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Gold Ribbon Hero Layla’s Story

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Layla’s Story

Today, we would like to introduce you to Layla. Layla is a strong, courageous four-year-old who has been battling a rare, inoperable brain tumor for the past 15 months. Diagnosed at the age of two, Layla’s tumor has not responded to “traditional” chemotherapy-based treatments, and her family now faces the daunting prospect of attempting less well-known options, some well-researched and some still experimental, in the on-going search for an effective weapon against this devastating disease. In the meantime, they take every day as it comes, finding tools and resources to help Layla cope with the difficult days and sharing her smiles and giggles on the good ones. We hope you will join us in offering Layla and her family our support as they embark on this next stage of their cancer journey.

Juvenile Pilocytic Astrocytoma

20160908_132323Layla has Juvenile Pilocytic Astrocytoma, a rare brain tumor that grows in the supportive tissues of the brain known as astrocytes. In Layla’s case, the tumor is located on her brainstem, blocking the natural flow of cerebral spinal fluid. At the time of her initial MRI, the spinal fluid had begun to fill her brain causing headaches and mobility issues, and eventually leading to “life-threatening” pressure that required emergency surgery to drain the fluid and relieve the pressure.

Because of its location on the brain stem, oncologists could not surgically remove the tumor without risking Layla’s life. Another traditional tool in the fight against brain tumors—radiation—is not appropriate for children Layla’s age due to the extreme risk of severe brain damage. Still, the prognosis was hopeful: JPA is usually a benign, “low grade” tumor that Layla’s team felt would probably not grow. They placed a permanent shunt to enable the normal drainage of spinal fluid around the tumor, with the expectation that it would last for 10-15 years. Layla would receive an MRI every three months for the first year to monitor the tumor, with the frequency of MRIs decreasing over the years.

20161013_115549Unfortunately, the complications began almost immediately. First, Layla’s shunt over drained, causing massive bleeding. Two months later, the shunt failed to drain again, leading to more hydrocephalus. Another couple of months, another malfunction: Layla was back in the ICU for a failed shunt, hydrocephalus, and now bleeding as well. Each of these complications required emergency surgery to relieve the hydrocephalus, then additional surgeries to repair damaged tissue and replace the shunt.

20160908_134459Throughout this difficult period, routine scans of the tumor showed good news: as expected, the tumor was not growing. Yet once again, Layla’s family learned just how quickly bad news can follow good: just two weeks after a positive scan, another follow-up scan showed 25% growth in the size of the tumor. Layla immediately began chemotherapy through a clinical trial. Unfortunately, after three months of chemotherapy, it has now become clear that Layla’s tumor is not responding and she has been taken off the chemotherapy in order to avoid the potential for negative side effects.

Hero Beads and Port-a-Cat: “Life Changing” Resources for Layla and Her Family

img_9759As difficult and as devastating as this journey has been for Layla and her family, they have found much-needed help and support from friends and family, as well as tools and resources to help them cope. ACCO’s informational booklets have helped Layla’s parents navigate the incredibly difficult world of childhood cancer, while Layla loves Marvelous Marleigh, the only age-appropriate book Layla’s mother could find to help Layla understand what was happening to her. And perhaps most importantly, as her mother notes, “Cozy the Port-a-Cat was a life-changing therapy tool for her and her ACCO blanket is her most coveted comfort item.” Each time Layla visits the hospital, Cozy is treated like a patient, too, with his own regimen board just like Layla’s!

And Layla and her family have been able to document Layla’s journey with ACCO Hero Beads. Choosing a Hero Bead for every procedure gives Layla a sense of accomplishment and a feeling of ownership over her individual story; her Hero Beads provide a meaningful way to visually represent what she has gone through over the past 15 months. ACCO Hero Beads can be purchased individually or in bulk from our store; 100% of the proceeds continue to fund ACCO’s programs to help and support kids with cancer and their families! For more information about ACCO’s Hero Bead powerful program, we encourage you to visit our website at:  https://www.acco.org/hero-beads/.

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.

 

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:

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

 

Today marks the beginning of Childhood Cancer Awareness Month, September 2016

Each September we hope to raise much needed awareness for childhood cancer and we can’t do that without your help. To start, please take a moment to share this page on your social media profile, in an email or however you would like with your community by copying and pasting this website address https://www.acco.org/blog/childhood-cancer-awareness-month-2016/. Then, learn about the many ways that you, your family and friends, and your community can help:
Childhood Cancer Awareness Month 2016

The Gold Ribbon: The international awareness symbol for Childhood Cancer is the gold ribbon. Wear or display a gold ribbon for everyone to see this month. Put a gold ribbon car magnet on your car, share gold ribbon stickers, wear a gold ribbon pins or make your own gold ribbon Add a gold ribbon to your social media images and add a gold ribbon emoticon to your posts and status updates. Provide gold ribbons for your child’s school, for your fellow employees at your place of work and/or for your church or other group. Click Here to learn more about the Gold Ribbon.

Go Gold®: Change you profile, cover and header images on your social media to gold or gold themed images. Ask everyone you know to show their support by changing their images to gold themed images. You can also wear gold, host a “Go Gold®” event or think of any creative way to share gold this September. Although many colors were considered, gold was agreed upon as the ideal choice for childhood cancer awareness because gold is a precious metal, and is therefore the perfect color to reflect the most precious thing in our lives—our children. Click Here to learn more about Childhood Cancer Awareness Month. (“GO GOLD®” and “GO GOLD for Kids with Cancer®” are registered trademarks of ACCO. ACCO registered the marks to protect the identity of the gold ribbon and GO GOLD expression and its derivations to the childhood cancer cause.)

Wearing Awareness Items: Wearing awareness items such as our awareness shirts, gold ribbons, “Go Gold®” bracelets, gold pins or other awareness items items. Our awareness shirts and items support ACCO’s programs and help us to provide free resources to families facing a childhood cancer diagnosis. Many of our shirts feature thousands of names that each represent a precious life and an entire community of people whose lives have been forever changed by childhood cancer. Click Here to see our 2016 Go Gold Awareness shirts (only available until September 12th) or Here for other awareness items.

Host an Event: ACCO offers many ways for individuals, corporations, schools and any other groups to host ACCO signature events to help support children and teens with cancer. We help organize your event, provide prizes and event materials, a website portal for groups, team and/or individuals to collect donations, and depending on the size of your event, provide marketing options. Click Here to learn how to get involved.

Supporting the STAR Act: What could be a better way to kick off September as Childhood Cancer Awareness Month than adding your support to the most comprehensive childhood cancer bill ever in US legislative history: the STAR Act! We need your help reminding Chairman Upton that this bill is important and that it deserves a hearing! Click Here to learn more about how you can help.

There are so many wonderful and creative ways to help raise awareness about Childhood Cancer, and we are honored to help you however we can. If you would like to learn more or discuss your ideas about raising awareness this month, please feel free to Contact Us Here. We can’t wait to help you Go Gold® for kids with cancer this September! Please take a moment to view all of the many options on our website.

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.

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

 

imageCongratulations to Lance on his Graduation from High School

We would like to extend our heartfelt congratulations to Lance R. on his graduation from high school this month! A major accomplish in the life of many teens, for Lance, this month’s graduation ceremony was especially meaningful. Lance spent a year and a half battling osteosarcoma, a form of bone cancer. Now, after months of difficult chemotherapy and two major surgeries, Lance has achieved his goals of beating cancer AND graduating with honors! He is looking forward to heading off to college, choosing a major, and continuing to pursue his love of music on the guitar and drums.

Congratulations, Lance! We wish you the very best as you face the next phase of your life with confidence!

Lance’s Story

13153309_10206320761639889_906870231_n (1)Lance’s cancer journey began when he was 16. What started as minor leg pain continued to grow stronger and more focused in the left knee until, after an unexpected fall, he was no longer able to move or bend the left knee without pain. After an x-ray and MRI, he received the dreadful news in October 2014: the tests showed a tumor on the left distal femur, the bottom end of the thigh bone, just above where it meets the knee joint.

Lance began chemotherapy with a fairly standard “MAP” treatment, a powerful drug cocktail of high-dose methotrexate, doxorubicin, and cisplatin, tailored to slow the tumor’s growth and prevent it from spreading. By January 2015, Lance’s doctors were encouraged—the tumor in his left leg had shrunk, and four small lesions in his lungs had disappeared—yet Lance’s treatment was by no means finished. The second phase of his treatment required surgical removal of the tumor, the affected bone and knee joint, and replacement of the bone and joint with an internal prosthetic knee (limb-saving surgery—LSS).

Unfortunately, no cancer journey is ever straight-forward and Lance’s journey was no exception. The high dosages of toxic chemotherapy drugs required to fight the cancer led to serious heart problems and an alternative drug combination had to be found for the final two rounds of chemotherapy in July 2015. In February 2016, he underwent revision surgery to correct his prosthetic knee to ensure that it kept up with his rapid growth. He faced months of difficult rehabilitation therapy to, literally, learn how to walk again on the new leg bone and knee joint. Yet throughout it all, Lance’s mother Sharon proudly notes that he never gave up!

Cancer in Teens and Young Adults

Lance’s story is important because it shows us a different face of childhood cancer: the face of adolescence. The face chosen to represent childhood cancer is often that of a young child. Yet so-called “childhood cancer” also affects teens and young adults; osteosarcoma, for instance, makes up about 2% of all childhood cancers and usually (although not always) develops between the ages of 10 and 30. And treating cancer in teens and young adults presents different physical and emotional challenges than younger children. For instance, teenagers often want to be treated as adults and resent and potentially even resist treatment in pediatric-focused oncology centers. Yet because the cancers they face are very different than adult cancers, effective treatment requires expertise in pediatric oncology. Some hospitals have responded to this challenge by creating separate wings within the pediatric department geared specifically for adolescents and young adults.

Cancer diagnosis and required treatment also makes coping with the physical and emotional difficulties of adolescence even more difficult. After all, the hormonal, physical, and emotional changes associated with puberty can be traumatic enough without the additional feeling that your body has “turned against you” or “betrayed you” from the inside. Common side effects of chemotherapy, such as hair loss and weight gain, can make it especially difficult for adolescents to take pride in their appearance, while long hospital stays and enforced absence from school and social activities can make it nearly impossible for a teen battling cancer to feel connected to their friends and peers. Even things that may seem minor to an adult—like not being able to practice driving, as noted by Lance in a January 2015 YouTube video—can exacerbate the feeling of isolation that can be so problematic for many teens.

Yet Lance’s story also shows us that even with all the emotional turmoil and physical hardship that childhood cancer can have for a teenager, courage, determination, and a fighting spirit can overcome so many obstacles. As Lance graduates this month and looks forward to life in college and beyond, he and his mother hope that Lance’s story can show other families facing a similar journey the importance of staying focused and positive, and above all, never, ever giving up!

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.

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