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

Posted on January 29, 2017 by maura

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:

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

Posted on January 16, 2017 by maura

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

Posted on January 13, 2017 by maura

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

Posted on January 13, 2017 by maura

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:

2016 Awareness Tree Thank You’s

Posted on January 7, 2017 by maura

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:

Sofía and her family share their story at Rock Bottom Breweries to help us Go Gold® for the Holidays!

Posted on December 27, 2016 by maura

Go Gold® for the Holidays!

We would like to thank Sofía and her family for joining us on Wednesday, December 7 for Colorado Rock Bottom Brewery’s public PJammin’® event to raise awareness of and support for childhood cancer. Sofía is currently undergoing her second round of treatment for kidney cancer, and we are so thankful that during this difficult time, she and her family took the time to participate in this important event and share their story with us! The December 7 PJammin’® event at Rock Bottom Downtown Denver was part of Go Gold® for the Holidays, a fundraising event organized by CraftWorks Restaurants and Breweries, Inc. to support ACCO and families, like Sofía’s, battling childhood cancer. Go Gold® for the Holidays continues at all Rock Bottom Restaurants in Colorado through December 31!

Sofía’s Story: Wilms Tumor

Sofía’s cancer journey began in April 2015 when she began complaining of stomach pains. At first, her parents believed it to be a stomach bug, so common with school-aged children, until one evening when the seven-year-old showed them a hard lump in her stomach. Initial scans revealed every parent’s worst nightmare: a tumor growing in her kidney. Sofía was immediately transferred to a larger medical center for surgery to biopsy and remove the tumor.

The surgery revealed that Sofía had Wilms tumor, a rare type of cancer that grows in the kidney. Wilms tumor is diagnosed in only about 500 children every year, most often in children under the age of six. In Sofía’s case, the tumor had spread to her lymph nodes as well (Stage III). Sofía began a six-month regime of chemotherapy and radiation immediately at a hospital near her home in Steamboat Springs. Although the treatment was difficult—radiation, for example, required that Sofía sit still and alone inside the treatment room while the radiation was targeted at her young body—it was successful. Sofía was declared “cancer free”!

“Scanxiety”…and Relapse

For the next year, Sofía underwent routine x-rays and CT scans to verify that the tumor had not returned. As with many families who have fought childhood cancer, these scans are a source of great anxiety, or “scanxiety” as it is sometimes called. And after clear scans for over a year, in late November 2016, Sofía’s parents were given the news they had been dreading: the Wilms tumor had returned. Worse yet, the CT scan showed two nodules on her lung; the cancer had metastasized, making it a Stage IV cancer. Due to the increased severity of this reoccurrence, Sofía now must travel to Denver for chemotherapy and radiation. This current round of treatment is expected to last for five months, and will include several rounds of chemotherapy each lasting four days, as well as whole lung radiation.

Still, despite this setback, Sofía’s oncology team is hopeful that her young, strong body will respond positively to this treatment protocol. She has now completed two rounds of chemotherapy, and although she is coping with the typical side effects of chemotherapy—lack of appetite and fatigue, for instance, as well as a compromised immune system—she has also been able to enjoy some normal childhood activities. She enjoys returning to her friends and activities at school whenever her energy levels and immune system sensitivities allow her to, and loves playing with her siblings every chance she gets.

Thanks to you, Sofía, and your family, the wonderful people who participated in this incredible event now have a greater understanding of just what a terrible toll this disease takes on children, siblings, and families alike but also just how brave, strong, and courageous a childhood cancer warrior really is! Thank you for taking the time to share your story with us.

About the American Childhood Cancer Organization

The 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, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, the 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 Logan

Posted on December 12, 2016 by maura

Introducing Super Logan, a Childhood Cancer Superhero!

“Super Logan” in the Batman costume in the middle.

Today, we’d like to introduce you to Logan, affectionately called “Super Logan” by his friends and family for his amazing, courageous fight against tremendous odds. On December 7, Logan and his family joined Hope 4 Heroes (ACCO’s Colorado-based Founding Hope Fund) and Rock Bottom Downtown Denver to participate in a public PJammin’ event organized by Colorado Rock Bottom Restaurants to raise awareness about childhood cancer. We would like to thank Logan and his family for taking the time to participate in this important event and for sharing their childhood cancer story with us.

Logan’s Story: Aggressive Stage Three Ependemoma (Brain Tumor)

Logan’s childhood cancer story began one evening in June, 2014 when he collapsed unconscious while walking to his parents’ bedroom. The five-year-old was rushed immediately to the local ER, where a CT scan showed that a large mass in his brain had hemorrhaged, causing paralysis on his left side. Logan was airlifted to a larger hospital, where his parents received the worst possible news: Logan had an inoperable brain tumor located inside his brainstem and he was unlikely to survive more than three days.

Logan’s parents, however, refused to accept this devastating diagnosis. They immediately sought a second opinion from surgeons at the Barrow Institute, part of the Phoenix Children’s Hospital, who believed that at least part of the tumor could be removed. Although the outcome was by no means guaranteed, surgeons felt that surgery could at least extend Logan’s life and give him a fighting chance. With nothing to lose, Logan was transferred to Phoenix Children’s Hospital for an eight-hour surgery.

In fact, the outcome was better than anyone could have imagined: Logan’s golf-ball-sized tumor was located entirely outside of the brainstem and the surgical team was able to remove it all, in its entirety. Logan’s family described the surgeon’s reaction when he told them the news as “giddy”, not a word one usually hears in these circumstances. Logan went into surgery hoping only that his life might be extended a little bit, but miraculously, came out cancer-free!

A Second Chance at Life, but A Very Long Road to Recovery

Yet despite this amazing outcome, Logan’s cancer journey was far from over. Although the tumor was gone, for now, Logan was unable to perform many basic functions that we take for granted every day, including talking, walking, and even swallowing. Moreover, he faced the very real possibility that the tumor, a fast-growing Ependemoma, would return without x-ray radiation therapy, a treatment as aggressive as the tumor and linked to significant long-term health risks and even secondary cancers.

Again, Logan’s family sought other options. So-called “traditional” X-ray radiation therapy is mostly commonly used as a post-surgical treatment for brain tumors like Logan’s, but is linked to severe side effects and even secondary cancers, especially in young children whose brains are still growing and developing. Instead, Logan’s parents took Logan to San Diego to undergo 6½ weeks of proton radiation therapy. The goal of proton radiation therapy is to more precisely target any remaining cancer cells, using pencil-beam scanning that carefully builds up the dose layer by layer exactly at the site of the tumor, hopefully limiting damage to surrounding healthy cells.

Thus far, Logan’s amazing “miracle” continues: his regular scans, although the source of extreme “scanxiety” so common for families fighting childhood cancer, have all come back clear, indicating that Logan is still cancer-free. But Logan still faces many, many challenges; “the past two years have been one trial after the next for our brave boy,” recounts Logan’s mother. Logan spent months in rehab after the surgery overcoming the paralysis caused by the tumor, re-learning to walk, talk, and even swallow. One therapist stated that Logan was one of the hardest swallowing cases she had ever seen and that her team honestly wasn’t sure if he would ever be able to swallow normally again.

The proton therapy has left its mark as well. He has been diagnosed with a vascular condition called Moyamoya and has suffered multiple strokes, including one that temporarily left him without sight. In March 2016, Logan underwent a second serious brain surgery. Most recently, abnormal weight gain has been linked to the development of central sleep apnea, a condition in which the brain no longer automatically commands breathing during sleep. Each day seems to bring new challenges to Logan and his family, but as his mother proudly notes, Logan never gives up: “Logan will always have battles to fight but we will be here and ready to stand strong next to him. He is an incredible boy and we are so proud to call him our son.

Thank you, Logan, for sharing your inspirational story with us and for showing us that it really is possible to fight, for showing us the true face of childhood cancer. You are a true Superhero!

About American Childhood Cancer Organization

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:

Football Great, Rod Smith, Helps Local Rock Bottom Support Childhood Cancer

Posted on December 2, 2016 by maura

FORMER BRONCOS FOOTBALL GREAT, ROD SMITH, JOINS ROCK BOTTOM RESTAURANTS TO SUPPORT KIDS WITH CANCER

Former Football Player Ring of Famer, WR Rod Smith, is joining Downtown Denver Rock Bottom Restaurant on Wednesday, December 7^th, to support national and local kids with cancer.

Through the American Childhood Cancer Organization (ACCO)’s Colorado community-based Founding Hope Fund, Hope 4 Heroes, five local families facing childhood cancer are receiving a warm reception this week! As part of the ongoing partnership between the ACCO and Rock Bottom Restaurants, Rod Smith will now be joining the “PJammin” event at the Downtown Denver location. Rod was excited to hear that he could bring some holiday joy to these five local families who are living with a child who is fighting or has fought childhood cancer, while also raising much needed awareness for a great cause. ACCO’s Hope 4 Heroes invites locals to put on their pajamas and join Rod Smith and the five families at the Downtown Denver location!

For this initiative, five local Rock Bottom Brewery locations are supporting kids with cancer and are inviting the Denver community to participate! The ongoing fundraiser, first announced on November 16^thduring the “Wicked Elf” tapping, will extend until the end of the year. The five locations are donating a portion of sales proceeds to the American Childhood Cancer Organization (ACCO), a national charity that supports families who are facing a diagnosis of childhood cancer, including Denver area families. In addition, patrons can add a donation to their tabs, purchase a “Gold Ribbon Pin-Up Voucher” with their name to hang in the restaurants, and can help sponsor a local family with childhood cancer during the holiday season through the “giving tree” program at each brewery location.

The staff of the two locations, Rock Bottom Downtown and Rock Bottom Westminster, will also be hosting ACCO “PJammin” events next week during their December tappings. They are inviting their clientele to join the fun by wearing their pajamas to support a great cause! “PJammin” events are one of ACCO’s signature events where guests and employees wear their pajamas to show support of children with cancer who spend months to years in their pajamas while being treated for childhood cancer. These events will be tied into the two location’s special “tapping.” The Westminster location’s event is on Tuesday December 6^th, while the chain’s first Rock Bottom in Downtown Denver is hosting their big event on Wednesday December 7^th.

For the Wednesday Evening Event,

Rock Bottom Downtown has invited five local childhood cancer families to kick off the restaurant’s sponsorship of each family for the holidays. The families have shared their personal stories about their journey with childhood cancer; a list of suggested holiday gifts for the children and their siblings; and photos that can be viewed at www.acco.org/RBfamilies2016. Rock Bottom Brewery customers and employees are invited to share the holidays with these brave children. Interested patrons simply choose the “wish tags” from the giving tree from each participating locations (Downtown Denver, Westminster, Park Meadows and Orchards) and purchase the gifts, returning them to the restaurants which will be coordinating a “wrapping party” and delivery of the gifts to each local family.

“The families are overjoyed about attending the event on Wednesday night and about everything Rock Bottom is doing for kids with cancer,” says Crisandra Green who heads up Hope 4 Heroes, ACCO’s community-based Founding Hope Fund in the Denver area. Green says the families are open to sharing their stories and doing media interviews so that they can raise awareness of the impact of a childhood cancer diagnosis on the family. (https://www.acco.org/hope4heroes/)

“We are ecstatic to have Rock Bottom Brewery involved with this local event for ACCO,” says Ruth Hoffman, Executive Director of ACCO. “These events create much needed awareness for childhood cancer, and also raise funds to provide resources and support for children and their families currently fighting cancer.”

ACCO is sending two representatives from their National Headquarters in Beltsville, MD to attend each event. There will also be a local professional photographer onsite and the event will be streamed live on ACCO’s Facebook page in front of over 130,000 followers nationwide! (https://www.facebook.com/americanchildhoodcancer/)

About American Childhood Cancer Organization

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:

House approves the 21st Century Cures Act, sending landmark bill to Senate

Posted on December 1, 2016 by maura

ACCO is excited to inform our constituency that the U.S. House of Representatives today approved the 21st Century Cures Act, by a vote of 392-26. This important legislation includes $4.8 billion supplemental funding for the NIH over the next 10 fiscal years, including $1.8 billion in funding over the next seven fiscal years for the cancer “Moonshot” initiative; an additional $500 million to the FDA over 10 years to move drugs more quickly to patients while maintaining safety and efficacy and reauthorization of the Creating Hope Act until 2020 – a voucher program to enhance drug development for rare pediatric diseases including childhood cancer! The legislation is scheduled to be considered by the Senate next week, with passage considered to be highly likely. A summary of the legislation prepared by the House Rules Committee can be found here: Download Now

“We are on the cusp of something special — a once-in-a-generation opportunity to transform how we treat disease,” said Representative Fred Upton (R-Mich.), who marshaled the legislation through the House. “With today’s vote, we are taking a giant leap on the path to cures.” Read More

ACCO is grateful to Representatives Michael McCaul, G.K. Butterfield and Chris Van Hollen for their dedicated work as they championed bills to protect children with cancer and other life threatening illnesses. We are also grateful for the leadership of Chairman Fred Upton, Ranking Member Frank Pallone, Speaker Paul Ryan and Minority Leader Nancy Pelosi in bringing 21st Century Cures to a successful vote.

We ask that you take a few minutes to reach out to the Representatives above and to the House Representatives in your community who supported this bill to say, “Thank you!”

Click here to read more: https://www.acco.org/blog /house-approves-the-21st-centu ry-cures-act-sending-landmark- bill-to-senate/

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:

Light Up the Holidays with Hope with the 2016 National Childhood Cancer Awareness Tree!

Posted on November 28, 2016 by maura

2016 National Childhood Cancer Awareness Tree

ACCO is very pleased and excited to announce that the 2016 National Childhood Awareness Tree will be proudly displayed this holiday season at Marina Park in Newport Beach, California. The 23-foot-high tree honoring children whose lives have been forever altered by childhood cancer will be a prominent feature of the 108^th Newport Beach, California Holiday Boat Parade, complete with a tree lightening ceremony and fireworks! ACCO and the City of Newport Beach hope you will join us from Wednesday, December 14 to Sunday, December 18 to participate in this very special event.

The holiday festivities at Newport Beach will begin on December 14 at 4:30 with family activities such as face painting, caricature artists, and vendors selling tasty treats. At 6:10, the 2016 National Childhood Cancer Awareness Tree will be lit during a special commemorative ceremony, followed by an amazing fireworks show. The holiday festivities will continue at Marina Park as visitors are encouraged to view the beautifully-lit houses surrounding the Park and wait for the arrival of the Boat Parade, scheduled to come past Marina Park at 8:40pm. The Tree will remain on display throughout the remainder of the Boat Parade festivities through Sunday, December 18! This event is free of charge and open to the public.

What is the National Childhood Cancer Awareness Tree?

The holiday season can be an exceedingly difficult time for families whose lives have been forever altered by childhood cancer. Since 2000, ACCO’s annual “Awareness Tree” has honored childhood cancer warriors by decorating a holiday tree with gold ribbons bearing the name, age, and state of children affected by this terrible disease. The 2016 Awareness Tree will stand tall at Marina Park in Newport Beach, CA displaying thousands of beautiful gold ribbons, each a tribute to an amazing child.

If you would like to honor a child who is fighting or who has fought childhood cancer with a gold ribbon on the 2016 National Childhood Cancer Awareness Tree, we ask you to place your order by Sunday, November 27. You will be asked to select the number of ribbons you would like, then add the child’s name, age, address, and an optional tribute for each ribbon. The tributes will be shared weekly on ACCO’s website. Please note that friends and family may purchase more than one ribbon per child. If you would like, the ribbon(s) will be returned to you in January.

To have your child’s name honored with a gold ribbon on the 2016 Awareness Tree, please be sure to place your order by Sunday, November 27. Click here for the order form.

What is the Boat Parade?

We would like to thank the City of Newport Beach, California and the Newport Beach Chamber of Commerce for making the 2016 National Childhood Cancer Awareness Tree a special part of its annual holiday festivities! The Newport Beach Boat Parade is one of Southern California’s premier holiday events and has even been hailed by the New York Times as “one of the top ten holiday happenings in the nation”. We are honored to be part of such an exciting and special holiday event!

The Boat Parade features almost 100 beautifully-decorated boats of all shapes and sizes, from yachts to kayaks. The parade of boats begins off Bay Island and slowly makes it way around Newport Harbor, offering amazing viewing locations, free of charge, from nearly anywhere around the Harbor. Many homes around the harbor are decorated as well as part of the Ring of Lights; participating homes and boats are eligible for prizes for best decorations! The parade starts at 6:30 every night for five nights: December 14 through December 18. The lighting of the 2016 National Childhood Cancer Awareness Tree, followed by fireworks, will kick off this year’s Boat Parade on December 14!

ACCO invites all who can to join us on Wednesday, December 14 at 6:10 for the tree lighting ceremony, fireworks, and Boat Parade. Information on travel, accommodations, and best viewing locations can be found at the Boat Parade’s official website: https://www.christmasboatparade.com/.

About American Childhood Cancer Organization

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: