The Truth 365

Tom won’t stop fighting so neither will we!

Ask any child in Northern Virginia who is fighting or who has fought cancer, “Who is Tattoo Tom?” and they will likely crack the widest grin you’ve ever seen. “Tattoo” Tom Mitchell is the founder of the Stillbrave Childhood Cancer Foundation whose mission is to provide non-medical, supportive care to children with cancer and their families. Their mission is to help families of children battling cancer in any way that Stillbrave can:

While they are fighting the toughest war of their lives, we will fight their lesser battles, so they don’t have to. We are not only here to support children with cancer; we are here to help ease the burden of the family and the caregivers who are fighting battles of their own.

Stillbrave does everything from helping families pay bills, to proviTomStillbraveding gas and grocery cards, to helping with household chores like yard work and repairs, and even babysitting. But something Stillbrave gives that is not mentioned in the list on their website is Tom’s heart. Yes, this man who may intimidate most by his burly, tattooed appearance, is actually a man with a gigantic and giving heart. He sits with children for hours at the hospital. He dances with them, and plays games with them. He holds their hands when they are scared. He holds their little bodies when they wake up from procedures and they ask for Tom instead of mom. Tom gives of himself to these kids in such a beautiful way. Tom knows first hand what it’s like to have a child battle cancer: Tom lost his daughter, Shayla, to cancer when she was just 16 years old. As Tom gives of his huge heart to these little ones, they help to fill it with more love. But his heart is clearly battle torn. There are holes that will never be filled — there is a huge hole left when he lost his daughter Shayla. And there is a new hole each time Tom loses another one of the kids he loves: Gabby, Lily and Mathias to name just three from a list that should never even have one name on it.

Raising money for non-profits, especially in a down economy, you have to be creative. In 2013, Tom ran in the Northface Endurance Challenge Gore-Tex 50 miler and sought donations for Stillbrave. Then, in 2014, he up’d the ante and ran in the Mohican Trail 100. Yes, 100 miles. On his feet. To get through the race, Tom dedicated each mile to a child who is fighting, has fought, or who lost their battle to cancer. Mile 100 was dedicated to Tom’s daughter Shayla. “I am Stillbrave for her,” Tom told WJLA news last year during the Mohican 100. This year, Tom will be running in the Tahoe 200 mile ultra marathon. Two hundred miles is the approximate distance from DC to Virginia Beach! Tom is again dedicating each mile to a child who has lost, is fighting or who has fought cancer. And again, he is seeking donations for Stillbrave by running this race. Tom is asking for Mile Sponsors – individuals and companies who will step forward and donate $1,000 to sponsor a mile in honor or memory of one of the children for whom Tom is running. As of August 1st, Tom has raised $75,542 of his $200,000 goal. [Click here to sponsor a mile!]

Salon Khouri is sponsoring mile 65 in honor of Kate Rhoades, who was diagnosed with acute lymphoblastic leukemia when she was just two years old. I’ve known Kate’s mom, Lindsay, for 17 years; we met while working at a non-profit in Old Town. Jonathan and I had our third child just a few months before Lindsay gave birth to Kate. I won’t forget the day I learned of Kate’s diagnosis with leukemia in August of 2013. Tears streamed down my face as I knew all too well the long and frightening road ahead of them. Kate’s chemo began immediately — in August of 2013 — and will be ending in six weeks from now … take a moment to let that timeframe sink in. We knew it would be a long and difficult road for Kate and her parents as Jonathan and I had unfortunately already experienced friends whose children were diagnosed with cancer. And yet, organizations like the National Cancer Institute appropriate only 4% of their research dollars to childhood cancer because it’s “rare.” You can read more about the cold, hard facts of childhood cancer here.

We are so very passionate about these kids. We pray that we will soon see a cure. And we will continue to do what we can to help. The children Tom is running for continue to inspire us. People like Tom inspire us. They will keep fighting, and so will we!

To additionally help Stillbrave, we will be collecting gas, grocery and restaurant cards during the month of August. The next time you are in the checkout line, grab a giftcard to bring in! To thank you for your help, everyone bringing in a gift card for Stillbrave will be entered into a drawing to win a 60 minute Salon Khouri Signature Facial.

Why we will continue to #GoGold every September

ErinAndAmanda

Erin Griffin and Gabriella Miller at CureFest in September 2013. Gabby succumbed to her tumor in October 26, 2013, and Erin to hers on September 1, 2014.

Do you realize that, in the last 20 years, there have been only two drugs approved by the FDA for childhood cancers that were initially studied in children? That’s out of 146 drugs approved drugs for cancer treatments in the last twenty years. In fact, many do not realize that cancer is the leading cause of death by disease in children and adolescents in the United States. (Source: National Cancer Institute).

Last night, Erin Griffin died from DIPG, the brain tumor she had been battling for two and a half years. Erin was just 14 years old when she died. You can see Erin pictured to the right with her friend, Gabby, who also died from DIPG in October 2013 when she was just 10 years old. Two sweet girls, taken far too soon because there is simply not enough research dollars going toward childhood cancers. Did you know that only 4% of the National Cancer Institute’s Budget for cancer research is allocated toward childhood cancer research? And, if you think that these kids get the short end of the stick because childhood cancers are rare, think again. Childhood cancers have risen 29% in the past twenty years. (Source: National Cancer Institute). Since we were made aware of childhood cancer in 2007, we’ve learned personally that childhood cancer is not rare — just read our blog post from September of 2013, childhood cancer is not rare.

Our apologies if this post isn’t pretty, but childhood cancer is far from pretty. And, until that changes, we will continue to #GoGold in September, sharing stories about these children that have touched our hearts so dearly. We will continue to be a voice for these children because the majority of the people doing so currently are the family members fighting for their kid’s life, or have lost their child to cancer, and that just doesn’t seem fair. Unfortunately, we don’t know of a way to make it pretty. We can only make it a journey of hope and to celebrate the wins in this arena with triumphant celebration! Learning of a “No Evidence of Disease” (NED) in one of these children fills us with so much hope and excitement that we are giddy for days. We will continue to pray for these children, and to share the facts about childhood cancer, until a cure is found.

Here’s what we are doing to help, and we will share a few ways you can help below!

  1. We will be donating $1 from every haircut in September to the childhood cancer dream team through The Truth 365.
  2. Again, this year, instead of a cut-a-thon which only lasts one day, we wanted to do something that people could participate the entire month. Similar to the Pink
    Gold Hair for a Cure

    Gold Hair for a Cure

    Hair for Hope campaign, we are launching a Gold Hair for a Cure campaign. Come and have a SO.CAP gold extension added to your locks for just $10 and we will donate 100% of our profit to finding a cure for pediatric cancer. When people ask why you have a gold hair extension, tell them about Pediatric Cancer Action Month! (And, we have contacted SO.CAP USA to see if they can make this a national campaign. We’ll keep you posted!)

  3. We will be asking every person checking out if they would like to add $1, $3 or $5 to their ticket to be donated to pediatric cancer research funding.
  4. We will be supporting Camp Sunshine in January 2015, and a bunch of us from the salon will be taking the Virginia Polar Dip to support Camp Sunshine. More details to come on that later 🙂

Here’s what you can do:

  1. Participate in CureFest in Washington DC on September 21, 2014. The festival is FREE and the walk is just $20. We will be there again this year showing people how easy a Crazy Hair Day for Kids’ Cancer fundraisers are!
  2. Take a Crazy Hair Day for Kids’ Cancer flyer to your school and have your school host a no-cost fundraiser. It’s so very simple. Kids get to wear their hair crazy for a day and they bring in a small donation. We have a flyer for preschool and elementary schools, and one for middle and high schools. When other kids ask why their hair is ‘crazy’ for the day, it’s a *great* opportunity for these kids to share why. Don’t have kids in school? Take a flyer to work and hang it in your office kitchen. And if you are not a client of ours, take the fliers to your salon. Share with your stylist or the owner of that salon. Get them involved in promoting this amazingly easy fundraiser.
  3. Donate to any one of the many organizations helping kids battling cancer. Here are just a few great ones we know about or have donated to in the past: The Band of Parents, The Isabella Santos Foundation, Journey 4 A Cure, Arms Wide Open Childhood Cancer Foundation, Stillbrave Childhood Cancer Foundation and the DC Candlelighters. Please do not think any amount is too small. If everyone gave $1, these organizations and the children they serve would benefit tremendously!
  4. Participate in a walk in Nova, at CureFest, or a run, or join Team Salon Khouri on our Virginia Polar dip. Come on, it will be fun — submerging into a little freezing water for less than one minute of your life for these kids sounds like a great way to have fun and spread awareness.
  5. Get involved through a social media outreach campaign through The Truth 365.
  6. Watch the Truth 365 Documentary to learn more about the state of pediatric cancer.
  7. Write your Congressperson, and ask him or her to sign The Pledge. We need more than 4% of federal cancer research dollars going toward pediatric cancers.

Hopefully one of these will speak to you. These kids do not have a voice. They are busy fighting for their lives. Be their voice, take action for them.