Tag Archive | linear epidermal nevus

Fish out of water Part duex…

Aug9

Ask and you shall receive, maybe not the first try, but try, try again we did! We recently reached out asking for advice from our readers about their knowledge and/or experience with nevus owners overheating. We received a lot of good information but nothing lined up with Mermaid’s “LEN” so I began doubting the cause. I started researching and honestly, came up a bit empty handed so I went back to ground zero and looked at her biopsy again. I often forget that the official pathology report came back as Epidermolytic Hyperkeratosis WITH Linear Epidermal Nevus, not vice versa so I restarted my search on the EHK and wouldn’t you know, it was everywhere!

EHK is a form of Ichthyosis and the information linking the two with potential overheating was abundant. It was relieving to know that my original gut feeling that the cause was related to her genetic disease but a small piece of me needed validation. After all, what if I was wrong and ignored signs of some other underlying condition. The chances seemed slim since she has otherwise been a healthy thriving child but I reached out anyway.

Our first (and I anticipated only) connection was with Mermaid’s general dermatologist. I was shocked that without a doubt not only did he say that her LEN had zero connection but he stated that I possibly misunderstood her biopsy and she did not in fact have EHK. I spoke to him about a plethora of information we had received from the children’s hospital directly related to her EHK and he admittedly stated that this was out of his wheelhouse but stood by his stance that there was no connection. Perplexed and frustrated I reached out to her Primary Care Doctor as the dermatologist advised to begin the search for an underlying cause.

Primary Care seemed as equally perplexed as I was and again eluded to this being a bit out of their wheelhouse, they were slightly taken back at us being directed to them but did some research and found a few possibilities. There were a few “conditions” that also had links to dermatological conditions that could be the underlying cause so we agreed to go forward with testing. Her PCP felt obligated to search for anything he could and being that we were led his direction we were going to travel that road with him without question. That same night with the promise of SEVEN new toys (thank the lord for the dollar store) I carted a screaming Mermaid in for blood tests and her chart was sent to neurology for a chart review. Most of the tests were straight forward and results poured in less than 24 hours later. Negative after negative after negative. I was happy, but still felt frustrated to have no concrete answer or validation.

The following morning as soon as I started seeing the negative results I made one last attempt at answers and reached out to Oregon Health and Science University where the Pediatric specialist for dermatology we previously met with resides. On our luck he had a same day appointment and off we went.

I left happy, aggravated yet understanding on all fronts. On our third connection we were assured that yes, Mermaid DOES in fact have a bit of a double whammy. She has EHK & LEN, just as I thought, EHK is a form of Ichthyosis and BOTH of them have the potential to cause overheating depending on the location. The vast majority of Mermaids fills her left armpit and as a result has clogged her sweat glands preventing her body from cooling itself properly. Essentially it causes her to internally heat up quicker. I suppose this sheds a small light on my midget sized nudist.

So now what? Well, the PNW has had some higher than normal temps and we have definitely learned that above 90 in direct sun she enters her danger zone. In the absence of a body of water we are limited to where we go if it the heat reaches that range. We started using Tazorac for a few weeks to see if we can thin the thickening near her sweat pores to allow some breathing room. There is no guarantee but smack dab in the middle of summer, any small relief is a huge feat. We followed up with all entities to ensure them it was in fact a direct result of her genetic disease and also advised that a body temperature above 105 is directly to the ER opposed to attempting to cool her ourselves at home. I guess I should replace that thermometer she broke.

We appreciate everyone that reached out to us and shared your wisdom, I can assure you that the moment you see your little one turn purple, vomit and fall asleep so deeply it’s hard to wake them, you too would be in a bit of a panic. I can’t possibly begin to imagine how she felt. I compare it to those of us without an underlying condition attempting to run a marathon in 105 degree weather while wearing a sweat suit and no water to drink. I’m so proud of how smart my Mermaid is to recognize when she has been out in the sun long enough. She is very vocal in telling me it has been enough and time to go, brings herself inside to cool off knows to continue staying hydrated. She has had so much to learn about in her short 4 years on this earth and always adjusts without a hitch. Maybe Mermaid’s are smarter than we ever knew!

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Here’s to hoping we have an otherwise eventless summer!

Thanks for walking with us today!

Mermaid’s Mommy

Fish out of water…

Jul24

My Goodness, It’s been ages since we have given any kind of update, which might lead one to assume that all has been calm on the bay front but it’s actually the complete opposite! Spring led us to Doernbecher Children’s Hospital where we obtained some very useful information but between her short baseball season and additional appointments we have been noticeably absent from our virtual home.

We have many posts coming soon about all Mermaids new discoveries throughout Spring but today there is one main issue at the forefront of our fins. I distinctly remember one of our very first appointments a brief mention that “she may have some blockage of her sweat glands” and that was that; until now there has been very little thought placed on that statement but I never forgot. Summers have always been fine, she often claims she is “hot” on a regular basis and keeping clothes on her is a mission in itself but honestly, I chalked it up to being normal with NO concern whatsoever.

About a month ago we were at an outdoor birthday party, the day was especially hot for our area and the yard offered little to no shade. They had games with water balloons, plenty of cold fluids and ice cream so even though it was a scorcher, everyone tolerated it just fine. Mermaid has long been asking for a new play kitchen and the little girl celebrating her big #5 just happened to have one in the house along side her Mom’s real kitchen. Throughout the party I kept finding Mermaid in the house near that kitchen, My initial thought was that she just wanted to sneak off and play with it so I continuously led her back out to the party in the yard. She participated in a game where they placed water balloons on a spoon and had to run to the end of the yard and back without dropping their balloon. As I stood at the end taking pictures I noticed she seemed more flush than anyone else. When they were done she quietly went and sat on some steps by a bubble machine. I snapped a picture and when I set my phone down I noticed her color had drastically changed to a purple shade and her breathing seemed somewhat labored. I went from this is  just normal hot weather behavior to “Oh my Gosh what is happening”  in 2.7 seconds flat. I scooped up Mermaid and ran her in the house, she had no energy and I took her dress off as quickly as possible. For the first time in our lives I instantly knew what was happening. She was truly overheating. The left side of body where her nevus lives was bone dry and the right side was drenched. She begged me not to put it back on and began to cry. Within minutes I apologized and rushed her to the car and blasted the a/c. By the time we got home, almost 45 min later she was still roasting and eventually threw up. I felt terribly guilty for having her out in the heat like that and prayed it was a one time fluke.

Not so lucky, a few weeks later we were at a family members graduation party, again, it was a hotter than normal day for the PNW and we were outside. We were at my brother’s house and there was a bit more shade than the previous party plus they have a small pond that the kids typically flock too to catch frogs and tadpoles. More aware of her potential to overheat I kept a closer eye on her and just like clockwork, she went from fine to that scary shade of purple again within seconds. This time family was present and keeping an eye on her as well and because she refused to miss the chance of catching a frog we made her continuously return to the table for drinks of cold fluids, gave her ice cubes to hold and a wet cold rag to hold on her face and neck. Just as before the concern grew to the point that we chose to make an exit but this time left before it got so bad she threw up!

Just yesterday we went to visit my parents at an outdoor market where they had a booth set up, it was significantly cooler than the other two days that incidents occurred but still hot and I was very aware of the potential. She started out by sitting in my parents chairs eating some lunch we brought but shortly found a table in the shade behind their booth at a local restaurant. She seemed happy there but a worker quickly approached us and asked us to leave the table. I kindly explained that she would be done eating in 2-3 minutes and pointed out that there were multiple other open tables so I  bought Mermaid a short window but her retreat from the direct sun ended quickly.  We were not there long before she sat on the ground and proceeded to try to take her clothes off. I quickly stopped her and said No baby, not in public, when she grew weepy and said she couldn’t wear her clothes anymore. She proceeded to tell everyone she was too hot and that was my queue, off we went. Once in the car and a/c she used my water bottle to hold on her face and neck and kept asking me to turn the air on, despite the fact that it WAS on and cold enough I was looking for a sweater. Within minutes of being home she threw up. Daddy and I go her some cold ice water, a fan and had her lay down to rest while continuing to cool off.

So here we are, a random overcast day and I am reaching out. My gut says that this reaction is linked more to the EHK than LEN and is just now coming to life as her Nevus has slowly spread & thickened over her sweat glands on the left side. I can not find any direct information linked to her LEN that suggests this is a potential side effect but most Ichthyosis articles have share a direct link to overheating. Additionally, I read an interesting piece stating that the rapid turnover of cells in individuals with Ichthyosis require more energy thus meaning the host needs more calories to grow. Maybe, JUST maybe, this could be a link to Mermaid’s insatiable need to always be snacking like a teenage boy. I also cannot say that any of our followers with ILVEN or LEN have spoken to this directly and perhaps those with congenital, Giant or Ichthyosis can shed more light on this topic?

Mermaid falls in this weird category where she has three (One we recently received @ Doernbecher that we will share later) separate diagnosis working together to complicate the understanding and treatment. Is it simply that we need to acclimate her body leading up to summer or trips to warmer climates or is there truly no way to prevent it? Will sports be an issue? I am reaching out today looking for your expertise, tips & tricks to help us in our newest conundrum. I am at a loss as to who we should go to first to discuss it. Her PCP, her dermatologist or her genetic specialist @ the children’s hospital. Help guide us!

Coming up we have a new trial of a natural homemade cream thanks to a local friend, will dabble in some more salve making ourselves with intentions to get some out to a few of our special followers and a post about some other new discoveries added to Mermaid’s ever-growing list of diagnosis.

If you have experience in the overheating world please share your thoughts! We look forward to hearing your expertise and jumping back in to some nevus focused time!

Thanks for walking with us today,

Mermaid’s Mommy

Mystery spots…

Mar11

It’s been a confusing 8 weeks in Mermaid’s world when it comes to her skin. About 2 months ago she had what appeared to be a black eye arise out of nowhere. As time went on the skin beneath her eye bubbled up and eventually peeled off. It has since remained rough and scaly, much like an older spot on her back. Then, a few small dots on her back turned into a round blistery patch and just like her eye, peeled off and has since remained rough and scaley. The presentation of both spots is not exactly like her normal nevus but has some similarities.

The timing was impeccable considering we already had a series of routine appointments set up in the coming weeks, so I didn’t worry much knowing we would have answers soon.

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Without knowing exactly what Mermaids new spots were and one of them being present on her face I wanted to be careful with what I chose to put on them as far as medication goes. With a few weeks to our first appointment I chose to just use a salve that we had made over the summer.

Mermaid’s Grandparents have bees so we have access to all the wonderful benefits bees bring us. Last summer we experimented with making some of our own products with beeswax. One of our endeavors was an anti-itch salve with Beeswax, Shae butter and a few other secret ingredients.

I was pleasantly surprised with the level of improvement our salve provided. Specifically, the spot on Mermaid’s back that she was asking me to scratch 8,432 times a day, stopped being bothersome during times of its use. I am happy that the salve has prevented further itching but we still didn’t know what we were really dealing with.

First up, we had contact with our dermatologist. He seemed pretty confident that what Mermaid has is not spreading of her Nevus but either Eczema or Seborrheic Dermatitis. He suggested we use 1% Hydrocortisone and let him know if it didn’t clear up. Honestly, I hesitated with the hydrocortisone because I had read about it not being the best for use on the face. Her Dermatologist even mentioned that too strong of a medication could potentially cause the pigmentation to stay, despite his suggestion I simply opted to wait.

Our next appointment was with our Primary Care Provider, once again he stated that he did not believe these were related to her nevus and agreed with dermatology that it could be Eczema but also thought it resembled Pityriasis Rosea, if that were the case she may develop more of a rash on her body and needed to let him know, though it is not contagious. He supported using the hydrocortisone 1% both on her back and face. With 2 people agreeing on its use I picked up a tube and for no other reason than being busy that evening I never got around to using it.

The following day we headed in for one last appointment with the eye specialist. The first thing she noted when entering the room was Mermaid’s face. I appreciated that it bothered her because it had been driving me crazy for nearly 2 months! She asked what it was, to which I replied honestly – I have no idea but nobody seems overly concerned. Seems like it might be eczema….? This particular day it was angry. Red, swollen, extra flakey, so she really got a good version of what it looked like. I shared the previous encounters and the plan to which she strongly disagreed. She felt that the medication they were suggesting was fine for her back but too strong for her face, as I initially felt concerned about. In turn she ordered a steroid cream to pick up and promised in 3-5 days we should see some improvement.

So really… what do we know? Mermaid has something that might be Eczema or maybe it’s Seborrheic Dermatitis or possibly even Pityriasis Rosea or maybe they are all off and its new scales developing as we speak! With the lack of a clear answer I decided NOT to use either medication advised by the Physicians and have stuck with just our “Bee honey” as Mermaid calls it. It truly keeps her from scratching and seems to keep it moisturized enough yet obviously fails to actually clear anything up. I trust all of our Physicians and we are not dealing with anything serious where my decision to not use the medication right away would cause harm but I truly want to be confident in what we are treating before treating it.

I am only confident in the decision to avoid medication therapy at this point because coming up in a few short weeks we will be going to Doernbecher Children’s Hospital, a unit at Oregon Health & Science University to see a Physician who specializes in Pediatric genetic skin diseases. With the variation of answers I would rather be certain about what we are treating before putting anything on Mermaid’s face. With the variation of “possibilities” and discrepancies in treatment we are sticking to our daily routine of  “bee honey” in hopes that the specialist has some concrete answers to what these new spots are.

Praying that Mermaid’s new spots are NOT Nevus and impatiently awaiting our big day at Doernbecher!

Does anyone have anything that looks similar to Mermaid’s pictures above or have a form of nevus accompanied by other severe skin issues? Looking forward to hearing all your thoughts!

Thanks for walking with us today!

Mermaid’s Mommy

 

…And… We are back!

Jan29

Well hello there! Welcome to 2017! We last left you a note that we were taking the holiday season off and that’s just what we did; but it’s time to dive back into things. As I’m sure you all know, the holiday season can be all encompassing. We wanted some time to focus on another project and be present in all the winter festivities. Some things went as planned and we promise to share about that later but honestly, life had a different plan for us these past few months and we went through some personal struggles regarding loss. That too, we will share down the road but I’m not quite ready to go there.

For now, let’s catch up on where we are at in the Nevus world. We gained some new followers during our break and fresh faces are always looking so I will give a quick reminder of why we are here.

My daughter was born with Epidermolytic Hyperkeratosis, specifically Aconthotic and hyperkeratotic epidermis with focal dyskeratosis including linear epidermolytic epidermal nevus and epidermolytic acanthoma, a hemangioma and a stork bite, also a form of nevus, on her neck. The hemangioma never grew, it’s the same size now as it was at birth but her stork bite, also a form of nevus, has continued to grow and her LEN has opted not to slow down. In comparison to others we feel blessed, her LEN remains light in color and relatively flat but continuously changing.

What does all of that even mean?

Broken down, it essentially means she has EHK and LEN.

Linear Epidermal Nevus (LEN) is a rare genetic skin disease effecting about 1 in 100,000 people that typically effects the limbs and torso. Her particular kind sticks to one side of the body, in our case, her left side. In infancy it is light tan and flat but will thicken, darken and often become warty as one ages. There is a possibility of skeletal, bone, ocular and neuro abnormalities that may develop; in which case it would be consider a “syndrome”; the lesions alone do not indicate a syndrome. There is a chance that the lesions may develop tumors, some benign, some cancerous. Open lesions are susceptible to infection, causing further health risks. About one in five people will experience a malignant cancer in their lesions.

There are many other forms of Nevus including Congenital, Sebaceous, giant, and closest in kind, ILVEN. It is caused by a genetic mutation in the ectoderm during gestation. At this time there is no “cure” – though there are potential medicines and procedures to help with discomfort and visualization. Occasionally, surgery will be warranted if the size or site indicate so. Excision is the only true “cure” for LEN or ILVEN. The rest is all maintenance so it all depends on how severe your specific case is.

The subtype of Epidermolytic Hyperkeratosis (EHK) is even rarer than LEN. It effects about 1 in 250,000 people and makes Mermaid’s skin fragile. There are two types of EHK, my daughter’s is the NPS type. We will explore that more this coming year. The dyskeratosis and aconthosis is a fancy way of saying there is an abnormalization of the skin keratin causing thickening.

So where are we today?

Currently, we are on our 3rd dermatologist and live day to day with what the future may hold. We have been blessed that thus far she has not developed any of the potential abnormalities and most likely wont, with one exception. Her vision, her eyes were checked about 1.5 years ago and they questioned her vision a little bit. As a result our new dermatologist recommended we follow up. We will be seeing the same pediatric opthomologist, which we LOVED,  for our second time in a few short weeks. The obvious things they are looking for are cataracts and colobomas, some people refer to an abnormality as a “key-hole.”

Additionally, Mermaid’s disease is growing on her hand, over the joints. Nothing has been set in stone but all 3 dermatologists have mentioned the potential of needing excision surgery near school age. We are a ways off from that so I can’t speak to that more than saying it is a possibility.

One of the first things we were told was to be aware of was the potential of developing “Wilm’s tumor” – childhood kidney disease. This has been controversial from source to source but nonetheless, is there. She will officially be in the clear at age 6.

Over the past few months Mermaid has developed a new spot on her back and the base of her skull that are itchy, raised and extremely bothersome. We are waiting them out to see if they progress but will probably go in to have them checked soon.

Where we are today is night and day to where we began. In the beginning I was scared, plagued with anxiety, confused and uneducated. I now have a good grasp on what we are dealing with and the anxiety has mostly subsided. I say “mostly” because there is always that lingering fear of cancer, be it in the form of melanoma or kidney cancer, that, I will never shake, though it is far from the forefront of my mind, more of a foot note.

We have grown so much as a result of my relentless research and support from everyone here at Mommy’s Mermaid.

To our new followers, we welcome you, and thank you for joining us, to those just browsing, thanks for stopping by, and for our long time friends and followers, we appreciate and love you all.

We look forward to spending the next year sharing our journey, hearing your stories and hopefully making progress and new discoveries in the nevus world.

Cheers to 2017!

Thanks for walking with us today!

Mermaid’s Mommy

MollyMadison making smiles!

Oct3

We have so many talented people in our lives; from top chefs and bakers, to woodworkers and tanners. One special friend is a master at crocheting, you know… that thing with yarn.

Crocheting came around in the 1800’s and has long had a place in history. In the 20’s you saw it being worn in the form of hats & dresses then in the 40’s it became part of the wartime effort, women making items for the troops. In the 50’s & 60’s the art exploded, patterns blew up and you could find items nearly everywhere, if you have never checked out some of the crocheted clothes from the 60’s, you really should do yourself the service and look it up! It seemed to fade off a bit, the world was changing fast and it was kind of left behind, but not for long….

Today you can find blogs, websites, patterns, pretty much anything your heart desires to see and know about the crocheting world right at your fingertips on the world wide web.

There seems to be this age-old argument of what’s easier or better? Crocheting or knitting? I personally have tried both, and I personally can NOT do either one. It’s not my strong suit. Which makes me thankful to have someone in our lives that holds this talent!

In true mermaid fashion we received a gift from our friend Molly in the form of a mermaid tail. From the minute my Mermaid laid eyes on it she was in love. She hugged it and wouldn’t let go! We had to make a deal that at bedtime it was to be put up until the morning. I awoke to not only a Mermaid in my bed, but a mermaid TAIL in my bed! When asked how it got there she told me “It got up and walked here!!!”

She loves her tail, and I love that it was made by someone special. The other day Mermaid came up to me in the kitchen and said “Mama, I don’t want my scales to go away”, I said good, because they’re yours to keep! her response? “because the mermaid’s made a spell that gave them to me!” and I told her that was right.

Her wanting to keep them is a far cry from a few weeks ago when she told me they were disgusting, so I will embrace it. The gift means so much to us, to have people that embrace her story and help cheer her on in all the smallest of ways warms my heart.

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We thank you for our gift!

Molly is truly talented and I encourage you to take a look at her online shop. There will always be new things added!

https://www.etsy.com/shop/MollyMadisonHOC

Thanks for walking with us today,

Mermaid’s Mommy

From hiding to Hollywood!

Oct2

Mermaid’s disease has introduced us to all forms of Nevus, where occasionally we shed tears over the stories and difficulties everyone faces, we also get to celebrate.

Meet Marika Nagy from Manchester, a fellow member of one our support groups who got her chance to tell her story.

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My favorite line…

“My birthmarks make me special. The world would be a very boring place if we all looked the same.”

With Marika’s blessing we share her story, she is such an inspiration to all of us!

Click below to read her story on the daily mail!

http://www.dailymail.co.uk/femail/article-3809507/Girl-coverered-birthmarks-bullied-looking-like-cow.html

Marika – we look forward to seeing you on the big screen!

Thanks for walking with us today!

Mermaid’s Mommy

Lean toward happy…

Sep29

Those of you that know me personally, know that I am a huge baseball fan. Where my team’s season is about over with basically no shot in the series I will still be glued to what’s happening all October. I recently read an article rooting against the Cubs to take the World Series and before everyone in Chicago gets upset at me for agreeing, let me tell you why. You see, the Cubs haven’t won a world series since 1908. Yes, they deserve their moment in the limelight but if they win, we lose one of the last connections to old-time baseball. To me, the time of the greats. The time where players were heroes, before other sports dominated the world and baseball was the leader. If they win, what will they grumble about for the next 100 years? I love this writers perspective, but win or lose, I love the sport.

There is a special little boy named Dylan who also has a love of the sport and right now, he needs you to help him hit a home run this October. October 3rd Dylan will be going in for his 27th… yes, you read that right, TWENTY SEVENTH surgery.

Dylan was born with Giant Melanocytic Nevus. A rare condition found in 1% of infants. Additionally he has Neurocutaneous Melanocytosis (NCM) which means he has it in his brain and spine as well.

Dylan’s form of Nevus runs the risk of melanoma and to help prevent that he will yet again, be undergoing another surgery.

In the photo on the right, Dylan is holding a picture of his friend Christian wrapped in the Lord’s arms. Christian and Dylan became friends when Christian was only 6 months old. This week marks Christian’s 2 year Angelversary. Christian lost his battle with Melanoma that was present in his Nevus at 19 months of age. I speak frequently about the potential side effects and our fears, our family has also endured the loss of a friend to Melanoma but Dylan’s fight reminds us all too much of those painful realities.

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(Dylan and Christian a few short months before Christian’s passing)

Christian’s Mom shared with me that the two boys and families became fast friends, following Christian’s passing Dylan even stood in her wedding. His Mom wanted me to share with everyone reading this that even in his darkest times, Christian was always happy. A doctor on the palliative pain team at children’s hospital said he’d never seen a baby so good spirited. He said ” no matter what gets thrown Christian’s way, his natural inclination is to ‘lean toward happy’… its remarkable, really!” That stuck with Christians Mom and has been a huge piece of her grieving. When things get tough, she remembers Christian’s resiliency and leans toward happy.

We NEED a cure for Melanoma. No family should endure what either of these boys families have, whether it’s in the form of loss, or prevention.

I was talking with one of Dylan’s parents today and I felt silly for my worry surrounding Mermaid’s nevus. She gently reminded me that we are all on a different journey, and she is right. We all have struggles and concerns valid to our lives. Some bigger than others, but in no way, shape or form, does it make any of them less.

As I’m sure you can imagine, with surgery comes cost and time off of work for his family. He has an amazing family that has done everything they can, and will continue to do everything they can to ensure his wellbeing. Right now, it’s our turn to help ease their burden, just as they have done for Dylan his entire life.

Dylan’s family has put together a fundraiser where they are selling water bottles and shirts to raise money to help offset some of the cost following surgery. You can donate or order using the link below.

http://fnd.us/01ASMb

I know we can’t always give by way of money and sometimes the biggest gift is that of prayer. So as October rolls around, keep this little slugger in your thoughts, give the family some encouraging words and tell them Mommy’s Mermaid sent you!

You can read about the specifics or follow Dylan’s story on his own personal facebook page at:

https://www.facebook.com/DylansAmazingJourney

To follow Christian’s mom on her path of recovery and learn more about his short but meaningful journey you can go to:

https://www.facebook.com/ChristiansSpecialSpots/?fref=ts

To Dylan, you are stronger than most people I know, you will heal and once again amaze us all. I have no doubt that Christian will be by your side through your entire process. You will be back on the ball field before you know it, and think of it this way, while your home healing, you can enjoy the world series! You will be in our thoughts and prayers before, during and after your surgery.

Tanya, Kara and Nikki – your strength is far from unnoticed. To Tanya and Kara, I want to thank you for trusting me with you stories, emotions and lives. I think I will forever remember to “lean towards happy” when I am having a rough one.

“Our wounds are often the openings into the best and most beautiful part of us.”
― David Richo

Thanks for walking with us today,

Mermaid’s Mommy

A threenager’s thoughts…

Sep13

Most days our lives mimic other people’s with a toddler, trying of our patience, astonished by the next big accomplishment, mortified by the new sentence or phrase they picked up, tiring as we fight sleep, attitudes, messes and defiance, and quite possibly the most beautiful experience we will ever have. I find myself constantly in awe of what my little being is teaching me and often forget what life was like before she was here. I joke that I want quiet and moments of solace but when I get them, I feel partially empty. I have learned that the pure chaos she brings me, is just what I always wanted.

Then there are times when I am reminded that unlike other people’s lives with a toddler, our journey is slightly different. Where her disease in no way, shape or form prohibits her from anything in life, it occasionally rears its ugly head and forces us to face it dead on. Sometimes that’s in the form of an appointment or treatment, but tonight, it was in the form of words.

As we were finishing bath time I asked her to lift her arm so I could use our special soap on her scales and very matter of fact she said “My scales are disgusting.” First of all, disgusting? Big word for a little girl. Second of all, how, why, where would she have heard something like that? but lastly, ouch. That hurt Mommy to hear. I replied just as matter of fact by saying “No they’re not, your scales are beautiful.” To which she replied “Thank you Mommy, but they’re disgusting.”

I opted not to argue or acknowledge her second statement and just moved on. I told Daddy what she said and he frowned. It seems harmless but it’s so far from that. My two biggest fears are of course, cancer, be it in the form of a wilm’s tumor or melanoma and her being embarrassed or uncomfortable in her own skin. Were blessed that for the most part, her nevus is hidden beneath her clothes and the ones that aren’t are hard to spot with the naked eye unless you know it’s there or are looking, so to this point we have had very little interaction with the public making much of a fuss. So where did she get this idea? Yes, she is three and they come up with the craziest things, half the time she doesn’t even really know what she is saying, but she was so matter of fact about it.

I think back to our first days after being diagnosed and how plagued I was by the thought of this very scenario. That one day, I knew she would resent her disease. That one day I would be trying to reassure she was beautiful even with a few blemishes, but not at THREE. My hope is that by not engaging in it, telling her I love them and moving on it gets out of her head, that she sees I don’t fuss about it.

As her Mom it completely ruins me inside. There are so many other things life she will have to overcome, things she will have to give all her attention to overcome that I never want this to be one of them, though I know that is only wishful thinking. It’s hard enough as a woman to live up to what society thinks we “should be” that I fear the additional hurdles she will face as her nevus continues to spread. I suppose at some point it was bound to happen, I just wasn’t ready for that time to be now.

Her timing is odd considering right now, it looks the best it has in months. I think the cooler weather is limiting the irritation and amount of flare-ups we have had. She has complained maybe once recently that it was bothersome.

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So to all my parents out there, nevus or other skin conditions, what do you tell your little one’s when they say stuff like this? How do you address their remarks about themselves? I look forward to hearing your expert advice!

Thanks for walking with us tonight,

Mermaid’s Mommy

New adventures…

Sep5

This past week we said our farewells to our favorite Physician who has chosen to depart our health care organization and explore other options in this crazy thing we call life. Where selfishly we are sad, we are excited to see where his next adventure leads him. It feels like we have been saying a lot of goodbye’s lately but it’s not completely surprising. We are home. Most physician’s take jobs far from their roots and eventually life leads them back home. I have long thought that any decision that puts your family first, is never the wrong decision. Medicine is a tough world to be in, appointment times are getting shorter, enrollment increases, demands skyrocket and all the while we try to do what we can in the given time, but its never really enough time. It’s stressful to say the least. There are a million reasons one chooses to leave, we are just sifting through the emotions of seeing another fantastic person go.

I had to ask myself why I am so upset about his departure, yes – we have been with him for many years now and he has been with us since day one with Mermaid, but it’s not the length of the relationship that brings me down. I’m not one to feel overly impressed by a degree or status. knowledge is helpful, but even in the beginning he let us know he would be learning with us when it came to Mermaid and I respected that honesty. You can be the best scholar, have rotation experience beyond your coworkers, years under your belt, but is that all that matters? So what is it? It was a different relationship, I never felt like I was a number, he listened, understood where I was coming from and trusted my thoughts that weren’t always traditional. On our last visit he mentioned me wanting someone who would think outside of the box and he nailed it on the head. I have a daughter with an unconventional rare disease, with little to no treatment, it forces me to think outside of the box when it comes to treatment. With little knowledge in the medical world I lean on all of you along with extensive research to help guide us and he respected that.

I have spoke briefly about my rough pregnancy and struggles that followed after birth but not a lot of detail, saving that for a different avenue I’m working on, but he was there through what feels like the roughest 3 years of my life, physically and emotionally. When Bailey was diagnosed, I was heartbroken, when her specialist declined to perform a biopsy, he did it. It may have been a first on such a little one and he did amazing. When I needed a signature for one of our unconventional treatment ideas he signed it, and again to hold onto at our last visit for future use, despite recently being denied by someone covering because they felt uncomfortable with it. When I felt crazy after having Bailey and cried every single day from the pain I was in, he helped me through it. When my options ran out and it led to my hysterectomy, he was there for anything I needed leading up to it and after as we sift through the last leg of remaining symptoms. The thought that I have to start at ground zero with someone who won’t fully understand the level of despair and need we had been at is hard to swallow. Yes, I cried in our last visit.

We are nearly the same age and did  lot of life events close together, marriage, kids… it gave us more to talk about than just “what can I do for you today” and I always appreciated that. No, I have never been one to be overly impressed by a degree or status, but I AM impressed with how someone treats you. We spent most of our last visit talking about life, where we hoped both our paths would lead in the coming years and it was bittersweet.

Mermaid was snapping pictures with her tablet as we talked, it was borderline creepy, but she was entertained and honestly, it’s probably my fault for taking pictures literally 24/7 so I couldn’t blame her. Now, I’m glad she did, where she really needs to work on her skills, I suppose this is how a 3 year old views her visit.

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Don’t get me wrong in reading this. We have an amazing support system. Immediate family, extended family, work family, friends, my amazing husband, we truly are blessed, but there are some things your support sytem can’t do for you. You know, like the medical side of things. To so many people reading this I know you understand what it means to find that right Physician, someone who you trust, in our case, someone who felt like a friend, I know you are keen to how important it is in our world, and when it goes away, we all feel a little lost.

To our favorite Physician, may you ever lay eyes on this… and don’t feel like I made it clear,  Thank you. Thank you for being our rock, our advocate and always treating us like people. Whether you feel it or know it, you are an amazing Physician, as you know, I have been around a long time and I put you in that handful of exemplary people to walk into my Kaiser world. Whether you choose Medicine or a different road, keep that bedside manner. Continue to get to know people and truly show them you care. It will take you far.

To all our readers, so much of my knowledge never would have happened without that biopsy, it led us to a true diagnosis and the Yale study, without that signature we never could have shared the incredible results of our wartPEEL trial and without his helping hand I personally never could have gotten to the place I did to start this whole adventure. Wish us luck on our journey to find our next cohort on this wild ride.

Onward and upward to our next chapter.

Thanks for walking with us today,

Mermaid’s Mommy

Back to ground zero…

Aug19

Well, sadly… we are losing our Primary Physician. Those of you that have been with us from the get go know that he has been the one constant in supporting Mermaid’s care. When we fought with dermatology to have the biopsy done because they said it would be too “traumatic”, he gladly did it for us and she was a champion. In fact, everytime we went to see him there on after, she said she would let him have another mermaid scale if he wanted. When Yale wanted the biopsy sent to them, he put it into action without hesitation. When we needed physician approval for the wart-PEEL, he signed off on it and backed my decision to trial it, knowing it may be a bit controversial – and to date, it has been the best treatment we have had.

Though our early days left him perplexed and we were sent to Dermatology, we never quite stuck with anyone and he became our safety net for all our needs. It seems kind of silly to recognize just how upset I am about it when there is a huge pool of perfectly educated Physician’s to choose from but when someone has been there from the beginning, it’s hard to let go.

Some of you know, others don’t, but after Mermaid I got moderately ill. Enough that after 2 years of treatment a decision was made that I had to have a hysterectomy. When the decision no longer feels like you own it because there are no other options, you crumble a little bit. Throughout that process he has definitely seen me at my worst. Within a matter of a few short years I rode quite the emotional roller coaster between Mermaid and myself and through it all, he was with us, helping in every way he could. For the care he has provided I will forever be grateful.

While we sift through a period of limbo searching for our next permanent physician we may turn to all of you more than normal for help and direction. Luckily, we have all of you! So, with that being said… were looking for some advice!

Mermaid’s hand seems to be progressing again. I don’t want to use the peel on the surface of her hand due to potential scarring and pain but not only has it cracked and bled it’s now thickening. Aside from “moisturizing”-  those of you that deal with the thickening aspect of it, what do you recommend and does anyone have experience with hand lesions specifically? It’s such a sensitive spot and I hate to cause any damage drawing additional attention.

Have any secrets you care to share?

Wish us luck!

Thanks for walking with us today!

Mermaid’s Mommy