UNC Healthcare Patient Spotlight Video on Ashley’s Journey

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With immense pride & excitement, I think I can now officially share the UNC Patient Spotlight video that launched today about Ashley’s journey, created by Nathan Clendenin of the StoryDriven Media Group. Make sure to watch to the very end for a funny part during the credits. ❤️

Link to the video:  http://youtu.be/EmStjxPqozs

Hyundai Hope On Wheels National Youth Ambassador 2014-2015

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WATCH ASHLEY’S INTRODUCTORY VIDEO: http://youtu.be/VqEGht7Fsk0

HYUNDAI HOPE ON WHEELS ANNOUNCES 2014-2015 NATIONAL YOUTH AMBASSADORS

Ashley Burnette and Kenny Thomas Join Hyundai Hope On Wheels in its 16th Year to Help Raise Awareness for Childhood Cancer

NEW YORK – April 16, 2014 – Hyundai Hope On Wheels®, a nonprofit organization dedicated to helping kids fight cancer, today announced that Ashley Burnette and Kenny Thomas are named the 2014-2015 National Youth Ambassadors for the organization. Ashley and Kenny will join Hope On Wheels in its 16th year of fighting childhood cancer. More details about the 2014 Hope On Wheels program will be announced tomorrow at the Jacob K. Javits Center in New York City, during the New York International Auto Show.

Ashley, a 10-year-old from North Carolina, and Kenny, a nine-year-old from Southern California are both cancer survivors and were selected from a nationwide search. The Hyundai Hope On Wheels National Youth Ambassadors serve as youth spokespersons for the organization over the next two years. Together, they will travel the country visiting children’s hospitals and sharing their message of hope with other children with cancer and their families. Their personal stories are also included online, as a part of the Hope On Wheels social media community, and printed collateral distributed at US Hyundai dealerships, all of which are designed to increase awareness and invite others to join the fight. This year’s theme for the organization is “Just One Wish.” This theme is based on the primary goal of Hope On Wheels, to end childhood cancer.

“Hyundai and its dealers are proud to have Ashley and Kenny join us as the National Youth Ambassadors for the next two years,” said Dave Zuchowski, President and CEO, Hyundai Motor America. “Their individual strength and incredible determination during their own battles with cancer are truly an inspiration. Each brings a compelling story to share with other families who are impacted by the disease. Together, they embody a message of Hope On Wheels, that this is a fight that we can and will win.”

About Ashley Burnette – Hope On Wheels National Youth Ambassador
At age seven, Ashley was excited to be starting the second grade. No long before the start of the new school year, her parents noticed that she had developed a limp and a persistent black eye. After a check-up visit to her doctor, Ashley was diagnosed with Stage IV Neuroblastoma and immediately began treatment. Several months later she developed Post-Transplant Lymphoproliferative Disorder/Non-Hodgkin’s Lymphoma. Over the next two years, she endured multiple rounds of chemo, a stem cell transplant, care at three different children’s hospitals, and countless other procedures. In fact, she missed the entire year of school during treatment. Today, Ashley has been cancer-free since August 2012. The now 10 year old is back to hula hooping, reading, playing with her sister and doing other activities that she loves.

“I am honored to have been chosen as a National Youth Ambassador for Hyundai Hope On Wheels”, said Ashley Burnette. “My fight with cancer made me more determined to help others. I am excited to travel the country with this great organization and share my story with children who are fighting cancer. My goal is to insure that kids with cancer know that they are not alone.”

About Kenny Thomas – Hope On Wheels National Youth Ambassador
Kenny Thomas is an energetic nine-year old, who loves playing basketball and enjoys spending time with his friends. He says his family inspires him to be the best he can be. Shortly after his eighth birthday, Kenny was diagnosed with cancer. His parents noticed the then third-grader had experienced weight loss, persistent coughing and night sweats, which eventually led to an emergency room visit. A chest x-ray revealed the stage three cancerous mass in Kenny’s chest. Kenny spent the following six days in pediatric ICU, where his life was saved. A Non-Hodgkin’s Lymphoma was treated, with an aggressive therapy at UCLA Medical Center. Kenny has been in remission since December 2012 and is back to playing with his friends. He missed the entire third grade, lost his hair, and suffered rounds of treatments. But, he feels blessed by his experience and those who took part in his cure.

“Kids should not have to know anything about cancer. It is not a disease that we want to have. Even though I got used to the needle pokes, fighting cancer meant that I had to be strong for myself and those who care about me,” says Kenny Thomas. “I am so excited to be named a National Youth Ambassador for Hyundai Hope On Wheels. I want to give other kids the courage to get through the treatment. It takes courage, and I know every kid has this courage in their soul.”

Hyundai Hope On Wheels 2014 program
2014 marks the 16th year of Hyundai Hope On Wheels and its fight against childhood cancer. A 501(c)(3) nonprofit organization, Hope On Wheels is among the leading funders of pediatric cancer research in the U.S. Over $86 million has been funded for research by Hope On Wheels since its inception. The organization is committed to funding innovative research, creating public awareness and stimulating social conversation on the issue.

“We have one mission at Hope On Wheels: to end pediatric cancer,” says 2014 Hope On Wheels Board Chairman, Mickey Pong. “As this year’s board chair, I and the Hyundai dealers of America are proud to welcome Ashley and Kenny to our team, as we fight to end this disease. These kids represent children all across the country and their battles with pediatric cancer. They represent our collective future. We stand beside them and are dedicated to this fight until there is a cure.”

For more information about Hyundai Hope On Wheels, please visit http://www.HyundaiHopeOnWheels.org.
You can also follow us on Facebook and Twitter, by visiting facebook.com/HyundaiHopeOnWheels or twitter.com/HopeOnWheels. You may also subscribe to receive our monthly newsletter and learn more about our cause.

HYUNDAI HOPE ON WHEELS
Hyundai Hope On Wheels® is a 501(c)(3) nonprofit organization that is committed to finding a cure for childhood cancer. Launched in 1998, Hyundai Hope On Wheels provides grants to eligible institutions nationwide that are pursuing life-saving research and innovative treatments for the disease. Primary funding for Hyundai Hope On Wheels comes from Hyundai Motor America and its more than 800 U.S. dealers. At the end of its 16th year, Hyundai Hope On Wheels will have awarded more than $86 million towards childhood cancer research in pursuit of a cure.

HYUNDAI MOTOR AMERICA
Hyundai Motor America, headquartered in Fountain Valley, Calif., is a subsidiary of Hyundai Motor Co. of Korea. Hyundai vehicles are distributed throughout the United States by Hyundai Motor America and are sold and serviced through more than 820 dealerships nationwide. All Hyundai vehicles sold in the U.S. are covered by the Hyundai Assurance program, which includes the 5-year/60,000-mile fully transferable new vehicle limited warranty, Hyundai’s 10-year/100,000-mile powertrain limited warranty, and five years of complimentary Roadside Assistance. Hyundai Assurance includes Assurance Connected Care that provides owners of Hyundai models equipped with the Hyundai Blue Link telematics system with proactive safety and car care services complimentary for three years. These services include Automatic Collision Notification, Enhanced Roadside Assistance, Vehicle Diagnostic Alert, Monthly Vehicle Health Report and in-vehicle service scheduling.

For more details on Hyundai Assurance, please visit www.HyundaiAssurance.com
Please visit our media website at www.hyundainews.com and our blog at www.hyundailikesunday.com
Hyundai Motor America on Twitter | YouTube | Facebook

Reflections & Missions

Almost three years ago, when I decided to switch from CaringBridge and create this website to keep our friends and supporters updated on Ashley’s journey, I remember spending a good amount of time trying to figure out an “appropriate” name for it. At that time, Ashley still had a large amount of Neuroblastoma in her body that we needed to fight; we had evidence of Non-Hodgkin’s lymphoma show up in her body a few months prior, which just added to our battles and our worries; she was just starting in her role as the Patient Ambassador of the NC Children’s Hospital, which was an exciting and new experience for her; she flew to NYC to meet her idol “at the time” Justin Bieber; our family traveled to Disney for her Make-A-Wish Trip to help take our minds off of “the cancer world” for a week…..needless to say, it was the start of some crazy times, but some scary times as well, because I knew in order to fight these two cancers still permeating my baby’s body, we still had a lot of work ahead of us. Little did I know at that time how “appropriate” the name “Our Adventures with Ashley” would be!

Since August 2010 when Ashley was diagnosed with cancer, our family has been introduced to a world that sadly we previously were “blindly” unfamiliar with. Prior to that day, I personally had only met one other child that was battling cancer. I had no idea how outrageously common the occurrences of pediatric cancer were in today’s world. I had no idea that more children are lost to cancer in the U.S. than any other disease and that worldwide, a child is diagnosed with cancer EVERY 3 MINUTES!!! I also had no knowledge that childhood cancers only received around 4% of the US federal funding for research to find a cure to save our kids.

I remember many times, as I sat beside Ashley’s hospital bed watching her sleep, thinking to myself…“When this tornado that we’re living in goes away, I hope that we, as a family, can DO SOMETHING to change things.” I was always so in awe of all of the families who were busy building foundations and coordinating events to help fund pediatric cancer research, who were spending their time truly “making a difference” in the world of childhood cancer. I wanted to be that family, but at the time, I knew that my focus needed to be on curing Ashley and “that time” would come.

When I reminisce about “Our Adventures with Ashley” over the last few years, it makes me want to smile and cry all at once. The smiles come when I recognize how our family is playing more of a part in helping to bring awareness to pediatric cancer and also when I see how Ashley has grown into a someone who sees the value in sharing her story and wants to bring change as well. However, the number of friends Ashley has lost during this time and the insane number of kids’ journeys I have followed who ended up losing their battles with cancer are just WAY too many. Ashley, at her young age, has had to endure saying goodbye to too many fellow cancer fighters, which is just plain unacceptable. A cure NEEDS to be found and needs to be found SOON!!

Over the past three months, since our last update here on the blog, we’ve been living in a whirlwind of events revolving around the world of pediatric cancer and it’s been amazing for all of us to be a part of the action!!  I tend to put more things on Facebook these days, so for those of you not on FB, here is a summary of some of our “Adventures” since January:

  • First of all, and most importantly, Ash had her 21-month trial scans a couple of weeks ago and she is still CANCER FREE!!!  Hallelujah!!!
  • Ashley and I shared her Make-A-Wish story at two different events to help bring in more funds for the Make-A-Wish Foundation to in turn bring to life more wishes for kids in NC
  • Ashley was asked by the baseball team of Heritage High School to throw out the first pitch at their season opener to help bring awareness to their participation with the St. Baldrick’s Foundation, one of the country’s largest charities supporting pediatric cancer research. And then one of their rivals, Millbrook High School, joined in and asked her to participate in one of their games. When the two high schools had their first big game against each other, played in the Carolina Mudcats’ 5 County Stadium, they again asked Ashley to participate by throwing out the first pitch.  She’s built up quite an arm!!!
  • We watched three incredible boys (Anderson, Luke & Steve) fundraise and then shave their heads again in honor of Ashley and other kids with cancer for the St. Baldrick’s Foundation. At the event, Ashley was asked to introduce her “Ashley’s Angels” and then share her story with the crowd.
  • We were invited to Boston to attend the Beat NB Foundation’s annual fundraising event (Cure Me I’m Irish). The Beat NB Foundation, run by a fellow neuroblastoma parent (Patrick Lacey), has been one of the largest financial supporters of Dr. Giselle Sholler’s research on neuroblastoma. Dr. Sholler is the principal researcher of the DFMO trial that Ashley has been staying cancer-free on for the last 21 months. Our family was asked to attend the VIP event prior to the event and while there, Ashley spoke to the crowd, shared her experience with DFMO and was able to personally thank the sponsors and supporters of the trial for helping her to stay alive.
  • Ashley once again was asked to share her story at the Reelin’ For Research Raleigh Kickoff Party, which is a fishing tournament held the first weekend of May each year in Morehead City benefiting cancer research through the Pediatric Oncology/Hematology Department at the NC Children’s Hospital. In the 5 years since its inception, the tournament has raised more than $575,000 for pediatric cancer research in memory of Tony Montana, who passed away from cancer in 2005.
  • Our family danced the night away to the band Liquid Pleasure at the annual fundraising gala for the N.C. Children’s Hospital. This year’s theme was the “Foot Ball” and was held in the Blue Zone of UNC’s Kenan Stadium. While there, Ashley worked the room helping to promote the sales of their new UNC baby books benefiting the hospital. Next year, the theme is going to be the “Basket Ball” held in the Dean Dome….We can’t wait for that one!!!

    It’s been so incredible for our family to be able to participate in more and more events that help bring awareness to pediatric cancer and the need for more funding to find a cure for these courageous kids.  But STAY TUNED, because next week, I will FINALLY be able to share with all of you details on an A-M-A-Z-I-N-G opportunity that recently was offered to Ashley and the rest of our family that will bring soooo much fulfillment and pride to our family’s mission to make a difference over the next couple of years!!!

    “Our Adventures With Ashley” have only just begun…

    Thank you for continuing to be there for Ashley and the rest of our family!!  XOXOXO

     

 

Video Update from Ashley with Photos

A video update from Ashley…

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And here are some photos from her recent adventures…

Join Ashley’s Angels in the Get Heeled 5K!

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Hey!! This is Ashley!! I’m sorry I haven’t posted in awhile. I have had a really great summer so far and have been doing lots of fun things! I’m getting ready to go to a camp in the mountains for a WEEK on Sunday!! I’m so excited! I’ve never been away to camp before!

I wanted to write a post about the “Get Heeled 5K” coming up on Saturday, September 14th in Chapel Hill!! The Get Heeled 5K is an amazing 5K that’s fun for the whole family! And ALL of the proceeds, even the registration fees, go to the Pediatric Oncology Clinic at UNC to help families like ours battling cancer!! They took a picture of me running in the 5K last year and asked if they could use it for their poster this year! You can ask me for my autograph when you see me! hehehe

Click on the link below and you can sign up for the Get Heeled 5K!! Everyone in your family is welcome and we’d LOVE for you to be part of the ASHLEY’S ANGELS team!! When you register, there’s a pull-down part where you can choose to join our team. Let’s see how many people we can get!! The cost of the adult registration goes up this Thursday so try to sign up by this Wednesday night!!!!

If you can’t do the 5K but would still like to make a donation, click on the other link below to get to our family’s fundraising page. Thank you so much and have a great rest of your summer!!!!!!!!

P.S. I just scored a basketball goal on a 9 foot net in my driveway! OH YEAH!!!

P.P.S. Three friends of mine need your prayers right now. Please pray for Phoebe, Melaney and Zach. Each one of them has relapsed this week. PRAY PRAY PRAY PRAY PRAY that their cancer will go away!!!!!!

TO REGISTER: http://www.getheeled5k.com

TO MAKE A TAX-DEDUCTIBLE DONATION: http://heeled.kintera.org/faf/donorReg/donorPledge.asp?ievent=1066949&lis=1&kntae1066949=30833B6BB7E0407C86EF9AAB1A6DF868&supId=382026750

Cancer Free for One Year!!!

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It’s official…This afternoon I received the highly-anticipated phone call with the FINAL results from all of Ashley’s 12-mth DFMO treatment scans and they are ALL CLEAN!!!! Her MIBG scan was CLEAN…her CT scan was CLEAN….even her Bone Marrow Biopsies were CLEAN!!!! That means she’s been cancer-free for an ENTIRE YEAR!! Can you believe it?? WOOOO HOOOOOOOO!!! We are just so super excited and feel so extremely blessed that she was able to beat not just one but TWO cancers and one year later, she’s feeling great and living life to the fullest like a child her age should! (She just turned the big 1-0 this past Friday by the way!!) Our plan is to continue on the DFMO trial for the next year (it’s a 2-year experimental trial) in hopes that we can keep her in remission. We’ll keep doing bloodwork at UNC once a month and then scans/bone marrow biopsies every 3 months in Charlotte and pray for no change.

Unfortunately this week, one of our dear UNC families received the opposite news….they received the dreadful words that we all hope we never have to hear…that our child’s cancer has returned. Please say some extra prayers for our friends Pam & Scott Levi and the rest of their sweet family as they face a relapse of their adorable son Zach’s neuroblastoma after being cancer-free for over 2 years. Relapsed Neuroblastoma is even more stubborn and feisty than the initial presentation and there’s no proven protocol to go by. Our prayer is that they are given good guidance and are able to come up with a solid plan of action to get Zach cancer-free once again. We love you guys and are here to support you with whatever you need!!

Until next time, please keep all of these brave kids in your prayers. Cancer is something a child should NEVER have to face! XOXO to all! Enjoy the rest of your summer! Thank you all for continuing to be such blessings in our lives!

Just call me NED…Again

Hiya, it’s Ashley! So it’s been a LONG time since I’ve talked to you guys! So I’ve got some news………. JUST CALL ME NED!!!! Just if that last sentence wasn’t clear NED means No Evidence of Disease. So I got the test results back from Charlotte & THE BIOPSY WAS CLEAN & ALSO THE SCANS!!!!!!! Yaaaaaaaaayyyyyy!!! Come on scream with me!!! Wow, I can hear you screaming all the way from my house!! The trip to Charlotte was great! Of course mom and I went to Bad Daddy’s Burger Bar! Ymm! We also did some fun stuff!! We went to see The Croods in the theater! Well I should probably move on to my VERY eventful week!! Well tomorrow ( May 1st ) I’m getting a Terrific Kid Award!! On Friday My family & I are going to the Reelin’ For Research kick off party! It’s going to be in Morehead City, NC! The tournament is this weekend too but I can’t stay for that because of my VERY eventful weekend!! On Saturday I’m going to the
Gala for the hospital!! I LOVE MY DRESS I’M GOING TO WEAR!!!!!! I’m going to look SOOO PRETTY!! Lastly but DEFINITELY NOT least on Sunday I’m going to the Get Heeled 5k Kick Off Party!! It’s in Chapel Hill at Southern Season!! My favorite part of that store would be the candy aisle!! Well that’s what’s happening this week!! Thanks for reading!! Love you guys! XOXOXOXOXOXOXOXOXOXOXOXO ~ Ashley Burnette

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The 9-Year-Old Spy

While we waited most of the day in the ER for a room to open up on 5 Children’s, to help pass the time, Ash thought, “I’ll just make a movie!” hehehe…ENJOY!! (click on the link below) 8)

http://m.youtube.com/#/watch?feature=youtu.be&v=-StXx99E1NY&desktop_uri=%2Fwatch%3Fv%3D-StXx99E1NY%26feature%3Dyoutu.be

As you can tell by the movie, she’s feeling much better already and will “hopefully” be able to go back home tomorrow. We made it to the 5th floor around 4:30pm and I think we all will sleep well tonight! Thanks for all the sweet messages of love today!! XOXOXOXO