This is Brave

This is Brave: Warrior to Warrior

Our warriors are many things…grateful, connected, thankful, determined, enlightened, educated, strong…BRAVE. They are part of a greater community of amazing individuals faced with the massive hurdle that is cancer. Through reading all their stories, they’ve proven that one thing is absolutely certain…we’re stronger together.

In that spirit, past and present warriors have shared personal messages to each other. Some are related, some have never met each other, but they’re all connected by a shared journey and determination to BE BRAVE.

To every skin cancer warrior and survivor.

By: Holly Rowe

What a unique and challenging time we are dealing with right now. The good news is…while many of us are self-isolating at home, we are less impacted by the sun! But I know when we are able to return to some sense of normal life, many of us will rush to participate in outdoor activities. By nature we are all sun worshippers, it has been a very difficult transition in my life to realize that the sun can hurt me. But thanks to protective clothing and great companies like Coolibar, when we do finally get to bask in the sun, we can do it responsibly and with great protection.

For all the nearly diagnosed, stay strong and try not to let the worry of what is happening in our world coupled with your new diagnosis be overwhelming. There are many improved treatment options that can help you and positivity is key in overcoming this new challenge. Just know you have an army of fighters, survivors out here rooting for you, supporting you and here to listen. Together we can accomplish anything!

To my husband Steve. Love, Marilee.

Steve Hamilton is my husband and one of the strongest people I know. Since the day of his melanoma diagnosis in 2006, he has handled this unexpected journey with grace, strength, positivity and determination. I don’t recall a day where he appeared defeated – and there were many days he easily could have been. He willed himself to beat this beast and did so with a positive attitude that I am still in awe of. I know in my heart of hearts that in addition to the phenomenal medical care he received and the support from family and friends, his positive attitude was a critical part of his survival. There were times when HE was the one actually keeping ME – his caregiver – upbeat. Please read his story and if you or a loved one is battling a melanoma or any serious disease, please do everything that you can to be determined to stay positive. There is hope.

To my Melanoma brother Pat. Thank you for being on this journey with me. Love, Bethany

By: Bethany Greenway

I have a brother, not in the literal sense or by blood, his name is Patrick Guddal. Patrick and I have been walking a nearly identical path for nearly four years now. Patrick and I were both diagnosed with stage III melanoma in the summer of 2016. When I finally met Patrick at a skin cancer event here in Austin, TX I felt an immediate kinship. For cancer patients, it’s hard to find someone who truly understands what you have been through and how it changes you. Patrick “gets it”. He understands the trials and tribulations that a cancer diagnosis brings with it. During his fight Patrick chose to become a melanoma advocate and educator. He has spoken at multiple events sharing his story and the importance of early detection. His strength and self-awareness became a pillar to support his newfound mission to educate others about skin cancer and how dangerous it can be. I am inspired by his openness, perseverance, and willingness to share his story to help others. I hope you are too

To my friend in advocacy Robyn. Your unbeatable positivity is incredible, Susanne.

By: Susanne Milne

I met Robyn for the first time at the yearly MRF Hill Day in Washington D.C. and was immediately impressed with her positive spirit, her great strength though her melanoma journey and most of all her natural involvement in advocacy. Robyn’s own melanoma story, as well as her brother’s, speaks to the heartache of the illness but also of the amazing stories of recovery and how to find new purpose in life during and after a cancer diagnosis. Robyn is involved in advocacy in several ways; with children, with adults, in the workplace and all efforts are both locally, in her neighborhood, and on a state level with the MRF. Clearly, advocacy has become a calling for Robyn, which is truly to the benefit of the melanoma community as she clearly excels at bringing awareness and education about melanoma. Robyn has an inner strength that has allowed her to stay positive and strong throughout her journey. This shows in her great smile, unbeatable positivity, and her direct and friendly interactions with anyone she approaches regarding the melanoma cause. I look forward to all of you to read Robyn’s amazing story, to follow her on social media and to meet up soon in our Be Brave Coolibar shirts.

To my friend and mentor, Doug. Thank you for your leadership, Cheryl.

By: Cheryl Stratos

When the going gets tough Doug Brodman steps up to lead the charge. I met Doug when he was elected to the Board of the Melanoma Research Foundation and it was there, we connected as fellow Stage IV survivors. Our stories were similar as we both had received Christmas-time diagnosis that set our worlds on fire and landed us in clinical trials that would not only change our lives forever but ignite a quest to help find a cure for melanoma.  Doug has brought a great energy to the MRF by incorporating his mad business skills to energize the group. He has worked to initiate new strategies to grow the MRF that will ultimately fund more clinical research and help advocate for patients looking for resources to survive. Melanoma is the most competitive race you’ll ever run, and Doug understands how to help win the marathon. I am honored to know Doug and to call him a friend and mentor.

To my incredible daughter Marit. We are so proud of you! Love, mom.

Some friends lament that Marit pulls out her ‘cancer card’ a lot. And, I say, thank goodness she does! Her commitment to the fight against melanoma has been her living legacy, and at the young age of 15 no less. As she has grown up, so too has her message and purpose. It’s been a journey from promoting awareness that pediatric melanoma actually exists, to imploring politicians to fund critical melanoma research, to most recently serving as the self-appointed ‘sunscreen queen’ among her friends at her all-girl high school; these friends now diligently practice sun safety for fear of Marit guilting them. I’m beyond proud to be her mom and hope she continues to play that ‘card’ to the benefit of us all.

To Jess, the Ocular Melanoma sister I’ve never met. Your gratitude is inspiring. Thank you for your story!

By: Lindsay Zubeck

Like Jess, all I wanted was an all-American life full of adventure and happiness. I never imagined ‘full of adventure’ meant adding in the ‘cancer adventure’, but it did. I also, would not wish this adventure on anyone, but it has made me a better person. The journey, the whole journey – the highs and lows, the peaks and valleys, the moments I couldn’t stop crying in fear to the moments when the good in so many people made my heart feel more gratitude than ever.  My life before cancer, during treatments and now living with cancer – the ‘cancer adventure’ has been the best one yet and that shines so clear in Jess’s writings too.

Initial treatment of ocular melanoma does not involve chemo, we don’t lose our hair or look like we are battling the biggest journey of our life like others – but internally we may be a mess, many of us lose our sight or our natural eye and for months if not forever we walk around wearing a patch and/or a prosthetic  eye. That is when we can’t hide our cancer. The patch is a forever accessory for Jess or for me I pray I don’t accidently touch my prosthetic the wrong way and it flips upside down in public or pops out! 😊

After my initial treatment, I never wanted to look in the mirror – I didn’t know who I was – I could only see tumor filled eye looking back at me. But then a year and a half later my tumor began to grow back, and my next treatment plan was enucleation. I didn’t know what to expect when I awoke and removed my eye dressing but when I did, I finally found peace. Jess – I loved that you shared you expected to see someone foreign, but you saw your bright familiar face, your smile, your on-point eye-brows and you saw you again. After enucleation – I too saw myself again – even my on-point eye-brows. Just one eye not two.

When you read someone’s writings and you laugh, you cry, and you feel like the same words could come from your mouth you know they have felt and traveled on your journey before and with you even if your physical paths have never crossed. Jess – your words are truthful and honest, they are brave, courageous – your gratefulness is inspirational. Living with cancer and one eyeless in your 20s, I in my 30s is not fair but I admire you for finding the best and not missing out on anything and everything life has to offer. The only choice you believed you had was whether you’d let this break you. You choose to find ways to embrace your journey the whole journey and I am honored to share our stories together. Life is too good to not enjoy the ride and thank you for taking us on your ride. Be brave my friend, my OM sister! Let’s celebrate #BeBrave #BeGrateful #BeYou together. #youcantakeoursightbutnotourvision

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This is Brave

This is Brave: The Mother Behind the Inspiration

By: Cheryl Adams

My son Graham was diagnosed at the age of 9 with pediatric melanoma. At the age of 9, you really do not know what the impact of a cancer diagnosis means. Now, at the age of 16, he knows. We all know. We have adjusted to handle the unexpected turbulence in life and stay brave so we can support Graham and be a strong voice in the melanoma community.

As any parent knows, it’s easy to become distracted by emotions, which generally leads to fear and can make any situation more difficult. We focus on what we can do, collaborate with others in similar situations hoping that we can lift each other up by sharing common stories.  There is a calming effect when you know you are not alone.

As the mother of the founding family of the Be Brave campaign, our hope was to tell our story and be part of a platform that would allow people affected by melanoma to form a circle of strength in which patients and caregivers could share stories that inspire us and together we would all Be Brave

Fear, is the opposite of Brave. I am quite certain Graham has fear. I have fear for him. His family has fear for him. He, however, is alive and is living in such a way that the world knows he is afraid, but he loves more than he fears.  My fear is that cancer will win and he will lose his bravery. His bravery is inspirational and for that I am grateful.

So, as we enter the third year of the This is Brave campaign, I challenge you Find Your Brave! Here are a few suggestions…

  • Speak Bravely. Tell your story. It will inspire someone. It will help someone
  • Ask Bravely.  Have the strength to be your own advocate. There is power in knowledge. Collaborate with others in the melanoma community and surround yourself with people who can direct you to the right resources, research, educators and advocates. They are out there. Be brave enough to ask.
  • Connect Bravely. Connect from your spirit and from your soul, with others who lift you up and give you extra strength.
  • Serve Bravely. If you are able, give back and support the greater good.

On a personal note to my sweet Graham; life is not fair. Melanoma did not allow you to have a normal childhood. I watch you suffer. I watch your siblings and your family worry. I watch you struggle. I watch you hurt. I also have the privilege and the honor to watch you Be Brave. A Brave that I never knew existed. A Brave that is beautiful, vulnerable and innocent.  My wish for you is that you will always Stay Brave.

To read more on the family that inspired This is Brave, watch the video below and visit HERE.

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This is Brave

This is Brave: “I’ll Beat This Again”

By: Julie Weber Smith

So many awesome things have happened since I told my story!

At the end of June 2019, I started working part-time at Warren Chiropractic Center. I work at the front desk and love seeing the improvements of the patients as they get their adjustments. The first day I worked there, I was driving into work and just started crying. I didn’t know if I would ever be working again! As much as we get upset with our jobs for so many reasons, I have thanked God for this job and the owners of this place for giving me a chance. Being employed is just another thing we can take for granted in our lives.

On October 28th, I went in to see my Oncologist to get results from a recent scan. They said a word I wasn’t sure I would ever hear…REMISSION!!! I will never forget the look that my husband and I gave each other. LOL! It was complete shock and happiness. I do need to continue taking target medicine Mekinist and Tafinlar that are designed to shrink and kill cancer cells until my next scan in April. But for now, I’m in remission!!! I get my skin checked every six months by my dermatologist and the most recent check showed that everything is fine. Nothing needed to be removed. Yay!

My energy and strength are getting better and I have been advocating for those fighting cancer. I am highly involved with the American Cancer Society Relay For Life in my community. I mentor and recruit teams as a team coach on our ELT Committee (Event Leadership Team). In the nine years I’ve been working with Relay for Life, I have raised thousands of dollars for cancer research and treatments, rides for patients, Hope Lodges (places to stay for cancer patients and their families while getting their treatments), and have been working on the 24/7 support call line. What I enjoy most is helping these people and their loved ones fight this cancer. Letting them know there is help, and that they are not alone makes such a difference in their battle.

Just recently, an American Cancer Society employee nominated me to be honored at a Coaches vs Cancer event at the University of Notre Dame Men’s basketball game. Nick Djojo, John Mooney and TJ Gibbs surprised me at my work with VIP tickets to the game, along with a few other gifts. I went to the game thinking there would be other cancer survivors walking out with me to the middle of the court and it was just me! They honored me for my work with ACS and in the community. I couldn’t believe it! I received a signed basketball from all of the players and courtside seats. It was so cool and very humbling.

Since working with Coolibar to tell my story, I’ve been able to help even more people going through the same fight as me. I have been sharing what this amazing company and their clothing is doing for everyone in protecting us from the sun, and that they are raising money to make sure that there are treatments and research for Melanoma. I’m grateful to be partnering with them.

I’ve been sharing my story with others since I was first diagnosed with Melanoma in 2013. I want to give some hope to as many people and their families as I can.

March 20, 2020: Taken from a live video feed to friends and family…

I’ve got some news to tell you. I’ve been having some pain on the right side where the cancer was, and I went in and told Dr. Ansari. I talked to Dr. Ansari. I had a CT Scan and I am no longer in remission. I found out yesterday that I have two masses. The mass on the right side is 10.1cm x 6cm. the one on the left is 4.8cm x 4.2cm. Both have fluid in them.

The plan right now is that on Tuesday I’ll go in for a biopsy and they will take the fluid out of the tumors and hopefully, that will relieve some of the pain that I’m having right now. Then on Thursday, I am going to Indianapolis to talk with a surgeon to see if they can operate. If operable, that will be awesome! I go for an MRI on April 2nd and then April 3rd I meet with Dr. Ansari again and we’ll discuss what needs to happen. The treatment we’ve been talking about is immunotherapy again, continuing the target medicine I’m on now, and possibly radiation. It could be all three, or a combination. We’ll see what happens. I’ll know more after April 3rd. Things can change between now and then as we all know. Things happen every day, every hour.

I just want to let you all know that I’m praying for every single one of you. With the coronavirus, we’re all in this together and we’re all effected one way or another. I’ve been praying for you and your families. That’s it.

I don’t feel as stressed as I did the very first time. I feel kind of at ease. I’m still kind of numb to everything. But it will be okay. It will be alright. I’ll beat this again. The cancer bug says it wants to attack me again and I’m telling it, “Not today! You messed with the wrong gal!” We’ll beat this again and do what we can. We’ll get this all taken care of and everything is going to be okay. They say third time is a charm and I’m praying it is.

You know, how I look at it is this…I’m going to be free from this one way or another. I’ve said it before, it’s going to be here on Earth or in the hereafter, and when you think about it either one is not a bad thing. I’m scared and I’m upset. I’m angry because I was doing so good. But I kinda knew. I was doing so good and thought, “I want to keep going! I’m doing great!” so I didn’t say anything. I didn’t want to be the one calling my doctor all the time because of this or that and have it turn out to be nothing. Now it’s worse.

In the same token, I can’t beat myself up for this either. I will just go with what is going on right now. And right now, I’m going to beat this and kick it! Even if I might have to kick a little harder this time.

Anyhow, I hope you all are doing well! I love you all! Keep safe with your family and friends and love on your family! Just let them know that they are loved. I love you guys.

To read Julie’s story from last year’s campaign, visit HERE.

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This is Brave

This is Brave: Describing Your Entire Life with One Word

By: Cassie Beisel

I have been through many iterations of my personal definition of the word change – my favorite – acknowledging and accepting the past and what you’ve been through, but knowing, deep down, that it is the only way to move forward. The word “change” has defined my life since 2011 and at first, change meant inconvenience, fear, inconsistence, anxiety and loosing who I was and wanted to be to cancer.

To quickly catch you up, in 2011, my life changed. I was diagnosed with advanced melanoma. I didn’t find my cancer by noticing a changing mole, the only sign was a palpable lymph node in my armpit. Later, I would find out that, of my 30-something lymph nodes removed, three tested positive for melanoma.

Since my diagnosis, I have had the above mentioned full lymph node dissection, completed a very long and grueling year of Interferon, was diagnosed with Acute Lymphoblastic Leukemia, had a life-saving bone marrow transplant. On top of that, I had squamous cell carcinoma “where the sun doesn’t shine” resulting in three separate Moh’s surgeries.

My work as Advocacy Officer with the Melanoma Research Foundation (MRF) has given me a new definition of the word change. Now change means to overcome, to advocate, to make better, to rally and to stand up for others. It means working every day to try to leave this world a little bit better than I found it. As the list of cancers and survivorship issues continue to grow, so do I and so does the meaning of change.

The ability to change is in all of us and not only in the traditional sense. I know change can be hard, inconveniencing and many times unwelcoming, but even the smallest amount of “change” can make a world of difference in the lives around us.

I ask you to embrace change, whether it’s smiling at someone who seems to be having a bad day, giving yourself permission to feel upset at what life dealt you or sharing your experience, journey, story—whatever you want to label it—to give a piece of hope to someone who needs it. Change can and will happen with every gesture we make, no matter how big or small.

To see Cassie’s story from last year’s campaign, visit HERE.

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This is Brave

This is Brave: “I have survived 25 years of skin cancer.”

By: Judy Cloud

This year marks the 25th year that I have had skin cancer. While it’s not a joyous occasion, nor am I planning any sort of festivity to celebrate my ‘anniversary,’ I am thankful. Why, you ask? Because I have survived 25 years of skin cancer. I have endured everything it has thrown at me so far. I’ve made it through twice-yearly (or more) exams, through biopsies, the anxiety of waiting for biopsy results, surgeries, stitches and recoveries.

I wouldn’t be truthful if I said I’m not tired of skin cancer. There are far too many days that I am weary of having skin cancer. I’m weary of the constant skin checks I do. I’m weary of the just-like-clockwork dermatologist appointments. I’m weary of the anxiety of a suspicious area being found on my skin and knowing there’s a good chance it will need some sort of treatment.

But thanks to my far too many years of over-exposure to the sun and the use of tanning beds (and a small part to genetics), this is the hand I’ve been dealt. The damage I did to my skin when I was younger continues to show up years later.

Words of advice: if you love to spend hours lying in the sun without sun protection or going to tanning beds and think this won’t happen to you, you might want to think again.

A definition of endurance is: “the ability or strength to continue, especially despite fatigue, stress or other adverse conditions.” And that is exactly what we, as skin cancer survivors, do. We endure.

I have endured every treatment up to this point. I will soon have surgery for an infiltrating basal cell carcinoma on my face. It’s not a huge area on the outside, but I have no idea how large it is under my skin. I’ve had to find a new surgical specialist, as my previous doctor retired. This new-to-me doctor will perform a procedure I’ve never had before. And honestly…I’m worried. I’m nervous. The new doctor comes highly recommended. I don’t question his capability to perform the surgery, but he also doesn’t know how far the roots have spread under my skin. It could be a small surgical area, or it could turn out to be a large area. There’s a chance that this could be the surgery that ends up permanently changing my facial features.

As a writer and moderator for HealthUnion’s SkinCancer.net, I interact almost daily with numerous people who are battling skin cancer or who are supporting a family member in their battle. Heartbreakingly, too many people have lost their lives to skin cancer. We must continue to increase awareness of the dangers of over-exposure to the sun and tanning beds. We need to make sure people know how to practice good sun safety habits. We need to make sure people realize that their inaction toward sun safety can cause skin cancer.

If you’re still staying in the sun for hours without protective clothing or sunscreen or if you visit the tanning bed because you think you look better with a tan, please change your ways. You can choose to stay out of tanning beds. You can choose to practice good sun habits. You can set a good example for your friends and family on practicing sun safety. You are worth it, and so are they.

To see Judy’s story with us from last year’s campaign, visit HERE.

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Live Wisely Quiz

How Much Do You Know About Skin Cancer? | QUIZ

Results

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#1 True or False: Melanoma only occurs on the skin

It can ALSO develop anywhere on the body – eyes, scalp, nails, feet, mouth, etc.

#2 True or False: Skin cancer is the most common form of cancer in the U.S.

FACT: More people are diagnosed with skin cancer each year in the U.S. than all other cancers combined.

#3 What percentage of melanoma cases are thought to be caused by exposure to UV light and sunlight?

#4 True or False: More people develop lung cancer because of smoking than develop skin cancer because of indoor tanning.

Actually, more people will develop skin cancer due to tanning beds.

#5 What is the 5-year survival rate for those who detect and treat melanoma before it spreads to the lymph nodes?

The importance of early detection is crucial. If detected after spreading to lymph nodes, the percentage drops all the way to 64%.

#6 Melanoma is the leading cause of cancer death in women of what age group?

It’s the leading cause of cancer death for 25-30 and 2nd for women ages 30-35.

#7 True or False: At least 1 in 5 Americans will develop skin cancer by the age of 70

#8 True or False: The majority of people diagnosed with melanoma are white women over the age of 50.

It is actually white MEN over the age of 50 that are most at risk.

#9 True or False: Only people with fair skin are at risk of skin cancer

Skin cancer can affect ANYONE, regardless of skin color or ethnicity.

#10 What is the most common form of skin cancer?

Basal cell (BCC) is the most common form with an estimated 4.3 million cases in the U.S. each year. Squamous cell is the 2nd most common with more than 1 million cases each year.

finish

Sources:

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Live Wisely

Do I Need to Wear a Mask?

This is a question we’ve been asking right along with all of you. Currently, the CDC recommends that these individuals wear a mask:

  1. People who have COVID-19 and are showing symptoms to protect others from the risk of getting infected
  2. Health workers
  3. People caring for someone infected with COVID-19 in close settings

But as we all know, things are changing rapidly. As of March 30th, two arguments were shared by leading government agencies:

  1. Dr. Robert Redfield, Director of the Centers for Disease Control and Prevention (CDC), confirmed that they are reviewing guidelines on who should wear a mask. The biggest reason for this is that the proportion of individuals who are infected but asymptomatic could be as high as 25%. These people won’t show any signs, like a fever or cough, for up to 48 hours after they’re infected. If everyone is wearing a mask, the 25% carrying COVID-19 will infect far fewer people around them.
  2. Dr. Anthony Fauci, the Director of the National Institute of Allergy and Infectious Diseases (NIAID), has expressed concern that the recommendation to arm everyone with a mask could cause even worse shortages of N95 and other medical masks for health care workers who need them most.

The CDC does have a solution for this need for balance:

During a public health emergency, face masks may be reserved for health care workers. You may need to improvise a face mask using a scarf or bandana.

Centers for Disease Control and Prevention

When searching for a mask please keep in mind that our UV masks were NOT designed to prevent the transmission of airborne illnesses or viruses. If they were, we’d be sending them to healthcare professionals, toot sweet! Our Ultimate Coverage masks, bandanas and gaiters were created to protect against 98% of UVA/UVB rays and are essential for those seeking serious sun protection. 

If you are in need of added protection, you can create a mask at home. One of our This is Brave warriors, Bethany, who is immunocompromised and must wear a mask, has been making masks for herself, her children and healthcare workers. Here are some of the tips and tutorials she is using to help prevent the transmission of COVID-19 and other viruses.

Regional Medical Center recommends these fabrics: 

  • Outer lining: denim, duck cloth, canvas, twill, tightly woven fabric
  • Inner lining: cotton, cotton-blend non-stretch fabric
  • Avoid: Polyester or less breathable fabrics

See Bethany with her daughters modeling their new masks:

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Skin Diaries

Family Takes on Juvenile Dermatomyositis

When Juvenile Dermatomyositis (JDM) entered our lives, it hit us hard. JDM is a rare autoimmune disease in children that causes inflammation and swelling of the muscles and blood vessels under the skin. JDM makes exposure to UV rays more dangerous as the rays intensify rashes caused by the disease. About three in a million children in the US are diagnosed every year. My son Leo is one of them.

We started seeing symptoms of JDM this past summer. Leo first developed canker sores, then complained about soreness in his legs and a rash spread from his face to other parts of his body. As a parent, these symptoms were easy to associate with relatively harmless and easy to fix issues…growing pains, a change in laundry detergent or a reaction to chlorine. Todd is a nurse and didn’t see anything too alarming until the symptoms kept building.

Leo started having pain while eating and became fatigued with low-grade fevers. Thinking he may have a virus or mono, we brought him to our pediatrician who ran a series of labs. As we continued to rule out one thing after another, we moved to x-rays and ultrasounds. The results were unusual enough that our doctor immediately referred us to the University of California, San Francisco (UCSF).

Within a month, Leo couldn’t walk, stand up from a chair, get in and out of the car, or even get up and down from his bed. He had lost mobility and we were carrying our sweet seven-year-old boy everywhere. He slept most of the day and was severely dehydrated because he didn’t have the energy to eat or drink. Visually, his rashes were getting worse and he was sullen and pale. We were extremely worried and scared. Leo was our bounce-off-the-walls, sporty spice and his health was continuing to go downhill instead of improving.

A team of doctors including pediatricians, rheumatologists, infectious disease specialists, oncologists, pulmonologists and dermatologists at UCSF worked together for a solid week to discuss what could be wrong with Leo.

Then, July 31st, 2019 came, and we’ll never forget it. That day our team of doctors told us that our child, who had been perfectly healthy for seven years, suddenly had a rare and incurable disease. We were in complete shock. Nothing can prepare you for a diagnosis like that. Our lives changed the instant Juvenile Dermatomyositis was diagnosed.

As with many diseases, early detection and aggressive treatment lead to better outcomes. Leo started right away with high dose steroids, low dose chemotherapy and IVIG (Intravenous Immune Globulin). Because he was so young, we had to teach him how to swallow pills, take shots and tackle explaining the difference between a disease and a virus. We waded through our grief and started to adapt to his needs immediately.

Within two weeks, he was back in the hospital because the chemo drug, which we were administering at home, negatively affected his liver. Our rheumatologists recommended taking that out of his mix but adding two more serious chemo drugs which would be infusions. Unfortunately, these chemo drugs cannot be administered to anyone under 18 in our county. So every two weeks, Leo has had to travel five hours south to San Francisco for infusions.

Today, because of JDM, Leo’s immune system is constantly fighting his body’s own tissues and cells. He’s arthritic in 90% of his joints and his muscle weakness is obvious. He has the classic rash around his eyes (called heliotrope) and abnormal swelling and distortion of the blood vessels around the nail beds. JDM can involve organs also, and unfortunately, Leo’s team found nodules on his lungs making his diagnosis moderate or severe.

Leo not only suffers from extreme fatigue and pain from the disease but also a myriad of side effects from his treatments. He has mood swings, weight gain, indigestion, insomnia, anxiety, nausea and he, for now, he can’t participate in any competitive sports. Between the physical pain and the roller coaster of emotions, our seven-year-old is having to grasp a lot of things he never would have had to cope with otherwise. Leo is rebuilding his endurance and strength and we are hopeful that, with treatments and physical therapy, he will get back to living his best life.

Beyond caring for his body and heart, we worry about his future. The same medications that are fighting his JDM also may cause cataracts, calcifications, osteoporosis, early-onset diabetes, cancer, stunted growth, and infertility. One thing we can protect him against are UV rays which can make his physical symptoms SO much worse. We cover Leo in sunscreen and started using UPF 50+ clothing. We live on the coast and Leo loves the beach, so protecting him while trying to maintain his lifestyle is important.

Past, present and future, his battle is our battle and we face it together as a family. There is no rhyme or reason to this disease and there is no cause or cure, but that won’t get us down. JDM is going to realize we are a force to be reckoned with! Leo has taken it in stride and has taught us so much about strength, perseverance, resilience and bravery.

We are so thankful for our local pediatrician Dr. Sarah Poyen for taking us seriously and getting us out to a larger hospital quickly. And for Dr. Kim and Dr. Soulsby, our amazing rheumatologists, that are guiding us through the tunnel, UCSF Benioff Children’s Hospital and Infusion Center, and The Family House for being our home away from home.

JDM is considered an orphan disease, which means not enough of the population is diagnosed to interest the government to research a cure. All research is privately funded and spearheaded by families, providers, community members and CureJM. Leo is actively involved in a research study that is heavily funded by CureJM and CARRA (Childhood Arthritis and Rheumatology Research Alliance). We’re hopeful that this study will help researchers identify ways to detect, treat and prevent JDM.

Our request as parents and as part of the greater JDM community is for you to share Leo’s story and educate others about this rare disease. And if you’re able, please consider donating to www.curejm.com to help us find a cure for Leo and many other children like him!

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Live Wisely Wear to Where

When to Wear a Sun Hat

Some of the most common places to be diagnosed with skin cancer – face, scalp, and ears – are located on your head… So choosing to wear a hat, especially one that is UPF 50+, just makes sense. The bigger challenge is trying to figure out when it is most crucial to have one on your noggin.

Reading a Good Book on the Beach

Whether it’s the ocean or poolside, having your favorite read
teamed up with a wide-brim hat is the duo you’ve been looking for. Spend more
time getting into that New York Bestseller and less time worried about the sun.

Coolibar Choice:

Hitting Up the Country Club

Have a membership at the local country club? Hours of direct sunlight on the golf course or tennis courts adds up and can be detrimental to your skin health. With the reapplication of sunscreen and a good hat on your head, you should comfortably be able to play 18 holes unscathed by the sun.

Coolibar Choice:

Fishing on the Lake

Summer is all about going up to the cabin, taking the boat
out and taking advantage of the good weather. For the big fishers out there
that just love being on the water and lose track of time easily, a hat with
extended coverage is vital because of the straight hours of direct sunlight and
the UV rays reflecting off the water. 

Coolibar Choice:

Running Errands Around Town

It’s your day off and it has to be spent buying groceries,
stopping by the bank, picking up the kids from school, going to the dentist’s
office and countless other things on your agenda. With all that scheduled for
your day, the accumulated UV rays add up quickly!

Pro tip: Keep a packable sun hat in your car or purse to always be ready for the sun.

Coolibar Choice:

Paired with the Perfect Outfit

A very underrated piece of an outfit that can really bring the whole look together is a well-styled hat. There may be no better time to have a perfectly selected wide-brim hat than for a Kentucky Derby party or event!

If you are struggling to find the right one, our team has designed a guide to help you find the perfect hat that works with your face shape.

Coolibar Choice:

Taking the Dog for a Walk

Our furry companions need their exercise too, it’s an important part of being a pet owner. With that being said, typically, you’re taking the dog out for a little stroll during the day while UV rays are present. It shouldn’t be a very time-intensive chore to get prepped for a walk! Simply apply a little SPF 30+ sunscreen and a hat… and voilà!

Coolibar Choice:

Enjoying the Great Outdoors

This one is for you adventure seekers that love camping in the woods and exploring nature! If you’re the weekend warrior that joins every hiking group they can, you need a great sun hat paired with some long sleeves.

Coolibar Choice:

Regardless of the activity, you’re doing and the style you choose, make sure to get in the habit of wearing sunscreen on your face with your hat to help lessen the chances of extreme sun exposure even when wearing a hat .

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Live Wisely

6 Easy New Year’s Resolutions You Must Try this Year

New year, new you. It’s a phrase we are all very familiar with and tell ourselves every 12 months. In a recent study, they found that approximately 80% of resolutions fail by February.

The secret to successful resolutions is keeping them realistic and attainable in a way that you feel progress from the start. Go for the win by focusing on things that give you emotional satisfaction as well as outward results. So, here are 6 little things you can easily do to feel good and realign goals you’ve been carrying for the last few days, weeks or perhaps even years. But, this year is different because it is YOUR year.

1. Get Outside

Almost every year, it seems like people sign up for a new spin class or a personal trainer at their local gym. They dedicate themselves to it for two months and burn out. Don’t worry about joining a club, just get outside. It can be as simple as going on a 30-minute walk before you start your day to going on a quick bike ride around the neighborhood in the afternoon. The fresh air will recharge you! Don’t sacrifice your skin though. Keep sun-safe and cool in a hat and UPF 50+ clothes made for fitness, like those that have cooling technology built in.

2. Sign Up for a Lesson or Class

Never too old to learn a few new tricks! An always popular choice is taking up golf or tennis. Just make sure to cover up for all that added sun exposure! Other ideas could be learning a new language or picking up a new computer skill. You’ll never regret owning an abundance of diverse skills later in life.

3. Rekindle Important Relationships

Life gets crazy. It’s inevitable. But NEVER lose sight of, or become too busy for, your friends and family. Make one phone call a week with a distant friend; simply inviting family over once a month for dinner (delivered if you’re not into cooking); that’s all it takes. once a week, to simply inviting family over once a month for dinner, that’s all it takes, and it goes a very long way. At the end of the day, the relationships we have are more valuable than anything imaginable.

4. Take Care of Your Skin

This is one we are really challenging you to this upcoming year. How often are you consciously thinking about the amount of sun exposure you are receiving every day? Whether you are in the car or at work, there are so many sneaky ways that we are exposing ourselves to UV rays! A good habit to start as soon as possible is applying a broad-spectrum SPF of at least 30 daily. Afraid of needing to reapply or having an oily feel to your skin? Choose UPF 50+ clothing that blocks out 98% of UV rays and never washes out!

5. Indulge Once a Week

A classic resolution, like dieting, can be extremely tricky, hence the reason it is a reoccurring challenge. One of the secrets is balance and easing into it. Start by dedicating 5 days a week of healthier food choices and then rewarding yourself with a cheat meal. If you become too obsessed with it right away you will become miserable, and nobody wants to associate food with misery. If you are struggling with figuring out where to start, here’s a great beginners guide to understanding food.

6. Be Kind to Yourself

Be good to yourself. Do nice things for yourself. Reward yourself for all your hard work. We can get so caught up in our jobs or daily chores and forget to take care of ourselves. Need a spa day? Have it. You’ve been looking at that new bike for a while? Get it. That tropical vacation you’ve had your eye on? Book it. Try and do one thing completely for yourself at least once a week.

New Year’s is an end and a beginning. It allows you to turn the page and focus on the new goals you’ve just created for yourself. But remember, all of this depends on you and how ready you are to commit. Make the most of 2020. We are all rooting for you!

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