

Synonyms of Giant Congenital Melanocytic Nevus:

Wild for you…

Prognosis Happiness

Do frogs give you warts?