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This is Brave

This is Brave: We Can Be Brave Together

Melanoma, what an ugly word. The first time I heard it, I was six.  I could barely say it. I wish the story ended there, but it was only the beginning.  Graham, my brother, was diagnosed in 2013 with stage III melanoma on his left arm.  When I was growing up I knew Graham was different because he had melanoma, but I never knew that he could die.

Usually when bad things happen in families, emotions take over. The emotion we all wanted to have was bravery but that is hard to do when you’re scared. But we were scared together, and that gave us strength.

I watched Graham go through lots of surgeries, and painful tests, and it was hard to think about what might happen if his melanoma came back. We had to be brave together. As I got older, I learned more about melanoma, and that this type of skin cancer can be deadly.  Graham’s cancer did not come from a bad sunburn or being out in the sun too much, his was genetic, but most are not like Graham’s.

Once, in 5th grade, I had to write a story about my hero, I picked Graham.  I did a quick google search about pediatric melanoma, and Graham’s story was the first thing that came up.  I remember sitting in the library crying.  It was at that very moment that I realized exactly what this all meant.  I took a big breath and thought to myself, I have to be brave for Graham.  I can’t do much to change his situation or find a cure, but I can be brave.

Advocacy is one way I can do something to try to help. I try to tell people to wear sunscreen and stop tanning.  I am in middle school, so it is hard to get people to listen but if someone in their family had melanoma they would understand the risk. I tell people about skin checks and changing moles. We raise money for research, we go to Washington DC to ask Congress for research funding, we teach sun safety and we share stories. The more I can share, the more I hope I will prevent someone from going through what he has. Graham is not only my brother, he is my friend. I cannot imagine life without him. I wish science would find a cure. Until that happens, I will continue to brave, because sometimes that is all you can do.

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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: The Inspiration Behind the Campaign

In 2018, we were introduced to a young girl who inspired our entire organization to “Be Brave”. When her brother Graham was ready to give up after five years of treatments and surgeries for his pediatric melanoma, Quinn reminded him to be brave. He could do it!

Quinn and Graham’s entire family continues to show us, and everyone in the greater melanoma and skin cancer community, what it means to “Be Brave”. Since Graham was first diagnosed, they continue to advocate for education, prevention and research. In fact, they got their start by raising more than $34,000 for cancer research by selling bracelets, which got the attention of President Barack Obama. To learn more about their work visit: www.facebook.com/Grahams-Gift.

This April, Quinn, her mother Cheryl, stepfather Bob, and brothers Graham and Charlie, stopped by the Coolibar offices to talk about the past year and what it has meant to them to “Be Brave”.

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Parenting School sun safety SunAWARE

Elementary Schools Consider No Hat No Play Policy

Does your child wear a hat on the playground during recess? If not, your child is not the only one. Many elementary schools in the U.S. ban students from wearing hats on school grounds. As a result, children are left exposed to the sun during peak ultraviolet radiation hours between 10 a.m. and 4 p.m.

In Australia, schools and daycares have a strict “no hat, no play” policy, meaning children cannot go outside to play unless they’ve slapped on a hat (a wide brim or legionnaire hat). Evidence suggests that childhood exposure to UV radiation from the sun or tanning beds contributes significantly to the development of skin cancer.  As a result of the rise in skin cancer rates, in 1998 the Cancer Council Australia launched the national SunSmart Schools program to promote good sun protection habits in childhood.

The Slip Slop Slap Seek and Slide campaign in Australia started by the Cancer Council Australia in 1980, originally just Slip Slop Slap until 2007, is the core message of the SunSmart Program. Slip on a t-shirt, slop on some sunscreen, slap on a hat, seek shade and slide on sunglasses is the message they remind children and parents of through public service announcements played on television and in classrooms. The hats children wear are also not ordinary baseball caps as they offer very little protection, but rather wide brim hats or legionnaire hats. The SunSmart program now has over 2,500 schools and 3,500 childcare centers participating across the country. This campaign is widely credited as playing a key role in the dramatic shift in sun protection attitudes and behavior over the past two decades in Australia.

Australian SunSmart Schools and Day Cares have a written sun protection policy meeting minimum standards relating to curriculum, behavior and the environment. They also work to increase shade and reschedule outdoor activities to lower UV times of the day. Finally, they teach children about sun protection. These are all simple standards American schools can replicate.

Hats can be provided inexpensively to schools through fundraising or discount programs such as the Coolibar School Sun Hat Program, which offers a 50% discount to schools purchasing children’s hats. As an educational resource, the SunAWARE acronym is available in the U.S. to help educate children about sun protection and skin cancer prevention, in addition to books such as “SunAWARE Hits a Home Run”. Our kids are outdoors when UV is strongest, and while the damage may not appear initially, there is much greater chance severe skin damage will emerge down the road.

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Educate Others Events Inside Coolibar

Help Us Give the Gift of Sun Protection Education

Sun protective habits developed in childhood promote a lifetime of healthy skin. Giving a child the gift of sun protection education is as easy as ‘liking’ the Coolibar Sun Protective Clothing Facebook page. For every Coolibar Facebook page ‘like’ (a.k.a. fan) we receive in December, we’ll donate a SunAWARE book to the Children’s Melanoma Prevention Foundation. 

‘Like’ us now to give a child a SunAWARE children’s book and help support our cause! Just click the ‘like’ button below.

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Apply Sunscreen Expert Rx Parenting Sunscreens and Lotions

Sunscreen Tips for Toddlers

Summer is the perfect time for the pool, playgrounds and sun-filled activities. Fortunately, with good sun habits, children can enjoy sunny days outside without risking their health. Just one blistering sunburn in childhood more than doubles your chances of developing melanoma later in life. And unfortunately, 54 percent of children burn or tan in their second summer, and 22 percent burn in their first, according to the Skin Cancer Foundation.

Board certified Pediatric Dermatologist Dr. Manju George specializes in personalized care for infants, children and young adults.  She understands that kids have unique dermatologic requirement because “children are not just small adults.”  Dr. George offers advice on how to keep your kiddies protected from the sun’s rays by knowing what to look for in sunscreen, how to use it, and how to add fun to habits so that your kids will enjoy sunscreen time.

Dr. George’s Sunscreen Tips

1. LOOK AT THE LABEL. A lot of parents assume, well, the higher the SPF, it must be better. What you really want to look for is the ingredients in your sunscreen. What I recommend is zinc oxide or titanium dioxide [These are physical sunscreen ingredients.] Choose an SPF of 30 that’s labeled broad spectrum. That means it protects against both UVA and UVB rays.

2. AVOID SPRAY ON SUNSCREENS. The major drawback of an aerosol sunscreen is that it could get into the eyes or inhaled by a child, and we really don’t have the long-term data on those effects.

3. USE GENEROUS AMOUNTS ALMOST EVERYWHERE. One of the biggest mistakes parents make is number one: not applying enough sunscreen. Apply sunscreen 30 minutes before leaving the house, no matter what the weather. Even on a cloudy day, you still get 80 percent UV exposure. Start with the neck down, make sure you cover thick and evenly on all areas of the body, not forgetting the ears, backs of the hands, crease of the neck, underarms, between the fingers, underneath the bathing suit. After you’ve covered those major areas, you should do the face last.

4. REMEMBER THE LIPS AND SCALP. The lips need protection as well. Another tip that I give parents is to put it in his or her part line. But one of the best ways to protect scalps is to actually purchase a hat.

5. MAKE APPLYING SUNSCREEN FUN! I like to call it your magic cream or magic lotion. Children like making it special. Don’t make it a chore. One mom actually told me she uses a paintbrush and has the child paint the sunscreen on themselves. Another thing that children really like to do, is they like to apply it on you, so let them apply it on Mom or Dad. They tend to be much more receptive when you do things together and you make it a fun activity for them.

Parents, it’s up to you to keep your little ones protected from the sun, so keep Dr. George’s advice in mind during outdoor playtime. To best protect your child from the sun, cover them with a hat, pants and long sleeve shirt, apply sunscreen every two hours or after sweating or swimming and limit time outside when the sun is strongest (between 10 a.m. and 4 p.m.). Have fun making fun with sunscreen!

Disclaimer: The information provided by Coolibar and its contributors is general skin care information and should not be a substitute for obtaining medical advice from your physician and is not intended to diagnose or treat any specific medical problem.

Dr. Manju George - Pediatric Dermatology West Palm Beach
Dr. Manju George - Pediatric Dermatology West Palm Beach, FL

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New Products Parenting SunAWARE Wear Sun Protection

Sun Safety for Junior Sailors

Danger at Graves Light

Adult sailors and junior sailors alike must be able to swim, wear a personal floatation device, and stay calm in an emergency. However, sun safety is often forgotten or left out when teaching children important sailing safety basics. 

The reflection of the sun off the water represents a significant skin cancer risk to sailors. One person dies every hour from skin cancer in the United States and melanoma is responsible for 90% of these deaths. Melanoma is associated with both childhood sunburns and recreational boating, which emphasizes the need for children interested in sailing to be educated about protecting their skin from the sun. 

This is why Maryellen Maguire-Eisen (Children’s Melanoma Prevention Foundation Executive Director) and Mary Mills Barrow (SunAWARE Executive Director) decided to write “Danger At Graves Light”.  “The book will empower adolescent sailors with current and reliable information about the dangers of overexposure to ultraviolet radiation on the water and will offer five easy action steps for sun protection,” says Barrow. 

The sun protection steps are described by using the SunAWARE acronym, which provides a useful and memorable way to get across all important information about sun safety. 

 

 

 

 

 

 

 

 

 

More about Danger At Graves Light: 

“Danger At Graves Light” tells the story of five young sailors who don’t believe that bad things can happen on a calm, sunny day on the water. When their grandmother tells them the amazing story of a sunny day rescue at Graves Light, they finally understand that the sun can be just as dangerous as a storm at sea. 

“Danger at Graves Light” has been endorsed by US SAILING and features a personal introduction by Susan Epstein, US SAILING Director.  The book hopes to raise awareness of the need for sun safety and aid US SAILING in developing a skin cancer prevention education campaign.

If you are interested in more information or in obtaining copies of the book, contact CMPF or SunAWARE.

“Danger At Graves Light” can also be purchased at Coolibar. 

 

MaryEllen Maguire-Eisen at the Release of "Danger At Graves Light" on Don't Fry Day 2011
Susan Epstein (US Sailing), Adam Lipson (Community Boating Inc.), Charlie Zechel (Community Boating Inc.), Maryellen Maguire-Eisen (CMPF) and Mimi Svenning (CMPF) at book release on Don't Fry Day 2011

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Success Stories Wellness Warriors

A 6-Year-Old Melanoma Hero

It’s not fair that anyone should have to deal with something as life altering as melanoma, especially a 6-year-old. Rachael was only 5 when she was diagnosed with stage III melanoma on September 10, 2009. After a year of battling and conquering melanoma, Rachael and her family know all too well why sun protection is important.

It all started with a little mole on her left arm that Rachael complained hurt. Rachael’s mom, Danielle, took her to the doctor thinking the mole was nothing, but better be on the safe-side. Once at the Doctor’s office, the physician removed the mole and everything was assumed to be okay. While this spot was not initially diagnosed as stage III melanoma, after the first biopsy, doctors knew it was something. It was confirmed after Rachael had a wide local excision on her arm three inches long and a biopsy of the sentinel lymph node, where they removed a few lymph nodes to look for cancer cells. 

While the typical survival rate for stage III melanoma is 60 percent, Rachael was in a rare, but good situation for the circumstances. Doctors told Danielle that children under the age of 10 diagnosed with malignant melanoma have a high survival rate, but further action was necessary. The treatment Doctors recommended for Rachael has been used on less than 100 children in Rachael’s situation and all survived. Her treatment never incorporated chemo, but rather surgery (to remove all lymph nodes under her left arm), four weeks of interferon given daily through an IV using a picc line (which can make the patient ill), weekly injections through the picc line for 48 weeks, and what will be years of follow-up tests. Rachael received a bead through the Beads of Courage program for every treatment she went through. By the end of the year, her necklace of beads was worth more than a thousand words.

Rachael's Beads of Courage

Fortunately, Rachael’s cancer was caught early. She is living healthfully and cancer-free now among her parents and brother; however, her journey to wellbeing was not an easy one, and the experience has forever changed her life as well as her family. Danielle says, “A year into this, how has life changed for us? I think about the sun every single day… I no longer think 15 minutes without sunscreen is okay. Rachael wears a hat every day.  She wears it in the pool.  She wears it to the beach.  She wears it in the shade.” Danielle does this with great reason too. According to the Skin Cancer Foundation, about 65 percent of melanoma cases can be attributed to ultraviolet radiation from the sun. Rachael and those surrounding her are now all practicing sun-safe habits every day under the sun.

Danielle’s Blog chronicles their family’s journey through pediatric melanoma: http://iloveyoumorethanmost.blogspot.com

Organizations such as the Children’s Melanoma Prevention Foundation aggressively focus attention on the need to teach “prevention” and “sun protection” to children, and their caregivers. Learn more about this program and tools you can use to teach future generations how to be SunAWARE.

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