“Reason this person is a Gold Ribbon Hero: September of 2014, my son, Eli, was diagnosed with alveolar soft part sarcoma. He has endured 2 tumors, 3 surgeries, 33 days of radiation, and countless scans. This coming April, it will be 2 years since he finished his radiation so he will have an MRI on his brain and leg plus a CT. To date all his scans have been clear. Through this whole adventure, Eli has made it so easy for everyone else with his great attitude! He continues to do well in school, play his sports, and be with his friends. Love him so much!” – Elizabeth W
IF YOU LIVE IN THE LOUISVILLE, KENTUCKY AREA AND HAVE A LITTLE ONE (OR BIG ONE) THAT LOVES TRUCKS – JOIN US!
Thursday, March 23rd-Saturday March 25th
Hours: 1-6p Thursday, 10-6p Friday, 9-4p Saturday
Kentucky Expo Center: 937 Phillips Lane Louisville, KY 40209
Tickets can be purchased online or at the door for $10.
Join Randy M. Manning LLC at the Mid-Atlantic Truck Show for the unveiling of their new childhood cancer awareness truck!
Over 1,000 exhibitors will be in attendance, representing leading companies from the US and abroad- ALL THINGS TRUCKS!
This event is family-friendly, fun, and is a great way to raise awareness by “Hauling Away Childhood Cancer”!
To register for this event, and for more details, click HERE.
If you are planning to attend, make sure you look for their booth in the WEST WING of the Expo Center!
MORE EVENT DETAILS
Come support kids with cancer during one of the Nation’s largest truck shows. The $10 registration fee gets you into the event all three days, with a complimentary concert on Friday night! If you are coming from out-of-town and need travel information, please visit this link or url: https://www.truckingshow.com/hotel-travel-0
There will be a “truck seat” raffle and all proceeds benefit the American Childhood Cancer Organization (ACCO). There will also be lots of fun ACCO childhood cancer awareness items to purchase as well.
Approximately, 75,000 people attend this event over the three day period. There will be vendors, displays, demonstrations, entertainment, food and drink, and of course, a good amount of large trucks for the entire family to view. Below are some links to more details about the event:
Tickets are only $10 and are available online through this link (the button above) or at the door. It’s best to purchase tickets in advance as you are able to avoid the lines. Once you register, print out your confirmation page and bring it with you to the event. Each person attending will have to register separately and the printout will need to be exchanged for a badge.
Thank you in advance for your participation and ongoing support for ACCO. We hope to see you there!
Ken Wegner, President of The Jel Sert Company, becomes the Board President of the American Childhood Cancer Organization.
The American Childhood Cancer Organization is proud to announce the appointment of Ken Wegner as their Board President. Ken joins the board with more than 30 years of corporate experience and over 20 years of nonprofit board expertise.
Ken Wegner is President of the Jel Sert Company located in West Chicago, Illinois. The Jel Sert Company was founded by Ken’s grandparents in 1926 and is owned by the Wegner family to this day. Ken started in the company as the Director of Purchasing in 1985, and became President in 1997. Jel Sert is a leading manufacturer of branded, licensed and private label food products distributed nationally to over 60,000 retail outlets, and has over 1000 employees located primarily in the West Chicago area. Their products include freezer bars, dessert mixes, powdered drink mixes and ready to drink beverages.
Ken believes in adhering to the mission of his grandparents and his father, which was to develop and manufacture high quality, great tasting and innovative food products at a distinct value for the consumer. Ken’s mission is to also share Jel Sert products to ease the journey of children treated for cancer. Recognizing the simple yet important role that freezer pops can have in the day-to-day life of a child or teen with mouth sores as a result of undergoing chemotherapy, Ken started the Take a Pop, Share a Smile program with ACCO in 2010. The program is simple: Jel Sert donates a freezer stocked with 2,000 frozen pops to children’s cancer treatment centers across the U.S. As the Fla-vor-ice and/or Otterpops product runs low, hospital staff simply order more free of charge! Jel Sert also handles any maintenance or replacement of the freezer itself. Through the leadership and generosity of Ken Wegner, Jel Sert has donated more than ONE MILLION freezer pops to more than 115 Children’s hospitals and treatment centers in 37 states across the United States!
Ken’s leadership and commitment to raising awareness of childhood cancer took on a personal meaning when his own son was diagnosed with cancer a couple of years after he began the “Take a Pop, Share a Smile” program. Since then he has expanded awareness of the devastation and unique needs of childhood cancer to his more than 1,000 employees. In 2016, Jel Sert held ACCO’s first Corporate PJammin event. Employees were invited to wear their PJs to work in tribute to the tens of thousands of children fighting cancer each day across America. Employees were also invited to donate to ACCO to support our numerous programs that help children with cancer and their families who are currently battling this life-threatening disease. ACCO is humbled and grateful for Ken’s willingness to serve as our Board President.
Ken has a BA in Economics and Spanish from Denison University in Granville, Ohio. In addition to being President of ACCO, Ken is Chairman of the Elmhurst Memorial Hospital Foundation Board, a board member at the Max McGraw Wildlife Foundation, a member of the Presidential Advisory Board of Denison University and a member of YPO Gold – Chicago.
About American Childhood Cancer Organization: The American Childhood Cancer Organization (ACCO) is the nation’s largest grassroots organization at the forefront of the crucial battle against childhood cancer. The ACCO is dedicated to improving the lives of children living with childhood cancer and its long-term impacts, and to offering critical advice, support, and assistance to families engaged in this life-altering struggle.
“Reason this person is a Gold Ribbon Hero: Our son Ethan, fought for 11 long months from Stage 4Ewings Sarcoma! He was an active happy 12 year old until cancer took over his little body! He fought like a warrior hero with his family by his side! Always a smile, a hug, a joke.. Even through the pain and tears… He was our only child… The love of our life! He will forever be our hero! 4/19/15… Gone too soon from my arms!” – Danielle P
“Reason this person is a Gold Ribbon Hero: Nolan always had a lovely smile on his face even though going through the worst which should have been the best time of his childhood. He inspires us. What a fighter !!” – Rakhi S
“Reason this person is a Gold Ribbon Hero: My 5 year old niece was diagnosed with a Wilms tumor (kidney cancer) in September 2016. She hasn’t skipped a beat since that day (making every attempt to go to school, dance class, and riding her bike)! She’s been so brave and has dealt with her own treatments by helping other children cancer patients she has met at CHOP by having a mitten drive and a toy drive at Christmas. Morgan has a tender heart, a sweet smile and the spirit of a true hero!” – Lynda T
“Reason this person is a Gold Ribbon Hero: At the age of 4 years old Cooper Hodges was diagnosed with a glioblastoma of the spine. On February 19th, 2016 Cooper woke up unable to walk, parazlyed from the waist down. He was quickly shipped to Children’s of Alabama where he was diagnosed with the tumor. Within days he was parazyled from the chest up and could not breathe on his own. Cooper remained on the ventilator for almost 2 months, during that time he had surgery to place a tracheostomy and required extensive chemo and radiation of his spine. Over the course of a 3 month hospital stay Cooper received extensive physical and occupational therapy. His treatment plan improved his tumor combined with his always happy and motivated spirit Cooper regained control and use of his upper body and came off the ventilator! Doctors were amazed! Cooper never once mentioned his Lower body paralyisis and he NEVER let his condition get him down! He was and still is an inspiration to us all!!! Unfortunately after a brief discharge from the hospital and time at home with his family and his buddies that he loved, Cooper was re admitted to children’s of Alabama and his tumor had spread to his brain. Cooper gained his angel wings and went to his forever home in heaven on June 11th, 2016 just 4 months after being diagnosed. Cooper IS my hero and a hero to SO many others! To see our community, our church, our schools and even complete strangers be touched and inspired by Cooper and his happy spirit is so incredible. He truly is “Super Cooper”!” – Lauren H
We would like to extend our deepest condolences to the family and loved ones of Nolan Scully, who earned his angel wings on February 4, at the age of four, after a long and hard-fought battle with Rhabdomyosarcoma. At every stage of his fight, through intense chemotherapy and harsh radiation therapy, Nolan showed the courage and perseverance of a true childhood cancer warrior. His story, as told by his loved ones, is an inspiration to us all, and a reminder about the critical need to find a cure for this deadly and devastating disease.
Nolan’s Story, in the words of his family:
“In October 2015, three-year-old Nolan came down with a stuffy nose which a parent typically wouldn’t stress over; that is until Ruth, his mother, noticed her son began snoring and having difficulty breathing. Doctors thought it was a severe sinus infection and prescribed Nolan some potent antibiotics, humidifier, and saline spray. The regime didn’t help.
“After an emergency appointment with an Ear, Nose and Throat (ENT) specialist, it was discovered that Nolan’s adenoids were extremely swollen and surgery was needed. In November 2015, Nolan had his adenoids and tonsils removed.
“A few days after the operation, Nolan’s biopsies came back. Nothing could prepare a parent for what was about to happen next. The doctors told the Scullys that Nolan had a rare and aggressive form of cancer called Rhabdomyosarcoma. This type of cancer is every bit of cruel in its silent relentlessness.
Rhabdomyosarcoma Childhood Cancer
“There are two types of muscle cells in the body: smooth muscle cells and skeletal muscle cells. Smooth muscles control involuntary activities and skeletal muscles control voluntary activities. Rhabdomyosarcoma (RMS) is a malignant tumor (cancer) that rises from a normal skeletal muscle cell. About four children per million healthy kids under the age of 15 will develop RMS each year. It is most often seen in young children under the age of five. Nearly 40% of all RMS cases involve the head and neck region.
In an instant, the Scully’s lives were turned upside down and life would never be the same. There’s an intense shock, confusion, anger, disbelief and overwhelming sadness that comes with such a diagnosis. Paralyzing fear doesn’t begin to describe the panic his parents felt. On top of all that, Ruth was pregnant. How can a mother enjoy her pregnancy when one life is growing while another is suddenly sick with life-threatening cancer?
“The Georgetown University Hospital’s Pediatric Cancer Clinic immediately took over Nolan’s case. PET Scans, CTs, and bone scans were ordered. Because the doctors had discovered an obstruction (tumor) in Nolan’s nasal airway, sedation for his tests wasn’t recommended. Instead, Nolan was admitted to the Pediatric Oncology unit where he was put under general anesthesia for the procedures. The surgeons also put in a chemo port.
“That was one of the most hardest, most terrifying things we’ve ever had to experience… seeing our beautiful baby hooked up to a ventilator machine,” Ruth explained.
The family was heartbroken and beyond devastated to learn that Nolan’s tumor was considered inoperable. However, his tumor appeared to be isolated to his nasal pharynx which is right through the nose and right above the throat.
Just like that, this brave little boy would begin the toughest journey of his life. Nolan would have to complete 43 agonizing weeks of chemotherapy, and that didn’t include the shots, infusions, transfusions, scans, tests and constant blood withdrawals. Imagine the sorrow his family felt in hearing that news..
The Georgetown Hospital Pediatric Oncology Department became Nolan’s second “home” over the next several months, with a . team of care providers who treated him with much love and kindness. The doctors analyzed every possible avenue to heal Nolan from this cancer that had invaded his little body.
Jonathan and Ruth turned to family, friends, and the community for much needed support. The emotionally draining, uphill battle would be impossible to face alone, and they needed to maintain their household and care for their daughter, Leila. Somehow Ruth found strength to begin chronicling her son’s journey on Facebook (NolanStrong).
The downward side effects of chemotherapy kicked in. Nolan started losing his hair and he was very upset over it. His parents comforted him by taking him out to see the Christmas lights around town and it helped cheer him up. Sickness and exhaustion became a regular part of Nolan’s existence, but the amazing Georgetown staff kept Nolan occupied throughout the day with activities such as painting pictures and playing with toys. He had his invisible super hero cape on and he was ready to “kick cancer’s butt!”
Nolan dreamed of becoming a fire fighter like his dad someday.
More of the community began showing their support and participating in fundraisers and benefits. Nolan even received a visit from the Washington Capitals!
Before the family could even blink an eye, Nolan began radiation treatments in Philadelphia (February 2016). Ruth kept Nolan’s followers informed of his struggles. Fevers, headaches, vomiting, ear and eye pain became a part of his daily life. At almost four years old, Nolan weighed only 13 pounds more than he did at six months of age.
Fire services continued to show their love and support. The East Farmingdale Fire Department sent gifts. Then, the Philadelphia Police Commissioner inducted Nolan as an Honorary Police Officer. Nolan was so excited!
Summertime came around but cancer and a weakened immune system had robbed Nolan of so many fun activities. He couldn’t attend a planned Nationals baseball game, go swimming or play in the sand. But Nolan had a warrior mentality and he told his mom, “That’s okay, Mommy. Once I get my cancer out I’ll be able to do anything I want.” So, Nolan’s parents scheduled fun activities whenever possible. They visited Jurassic Quest and the National Harbor. He also got to shoot hoops with the Washington Mystics. Family and friends coordinated more fundraisers. The outpouring of support was incredible.
By August 2016, Nolan’s health took a turn for the worst. Testing revealed Nolan’s cancer cells were still very much active. August 29, 2016 was supposed to be his last day of scheduled chemo. Ironically, and with great sadness, it became his first of 50 more rounds of scheduled chemo, and this batch would be far more potent. Additionally, a different kind of radiation would be considered and possibly surgery, his parents were told.
Through all the chaos, heartache and disappointment, time would pause for just one day. On September 7, Nolan celebrated his 4th birthday. Family, friends, schools, and the community sent Nolan gifts, cards and get-well letters.
Later that month, Ruth shared a sentimental moment with Nolan’s Facebook fans. While lying in bed one evening, she laid her head up against Nolan with her eyes closed. Nolan thought his mother was asleep. He kissed her on the forehead and whispered, ”I’m so lucky to have you as my best girl.” Ruth went on to say that she felt like the lucky one. ”Lord, please spare my child and let him win against this beast of a cancer,” she later wrote.
In October 2016, Nolan underwent a 12 1/2-hour surgery to remove the tumor, and bone-grafting to repair damage caused by the tumor. The following weeks were incredibly difficult and painful, especially as the cancer spread into his lungs and Nolan underwent yet another surgery. Sadly, the tumors spread around his heart and there was nothing more the doctors could do.
Nolan earned his angel wings on February 4, 2017.
“Nolan went through more tragedy as a four year old than most adults go through in a lifetime, yet throughout it all, Nolan was courageous and fighting. He is a real-life superhero—a conqueror. He has united thousands around the world, and inspired so many. He gave us hope and we will miss him so much.”
About American Childhood Cancer Organization
American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.
For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:
“Reason this person is a Gold Ribbon Hero: Andrew was diagnosed with stage 4 rhabdo when he was 1. During treatment (54 weeks in total) he never stopped fighting! He was always smiling, playing and being a kid. He is truly a miracle. He is our hero because despite all the setbacks, Andrew never lost his essence. He taught us about courage, hope and faith.” – Marcela A
Join Microsoft and ACCO in your PJs to Help Kids with Cancer!
Kicking off a new partnership to support and empower children and their families fighting childhood cancer, MicrosoftCorporation and American Childhood Cancer Organization (ACCO) will be hosting a series of PJammin® for Kids with Cancer events at Microsoft stores in San Antonio and Austin, Texas. This new collaborative effort will commence with a special event specifically for children currently in treatment for childhood cancer at Santa Rosa Hospital in San Antonio, followed by two fun-filled public events hosted at Microsoft stores in San Antonio and Austin. Attending these special PJammin® parties will be local childhood cancer warrior Damon and his family, Noah and his “chemo buddies”, and other children currently battling or survivors of this disease. These warriors are eager to share their stories in order to raise awareness about childhood cancer!
The first public PJammin® event will take place at The Shops at La Cantera Microsoft store in San Antonio on Saturday, February 25 from 1-4pm.
The second public PJammin® event will take place at The Domain Microsoft store in Austin on Sunday, February 26 from 1-4pm.
The goal of these unique PJammin® for Kids with Cancer events is to raise awareness of childhood cancer and to show support for children who are currently battling or who have fought this disease. Families are invited to attend these events in their pajamas; volunteers from Microsoft, staff from ACCO, and members of ACCO’s local Founding Hope Organization Sal’s Journey of Hope will be showing their support by wearing their PJs as well! Why pajamas? Kids undergoing treatment for childhood cancer often must spend days, weeks, and sometimes even months in their pajamas or hospital attire during their treatment. Recent popular corporate PJammin’® events include a holiday special hosted by Rock Bottom Breweries in Denver, Colorado in December and summer-themed PJammin® event hosted by ACCO partner Jel Sert in July 2016. For more information about ACCO’s Signature Corporate Events program, please visit our website at: https://www.acco.org/corporate-events/.
Both PJammin® parties will feature free Xbox play stations, a Just Dance station, a photobooth (San Antonio only), and other family-friendly activities, as well as special appearances by The Batman of San Antonio and friends (San Antonio location only) and other local celebrities! Kids will receive special “swag bags” from Microsoft and ACCO, and there will be a Donation Station for individuals and families who would like to make a contribution to both national and local families in need due to childhood cancer. Pizza by Luciano’s, decorated with the gold ribbon symbolizing childhood cancer, and other refreshments will be available at both special events!
ACCO is sending a representative from their National Headquarters in Beltsville, MD to attend each event. There will also be a professional photographer and videographer onsite. We will be sharing the event on ACCO’s Facebook page with the over 140,000 followers nationwide! (https://www.facebook.com/americanchildhoodcancer/)