Gold Ribbon Hero – Alex’s Story: B-Cell ALL

Alex’s Story: B-Cell ALL

Alex’s childhood cancer journey began in August 2016 when his Mom (Alex’s grandmother who has cared for him since infancy and adopted him at the age of 5) noticed unusual bruising on his legs. Thinking perhaps anemia, or low iron, was causing the bruises, the diagnosis was far more serious than she could have imagined: Alex had B-Cell Acute lymphocytic leukemia (ALL). He began chemotherapy immediately; currently, he is in remission and undergoing maintenance chemotherapy. With his total treatment time expected to be three and a half years, it has been a tough battle for Alex, but he continues to fight with the courage, strength, and perseverance of a true childhood cancer warrior.

Leukemia is the most common form of childhood cancer, accounting for nearly one-third of all childhood cancers. It begins in the soft core of the bones, known as the bone marrow, then spreads into the blood stream. B-cell ALL (Acute lymphocytic leukemia) is a quickly-growing form of leukemia in which the cancerous cells originate in B lymphocytes, the cells responsible for making the antibodies that the body uses to fight bacteria and viruses. Standard treatment is usually one to two years of chemotherapy targeting the cancer cells in the blood and in the bone marrow.

Yet as Alex and his family have learned, treatment for childhood cancer is never “standard”. In Alex’s case, it became clear very early in treatment that the cancerous cells in his body were not responding to the traditional course of medication used to fight ALL. Alex’s oncology team changed his status to “Very High Risk”—a nightmare scenario for any family—and he was placed on a far more aggressive chemotherapy regime. Luckily, this new regime worked and a month after his diagnosis, Alex’s Mom received the news she had been hoping and praying for: the leukemia was gone from Alex’s bone marrow. Although Alex’s fight was far from over, remission was, at the very least, a step in the right direction!

Childhood Cancer: a Physical and an Emotional Journey

The physical side effects of childhood cancer are well-documented; yet fighting childhood cancer is an emotional struggle as well, and one much-less-frequently discussed. Navigating a new, unknown world of medical terminology, hospital life, treatment schedules; helping explain and deal with the physical side effects of chemotherapy; making potentially life-and-death decisions for your child: these challenges present an emotional struggle for all families facing a childhood cancer diagnosis. Yet navigating this world can be even more difficult for families—like Alex’s—who are already trying to deal with stress and pain in their lives.

Alex’s Mom has faced the extraordinarily difficult challenge of helping Alex fight childhood cancer while simultaneously facing the death of both her father and her daughter (Alex’s mother) only months before Alex’s diagnosis. Her own struggles with overwhelming grief and coping with both her own health problems and those of her husband have made it very, very difficult for her to tackle Alex’s disease as aggressively and assertively as she would like. Yet even through the added pain and stress, Alex’s Mom has never left Alex’s side or faltered in the fight against childhood cancer; as she says, “We are doing all we can to help Alex soar through this.”

Alex has faced his own emotional challenges as well during his fight with ALL. In particular, he is struggling to cope with feelings of self-consciousness and isolation, all-too-common in many children, especially school-aged children, undergoing treatment for cancer. He is saddened by the perception that he is an “outcast” and that he has lost his “old life”, feelings that are augmented by the fact that he can’t currently participate in activities that he loves such as Cub Scouts and soccer. Because he must wear a mask in public to prevent him from coming into contact with bacteria and viruses that his body cannot fight effectively, he is uncomfortable in public. He doesn’t like the fact that people often stare at him and worry that he will make them sick. Alex’s Mom has struggled to help Alex cope with these emotional challenges that are often as difficult as the physical challenges of childhood cancer.

There are no easy answers to these challenges, but we hope that by sharing Alex’s story, we can also remind Alex and his family that they are not alone and that there is help and support available to them, to help them through both the physical and emotional challenges presented by Alex’s fight with childhood cancer.

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:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo:

Gold Ribbon Hero Tyler W | Osterosarcoma

“Reason this person is a Gold Ribbon Hero: He got osterosarcoma at 15 years old and begged to keep his leg the tumor was in his shin so he had full donor bone and plates put in. Then the hard core chemo be gain again. The over dose was killing him and uva actually sent him home with hospice to die. We wasn’t giving up so easy took him to Cleveland clinic where he was in full body organ shut down. His heart was also destroyed. He was then sent to Cincinnati children’s hospital where they totally helped get his organs a bit happier but still in heart failure. He had to be 2 years out of chemo before he got his new heart in the years waiting he had 3 open heart surgeries last one to implant the lvad. He was doing good 8 months to the date he got discharged to go home for a little while. He only had2 more months to wait for his new heart at this time. He was home 3 days before rushing him back to the hospital where 2 days later he passed away from septic shock. All the fighting and never giving up then he dies from an infection. We are devastated. This boy was a true meaning of what a hero is. He was truly amazing and wanted to live so badly never complained about pain he just wanted to live. He made me so proud and surprised many many doctors. Tyler Wiseman is a true meaning of a true HERO” – Shelley W.

Raise Awareness and Order an ICCD Shirt, Wear it and Send in Your Photo!

STEP ONE:

ORDER AN AWARENESS SHIRT

A great way to help raise awareness for childhood cancer is by ordering one of the 2017 ICCD Awareness Shirts. Click Here or the button below to place your order:

The shirts start at less than $25 and come in youth sizes, all the way up to adult 3XXL. They are available in black and gray, and also come in several different styles. Once you place your order, after the campaign ends, you will receive your shirt to wear on February 15th, International Childhood Cancer Day (ICCD). By simply wearing this shirt, the person next to you in the grocery line, at the doctors office or at work, may ask what your shirt represents giving you the opportunity to inspire another person to help our cause!

To learn more about our 2017 ICCD Awareness Shirt project, visit: www.acco.org/iccdshirt17

STEP TWO:

WEAR YOUR SHIRT TO RAISE AWARENESS

International Childhood Cancer Day (ICCD) is approaching fast. On February 15th each year, on this important day every organization, parent and family who has beed affected by childhood cancer stands together to send a message to the world… Childhood cancer needs more attention! Watch this video to see how children, teens, families and their supporters helped to raise awareness on ICCD in 2015 and 2016:

By ordering a 2017 ICCD Awareness Shirt, that honors close to 5,000 names of children and teens who have fought or are still fighting cancer, you’re providing a voice to those who may be too young to have one. Awareness is the first step in the process to receive more funding for better treatments and research that will one day lead to a cure. As adults we need to raise our voices and give kids the future they deserve!

STEP THREE:

CHANGE THE FUTURE

Childhood cancer is the leading cause of death by disease for children around the world, yet it is often overlooked or “pushed to the side” when governments, large institutions and organizations allocate funds. Every shirt makes a difference, every effort to bring more awareness to this terrible disease helps move us one step closer to finding a cure.

It’s easy to help, simply order a shirt for less than $25, wear it on February 15th, on International Childhood Cancer Day, and take video or snap a photo and send it to media@acco.org. We will then share your photo, the story why you bought a shirt and post it in an updated video and social media album.

In 2015 we had 1,400 names submitted, in memory or in honor of a child or teen who was fighting or did fight childhood cancer, and 3,884 shirts were worn in their honor. Then, last year in 2016, just over 4,000 names were submitted with an astounding 5,519 shirts ordered to wear and spread awareness all over the world. This year we had nearly 5,000 names submitted! Thank you for your order in advance and we look forward to sharing your photos, videos and stories.

DID YOU MISS SUBMITTING A NAME?

If you missed submitting a name for this shirt, or know someone who may want to their child or
teen added, we run two shirts a year. Please click here to submit a name for our next shirt!

After purchasing your shirt, please forward this email or share on social media with your family and
friends so they can join the global childhood cancer community to raise awareness.

To receive text message updates and reminders please text GoGold to 51555 to sign up.

For any questions, please reply to this email or email shirts@acco.org, and we will gladly help you.

Spacelabs Healthcare Helping to Create Care Kits for Rady Children’s Hospital

The American Childhood Cancer Organization would like to give a big shout out to Spacelabs Healthcare for their amazing participation last week in creating Care Kits for Rady Children’s Hospital in San Diego, California Over 100 Care Kits were made for caregivers, siblings, and child patients! Each Care Kit included essentials for a hospital stay, our ACCO learning resources and additional fun activities to keep the families busy during their time at Rady Children’s Hospital. Each kit was packaged and personalized with a note from a team member at Spacelabs Healthcare. We THANK YOU for your willingness to serve the childhood cancer community and look forward to a continued partnership in the future!

Do you know a company or business that would be interested in a corporate activity like this one? Email jdibenedetto@acco.org for more information on our custom corporate events!

Gold Ribbon Hero – Damon’s Story | Osteosarcoma

Damon’s Story

Today, we would like to bring you the story of Gold Ribbon Hero Damon and his fight against osteosarcoma. Throughout his own personal battles with childhood cancer—battles which Damon has never once doubted that he will eventually win, no matter how long it takes and how hard he has to fight—he has sought to use his experiences to raise public awareness about childhood cancer and help others win their battle as well. As his father writes:

When Damon was diagnosed, a torch was lit in his heart. It fueled his spirit and gave light to others. His mother and I carry a light for him, because his torch fuels our hearts as well. There is a scripture that reads: “Nor does anyone light a lamp and put it under a basket, but on the lampstand, and it gives light to all who are in the house. Let your light shine before men in such a way that they may see your good works, and glorify your Father who is in heaven.” (Matthew 5:15-16)

Fighting Osteosarcoma: “I CAN DO THIS ALL DAY”

Damon was diagnosed with osteosarcoma in January 2014, at the age of 9, after his mother gave him a hug and felt an unusual lump on his left arm. Osteosarcoma is the most common form of bone cancer in children and teens, and while it can develop on any bone, it is usually found at the quickly-growing ends of the “long bones” such as those in the arms and legs. In Damon’s case, the enormous tumor had destroyed most of his left humerus (the upper arm bone between the elbow and the shoulder).

Despite the damage from the tumor, Damon underwent limb-salvage surgery in April 2015 (a complex operation which removes as much cancerous tissue as possible without amputating the entire limb), followed by ten months of highly-intensive chemotherapy. In January 2015, exactly one year after his diagnosis, Damon was declared N.E.D.: No Evidence of Disease!

Unfortunately, what appeared to be a victory in Damon’s fight against cancer was little more than a respite between rounds. In November 2015, routine scans showed that the cancer had returned to his arm. This time, limb-salvage surgery was not possible; the only option was amputation. Yet Damon refused to give up the fight; as his father notes, “His mother and I cried; Damon did not. He said he understood and he would rather hug us with one arm than to die with two.” After surgery and more chemotherapy, Damon was again declared N.E.D. in September 2016.

Yet just this month, his first routine scan since September showed more bad news: the growth of three new nodules in his lungs. One of these nodules is inside the lining of the lungs—a “pleural metastasis”—which could potentially break through the lining and spread into the pleural fluid surrounding the lungs. Having exhausted all available chemotherapy options, Damon’s oncology team at M.D. Anderson Children’s Cancer Center is now turning to a clinical trial in the hopes that an experimental treatment may prove more successful at finally stopping the cancer growth. It will mean longer stays at the hospital and time away from the family, but his mother gave up her job to make sure Damon is well taken care of and always has someone with him.

Now aged 12, Damon faces this new challenge just as he has faced every one before, with courage and determination to win this fight, no matter how long it takes. Calling himself “Bugsy” after the guinea pig in “Bedtime Stories” with Adam Sandler, he understands the experimental nature of the treatment options available to him. Yet when asked by his doctor if he was ready, he quoted Captain America by saying, “I can do this all day!” Damon’s father says, “Damon is a tough kid, tougher than many, and he will be okay…I told Damon it’s like boxing, sometimes the fight is over in one round, sometimes it goes 15 before you win. It just depends on the competitor. Osteo is a much tougher competitor than we were ready for, but we have too many in his corner and he’s too tough to give up.” He even has Captain America (Chris Evans) in his corner!

“A Beacon of Hope”

Being a Gold Ribbon Hero means to believe in someone or something. Let that belief light a fire in your heart for all to see. You’ll find when you do, even in your darkest hour, that light will guide you back and be your ‘Beacon of Hope.’ –Damon’s father

Throughout his cancer journey, Damon has never let his personal struggles prevent him from raising awareness about childhood cancer. When Damon’s story caught the attention of musician Pharrell Williams, Williams sent Damon an inspirational video encouraging Damon to “do wondrous things and inspire many.” Damon took this to heart! He became the “spokes-kid” for the WNBA Silver Stars’ cancer program “Assist Against Kids with Cancer”, as well as for the San Antonio Rampage. He also took part in an advertising campaign for University Hospital.

More recently, Damon wanted to find a way to help kids with cancer celebrate their victory over this disease, so he coordinated with the San Antonio Fire Department to secure a bell from an old fire truck. This bell is now on display at University Hospital, where kids can ring it when they receive their final chemotherapy treatment! The bell also memorializes firefighters who have passed away due to occupational cancer. Damon’s public spirit caught the attention of Texas lawmakers, who invited Damon to become “Governor for the Day.” Damon’s first order of business was to proclaim October 7, 2016 “Pediatric Cancer Awareness Day!”

ACCO is excited that Damon will be our Ambassador at an upcoming Corporate PJammin event to be held at the Microsoft Store in San Antonio TX. Thank you Damon for your determination to let others know that kids get cancer too!
Thank you, Damon, for sharing your story with us, for all your work helping and inspiring other children facing a similar situation story, and for showing us the brave, courageous face of a true childhood cancer warrior!

Damon continues to jump at the opportunity to join other childhood cancer efforts in raising awareness. We look forward to receiving his help at our next big corporate event in Texas! A local Microsoft store is rolling out the red carpet for kids with cancer! Stay tuned…

About American Childhood Cancer Organization

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

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:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo:

Gold Ribbon Hero Katelyn G. | Leukemia

“Reason this person is a Gold Ribbon Hero: Katie is our little miracle baby, born 17 years after her big sister we had long ago given up hope of having another baby. At three weeks old she was put on digoxin and Lasix because she was born with two holes in her heart and pulmonary stenosis. It started a long three years of meds and tests and worry. But she surprised all her doctors and amazingly in time her heart was able to heal itself, she no longer required meds and the artery had widened and one hole has closed and the other has grown much smaller. In May 2016 her cardiologist declared Katie would never need surgery. We were exstatic. Just a month later on June 21st, 2016 we began a whole new battle for her life, when Katie was diagnosed with leukemia. She had a biopsy and port placed and started treatment immediately. After six months of intense chemo Katie is doing great, she is in remission and started maintenance chemo on Dec 29th, 2016. Katie has already faced so much in her 4 short years but she is strong and a trooper, Our little warrior. Katie loves dragons and dinosaurs and babies and being outside. Her favorite thing is hanging out with her peeps (her two nieces and three cousins). She is always smiling and happy. We know she will overcome this too. Her story is on Katie’s Krusade on Facebook.” – Susan G

More about Childhood Leukemia Cancers:

Learn More About the Different Types of Childhood Cancers:

Childhood Brain Tumor Cancer (Brain Stem Tumors)
Spinal Cord Tumor Cancer
Childhood Neuroblastoma Cancers
Childhood Hodgkin Lymphoma Cancers
Non-Hodgkin Lymphoma Cancers
Wilms tumor (Kidney Tumors)
Rhabdomyosarcoma
Retinoblastoma
Bone cancer (including osteosarcoma and Ewing sarcoma)
Leukemia Cancers: Acute lymphocytic (lymphoblastic) leukemia (ALL) Acute myelogenous leukemia (AML); Juvenile myelomonocytic leukemia (JMML)
Hepatoblastoma (Liver Cancer)
Rhabdoid Tumors

2016 Awareness Tree Thank You’s

2016 National Awareness Tree for Hope and the City of Newport Beach, CA

We would like to take a few minutes to express our gratitude to the City of Newport Beach, California and the Newport Beach Chamber of Commerce for hosting this year’s National Awareness Tree for Hope and for incorporating this special tree into the amazing holiday festivities at Marina Park. We know how much hard work and dedication goes into making this holiday tradition a huge success every year, and we are truly honored to have been a part of it.

We would also like to take this opportunity to thank Disney and Grand Marshall Mickey Mouse for their participation in this spectacular event and for making it a special evening for the families who came out to watch the lighting of the tree and join in the fun of the 108th Newport Beach Christmas Boat Parade at Marina Park. And finally (“last but not least”, as the saying goes), we would like to thank all the families who came out to support this amazing event. It was a bit of a chilly evening for Newport Beach, but the turnout was still incredible, and your support helped make this event a tremendous success!

The 2016 National Awareness Tree for Hope at Marina Park

Thanks to the City of Newport Beach, California and the Newport Beach Chamber of Commerce, the 2016 National Awareness Tree for Hope was incorporated into the celebrated the 108th Newport Beach Christmas Boat Parade at Marina Park, and on display throughout the duration of the festival, from December 14 to December 18. The 108^th annual festival was kicked-off this year with an amazing and powerful tree lightening ceremony at the National Awareness Tree for Hope on December 14. The ceremony was followed by family activities and fireworks at Marina Park, and then by the Holiday Boat Parade, a magical parade of nearly 100 brightly-lit boats around Newport Harbor. Many homes around the harbor were decorated for the event as well, a display known as the Ring of Lights! We are both honored and thankful that the 2016 National Awareness Tree for Hope, with its thousands of beautiful gold ribbons honoring the lives of children with childhood cancer, was included in this wonderful holiday tradition.

The History of the National Awareness Tree for Hope

The National Awareness Tree for Hope is an annual tradition started by American Childhood Cancer Organization in 2000 to honor children and teens whose lives have been forever changed by childhood cancer. Each year, the tree—twenty feet tall or even taller—is decorated with thousands of gold ribbons, each bearing the name of a child or teen who is facing or who has faced a cancer diagnosis. The holidays can be an especially difficult time for children in the midst of cancer treatment or for families who are grieving a child they have lost to this devastating disease. The National Awareness Tree was conceived as a way to bring some much needed light into the lives of these families at this difficult time.

From 2000-2013, the Tree stood in the House and Senate Office Buildings as well as Old Post Office Pavilion in Washington, DC and every year, ACCO held an official tree lightening ceremony and celebration that allowed families to come together and honor our nation’s children who had fought or were still battling cancer. From 2014-2015, the Tree was hosted by MedImmune, AstraZeneca’s biologics research and development arm in Gaithersburg, MD. ACCO was excited by and grateful for AstraZeneca’s support for the National Awareness Tree for Hope and its commitment to making a difference in the lives of patients and the local community.

Although Newport Beach, California is a long way from its traditional home on the East Coast, we could not have asked for a better home for the 2016 National Awareness Tree for Hope. We are so very thankful for the assistance and support of the amazing organizers at the City of Newport Beach and the Newport Beach Chamber of Commerce. The National Awareness Tree for Hope is a critical reminder of just how many lives have been altered forever by childhood cancer, and its prominent role in the annual holiday festivities at Marina Park this year helped to showcase the importance of this critical childhood health concern.

About American Childhood Cancer Organization

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

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:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo:

Gold Ribbon Hero Evan M

“Reason this person is a Gold Ribbon Hero: Evan is my brave and loving two and a half year old. On August 7th Evan was taken into the hospital for having a swollen abdomen. After tests and tears he was diagnosed with Stage 2 Clear Cell Sarcoma of the Kidney cancer. In less than 48 hours after having his kidney removed he was playing in the hospital, walking and laughing. His laugh is the best. He also has a fun little smirk that no ladies can resist. Evan is my hero and has touched lives across the country. Evan doesn’t complain about being in the hospital or clinic. His spirit and courage radiates in all he does. Evan is also the best big brother to Madison. If she cries he does his best to make her happy. Acting silly is his specialty. I love my #Toddlershark to the moon and back forever and ever.” – Colleen M