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Gold Ribbon Hero: Kyler

Gold Ribbon Hero: Kyler

Meet Kyler, a monster truck loving, lego building typical 4-year-old who has been diagnosed with Acute Lymphoblastic B-Cell Leukemia.31944601_173105830075845_49972262316539904_n

In October 2017, Kyler started having unexplained fevers in the evening for approximately three weeks. He then began suffering from leg pains in the middle of the night. The pains were so severe that he would cry all night long and refuse to walk. His mother, Ashley, decided to take him to the pediatrician. The doctor performed labs on Kyler and he was referred to a specialist for possible juvenile rheumatoid arthritis. Subsequently after, he was referred to an oncologist. The oncologist scheduled a bone marrow biopsy confirming Ashley’s worst fear. 31890379_172294093490352_2536333782068232192_n

On November 21, 2017 Kyler was diagnosed with Acute Lymphoblastic B-Cell Leukemia. “Our visit with the oncologist was the longest 2 hours of my life. At that time, most of out family was in town for Thanksgiving. We made a decision to wait until the day after Thanksgiving to admit Kyler. On 11/24/17, we were at the hospital at 5 am for Kyler to have a port placed and was admitted to Beverly Knight Olson Children’s Hospital to begin treatment” remembers Ashley, Kyler’s mom.

Kyler is undergoing aggressive treatment consisting of chemotherapy given through a port, intrathecal chemotherapy, chemotherapy pills and steroids. His protocol and treatment progresses through phases; induction, consolidation/intensification and maintenance. As a result of the treatment, “Kyler has developed a foot drop in the right foot and peripheral neuropathy from Vincristine,” Ashley said. He is in physical therapy for his foot and now in speech therapy as a result of the neuropathy drug Neurontin. Kyler is suffering from PTSD as a result of the traumatic process and takes antidepressants to help him self-regulate. Currently, he’s waiting for occupational therapy because of weakness in his arms and hands due to neuropathy.

29261076_159889458064149_7602691828793475072_nWhen treatment began, Kyler could not comprehend what was going on, but now one year older, and Kyler can express his feelings about treatment and cope. Ashley said, “Over the last three months, Kyler has really began to cope with the disease. He has began to talk about his feelings and is understanding more and more. We try to explain things to him in a way he can understand.”

Kyler began pre-kindergarten last August, and he loves his teacher and school. He is enjoying interacting with others and going to the playground. Kyler loves the beach and playing outside and in the mud. He loves playing with his transformers toys, dinosaurs and searching for bugs. Kyler is one tough warrior saying “because I’m brave and do my port, I don’t ever give up, because I’m KylerStrong.”

He is currently in treatment at Beverly Knight Olson Children’s Hospital in Macon, Georgia.

You can follow Kyler’s story on Facebook at @kylerwpike

Donate today to help cancer fighters like Kyler: https//www.acco.org/donate

 

Gold Ribbon Hero: Abby

Meet Abby, a 7-year-old childhood cancer warrior and artist at heart. Her sweet and determined disposition have helped her fight for her life against Medulloblastoma. 40760380_463842710777846_4158830190065090560_o

When Abby was just 6-years-old, her parents began to notice some changes in her concentration which led doctors to evaluate her for ADHD. After several failed medications and Abby complaining she didn’t like the way they made her feel, her mother Debbie decided to discontinue use. After Abby’s condition worsened, her parents took her to see the pediatrician. Their pediatrician was concerned so they recommended a neurological consultation. While waiting for the neurologist to come in, Abby got sick several times but the doctor brushed it off. The pediatrician followed up with the family that night and urged Debbie to get Abby to the ER that evening for a CT scan.

cancer11-900x1200On May 3, 2018 Abby was diagnosed with a tumor in her brain. Debbie remembers, “We went into this room that felt like it was smaller than a cardboard box. That is when I heard the words, ‘Your daughter has a tumor in her brain. From where it is, I am thinking it is a cancer that children are known to get. I screamed, ‘No no no no!’ I left the room and went outside and screamed into the silent parking lot. I couldn’t breathe, my heart felt like it might burst. I called my mom and we cried together. I felt my whole self being thrown into a hellish nightmare, one I couldn’t leave, but one that could possibly take my beautiful daughter away. I don’t know how, but I came back into the room.”46181743_496829864145797_7322393381064146944_o

After collecting herself, Debbie went back into the room and looked at Abby. She took a deep breath and prepared to tell Abby what was going on. Innocently, Abby looked at her mom and said, “Are they going to get it out?” Abby was then transferred to  C. S. Mott Children’s Hospital in Ann Arbor, Michigan where surgeons quickly performed a biopsy and treatments began the very next day. On May 7th, just four days after being diagnosed, doctors performed a full resection of her brain taking four hours to complete. As a result of the brain cancer, she has a condition known as Pos Fossa syndrome – effects that will never go away. She experiences delayed learning, anger, frustration and confusion.  Abby decided that if she couldn’t use her right hand, she would use her left and retrain her brain.

45077174_489260818236035_4009411868429910016_oRadiation started just after Abby’s 7th birthday. After a few treatments, Abby’s scalp began to become sore so Debbie knew it was time to cut her hair shorter. Later, the radiation would take her hair. The harsh treatments made Abby see flashes of light and smell weird smells. These treatments required her to be face down and strapped to a board, which Abby did not like. Abby was able to ring the bell on July 19th after 30 rounds of radiation. On August 28, 2018, Abby started maintenance chemotherapy which will last until July 2019.

Throughout treatment, “Abby has remained an amazing pillar of positivity and courage,” according to Debbie. She struggles with not being able to go to school and misses her friends but she is maintaining her positive attitude.  “She’s my shining star. My superhero and when she smiles it lights up my heart and the room. We will fight and we will win.”50539603_531112880717495_3955202831329263616_o

You can follow more of Abby’s story on her facebook page: https://www.facebook.com/Abbys-Army-Fighters-463842050777912/

To support childhood cancer fighters like Abby: https://www.acco.org/donate/

 

What is the expected prognosis for a child with a spinal cord tumor?

spinal cord tumorsBefore beginning a discussion of general statistics relating to spinal cord tumors, it is important to note up front several key issues.

First, oncologists do not generally distinguish between benign (non-cancerous) or malignant (cancerous) spinal cord tumors. Both kinds can be extremely dangerous, and even deadly. The spinal cord is a critical piece of the body’s central nervous system, and as tumors grow (whether benign or malignant) and press on the delicate tissues of the spinal cord, they can significantly compromise the functioning of this critical organ. For this reason, oncologists prefer to use the term “tumor” versus “cancer” when discussing “cancers” of the spinal cord.

Second, together the brain and the spinal cord comprise the central nervous system. Therefore, oncologists generally classify tumors of the central nervous system as one group and most statistics include both spinal cord tumors and brain tumors. As one group, tumors of the central nervous system are the second-most common type of cancer in children (after leukemia), accounting for about 25% of all childhood cancers. Within that broad category, tumors of the spinal cord are significantly less common than brain tumors.

Third, as with most types of childhood cancer, oncologists rarely use the term “cured”; instead, key statistics relating to prognosis are given as “5-year survival rates”. This term refers to the number of children who have survived at least five years after their initial diagnosis. However, it is only a general statistic and does not in any way predict an outcome for any one child. Each child’s individual prognosis depends on that child’s prognosis factors, their specific type of spinal cord tumor, and the child’s response to treatment.

What are the prognosis factors for spinal cord tumors in children?

The good news is that with advances in medical technology over the past decade, treatment options for children diagnosed with a spinal cord tumor are more focused, more powerful, and overall more effective, thereby increasing 5-year survival rates for many types of tumors. In general, about 3 out of 4 children with a tumor of the central nervous system will survive more than 5 years. However, this simple statistic hides a great deal of variation between specific types of tumors.

As noted above, each child’s “life expectancy” after diagnosis depends heavily on a unique assessment of his or her prognosis factors. These “prognosis factors” help determine the unique treatment approach, as well as potential for long-term survivorship. In general, the key prognosis factors for most types of brain and spinal cord tumors include:

  • The type of tumor
  • The tumor’s size at diagnosis
  • The tumor’s location at diagnosis
  • How quickly the tumor is growing (it’s “grade”)
  • How much of the tumor can be removed with surgery (if surgery is possible)
  • Whether the tumorous cells have certain gene mutations
  • Whether the tumor has spread to other parts of the central nervous system
  • Whether tumorous cells have spread beyond the central nervous system
  • The child’s age at diagnosis
  • The child’s functional abilities as impacted by the tumor at diagnosis

 

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 ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

Gold Ribbon Hero: Taylor

Screen Shot 2019-02-11 at 10.49.42 AMMeet Taylor, 16-year-old ambitious designer and entrepreneur. Taylor was determined to live life to the fullest, and wanted to be known as “a kid with cancer, never a cancer kid.” She didn’t want cancer to define her. Devastatingly, she passed away after a five year battle with cancer. Sue, her mother, said, “Taylor believed in life that all you need is love, and her memory is indelibly imprinted onto the hearts of everyone she left behind.”

In 2003, Taylor was diagnosed with Mesenchymal chondrosarcoma, a malignant type of cancer of the cartilage. Sue remembered, “all day long I had felt frozen and trapped in time, not hearing, seeing, or feeling much of anything, unable to process what was happening. My husband, Bob, was the strong one from day one. He turned his fear, grief and sadness into drive and determination to save Taylor, against the odds. He researched all night, found doctors worldwide to speak with and pushed every button he could. As a result, Taylor outlived her prognosis 4 years.” 0 copy

Taylor was originally diagnosed with osteosarcoma and started treatment immediately. The protocol that the initial hospital performed did not work and they gave up on treating Taylor. Sue, Taylor’s mom, decided to switch her to another hospital. When Taylor relapsed, three and a half years later, they found out that she was misdiagnosed. The family sought out for several more opinions at many U.S. hospitals and when treatments were no longer available they took her to Germany and the United Kingdom.

Two days before Taylor’s graduation party, she began losing her hair. Determined to make sure that everything was perfect for her daughter, Sue recalls asking another friend’s mother what she should do. On a moment’s notice, she [the other parent] purchased bandanas for all the girls to wear so that Taylor would feel more comfortable at the party. A few days later Taylor asked her dad to shave her head and Taylor didn’t shed a single tear.

0-2In an excerpt from her book, “Paint Your Hair Blue, A Celebration of Life with Hope for Tomorrow in the Face of Pediatric Cancer” Sue writes: “Taylor’s life was not only about what she accomplished, but also about what she left behind. Her boundless optimism, even at the bleakest moments, and her zest for life, even as death neared, taught me more about love than I thought there was to know. Taylor believed in life that all you need is love, and her memory is indelibly imprinted onto the hearts of everyone she left behind.”

During an interview, Taylor talked about how she had received generosity from her friends. “When I was first in the hospital, my room turned into a garden with so many flowers.” She received so many stuffed animals and even a song was written in her honor, “Everything’s okay when you’re with Tay.” This outpouring of generosity helped Taylor get through the first couple of months in treatment and helped her feel just a little bit better. She was so inspired by these gestures that she started a business while undergoing treatment, called “Tay-Bandz.” She created accessories that she would sell and then donated the money to pediatric cancer research. Taylor didn’t want anyone else to go through cancer so she said, “knowing that they may be getting treatments that I funded the research for, it’s really great.” The foundation has been renamed to “The Taylor Matthews Foundation” and is dedicated to raising awareness and funding for pediatric cancer research. 0

For more information about Taylor and her foundation: http://taylormatthewsfoundation.org

Would you like to nominate your own Gold Ribbon Hero?: https://www.acco.org/gold-ribbon-heroes/

Donate to cancer fighters like Taylora at: https//www.acco.org/donate/

 

Gold Ribbon Hero: Nicholas DaSilva

Meet Nicholas, a 10-year-old who fought and beat Non-Hodgkin’s Burkitt’s Lymphoma.unnamed-1

During the second week of Kindergarten in September 2013, Nicholas started complaining of extreme pain during urination, so his mom decided to take him to the doctor. The Da Silva family was told he was fine and were sent home. About a week later, he started to complain that his belly was hurting. He was taken to Chilton Hospital where an x-ray was performed and misdiagnosed with constipation. He was prescribed medication and told that it was a stomach bug. Several weeks passed and the family was very concerned that his stomach bug wasn’t going away. On November 12, 2013, Patricia (Nicholas’ mom) noticed a bump on his stomach. The next day, the family looked at his belly and noticed it had extended more. Nicholas was rushed back to Chilton Hospital where they did a CT scan and within minutes the emergency room doctor said they had found a mass in Nicholas’ abdomen. Nicholas was diagnosed with Non-Hodgkin’s Burkitt’s lymphoma on November 13, 2013.

unnamed-2“It is hard to imagine what I felt. It was as if someone took my breath away and I found myself struggling just to breathe. As parents we don’t have the luxury of falling apart, and I quickly rallied to ask about the x-ray done in September when I was told that my son was constipated. They pulled the x-ray and the mass was in the same place that they misdiagnosed as constipation” remembers Patricia.

Treatment began at Goryeb Hospital in Morristown with surgery and chemotherapy. After three long months, they had finally found the source of Nicholas’ pain. The treatment was aggressive – seven rounds of chemotherapy – but the initial protocol failed to eradicate his tumor. His pediatric oncologists extended his protocol to include four additional courses of high dose chemotherapy.

On May 5, 2014 Nicholas went into remission! Now the fifth grader loves to play soccer, play video games and watch YouTube videos. He also enjoys hanging out with his friends. He’s doing excellent in school making honor roll in the first marking period and well on his way to honor roll for his second marking period.

The DaSilva family felt so compelled after going through this journey that they established a Founding Hope Fund with the American Childhood Cancer Organization. “Our kids need to be heard and as parents, we need to be those voices for our children.” The “Kid Nicholas Going Gold 4 Kids” Founding Hope fund recently inspired a bipartisan resolution sponsored by Senator Steve Oroho to promote education and awareness about childhood cancer. Read the full article about this decision, here. unnamed-3

For more information about “Kid Nicholas Going Gold 4 Kids” Founding Hope: www.acco.org/kidnic

To follow their Facebook Page: @bethevoiceforchill

Would you like to start your own Founding Hope: www.acco.org/foundinghope

American Childhood Cancer Organization Applauds Increased Funding for Childhood Cancer Treatment Pledge in State of the Union

February 6, 2019 – Washington, D.C. – The American Childhood Cancer Organization (ACCO) today released the following statement from CEO Ruth Hoffman on President Trump’s State of the Union pledge to include $500 million in the budget for increased funding for childhood cancer treatments.

“American Childhood Cancer Organization’s (ACCO) Gold Ribbon Hero and Amazon + ACCO’s 2018 Ambassador Grace Eline attended the State of the Union at the U.S. Capitol last night as a guest of the White House. Her attendance and recognition demonstrates the growing awareness of childhood cancer as a child health priority in the U.S. and around the world.

Cancer is the number one disease killer of children in the U.S. and the majority of childhood cancers have not seen new therapies in decades. As a result, young patients often endure toxic treatments that were primarily developed in the 1960’s, ’70’s and ’80’s or face a devastating lack of treatment options at all. The President’s pledge for increased funding specifically aimed at improving the treatments available to young patients is critical to growing survival numbers and enhancing quality of life for our nation’s youngest cancer fighters.

The President also expressed an intention to protect patients with pre-existing conditions. Three out of five pediatric cancer survivors will suffer long-term effects of their treatment including diabetes, secondary cancers and organ failure. We hope that the Administration and Congress will work together to support young cancer patients now and protect their access to health care as they age.unnamed

We are heartened by the President’s commitments to pediatric cancer expressed during last night’s State of the Union address. We encourage Congress and the Executive Branch to work together to support kids like Grace now and improve their chances for long and healthy lives in the future. ACCO looks forward to providing continued leadership in this process.”

About the American Childhood Cancer Organization

As the oldest and largest grassroots childhood cancer organization in the U.S. and the only U.S. member of Childhood Cancer International, ACCO is dedicated to fighting cancer, the number one non-communicable disease killer of children in the U.S. and around the world.

American Childhood Cancer Organization Gold Ribbon Hero to Attend 2019 State of the Union Address

Grace email blast white big logoAmerican Childhood Cancer Organization Gold Ribbon Hero to Attend 2019 State of the Union Address

February 5, 2019 – The American Childhood Cancer Organization (ACCO) is proud that ACCO Gold Ribbon Hero Grace Eline will attend this evening’s 2019 State of the Union address as a special guest of the President and First Lady.

Over the past year, Grace has bravely battled Germinoma brain cancer.  She recently finished chemotherapy and currently shows no evidence of the disease.  Grace’s story was featured in 2018 as a part of the ACCO Gold Ribbon Hero Program.  The program – recognizing the gold ribbon as the international symbol of childhood cancer awareness – celebrates the patients, family members, medical practitioners and others who are the warriors on the front lines of childhood cancer.

“Grace is a model of strength and perseverance and an inspiration to everyone in the childhood cancer community and beyond,” said ACCO CEO Ruth Hoffman.  “Her attendance at this evening’s speech reflects the growing awareness of childhood cancer as a health priority across the U.S. and around the world.  We are pleased to be a part of sharing Grace’s story and to be leading the way with patients, families, the medical community and policymakers in the fight against childhood cancer.”

In addition to her role as an ACCO Gold Ribbon Hero, Grace is also one of the 2018 Amazon + ACCO Ambassadors, helping to bring attention to the disease and increase funding for treatment and cures. Amazon, the world’s largest online retailer, is a multi-year partner of the American Childhood Cancer Organization.

“Everyone who knows Grace would tell you that she has always been special,” said Grace’s mother Aubrey Eline.  “Wherever she goes, she brightens the room with her kind heart and infectious smile.  Throughout her treatment, Grace stayed positive and strong, making the rounds in the hospital, cheering up other patients, and always having a smile for the many caring medical professionals who treated her.  Today, she is determined to help other children who are fighting cancer.”

As the oldest and largest grassroots childhood cancer organization in the U.S. and the only U.S. member of Childhood Cancer International, ACCO is dedicated to fighting cancer, the number one disease killer of children in the U.S.

ACCO applauds recent bipartisan cooperation in Congress to advance legislation like the childhood cancer Survivorship Treatment Access and Research (STAR) Act which was signed into law last summer and increases funding for research into and treatment for pediatric cancer and takes steps to improve the lives of young survivors.  Going forward, ACCO calls on the Administration and Congress to continue to work together to support kids like Grace now and protect their access to healthcare in the future.

Donate to support ACCO and other cancer fighters like Grace: https://www.acco.org/donate/

Nominate a Gold Ribbon Hero: https://www.acco.org/gold-ribbon-heroes/

For more information on Amazon + ACCO: http://www.acco.org/amazon

Gold Ribbon Hero: Jake

Munnamedeet Jake, a master builder, explorer and a creator who was taken too soon.  Jake had an “imagination like no other and he loved an adventure. He loved hiking, exploring old abandoned railroads and creating” recalls his mother, Sandy. He loved “legos, building blocks, sticks, rocks, you name it and he could make something out of it.” 

Jake and his family took a celebratory vacation to Puerto Rico during the summer of 2017. That August, Jake had signed up for a community camp which was different than his normal routine because he had left public school to attend a school intended for children who learn differently. On the first day of camp, Jake was complaining about a pain in his shoulder. On the third day of camp, Jake went coming home complaining of his shoulder. His parents took him to the doctor and it was a wait and see situation. By the end of the week, Jake’s shoulder was still bothering him, so his family took him to the ER. The ER performed a chest x-ray which, at first, was clear. After being sent home, four hours later Jake’s mom got a call saying that “the radiologist was going over his pictures and found a large mass in his chest. I was stunned After that call, it was a flurry of rushing off to children’s hospitals for tests.” Two weeks later, Jake was diagnosed with Peripheral t-cell lymphoma, NOS which is extremely rare cancer in children. unnamed-1

Jake’s cancer is so rare that “of all the children who have been diagnosed, there were no two cases alike,” Sandy said. “Jake sailed through his rounds of treatment like a champ. He handled it so much better than we ever expected. He was so brave.”

The following January, the doctors had started preparing him for an autologous stem cell transplant when they found that the cancer had started to grow again. The stem cell transplant was put on hold so that he could start new therapy. Since the cancer was so rare, the doctors were trying to figure out the next steps.

The treatment caused complications with Jake which ultimately cost Jake his life. “He went on to fly with the dragons on February 9, 2018.”35529168_388604158296286_2134616518686670848_n

Jake’s family set up a Founding Hope Fund through the American Childhood Cancer Organization. The McHugh’s are determined to help fund pediatric cancer research while also assisting families financially in their time of need. They decided to call their foundation, “Jake’s Dragon Foundation” (JDF). Jake had a mild form of autism called PDD-NOS and ADHD and felt that dragons protected him. His “imagination and ability to fantasize helped him cope with his difficulties,” said Sandy. JDF hosts many awareness events and fundraisers in Pennsylvania including Light it Up Gold and the push up challenge.32503724_372930106530358_4806649655033069568_n

To learn more about Jake’s Dragon Foundation: https://jakesdragonfoundation.org

https://www.facebook.com/jakesdragonfoundation

To donate to JDF: https://give.acco.org/give/182363/#!/donation/checkout