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Gold Ribbon Hero Brooke S

Gold Ribbon Hero Brooke S

“Reason this person is a Gold Ribbon Hero: Brooke has accomplished so much since she was diagnosed and had her surgery.  She was 11 when diagnosed. She will be 16 in September.  She was recently able to walk the entire survivors lap and walked the caregivers lap back to back for the Relay for life.  Walking had been hard for her.  She has a bright future ahead of her in spite of that ugly thing called cancer. She has had clear scans!!!” – Traci P.

 

 

Brooke

Golden Ribbon Hero Angela’s Story

Angela’s Story

DCP_4957Today, we would like to share with you Angela’s story. Angela is a long-term survivor of neuroblastoma, a form of cancer that originates in the neuroblasts, or early nerve cells, in the nervous system of an embryo or fetus. Yet like nearly 90% of childhood cancer survivors, Angela continues to suffer from late effects, long-term health problems resulting from the toxic chemicals requires to treat and destroy the tumor. Her story shows that for many childhood cancer warriors, the journey is never truly over.

Angela’s Miracle Journey

Angela’s childhood cancer journey began on the first day of spring in 1973, just after her third birthday. During a routine well visit, her pediatrician became concerned after examining her abdominal area. He suggested that Angela and her family go immediately to Henrietta Egleston Children’s Hospital at Emory University for x-rays and a CT-scan. The diagnosis was devastating: stage 3 neuroblastoma, a malignant tumor growing between the abdominal aorta and the kidney. Even for Angela’s father, a general practitioner and former employee at St. Jude’s Children’s Research Hospital in Memphis, the next few days were a blur; years later, Angela’s parents still find it difficult to recount what happened during those days with any clarity.

Treatment for neuroblastoma involved surgery and a year of chemotherapy. Initial scans of the tumor had shown it to have reached stage 3, meaning that it had begun to grow and spread to areas adjacent to the original growth site. In most cases, stage 3 neuroblastoma is extremely difficult to remove entirely through surgery. Yet in Angela’s case, because of the quick thinking of her pediatrician, her neuroblastoma was caught before the onset of symptoms and before it became widespread. Her oncology team was able to successfully remove the entire tumor. In Angela’s own words: “Today, when I see someone who knew what I endured, they say I’m a miracle child and that my life is a miracle!”

Late Effects of Childhood Cancer

Angela endured a year of chemotherapy treatments when she was only three years old. Chemotherapy works by targeting deadly drugs at and near the site of cancerous tumors. These drugs kill cells that are in the process of growing and dividing. Because cancer cells grow and divide more quickly than normal tissue, they are more susceptible to the drugs than healthy cells. Yet children like Angela are still growing and developing, so chemotherapy treatments designed for adults can have devastating, long-term repercussions on the young bodies of childhood cancer patients.

At some point in her adult life, Angela realized that she was having trouble with both her short- and long-term memory. In fact, she cannot state with any certainty when she began to notice that her memory was problematic. By 2008, however, she could no longer ignore the problem, so she and her father visited her oncologist, who informed her that memory loss was a common side effect stemming from the toxicity of childhood cancer treatments. “Chemotherapy took away my ability to drive a car and I’m battling daily problems with memory lapses.”

In March 2011, Angela celebrated her 34-year “cancerversary”, but it was a bittersweet anniversary at best, because in addition to ongoing memory problems, Angela was also battling serious dental issues and problems with her teeth, another very common side effect for children who have undergone lengthy chemotherapy treatments. And just under a year later, Angela was diagnosed with yet another late effect involving an “imbalance disorder.”

It is still very difficult for Angela to think about write about these health problems, to understand why, after so many years, she continues to face ongoing medical issues stemming from a disease she fought more than 35 years ago. And yet she understands that she must face each new battle with the same determination with which she fought cancer: “And so… with lots of help, love, encouragement, strength, prayers and support from my awesome and beautiful friends and family…my life, though very different now, I still go on! One day at a time…one hour at a time!”

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.

 

 

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

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

 

Gold Ribbon Hero Braiden S

“Reason this person is a Gold Ribbon Hero: Braiden was diagnosed with AML leukemia in 7/16/2012. He was 7 years old when he was diagnosed and it literally turned our world upside down. We went from having a seemingly healthy child one day to having a child life flighted to Denver the next. He missed most of his second grade year of school and underwent 5 months of chemotherapy, countless blood and platelet transfusions, 2 flight for life trips to the hospital, a four day stay in ICU due to one of several broviac infections and no immunity, and many days separated from his brothers and his Dad! Braiden is 11 now and in remission since 11/16/2012! We have a little over a year to go before we hear the beautiful words we’ve been so desperately waiting for “Cancer Free”!!! The picture I’ve shared is of my hero today!” – Misty S

Braiden

Golden Ribbon Hero Cy’s Story

Another Face of Childhood Cancer Represented at Jel Sert’s Corporate PJammin’® Party!

ACCO_Chicago061516-2867We would like to take a moment today to thank Cy and his family for their amazing participation in the June 15 corporate PJammin’® event at Jel Sert, a family-owned company that has generously supported the childhood cancer community for many years. At eight years old, Cy received his first cancer-free scans just a few months ago after a two year battle with medulloblastoma! Congratulations to Cy and his family on this incredibly good news, and thank you for helping us raise awareness about the importance of the fight against childhood cancer!

Cy’s Battle: Medulloblastoma

Cy was just six and a half when he was diagnosed with medulloblastoma on May 6, 2014. Medulloblastoma is a malignant brain tumor that originates in the cerebellum, an area at the back of the brain controlling body movement, coordination, and balance. As the tumor grows, it can block the movement of crucial fluids around the brain as well, causing a build-up of fluid and pressure within the skull. Typical symptoms of medulloblastoma include headaches, sleepiness, a lack of energy, vomiting (usually in the morning), changes in vision, clumsiness, and trouble walking.

Cy exhibited none of these typical symptoms before his diagnosis, yet immediately upon receiving this dreaded diagnosis, Cy’s family began to prepare for surgery. Cy’s oncology team urged them to act fast: in about one-third of all medulloblastoma cases, the tumor can spread to other parts of the brain and spinal cord, complicating treatment. Cy had his first surgery to remove the tumor two days after diagnosis. Incredibly, within three weeks, the tumor had regrown more than 100% of its original size. Cy’s family was devastated. Unfortunately, Cy’s oncology team felt that another surgery would be too risky for Cy’s young brain and began preparing for a combination of chemotherapy and proton radiation treatments. Cy was heavily medicated to control pain and discomfort in the interim.

Standard radiation treatment involves directly high levels of x-rays at the tumor. Radiation kills cells as they are in the process of dividing, part of the normal life and growth cycle of any cell. Because cancer cells grow and divide more rapidly than healthy cells, they are more susceptible to radiation than normal cells. However, healthy cells are still damaged by radiation, especially in children, whose young bodies are still growing and developing. To treat his medulloblastoma, Cy’s oncology team utilized proton radiation, which utilizes protons instead of x-rays to generate the high-energy radioactivity needed to kill the cancer cells in Cy’s brain. Proton radiation is believed to cause less damage to surrounding tissue than traditional x-ray radiation therapy.

ACCO_Chicago061516-2852During his treatment, Cy received a total of 29 chemotherapy treatments in combination with 32 proton radiation treatments. This initial treatment was followed up with six cycles of in-patient chemotherapy, which ended in January 2015. This intensive treatment succeeded where surgery did not—by March 2016, Cy’s scans finally showed “no evidence of disease”. Yet the therapy was not without damaging side effects. Since receiving his last treatment, Cy has worked hard in physical therapy, speech therapy, and occupational therapy to overcome the damage to his delicate young brain caused by both the tumor and the treatment. We wish Cy and his family the best of luck as they begin this next phase of his amazing life, and we are certain that whatever life holds for Cy, he will meet it with the same courage determination that he used to battle and defeat medulloblastoma.

 

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

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

 

Gold Ribbon Hero Kendall B

“Reason this person is a Gold Ribbon Hero: The day that we told Kendall that he had cancer, he cried and cried. He began to lift his head and said to us “I’m going to be a superhero and kick this cancer butt. Since that they he hasn’t cried anymore. There are days when don’t feel his best, but he wake up every morning and ask the Lord to give him strength to fight. He tell me some days that he’s tired, but he can’t give up and that he’ll try his best to fight through it. This child inspirer me everyday, I suffer from migraines, but after watching my son fight and pray everydayfor his strength, gives me the energy to fight through the headaches. I tell myself, surely if children can fight the battle of cancer and its treatments, I can most definitely fight through a headache. I nominate Kendall because not only has he inspires adults but children who cross his paths.” – Shaketa B

Kendall

Gold Ribbon Hero Chayston H

“Reason this person is a Gold Ribbon Hero: Chayston, 12, was diagnosed with an AT/RT brain tumor in April of 2015. He’s had radiation, 2 different sessions of chemo and has been NED since May of 2015. He’s taken everything in stride and is doing great! He’ll start back to school full time this fall! He is my amazing hero and my Grandson!!!” – Lisa H

 

Chayston H

Gold Ribbon Hero Allison M.

Reason this person is a Gold Ribbon Hero: Allison went through months of sickness and dead end hospital visits and was near death before her cancer was detected. In March of 2012 At the age of 3, er doctors discovered a soft ball size mass in her chest, it was t-cell non-Hodgkin’s lymphoma. Over the course of her treatment, she went through many hospital stays, anorexia, transfusions, etc. but she never at any point gave up. She fought through everything like a champ. She has been off treatment for 2 years and is still in remission!!!” – Nickie M.

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Gold Ribbon Hero Braxton M.

Reason this person is a Gold Ribbon Hero: Braxton started his journey of A.L.L TYPE B at just six weeks old, And a 20% chance at survival the doctors and nurses told us he probably wouldn’t survive his hard chemo, and by 3 months old they told us he’d be mentally retarded and his motor skills probably wouldn’t come in, He is 18 months old now and walking and talking up a storm, we are so blessed to have all the support we have had and continue to get on a daily basis, his doctor are so amazed by all the mile stones he has over came and is continuing to make he is in complete remission by the first month of treatment, he is such a miracle and I believe he will continue to just go up from here on out.” – Cassidyann M.

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Gold Ribbon Hero Sophia’s Story

ACCO_Chicago061516-2550We would like to extend our thanks to Sophia and her family for helping represent the face of childhood cancer at Jel Sert’s PJammin’® event on June 15. Led by Jel Sert President Ken Wegner, this first-ever corporate PJammin’® event involved the participation of more than 200 Jel Sert employees, as well as Sophia and other children whose lives have been impacted by childhood cancer. Sophia’s participation in this event highlighted the real difference that that these events can have for children battling this devastating disease.

Sophia’s Story: Acute Lymphoblastic Leukemia

Today, Sophia looks like a healthy, active, happy 8-year-old girl. Always “spunky”, as her mother Blanca describes her, in late 2013 Sophia’s parents could tell something wasn’t right. She seemed to have lost that natural spunkiness. Often sick with strep throat, ear infections, colds, and fevers, she simply wasn’t her normal, active self. When her parents noticed a lump under her chin, they took her to the pediatrician, who prescribed antibiotics for a potentially swollen lymph node. When the fevers and lump had not resolved by the scheduled follow-up visit on January 3, the pediatrician scheduled blood work. The results were devastating: Sophia had Acute Lymphoblastic Leukemia, or ALL. The pediatrician told Blanca to arrange care for her other children, pack a bag for Sophia, and bring her to the hospital immediately where an oncology team was waiting to start treatment.

ACCO_Chicago061516-2719“Everything happened so fast but at the same time so slow. All these procedures and medical terms were new to us. We had to make decisions no parents should have to make. We had to hide our worries and sorrow from Sophia and her siblings. The first couple of weeks were very hard.” Blanca describes so well the turmoil of emotions felt by parents suddenly thrust into a whole new world by their child’s cancer diagnosis. Navigating through this new world—coping with informational overload and making critical decisions affecting the health of your child, while at the same time calming your scared, sick child and caring for other siblings—may be a parent’s worst nightmare.

Sophia’s chemotherapy began immediately with surgery to place a port-a-cath, or “port” for short, a surgically-implanted catheter that enables chemotherapy to be administered directly into the bloodstream while reducing the need for needles and IVs. Unfortunately, the treatment didn’t progress as smoothly as Sophia’s oncology team and family hoped. First, her platelet counts were too low, so she required several blood transfusions. She was finally able to go home, only to return because the site of her port became infected. The port was surgically removed, but Sophia was left with an open wound that required her to remain in the hospital for several more weeks. Another surgery to place a second port was more successful, this time healing properly so it could function throughout the remainder of her treatment. As Blanca so eloquently states: “Her little body took a lot, with the surgeries, open wound care, and all the hard blood draws due to her small veins. It was torturous for her and us.”

When Sophia was not in the hospital, she endured months of isolation at home to avoid the risk of infection due to a compromised immune system. She missed preschool and many months of kindergarten. Still, her family attempted to maintain as “normal” as life as possible, and even welcomed the birth of a new little brother, Lucas (as if coping with childhood cancer were not difficult enough, Blanca was five months pregnant at the time of Sophia’s diagnosis). Helping Blanca care for Lucas made the time at home pass more easily for Sophia!

An Ongoing Journey

Sophia’s treatment for ALL ended in April 2015 and despite frequent testing—a common part of every childhood cancer survivor’s life after treatment—she has finally recovered her normal “spunky” nature! Her mother credits her for being so brave, cooperative, and helpful through every stage of this difficult journey. Sophia and her family understand that childhood cancer is an ongoing journey, but are thankful that they can fight it together as a family; as Blanca notes, “We are all in this together!”

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.

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

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

Gold Ribbon Hero Abigail R.

Reason this person is a Gold Ribbon Hero: Despite being given a 3% chance of beating cancer at the age of 11 months old, Abigail over came the odds and entered remission. Since then, Abigail has graduated from Elementary School and is soon to graduate Middle School. Although she is still unable to read up to grade level or speak at age level, Abigail still fights everyday to succeed. Abigail never gives up no matter what she is faced with. Since entering remission, Abigail has been diagnosed with countless side effects from her chemotherapy. Regardless of what she is faced with, she always pushes through. Abigail is the strongest little girl and nothing will stop her. Currently, Abigail is undergoing radiation again for a skin disease which is still undetermined weather it is a side effect from the chemotherapy.” – Kate R.

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