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Gold Ribbon Hero Mason G

Gold Ribbon Hero Mason G

Reason this person is a Gold Ribbon Hero: Mason was a beautiful blue eyed boy with the biggest heart and most compassionate soul. He was diagnosed with brain cancer at the age of 11 and died from it 11 months later at the age of 12. His short life touched many and continues to do so. He loved his family and friends fiercely and his spirit lives on in those who love him. Mason always had a hug for everyone and was a friend to all. We honor Mason’s memory through his foundation by raising awareness, furthering research, and increasing funds for childhood cancer, especially brain cancer. We also offer help to others on this journey supporting them spiritually and financially as well as giving back to the community by granting scholarships.” – Monica G

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Gold Ribbon Hero Katherine K

Reason this person is a Gold Ribbon Hero: I cane across Katherine Kings story one day while scrolling through instagram. One photo among many caught my eye. A mothers agonizing cry, as she held on to her lifeless 6 childs body. Jaime King was the first parent I had ever seen strong enough and brave enough to share the graphic, gut wrenching and ugly truth about childhood cancer. I was captured by her story. Even though i never met Katherine, I felt like I knew her from the photos and captions her mother Jaime described. I felt every emotion. I couldnt ignore Katherines story and I became more and more aware about the tragic reality of childhood cancer. DIPG in this case. She shared videos and photos of Katies very last moments and touched so many hearts. If you search on instagram #KatherineTheBrave and scroll back to June you will see exactly what I mean. She also has a facebook Katherin The Brave.” – Chika A

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Gold Ribbon Hero Sawyer R

Reason this person is a Gold Ribbon Hero: Sawyer’s smile lit up an entire room. He never lost his joy for life even in his last days. Because Sawyer was so brave, he helped me find courage in myself through hard times. He never failed to try to cheer up his family and friends through the hard times and any time I face adversity I think “What would Sawyer do”. Forever 9 and forever the bravest 9 year old I will ever meet.” – Karyssa P

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Gold Ribbon Hero Cari C

Reason this person is a Gold Ribbon Hero: When Cari’s daughter Charlotte was diagnosed at 15 months old with hepatoblastoma she set out on the most difficult journey a parent should never have to endure. Cari has made it a mission through this journey to raise awareness for childhood cancer. She spreads the word through 2 Facebook accounts and even drives a van with large stickers on the windows, that not only raises attention for her sweet Charlotte Reece but every child who has been dealt the unfortunate hand of cancer. Cari is inspiring because at times when even the toughest person would crumble, she is giving encouraging words and saying “we will beat this”. This past February, when Charlotte’s cancer returned for a second time, Cari took a deep breath and walked back into the ugly unknown world of cancer again. She is a pillar of strength, courage, poise, and love… Even if at times she doesn’t know or feel it. She takes each blow as they come, stands back up and comes back stronger than before. Her strength is contagious and her love is out of this world. It is never easy to explain why someone is extraordinary but spend 2 minutes in the room with this woman and anyone can see why she is the true definition of a hero.” – Becky T

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Gold Ribbon Hero Michelle W

Reason this person is a Gold Ribbon Hero: Michelle was a top athlete in 8th grade. She was rapidly become excellent in tennis. But her biggest passion was basketball. She was the quickest point guard out there. At one point she had an injury in her knee, but the pain continued way longer than it should have. Doctors just recommended more physical therapy. But eventually Michelle’s mother begged to have a MRI done on Michelle’s leg. There they caught the sliver of tumor on the MRI. Michelle had a tumor the size of a softball on her right hip bone & that was causing the increasing pain in her leg when she was playing basketball. Osteosarcoma caused her whole life to get turned upside down. As she start chemo, she had to stop going to school, stop seeing her friends, and she couldn’t play basketball. She spent her 8th grade senior night sitting on the bench watching her teammates play her favorite sport. Six months later, the chemo had stopped the growth of the tumor but it hadn’t shrunk. Doctors told her the only way to remote it would be to remove the entire leg, bikini line down. If she did this, then she’d be able to survive. If she kept the leg, then it’s only be a matter of time before the cancer spread. So on June 14, 2015, 9 days after her 15th birthday, michelle went into surgery.  It is now August 2016, over a year past her surgery. Michelle can keep up with anyone on her crutches. She doesn’t need help getting to her room on the second floor anymore. And she’s even learning to walk on her brand new prosthetic. The best part about it, is that through the whole process of chemo, surgery, and learning to get her lie back, she’s kept a positive attitude about it all. She jokes with nurses, makes jokes about her missing leg, and keeps everyone smiling. Today she’s reminder to everyone that anything can be overcome. And she wants to give back too. She and her sister have designed a gold tshirt in honor of childhood cancer awareness and are in the process of raising money and adding childhood cancer awareness to Michelle’s highschool and schools around her. Even though she can’t get back on the basketball court anymore, she continues to go out to the tennis courts to practice her swings because she still wants to play her sports. She’s an inspiration to all.” – Vanessa W

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Gold Ribbon Hero Annabelle T

“Reason this person is a Gold Ribbon Hero: Annabelle was a four year old blond curly haired little girl who believed she was both princess and superhero. In November of 2015 she was diagnosed with high risk B cell acute lymphoblastic leukemia. Throughout treatment Annabelle has been the epitome of courage and grace. She has fought cancer like a warrior and truly inspired so many people with her continued positive spirit and morale. She will begin maintenance treatment this month and will be able to return to school and dancing. As she continues the fight to  be cured of this terrible disease we are in awe of this little princess warrior. She amazes us with her wonderful attitude and a awesome spirit.” – Victoria T

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Gold Ribbon Hero Addison’s Story

Addison’s Story

Addison’s cancer journey began in 2014, at two-and-a-half years of age, when her family received the terrible diagnosis that Addison had a rare disease called Langerhans Cell Histiosytosis, LCH or “Histio” for short. Today, at age five, Addison’s scans continue to show “No Evidence of Disease” and she prepares for the next stage of life: kindergarten! In the words of her mother, Addison is “a true warrior… She handles her disease with grace and the strength of ten warriors!”

What is Langerhans Cell Histiosytosis?
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Langerhans Cell Histiostosis is a rare disease occurring in less than 1 out of every 200,000 children. It is caused by the excess growth of immature Langerhan cells, a type of white blood cell used by the body to fight infection. When these cells accumulate in certain areas of the body, they can form tumors or lead to organ damage. In Addison’s case, the build-up occurred near her eye, resulting in extreme swelling. She immediately underwent eye surgery to remove as much of the tumor as possible. A pathology of the excised tissue after the surgery revealed LCH as the cause of the tumor.

Despite the fact that LCH begins with abnormal cell growth, a traditional marker of cancer, medical experts disagree as to whether LCH is truly a form of “cancer”. Yet in Addison’s case, the debate was academic. Her LCH was diagnosed as “high-risk” because it developed in her skeletal structure (the bone around her eye). The treatment recommended by her medical team mirrored treatment for childhood cancer: surgery to remove the tumor, followed by chemotherapy to target any remaining abnormal cells and to prevent the growth of new tumors. Addison’s treatment also involved regular injections of steroids in addition to the chemotherapy.

Addison required a year of intensive chemotherapy to destroy the remaining abnormal cells, and two years later, regular scans continue to show No Evidence of Disease. Unfortunately, however, LCH can result in chronic and long-term medical conditions, including Diabetes Insipidus (a rare disease that impacts the ability of the kidneys to properly regulate urine output), hearing loss, vision problems, and neurological problems such as poor coordination, unusual eye movements, and memory loss. Addison and her family continue to work with her medical team to diagnose and understand the long-term consequences of this disease, coping with each as they arise with determination and a fighting spirit.

The Journey Through School

Addison LCHIt’s an exciting landmark in the life of every five-year-old: the first day of kindergarten! Whether it is the first day of school, or the first day back after a long hospital stay (all too common for many childhood cancer warriors), starting or return to school presents both an exhilarating and terrifying benchmark. Children who have been isolated from friends and school are eager to reestablish friendships and meet new friends and once again participate in the “normal” social activities school presents. Yet the strain of returning to a regular routine and learning to integrate into a group setting can also be unsettling and cause emotional and behavioral issues, at least in the short term.

For parents, starting or returning to school presents another series of unknown, and often unanticipated, challenges. An increased level of anxiety is perhaps first on the list. Addison’s mother notes:

Addison is getting ready to start school. She is super excited, but me…not so much. I am very nervous about her being away from me and [being] around other kids and germs. Her disease makes me overprotective. I am trying to let her be a normal kid though. I know these are my own issues, not hers. She knows she is capable of great things and being healthy and strong. I pray for my own issues today because Mommy just isn’t ready to let my princess grow up yet.”

Ensuring that the school system and individual teachers are educated about Addison’s cancer, the special requirements she may need to help ensure school is a success, and the short- and long-term health ramifications can be equally difficult. Addison’s mother was quickly reassured by Addison’s new teacher’s warm and caring demeanor: “he seems like he is going to be very protective of her, too.” Addison’s mother has taken care to work closely with the school so they are aware of Addison’s illness, and has even taken the additional step of asking the American Cancer Society to send information into the classroom to help educate her classmates. It will be critically important for Addison and her family to continue this close, cooperative relationship with both the school system and the teachers to ensure that Addison’s educational, as well as her health-related, needs are met today and into the future.

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.

To submit a Gold Ribbon Hero’s story, please Click Here

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:

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Gold Ribbon Hero Lisa T

“Reason this person is a Gold Ribbon Hero: Her Granddaughter Nova Jo was diagnosed with Acute Lymphoblastic leukemia B Cell,when she was 4 she is now 6.  She is currently in remission with only two chemo therapy sessions left.  I do not know her entire story.  I do know she has been there supporting her and her family through her  journey.  She is a Strong woman and so loving and kind.  She does for others before doing for herself.  She is a great friend of my Mothers and my long time friend Cindy as well.  I have only met her via Facebook due to me being in Florida for my Brain Injuey Therapy.  But she has been there to speak to me daily and inspire me as well through my tough time.  She is a great woman.  I can only imagine how amazing of a grandmother she is and Mother she is as well.” – Nena W

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AUGUST 12TH IS THE LAST DAY TO ORDER YOUR 2016 GO GOLD® AWARENESS SHIRT

2016 GO GOLD® AWARENESS SHIRT

 

Since we received approximately 5,700 names, we have to divide them onto four different shirts. When ordering the shirts please be sure you are selecting the correct shirt. Names are in alphabetical order by last name or initial. For siblings, cousins or friends, the names have been placed together in order to print on one shirt upon special request, however a duplicate of that name will also be in alphabetical order for those who submitted the name separately. If you have sent a special request for this, please check the list to see if the names are together and what shirt they are on.

 

All edits and additions that were received before the deadlines of August 3rd have been added to the master list. Please be sure to check the additional tabs at the bottom of the list to see what shirt your requested addition was added to.

 

Please email cperry@acco.org with list any questions.

To review the list of names click the links below:

 

Shirts will be available for purchase until midnight EST on August 12, 2016. Please note that the list(s) is complete and contains ALL submitted corrections. Names used in the design thumbnail is not the actual list. The final list, with all edits and additions has beed updated and loaded to the document for review as of today, August 8th. Absolutely no further changes can be permitted for this run.
We’ve collected names on a per project basis and did not carry names over from project to project. If your child’s name is on this shirt or previous shirts, but you would like their name to be on the 2017 ICCD that will be available in January 2017 for International Childhood Cancer Day (February 15, 2017), please submit their name again using this link or the button below. Please note, starting on the 2017 ICCD campaign, we now have the option to carry names over, so please type “Yes” or “No” for the question “Save Name for Future Projects” on the submission form. We will only be collecting names using this link or the button below to help streamline the process.
Shirts ship only after the campaign ends (August 12, 2016), and usually require approximately two weeks for delivery. Please note we are also now able to ship internationally to: Australia, Canada, China, France, Germany, Ireland, Italy, Malaysia, Spain and the United Kingdom.
Our goal is to have the shirts processed and delivered before Childhood Cancer Awareness Month, September 2016. Once you receive your shirt, we ask that you please try to wear your shirt as much as possible during this month, take a photo and email it to cperry@acco.org or post on our Facebook Page so that we may share the photo in our 2016 Go Gold Awareness Shirt Photo Album.
Thank You,
The Team at ACCO
 
Shirts are available for purchase until August 12, 2016. If you are receiving this email, you will also receive a text message with updates and notifications about the shirt campaign and a reminder about purchasing the shirts before the deadline. For any questions, please reply to this email and we will gladly help you.
Contact us at 1-855-858-2226
 

 

Golden Ribbon Hero Baby Crom’s Cancer Journey

Baby Crom’s Cancer Journey

13699939_952087518250211_951032198123412583_nCromwell’s cancer journey began on January 17, 2014 when he suffered a severe stroke that left him paralyzed on the left side of his body. Unsure of what caused the stroke, Cromwell, or “Baby Crom” as his family and supporters affectionately call him, returned home with his family until February 9, when he began urinating blood and blood clots. Rushed to the hospital for an ultrasound, the physicians found a mass in his left kidney. Follow-up scans the next day discovered more bad news: the tumor in the kidney had spread to the lungs. Surgery was scheduled immediately; on February 14, 2014, Baby Crom underwent surgery to remove the tumor, his entire left kidney, and three smaller tumors in the abdomen.

13321808_922669414525355_6675768700301221992_nFour days later, as Baby Crom recovered from surgery, his parents were given the diagnosis: Stage IV Nephroblastoma, also known as Wilms Tumor, a form of kidney cancer diagnosed in about 500 children every year. Cromwell’s parents were devastated; after all, they knew that a diagnosis of “Stage IV” cancer in adults means the cancer has metastasized, or spread, so extensively that successful treatment is extremely difficult. The prognosis in Baby Crom’s case was not so dire, however: the oncology team explained that Stage IV indicated that the tumor had spread beyond the kidney but was still potentially treatable with surgery and chemotherapy. Moreover, Baby Crom’s tumor was considered “favorable”, meaning that it did not show very much anaplasia and would likely respond well to treatment (in tumors with an “unfavorable” histology, the cancer cells’ appearance vary widely and tend to have very large, distorted nuclei; these anaplastic tumors often prove more resistant to treatment).

After surgery, Baby Crom underwent six months of chemotherapy targeting the tumors in his lungs, as well as radiation treatments targeting the area of the left kidney to destroy any remaining cancer cells left behind after surgery. Nine months after his stroke, eight months after his surgery and diagnosis, Baby Crom scans showed “No Evidence of Disease”!

Baby Crom and “The Many Adventures of Cozy the Port-a-Cat”!

13626564_952087414916888_4004278296311372285_nThe “port”, or “port-a-cath” is a standard element of every childhood cancer patient’s story. Chemotherapy is administered directly into the bloodstream, yet because of the intensity and frequency of the treatments, using standard intravenous delivery can be extremely uncomfortable, especially for young children. Instead, doctors surgically implant a “port” into the chest or upper arm that enables them to safely and comfortably deliver medications and draw blood without requiring needle insertion. The ACCO developed “Cozy the Port-a-Cat” to help children understand the port and other medical procedures, alleviating some of the fear and anxiety that often accompany the many medical procedures childhood cancer patients face during and after treatment.

Baby Crom developed a very special relationship with both his Port-a-Cat and, in fact, with his port! Shortly after what his family called his “second chance day”—the second anniversary of his initial surgery—Baby Crom underwent a second surgery to remove the port. Baby Crom, however, was extremely resistant to removing the port. As his mother noted, “His port has become so much a part of Baby Crom’s life that he struggled to part with it. He insisted the port was ‘his’ and he didn’t want the doctors to take it away from him.” So his oncology team respected his wishes; after removing it, they saved it, sterilized it, and returned it to him in the mail!

12592502_893019624157001_9066056604263362996_nToday, Baby Crom and his family continue to cope with late effects from both the stroke and cancer, as well as celebrate the standard milestones of childhood. He no longer requires speech therapy. He continues with physical therapy to regain mobility and strength on the left side of his body, and was recently fitted with a new leg brace to keep up with his rapid growth. Swimming, gymnastics, and even horseback riding with therapy horses have all played a huge role in helping him overcome the physical challenges left behind by the stroke. Unfortunately, he continues to struggle with pulmonary issues, potentially due to asthma and allergies, as well as the effects of the tumors in his lungs. At times, he has struggled with infections; because he now has only one kidney, the heavy use of antibiotics can be problematic. Yet throughout his entire cancer journey, Baby Crom’s family has been inspired by his fighting spirit, by his unwillingness to let anything get in the way of his natural childhood exuberance and joy!

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: NoteStream