Archive | February 2016

Make a brushstroke

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)


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:

Thanks for walking with us today,

Mermaid’s Mommy

Dear Starbucks Mom

Dear Mom at Starbucks,

I thought long and hard about the comment you made to me a few mornings ago and I have to say, the longer I thought about it the more upsetting it became. I’m sure you will never see this but other people will, and if our two chance encounters serve as a small reminder to other Mom’s, then my purpose is served.

You said to me, while standing in line at Starbucks “Oh  I saw you at wippersnappers, you really shouldn’t have your computer there ignoring your kid.” (for those not familiar, it’s an indoor playground) I am never the best at witty quick comebacks but my response to you was “thank you for judging me” and I walked away. So why did that one small comment and 30 second interaction continue to plague me?

I guess to understand I should share a little about myself and that night.

I am a working Mom, 5 days a week I wake up before dawn and go to work where my job requires me to hear and learn some hard things about people who I can’t always share, it’s the nature of the work. I know that, and I am ok with it, but I carry it. I leave work, pick up kids, head directly home where I start chores and dinner; clean up animal messes, followed by figuring out lunches for the following day, school and work clothes, maybe build a tower or two, bath-time, skin regimen time, fight a 3-year-old about bedtime and hope for a small moment to relax uninterrupted before the whole cycle starts over, or someone throws up. My weekends are typically filled up with birthday parties, baby and bridal showers, sporting events, family obligations and home projects, all of which my children are a part of.

In the recent past my daughter was diagnosed with an incurable skin disease that came with a laundry list of potential complications, severe ones. At that time I was scared and sad and knew very little about what all of it meant. That’s when I started this blog. I thought maybe, just maybe a few family members would follow me and if I was lucky, I would connect with another family or two who were going through the same experience my family was. It was received better than I ever could have imagined and before I knew it I had a dedicated group of followers that looked forward to what was coming next. It serves as not only a positive outlet for myself, but a tool for others.

Now you can see that we are a busy family, a very blessed, but busy family. Finding moments to write don’t always come easy. I typically find myself in the garage late at night doing research and piecing together my next post. The garage is quiet and I can open the door to hear the night sounds.

That week we had actually been to the playground twice before where my undevoted attention was on all the children present. I like it because they have staff that go inside the structure and check on the kids, it’s small enough to sit in one place and see the whole thing and if your child exits. It feels safe. The night you saw me there, yes, I got a cup of coffee and broke out my laptop. The place was very busy and I did not see you, though I wish you would have voiced your concern at that time, opposed to later, in a snarky judgemental tone. I admit, I too can be snarky, ask my coworkers, friends and family. I can have a sharp tongue, but it’s typically around work issues or in a funny tone, not meant to be blatantly rude, and certainly not to strangers.

That night I was working on a piece I had made a promise to get up soon and the house was buzzing with energy. My toddler was having an especially emotional day and both my kids were delighted when I mentioned heading to the playground. I told them I would be writing a little bit. By now they fully understand that means I need a smidge of time in my own zone. My son is quite a bit older, perhaps the age soon that those places wont be cool, of a more than legal age to watch his little sister and was with her the entire time we were there.

You noticed I had my computer out but you didn’t seem to notice that every few minutes I got up, waved at the kids, checked to see if they needed water and even took a break to slip my shoes off and go down the slide 8,000 times.

99% of my time outside of work is spent with my children, even my blog is about one of my children, I spend countless hours educating myself on all forms of her disease in hopes to bring facts and hope to everyone effected by it. If taking my kids to a safe place where they can run and get out their energy opposed to being cooped up at home and I can have a few moments to get some work done – offends you, I apologize; but here is my reminder and ask of you…

Before making a brash judgement, if you see a Mom that doesn’t seem as attentive as you think she should be, maybe a little less put together or disheveled, ask yourself first, what their day may have been like. Maybe they spent the entire day tending to their family, being on call for Kleenex, food, entertainment, soothing, storytelling, rocking, refereeing and acting as a maid service; and that very moment you encounter them, is the first moment all day they turned on their computer, looked at their phone, looked at facebook. Perhaps that person had a bad day, received bad news, was trying to process something and incapable of being super Mom for a minute. She may have been up all night with a sick baby, or sick herself and struggling to keep focused. You, as a Mom, I’m sure have had these moments. As we all have.

In those times, if something seems off, ask if you can help, keep an extra eye out for her kids if your worried and remember a time that you too, may have been judged for something you did, that really was ok.

My daughters disease has taught me so much about people because it has placed me in a position to have acquaintances from around the world with whom I share stories about our lives and I see the daily struggles they endure. They make my complaints about being “busy” seem silly. It has made me more compassionate than I ever could have imagined.

Our jobs as Mom’s is not only to look after our cubs, but our pack. The other Mom’s. Our job is to empower one another, watch out for each others cubs and well-being. Be the example our children need us to be by showing one another kindness.

It’s so amazing to me as an adult and a Mother to see all my friends who are also Mom’s; in a different light than I use too. I am the Mom that strives to teach my children about hard work, Others to teach about health by living an active, clean eating life, the one who’s kids will always remember their Mom knitting their clothes, gloves, weird monster pants and hats, the Mom who raises and tends to the chickens; teaching their little man about our food sources. My Mom friend that saved children who couldn’t be with their birth parents and loves them just as they were her very own – showing them people are good, My strong-willed Mom friend who takes her girls to roller derby, showing them strength and all my beautiful cousins who spend their days home creating every pinterest pin possible with their kids, feeding their creativity. We are a group of hard-working, crafty, healthy, loving Mom’s who watch out for one another.

Despite all the Dr’s appointments, stuffy noses, loss of any form of privacy, vomit, fits and being so busy I can barely function some days, I wouldn’t ask for things to be any other way, because I am in my happy place with all this madness.

I never owed you an explanation of who I was, what my days are like, or why I chose to do what I did that night, but I gave it to you because I have made countless mistakes in my life, some pretty terrible, but learned from them and I am giving you the benefit of the doubt. . I am going to assume that you yourself had a rough night with your children, were headed to work after a sleepless night and just needed someone to put that anger on. It’s ok, I get it, but I promise you this, I will go to the playground again and open up my computer. On the miniscule chance you see this letter and encounter me in that same situation again, come over, say Hi – ask what I am working on. I will buy you a cup of coffee and you can tell me what kind of Mom you are, so I can be encouraged by you as well.


Mermaid’s 99% of the time attentive, wouldn’t trade my busy crazy life for anyone elses in the world, Mommy.








She said yes!

Epidermal Nevus effects roughly 1 in 1,000 people worldwide. Each subtype i.e. LEN (linear epidermal nevus), ILVEN (Inflammatory epidermal nevus) or verrucous epidermal nevus, holds a different value of people effected. Less common, effecting roughly 1% of the population are congenital epidermal nevus and/or melanocytic nevus. Within an individuals type of nevus can be additional subtypes, such as Mermaids diagnosis of “epidermolytic hyperkeratosis;” which effects 1 in 2-300,000 people worldwide.

I know, because until Mermaid was diagnosed, that unless you have a personal connection to this disease, it is not something the general public is aware of. I had never in my life even heard of this disease, let alone met someone with it, and I have worked in the medical field for nearly 12 years! Hence the fact that they are considered rare genetic diseases.

When I started Mommy’s Mermaid it was out of pure desperation for contact, support and answers from others living with this disease. Throughout this process I discovered a few support groups and have gained my own following here, on my website, of both people who themselves have a form of the disease or know someone with it.

To possibly imagine that Mermaid and I would be graced by God to have another nevus owner in our own backyard was unfathomable. It seemed that everyone we had contact with was Midwest or East Coast. Graces were granted and after months of communicating via Mommy’s Mermaid, our Facebook support group and text messaging, we finally got to meet face to face with a fellow local nevus owner.

Before meeting I could never even begin to express to you the gratitude I held for our crossing paths. We are relatively new to this disease and our cohort is an adult who has been living life managing her symptoms long before we even knew it existed. The opportunity to pick her brain, absorb her knowledge, hear her courage; To place my Mermaid and another nevus owner – with significant enough struggles to match our own – in the same place, wow – words cannot describe.

The days leading up to our meeting I was nervous, like my husband and I’s first date kind of nervous. Who was I? I’m just a small town, working Mom that put together a website in hopes of finding others. I have written one other piece on a fellow nevus owner and her daughter and took a stab in the dark that maybe, just maybe, our new found companion would be willing to meet with us, share her story, and trust me to share it publically in a tactful way. I honestly expected a no. I wasn’t asking her to answer a few questions from the comforts of her home, but to physically meet in person, give us her own valuable time. She doesn’t know me from Adam, how long could we really talk? What was I going to ask her? At what point did I go from sharing our own experiences to dragging other people into this crazy ride acting like a reporter of some type?

Well folks, she said yes.

Introducing, Monica.

 It was Mermaid’s 3rd birthday. I had taken a few days off to celebrate my little blessing and what better way could we have done that than to spend it with a fellow nevus owner.

We opted to meet at a local kids play place. Given the age of our children and the weather, you really couldn’t have found a better location. It’s really kind of comical, our stories were interrupted by crying children, hungry children, diaper changes, snotty noses and just about every other possible kid related need. It sounds kind of awful but really, that’s what both are lives are like on a daily basis so it was normal and delightful to us. It felt comfortable. I only hope between all the needs I was able to capture Monica’s story correctly!

Monica is the 2nd of 5 children, a teacher by trade, a wife and a Mother of two. She has taught an array of ages and in many settings but my praise goes to her work as a special education teacher. Specifically with the Life Enrichment Education Program (LEEP); which provides specially designed instruction and related services for eligible students ages 5-21 years with special needs. The curriculum focuses on personal management, communication, practical living skills, vocational skills, leisure/recreation activities, and social skills.  Throughout her teaching career she found the humor in her disease and when asked by students what was on her leg she would drum up stories of what it was, things like she got it saving animals from a burning building, always something that made her a hero. Her stories made me laugh and I adore the ability to have fun with it. Though I have to say Monica, in my eyes, your involvement both as a teacher and time with those that have special needs, makes you a hero. Saving cats is pretty cool too though.

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 As far as Monica knows, her nevus was not present at birth. Her first real memory of its presence was grade school, with a busy Mom, remember – there were five children – it may have been present prior to that but without her speaking up about it being bothersome it may have been overlooked as just a normal benign skin condition. At that time her nevus was present only on her left leg. Around age 11 it became more prevalent and began to cause problems so  she was taken in and officially diagnosed with Inflammatory linear epidermal nevus (ILVEN).

Over Monica’s lifetime she has had 3 biopsies. The first when they lived in Northern California at age 11, which was where her initial diagnosis of ILVEN began, again in her 20’s here in Oregon and lastly, in her 30’s. So why so many? Over the years her nevus has spread, now her nevus rears its head from her  left knee down to her foot – around her big toe, with a small spot on the bottom of her foot and up the inside of her thigh. In more recent years Monica has found her ILVEN to be more bothersome than ever before. The previous biopsies were old and locating the dermatologists that performed them proved more difficult than just completing another one. The purpose was to have a clear diagnosis with her current dermatologist to move forward with treatment options. What’s interesting to me is that I have noticed the small spot on Mermaid’s under arm where her biopsy was performed has never produced new nevus, Monica has noticed the same thing. All places where biopsies have been done have not produced new nevus, which leads us both to have faith in the excision process. As Monica put it “a light bulb moment” which made the path she wanted to pursue very clear.

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There is no clear reason for why it has become more active; i.e. spreading, becoming inflamed, and itching; however, in more recent years Monica has given birth to two adorable baby angels (really, I mean adorable – her 2.5 year old son was my friend within 60 seconds of meeting me and her infant smiled nearly the entire visit, not one whimper) and she has experienced more activity with hormonal changes, especially postpartum, both times. It has come to a point where she can confidently state that it is effecting her quality of life. Itching being the biggest hinderance, which I know so many of you can relate too.

Monica recently met with her surgeon at our famously known teaching hospital; Oregon Health and Science University (OHSU) who is a specialist in ILVEN. It is difficult for me to write this next piece of information because I have struggled myself to find someone local with a real extensive background and experience with ILVEN or LEN, but her current surgeon/specialist told her that of the TWO prior cases she had treated, Monica’s presented as the most extensive case she had seen. I understand the disease is rare but there seems to be a lack of Physician’s in our area that have dealt with ILVEN/LEN to the extent we read about in larger cities and East. I have no doubt that said doctor is proficient in her abilities and perhaps our region just does not house a high number of patients with ILVEN/LEN; which would explain only seeing two previous cases and confirm the definition of “rare genetic disease”, but it is still a bit of a surprise that Monica will only be her third treated case.

As they discussed treatment options, the opportunity for laser therapy came up and her physician stated that both cases treated with laser, grew back. The treatment was done on one patient’s finger and another, on their face. I really have not heard of anyone having long-term success with CO2 treatment. It seems to be a fairly painful process with short-term results. Which goes back to the “light bulb moment” that excision was the right decision. To move forward  – Monica will need to not be pregnant or nursing, so time is the only barrier at this point.

It was such a blessing to sit down with an adult nevus owner and pick her brain about her experience thus far. We are so new to the disease that it was nice to hear the positives and negatives she had experienced thus far. Most interesting to me was a study she participated in. When Monica was in her twenties she voluntarily participated in a study at OHSU in trade for care. A group of members with skin conditions met with Physician’s and shared details about their condition. They were not allowed to tell them their official diagnosis. They shared details such as age, symptoms,  and treatments tried. With that information the panel of Providers tried to decifer what skin ailment they had. After knowing the official diagnosis they made recommendations and offered free treatment. Their recommendation at the time was cauterization. The bonus to voluntarily being there is the ability to decline treatment, which she gladly did. The idea of painful burning of the skin that smells atrocious was a pass. Interestingly enough, Mermaid has also been offered this option, which we as well, declined for the exact same reasons. Nonetheless; it was fun to hear about her adventure in guinea pig land!

I was told that nevus growing on hands and feet can cause joint pain, I asked Monica about this being that her nevus grows on her big toe and thankfully, she has not had this experience. From time to time it may crack, causing pain but only exterior pain. Monica swims on a weekly basis and has found that the warmer the water, the more she itches. The pool she attends is salt water and has not found any therapeutic connection with her nevus. Like so many nevus owners she has tried her fair share of creams and ointments with limited results but is currently using an ointment called Clobetasol Propoimate 0.05% and has found it to be extremely helpful. This medication is used to treat a variety of skin conditions (e.g., eczema, dermatitis, allergies, rash). Clobetasol reduces the swelling, itching, and redness that can occur in these types of conditions. This medication is a very strong (super-high-potency) corticosteroid. She applies a layer of the ointment and covers it with a sheet of tagaderm, leaving it until it falls off, roughly 24 hours later. She has found that it not only relieves that pesky itching but reduces the thickness of her nevus.

I asked Monica what the biggest hurdle was coming up in school and I got the exact answer I expected. Trying to explain to others that it was not contagious but would never go away proved difficult; as well as feeling as if it effected her socially at a younger age.  She wisely reminded me that bullies will be bullies, if it wasn’t her skin, they would have found something else to be mean about, they are just mean, end of story. Monica then followed her answer with a statement that I have thought about a lot since that day:

“We as people are way stronger and resilient than we give ourselves credit for.”

You are right.

Monica noted that as a Mom, it probably hurts more than being the one with the actual disease, it causes them heartache, and I think she nailed it. I often feel sad and helpless, a sense of heartache; when Mermaid is that resilient, strong person that acts as if it doesn’t exist.

The end of our conversation was about finding people who fit your need at the moment, whatever that moment is. She spoke about recently losing her Father and finding herself drawn to friends she had not spent much time with recently, but they were in the same place, and there is comfort in that. Her piece of advice to everyone new to the disease?

“Knowing you are not alone is sometimes all you need, find people with the same situation to comfort you, make that connection.”

Isn’t that the truth, after all; that’s what started Mommy’s Mermaid, the need for that connection with others in our same situation. She could not have chosen a better piece of advice to offer.

I captured a pretty special moment during one of Mermaid’s breaks from the play structure. Monica asked Mermaid if she would like to see her scales, “the ones like you have” and kindly lifted her pants to share. As that Mom that feels the heartache, this moment means the world to me. To show Mermaid that she is not alone, that other people share her special gift, to make that connection… I cannot ask for anything more.

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As Monica showed, every case is unique. Some proving to be bothersome from day 1, others later in life. There seems to be this never-ending circle for all nevus owners of trying product after product until you find the one specific to your own need. I am hoping to get in touch with OHSU and learn more about their blind trial, it would be fun to know what kind of conclusions they drew from it.

Monica – Thank you for sharing your story with us and allowing me to bring it to life. Thank you for being such a kind gentle soul. I truly felt as if we were old friends and will forever think of you that way. You will remain special to us for so many reasons. Our first connection in live flesh to another nevus owner, a reminder to keep our sense of humor around the disease and proof, that this disease does not define who you are.

We wish you all the luck moving forward with excision, we will be there to support and pray for quick healing and relief. We will continue our connection along this journey.

Today, Monica, you are an honorary Mermaid and we are the ones lucky enough to have you on our team.

Thanks for walking with us today,

Mermaid’s Mommy

What could it be?

It’s been a while since we have had any direct contact from a physician regarding Mermaid’s nevus so our updates regarding progress have been slim, but we have something exciting to share!

Last week I received a bit of a cryptic message from our contact @ Yale University. “Hello, I need to talk to you about the study, I am leaving for the day, can you call me tomorrow, early would be best.” Now immediately my mind goes to all the wrong places. They found something bad, I messed up a specimen, I didn’t sign something, maybe they want me to take their info off my website… how could this be, we submitted everything last summer. It has to be bad. It just has too. it was pure torture waiting the 17 hours I did before reaching someone.

I talked to my Mom the entire drive to work the following morning. She reminded me to be positive and we veered into other conversations taking my mind off the call I was going to place immediately entering my office. Which is EXACTLY what I did. I purposely arrived early – knowing they are 3 hours ahead of me, dropped my bags on the floor, located my yellow sticky with the phone number and dialed.

As Dr. Chaote’s doll of an assistant pilfered through her emails to find just what she was calling about, I patiently waited. Just having her on the phone was relief enough. The suspense was killing me.

Remember, the study was conducted on the East Coast, we are on the West Coast. Until Dr. Chaote was involved there was never even a mention of having a biopsy done. When we finally had it done the results were forwarded to him via paper form but the physical biopsy has been housed here with our healthcare entity.

The information was vague but here’s the low down. Something on the biopsy result “popped out” to the physicians. They decided that they wanted to physically obtain Mermaid’s specimen and run further tests on it. What exactly caught their attention is beyond me but his assistant told me that this is GOOD news. When they see something of interest it typically means they are closer to identifying something more specific, which means more specific treatment, or leads them to further research for us to be involved in.

My “assumption” and again I say ASSUMPTION; is that the rare subtype of Edpidermolyctic Hyperkeratosis may have sparked some interest. Where I know nothing for sure I will be waiting impatiently to see where this leads us!

Glad to still be connected with the Yale team!

Stay tuned for updates!

Thanks for walking with us today,

Mermaid’s Mommy

Starting the year off with a bang!

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It’s been cold and rainy (as expected) here in the PNW and we even had a weekend filled with snow. The weather let up this morning and allowed us to finally get outside for a bit. While on a walk with my Mermaid we took in the beauty of where we live and I thought about how great January has been.

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With some additional time off from my normal job (though some of that was for a sick kiddo, which doesn’t really count!) I have been able to put more focus into my 4th child, Mommy’s Mermaid; and the numbers have shown. Nearly 1,000 people stopped in to see what was going on. Additionally I was able to respond to more emails and calls (sorry it took me so long to get to some of you!). I connected with a new Nevus group, met a fellow Nevus owner in person and  secured a few exciting leads on future products and trials. It really proved to me that the more time, love and effort put forth, the more I will receive in return.

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I want to thank everyone for helping me start 2016 off with confidence in our site and ideas out the wazoo! If only I had 2 of me, no 3. Ya, 3 would be good.

Coming in February I will have an update from Yale School of Medicine, A fellow Nevus owners story, and a new trial. If you have a specific interest you would like me to write about or would be willing to let us share your story on our platform please contact me.

Happy Sunday, hope you enjoy some snapshots from our walk today!

Thanks for walking with us today,

Mermaid’s Mommy