Tag Archive | Love

Mystery spots…

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

 

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A new shell…

This is my life book. It has been by my side for almost 6 years now. It is always near me. I carry it in my bag and it’s rare the two of us are far apart. When I get to work, I take it out of my bag and set it next to my computer.

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It’s tattered, torn and hanging by a thread, but you know what – it’s full of so much love. Inside this book are my ideas. Those pop in your head, don’t want to lose them ideas. It has over 5 years of finances carefully listed and checked off month after month. It has party invites, my step son’s 8th grade graduation program, Mermaid’s official pathology report from September 2015, a picture of a friend I just lost, stuck through the back pages is a guardian angel pin gifted to me. Some of the pages are burnt as I was writing in it one night by the fire when I was pregnant and a hot ash caught it on fire. It holds a card my husband made me, a goodbye note from a Physician & friend I highly respected that moved away, a list of all the places I want to visit and a recipe my Mom hand wrote.

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Just last week the entire cover started tearing off and I taped it up with scotch tape. One would think I could just go buy a new one but it holds sentimental value. As I was taping it up I thought to myself, this is kind of like my life right now. Barely held together, full of so much love, but in need of a new shell.

You see, these past few weeks have been more trying than I can even begin to explain. Mermaid had what I thought was nevus starting to grow on her face, the moment it started to bleed I finally took her to urgent care, with no answers we were led back to dermatology and thank the Lord, it just ended up being eczema but we are now battling that. I have had some challenges at work and been faced with making very difficult decisions, I have had to allow myself to be vulnerable, fight anxiety and search within for what was the right thing to do. A few days ago I woke up overcome with grief. I sat down in the shower and sobbed, missing my friend who passed a few months ago. Her passing is still fresh and has completely altered my life. I barely made it to work and while there, I wished I cold just get in my car and drive to heaven to have a cup of coffee with her. That being completely unrealistic, I contemplated driving anywhere, just going, clear my head, but I didn’t. I stayed, I held up my responsibilities and tried to power through.

Mid-week I told myself to shake it off. I have so many blessings and hard times will come and go. Find a new shell.

That morning when I got to work, there was a package from a friend. It contained a Mermaid journal, a coffee card and a letter with 9 reasons why she sent it to me. So once again, I sat there crying. This time, happy tears. She spoke to work, my Mermaid and the loss of my friend, but #9 was my favorite. “Just because!”

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She didn’t know about my life book until I told her that morning, she just knew I was struggling to find peace.

She gave me my new shell.

When  I told her how much it meant, she kindly said “See, people are listening.”

It’s easy to forget our blessings, to dwell and struggle to find our footing; and that’s ok because somewhere along the way, something small will remind you. Give you a breathe of fresh air and a chance to start new.

I put some of my hard decisions in motion, I started yet another nightly routine for Mermaid’s skin and I talked to my friend driving home that day. Ok, so I talked to myself, but I know she heard me. I told her to help me find a way to let go, not forget, just let the grief go.

Yesterday Mermaid was suppose to be cleaning her room but instead she made me a bracelet. She was so proud of herself and asked me to wear it to work. When we got home today she found it on the table and said “Mommy, you forgot to wear your bracelet to work” – ashamed, I apologized. A few minutes later she came out of her room with a different bracelet and said it’s ok, you can wear this one, it’s your favorite. This was not my favorite bracelet, it’s not even mine, it’s hers. She can’t possibly remember where it came from and why she said that, or chose it, I can’t explain; but I remember where it came from. A few year’s back, my friend that passed, gave it to her while we were visiting in Seattle. Maybe it was her small way of reminding me of the good times, telling me it’s ok and that she heard me.

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This weekend as I transfer my life book to it’s new shell I will embrace the new beginning and here are 9 reasons why:

1.Because I have an amazing family that supports my every move.

2.Because I know deep down inside, the hardest decisions are often the right decisions.

3.Because as of now, Mermaid has no complications as a result of her disease & we can jump any other hurdles thrown our way.

4.Because I have 18 amazing years of memories with my late friend to smile about, not cry about.

5.Because when we think nobody is listening, they are.

6.Because today, I felt the sunshine on my face for the first time in a while and it reminded me that the clouds always clear.

7.Because the positives I gain through work outweigh all the negatives.

8.Because I am slowly learning, 35 years into this life, that it’s ok to stumble as long as you get back up.

and

9. Just Because!

My Dear Kathy – I thank you for my new shell and your humorous but powerful words. I thank you for listening. I thank you for reminding me of the good. My promise to you is to listen to someone else, and when they least expect it, send them a new shell.

Today, you are an honorary Mermaid.

Thanks for walking with us today!

Mermaid’s Mommy

From hiding to Hollywood!

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…

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…

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…

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

Small gestures make big things happen!

Over the past few weeks I have grown weary. Mermaids Nevus has spread and thickened  down her arm. For the first time EVER it cracked on her hand and began to bleed. My heart sank.  Like all of us Nevus parents, we worry… will it be painful? Itchy? How much more will it grow? Will people now start saying stuff about it? Will she be able to tell me if it’s bothering her? What can I do to FIX it? Though deep down inside, I know I can’t “fix” it.

The timing seemed impeccable that just as all of this was running through my head, we had our dermatology check up. More than a check up, we were once again, meeting a new Physician. From day one of questioning my little one’s first initial “spot” at less than 24 hours old, this marked our seventh physician to now play a role in her care. Some passed it off as nothing, others perplexed, one with which – we will just say – we didn’t “click”… and now another to lay eyes and insight into our world. I am always nervous about their responses to me, how they will treat all of us, what they will advise, will they be knowledgeable?

Well, I can only say this… best appointment to date. He spoke to the given they all do when we meet someone new – no cure, little treatment, managing symptoms but then hit on the piece I have been dreading. I have been told by two separate physician’s now that the location of Mermaid’s Nevus on her hand will most likely result in surgery. The target was school age. The thought of taking the risk to put her under and the pain she would endure following the procedure is hard to swallow, though I fully understand the downfall of not having it done. With each patch that grows I feel our days are numbered. Going into this visit I was prepared to hear the dreaded words. To my surprise it was the complete opposite. I showed him before and after pictures of the wart-PEEL treatment we did and the spot now cracking and he seemed both intrigued by the product, which he had never heard of being used for this, and impressed by the results. He felt that she was still in a state of manageable care.

We talked briefly about abnormalities and he felt it would be a reasonable time to have her eyes re-checked. For those of you asking recently about the ocular abnormalities, he did confirm that cataracts could develop at any time, it is not something that would necessarily arise in the youngest of age.

He noted that her skin tone works nicely to hide a lot of her nevus which made me laugh, supported our use of the controversial wart-PEEL that contains a cancer agent and said I was doing a good job. It didn’t hurt that he also complimented my own knowledge but what I appreciated most, was that he said he trusted me. He said we do not need to return for 1-2 years unless I have a concern and to keep doing what we have been doing. At that time we will re-asses the need for surgery.

It was short, to the point and felt amazing to leave knowing that as a family, we are doing all the right things.

Moving forward we will schedule another eye appointment with the specialist and continue to search the world for helpful products, and of course… share the outcome with you! Speaking of… seems like it’s time for a new trial!

With the new growth and being in swimsuits, dresses and tank tops over the summer I have wondered about more kids seeing it or asking about it and how she handles that. Picking her up from school one day last week one of her teachers shared a cute little story with me about Mermaid loving bumblebees. I said ya, her Dad taught her they are nice and she pets them at home and we have made some products for her skin with beeswax. She has said to me many times that the nice bees make honey for her scales and it’s adorable to hear her make that connection. Her teacher said she noticed her Nevus and asked Bailey what happened, her response? “Oh those are my Mermaid Scales” and just moved on.

It brought me comfort knowing that even when brought to her attention by someone, she is not ashamed nor phased  nor hesitant to answer about her uniqueness. It made me feel proud to hear of her confidence.

It doesn’t matter what your differences are, be them seen by the naked eye or something internal, it’s how we handle what we were dealt. It took me a long time to get here, to feel confident both in my own understanding of her disease and making sure she knows it’s ok. I didn’t get here alone though, whenever I feel like we have a success, I feel like I owe thanks to those who helped it come about. My dear friend Aindrea who is across the country not only introduced me to the treatment for her hand and walked me through it but has remained at my side through this entire journey since our first encounter with one another(one day we will get to have the biggest hug ever) and to all my family, who have never treated her differently and encouraged my path of finding more knowledge. Last weekend I saw my Mom kiss Mermaid’s scales on her hand,  letting her know she see’s them, but loves them. Of course, lastly, to each one of you reading this, whether it’s because you love my Mermaid and enjoy hearing about her journey or find yourself looking for answers and support through our path to relate in your own nevus world, we know you are here and appreciate you.  It’s the small things that get us to big places.

Here’s to hoping we have many more successful months ahead of us!

To being confident and finding acceptance, we thank you all!

Thanks for walking with us today,

Mommy’s Mermaid