Archive | August 2016

Back to ground zero…

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

Small gestures make big things happen!

Aug13

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

Mermaid’s Ashore!

Aug7

To most people, Portlandia is just a quirky show poking at the oddities of Portland, Oregon. I have to admit, “put a bird on it” and “the dream of the 90’s is alive in Portland” are genius and crack me up every time I see them but most of it is beyond me. We live in a small town East of the city and trips there are rare.

Where I may not frequent Portland these days, being born and raised in this great state I am very aware of who “Portlandia” really is. In the midst of downtown in a rather modest location sits the second largest hammered copper statue in the United States, right behind the Statue of Liberty. At 34 feet 10 inches tall a woman holding a trident reaches down to the people below her. Portlandia was modeled after the city’s seal which also boasts a woman holding a trident.

The trident is known to be the weapon of Poseidon, the God of the seas, and Neptune, the God of freshwater and the sea. As a city that was once known to be the number one place in the western hemisphere for “crimping” and “shanghaiing” amongst the sea captains and sailors, a city that’s known for it’s beautiful bridges spanning the river, a city that boasts the amazing dragon boat races, has a waterfront walkway that hosts festivals – bike riders – walkers – runners – fountains and those just gazing at it’s beauty and a city who’s access to the water make it an easy port for transportation of goods; once known as one of the most dangerous ports in the world; it seems only fitting that it has a protector in Portlandia watching over the city.

With so much action on the water it was only a matter of time before it hosted it’s own Mermaid parade. On July 30th Una the Mermaid & the travelling Fanta-Sea Cove organized Portlandia’s first annual Mermaid Parade.

Those familiar with us can only imagine the excitement in my household upon hearing this news, those new to us, let me explain.

My beautiful daughter was born with a rare genetic skin disease called Linear Epidermal Nevus. It’s complicated, it comes with a laundry list of potential complications including skeletal, ocular and nervous system abnormalities. Has the potential to cause both benign and malignant tumors, raises the risk of melanoma, and in our case, may potentially take over the entire left side of her body. At first we were devastated, plagued by the “what if’s” and lost due to the lack of information and medical knowledge surrounding her disease. Over time we found some support groups and started this blog to share our journey and connect with the world to both learn from them, and share what we know. It’s hard to explain to a child what’s slowly growing on their body, we joked that her “scales” were from her previous life as a fish. A friend said to us, can’t you find something better? Like a Mermaid? and it stuck. From that moment on she became Mommy’s Mermaid. As she has gotten older she has told strangers, doctors, friends and family about her Mermaid scales, she whole-heartedly believes that they were a gift from a Mermaid. She believes they are a special and wears them proudly.

An opportunity to take her somewhere full of Mermaid’s, those magical creatures that shared their beauty with her, to walk amongst them and relate, could not be passed up. I had no idea what to expect, I thought it would be small, generic, cute but nothing to write home about. I could not have been more wrong. I know now, that I need to start preparing for next years event! Mermaid could barely contain herself as we got ready, Mama are we leaving yet? Mama, are we ready? Mama, can we pleeeeaaaaasssseee go now. As if she knew just how special it was going to be.

We were blessed to have a friend and her little one in tow with us, with the girls in wagons we headed to the historical waterfront, the friendship circle to be exact. The friendship circle celebrates the sister city relationship between Portland and Sapporo, Japan. The Friendship Circle includes a pair of 20-foot stainless towers that generate electronic tones. I can only describe it as nothing shy of magical. Men, Women and children of all shapes, sizes, and ethnicity filled the gorgeous backdrop of Portland in full costume. There were people giving out gifts, bubbles, shells, dancers, birds, artists and even a man fishing for Mermaids with a cat on his line.

We flipped down waterfront passed Saturday Market and the Brewfest. People lined the path taking pictures, videos and cheered. After the parade we took some time to enjoy the city and played in the fountains!

We get caught up in the daily grind, I often forget to take moments to stop and truly let myself enjoy the beauty of imagination. Mermaid’s disease will be with us forever, there is no cure, very little relief for symptoms, and at this time – minimal research or trials to move in a forward direction. If allowing my 3 year-old to believe that she was gifted her scales by a Mermaid gives her even one small ounce of happiness in this journey, I will believe it too.

To the amazing group that made this dream a reality, to every single person that came to celebrate and to our honorary Mermaid’s Geneva and Charlee for walking this path with us, I thank you all. This parade meant so much to us. As magical as I saw it, I can only imagine what my little girls thoughts were.

There are no words to describe the beauty and creativity that was bestowed upon us that day but thanks to the talented Christelle Morgan who has graciously allowed me to share some of her work, you can enjoy some of the sites from our day. Enjoy!