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Gold Ribbon Hero: Walker

Gold Ribbon Hero: Walker

Meet Walker, a 15 year old osteosarcoma warrior. 

On December 14, 2021, Walker found out that he was battling osteosarcoma after a bike injury. He wasn’t too worried because his half sister had gone through cancer treatments, and he knew that if she could get through it then he could too. 

Treatment started immediately and Walker received 3 chemotherapy rounds. He also underwent a biopsy and amputation of his left leg. 

Walker is currently continuing his treatment through October and getting used to his prosthetic leg. Please help ACCO in sending well wishes to Walker and his family. 

Together, we can make a difference. Donate today, “because kids can’t fight cancer alone!®”
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4 Ways to Keep Your Community Involved

 

During your child’s journey, it can be difficult to keep your community updated, especially between multiple doctors appointments and treatments. Apps like GoFundMe and other various sites can help by simply sharing a website and following along.

Take a look at the following links to help spread the word on your child’s journey today:

  • Post Hope: This site provides users tools to create their own website to update friends and family about status. You can upload photos and other relevant information which can all be shared to social media. Community members can show support by adding posts, reading a journal entry, view important dates on the calendar and give a donation directly to the family.

 

  • Give Forward/GoFundMe: Tell your story and add pictures/videos that can be shared with family and friends. Collect donations and thank your community.

 

  • Lotsa Helping Hands: This site not only organizes a care calendar (for rides, meal delivery and appointments), but also takes comments (like well wishes) and includes a photo gallery. This platform focuses solely on coordination, communication and support from the community. More than 2.1 million meals have been delivered and 822K child care shifts have been covered as a result of this site.

 

  • Caring Bridge:  This all in one platform has many different features including personalized to-do lists, custom care plans and a calendar. Other features include a medication list, document storage, wellness journal, preparedness checklists and secure messaging to all village members.

In addition to the online resources listed above, make sure to register for ACCO’s free resources. Our book “Along the Way,” helps document the journey and keep all of your important documents in one place.

Gold Ribbon Hero: Evan

 

Meet Evan, an 8 year old DIPG warrior.

When Evan started demonstrating balance and speech difficulties accompanied by headaches and lethargy, his parents took notice. They took him to the pediatrician who advised them to take him to the emergency room. An on call doctor told the family that night that Evan had a brain tumor, but couldn’t give any other information. The next day, Evan was diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG. “We were told he had about nine months to live.” 

Treatment started immediately and to date, Evan has undergone three separate rounds of brain stem radiation, participated in two clinical trials and had a brain biopsy. 

Evan loves legos and baseball, reading and spending time with friends and family. “”We are extremely grateful that Evan has responded so well to radiation. He is almost three years post diagnosis, which is not common. Evan was able to go back to school and play sports for over two years. This past fall, he started having increasing symptoms and is now on hospice care.” 

Currently, Evan is stable but on hospice care. He is no longer able to walk, communicate well or eat solid foods. 

UPDATE: On June 10, 2022, Evan passed away. 

Donate to help kids like Evan, because kids can’t fight cancer alone!®

Brain cancers account for about 15% of pediatric cancers and are the second most common type of cancer in children. May is Brain Tumor Awareness Month and May 17 is DIPG Awareness Day

Gold Ribbon Hero: Elin

 

Meet Elin, a 6 year old glioblastoma warrior.

In December of 2021, Elin started developing evening headaches and intermittent nausea and vomiting not associated with diarrhea. On the day of her school Christmas party, Elin told her mom she didn’t want to go and that raised a red flag to her mother. Elin’s mother, Elizabeth took her to the emergency room where they ran tests. “They asked me to talk privately in a consultation room and told me the news that no one ever wants to hear.” 

Elin was diagnosed with glioblastoma just eight days before Christmas. “On one hand we felt relieved for a reason for her headaches, but disbelief/shock and overwhelming sadness for the tumor diagnosis and fear for the future.” Her diagnosis showed a devastating pathological tumor which required traveling to different cities for treatment. She’s endured two craniotomies, a port placement, many MRI’s, radiation and chemotherapy. 

Through her treatments, “Elin has not really complained. She was having headaches more consistently prior to her diagnosis but we didn’t fathom the severity. She recovered so well from surgery given how ill she was. She has never questioned why we have done all of the radiation treatments and oral medications. She just knows that we love her and want her to get poked and prodded. She trusts us in this. She has needle and band aid phobia but endures the discomfort and manages to be happy every day.” 

Elin enjoys running and singing. According to her mom, she secretly loves rap music. She is happy to eat a hamburger every day and loves to travel. Currently she is receiving oral chemotherapy agents in a clinical trial for the next 18-24 months. 

Donate to help kids like Elin, because kids can’t fight cancer alone!®

Brain cancers account for about 15% of pediatric cancers and are the second most common type of cancer in children. May is Brain Tumor Awareness Month. Learn more by clicking here.

Gold Ribbon Hero: Caden

 

Meet Caden, a 9 year old pineoblastoma brain tumor survivor.

In the fall of 2019, Caden started suffering from vomiting and headaches. “We thought he just had a stomach bug because he wasn’t feeling well for a few days. He woke up one morning in so much pain so we took him straight to the emergency room. The doctor immediately did a CT scan and saw a brain tumor. We were transferred to a different hospital where they got him on the schedule for his first surgery.” Caden was 7 years old when he was diagnosed with a pineoblastoma brain tumor. The diagnosis left the family shocked, sad, terrified and speechless.

During his journey, Caden had several surgeries during his journey including a full tumor resection, third ventricular bypass, biopsies, eye surgery and port placement and removal. He completed 15 days of radiation to the brain and spine and 15 days to the brain. Caden completed four cycles of chemotherapy. During treatment, COVID limited the visitors and left Caden feeling very isolated. “We, along with the rest of the world, were completely isolated. Not just isolated from our family and friends, but isolated from our home and safe place. Caden went four months without seeing his brothers. It was just awful. He would cry at night, not because he felt terrible, but because he missed his brothers. He was a great support to his friends at St. Jude.” One friend’s mother even said that Caden saved her son’s life since he too was away from siblings for a long period of time. 

“Caden’s treatment is over, hopefully forever. As of right now, we travel to Memphis every four months for follow up appointments and scans.” Caden enjoys playing with friends and especially his brothers. 

Donate to help kids like Caden, because kids can’t fight cancer alone!® 

Brain cancers account for about 15% of pediatric cancers and are the second most common type of cancer in children. May is Brain Tumor Awareness Month. Learn more by clicking here.

Gold Ribbon Hero: Rickie

Meet Rickie, a 4 year old acute lymphoblastic leukemia warrior!

When Rickie started suffering from a low grade fever and severe exhaustion, his parents took notice. “I remember talking to doctors prior to diagnosis and asking about the worst case scenario” remembers Rickie’s mother. 

Rickie’s treatment consisted of chemotherapy and after he had an allergic reaction to one type of chemo, he was changed and has done extremely well since then. During his cancer journey, he has undergone several spinal taps. 

Currently, Rickie is in remission, he loves play doh, scooters and outside toys. He enjoys playing with his twin brother and older sister. 

To learn more about ALL, please click here

Donate today, to help kids like Rickie.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
Donate to ACCO

Gold Ribbon Hero: Geno

Meet Geno, a hepatocellular carcinoma hero.

In March 2010, Geno had constant fevers, bloody noses and a shoulder ache so his parents took notice. Geno was originally diagnosed from blood work with hypercalcemia and was transferred to a children’s hospital to be treated. The doctors performed tests which revealed a liver problem and ordered an ultrasound.

“Once we finally got a diagnosis, he was given a 50% chance if they were able to remove the tumor. When the tumor was removed, he lost too much blood in surgery and went into organ failure” remembered Katy, Geno’s mother.

With hepatocellular carcinoma, surgery is the sole treatment as it does not respond well to chemotherapy.

“Geno is my hero, everyday I wish he was here with me, his sister, grandmas. We miss him terribly, but I know he was a gift. He loved baseball, football but his family most of all. He loved life to the fullest and when he walked into the hospital before surgery, he looked at me and said, ‘let’s do this!’ He never woke up after that surgery.”

During Geno’s journey, he survived more than 10 surgeries in three months. One surgery lasted 15 hours where doctors removed two thirds of his liver. Geno gained his angel wings in June of 2010.

 

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
Donate to ACCO

Gold Ribbon Hero: Maeve

Meet Maeve, a 10 year old acute lymphoblastic leukemia (ALL) survivor!

After a week of fevers, bloody noses and extreme fatigue, Maeve’s parents took her to the doctor. Her parents were convinced that it was Lyme’s disease. She was diagnosed with ALL on May 22, 2018. Treatment consisted of chemotherapy and she just celebrated one year off treatment this past July! 

She survived and thrived through eight months of surgeries, chemotherapy, diabetes and tremendous muscular pain. “Maeve is a force of nature in her cheerfulness. She is the greatest friend you can ever imagine and bounces in sheer happiness. She survived a horrible beginning phase and became temporarily diabetic. She has endured so much in this horrible disease and still thinks of only giving to other kids. Maeve is devoted to raising awareness for kids not yet diagnosed and volunteers when she can,” said Marissa, Maeve’s mother. 

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
Donate to ACCO

Gold Ribbon Hero: Sydnie

Meet Sydnie, an 18 year old Hodgkin’s lymphoma survivor!

Sydnie was sick off and on for two years with various ailments including sinus infections, strep throat, upper respiratory infections and stomach bugs. She didn’t feel like herself and one morning her mother, Meg noticed that the side of her neck was swollen. After numerous appointments with doctors and specialists, countless scans, and meeting with a surgeon and oncologist, the diagnosis was clear – Sydnie had Hodgkin’s Lymphoma Stage 2B. She had a large mass pressing on her heart and airway. 


“We pretty much already knew but didn’t. We met with the surgeon who did a CT scan and as soon as he showed us the CT, we knew. Sydnie came walking back into the room and saw us upset so she started to get upset. She asked what was wrong, so we told her. She asked if she was going to die, and we told her ‘no.’ We told her she was going to be really sick for a little while and may lose her hair but she was not going to die,’’ said Meg, Sydnie’s mother. 

Treatment began immediately and she was set to have six months of chemotherapy and ten days of radiation. After two months of chemotherapy, she was responding very well and after six months of chemo, the oncology decided she didn’t need radiation. During her treatment, she had several surgeries including a lymph node removed, port placement and removal and bone marrow removed from her hips. She has endured high anxiety, depression and bullying. 

“Sydnie is full of life and an unbelievably strong willed young woman who marches to the beat of her own drum. When she was diagnosed, she insisted on having funky pjs for the hospital and dying her hair because she knew she was going to lose it. Once her hair started to fall out, she decided to shave her head because ‘cancer wasn’t going to tell her when she was going to be bald.’”

In 2016, Sydnie was declared NED and now continues to have yearly appointments with her oncologist. 

UPDATE from Meg in November 2021: Sydnie, 18, is now a senior and thriving in her classes. Her favories are forensic science, chemistry and cybersecurity. Sydnie spent her summer break as a volunteer in the labs at the Georgia Cancer Center and has future plans to become a forensic pathologist. In her spare time, she loves playing video games and enjoys spending time with family, friends and her dog, Niko. 

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

NOMINATE GRH
Donate to ACCO

American Childhood Cancer Organization: Supporting Families for More than 50 Years 

 

For 52 years, the American Childhood Cancer Organization (ACCO) has been dedicated to making childhood cancer a national health priority.  Since 1970, ACCO has worked hard to shape policy, support research, raise awareness and provide educational resources and innovative comfort programs to kids with cancer, survivors, and their families.  

ACCO’s comprehensive list of resources, tools, and specialized networks helps the family cope with the medical, emotional, and psychological repercussions of childhood cancer. All resources are distributed free of charge to children with cancer and their families. 

Books are provided to help children cope with the confusing and upsetting changes they are experiencing as they battle childhood cancer. “Along the Way, Documenting My Child’s Cancer Journey,” is one of the essential books in ACCO’s collection. This book provides a way to document medical treatments, hospital contact information, and a place to take notes. 

In total, 13 books are distributed from ACCO which appeal to a range of ages and interests. In the “Chemo, Craziness and Comfort,” book, kids can learn more about their journey in words they can understand. ACCO also distributes a book that is solely focused on Diffuse Intrinsic Pontine Glioma (DIPG), a devastating form of brain cancer. This book was co-written with a mother who had a son with DIPG. 

In an effort to empower children to become more comfortable in a hospital environment, ACCO developed a medical play kit that encourages play therapy. This kid-friendly kit facilitates a dialogue with children and creates a bridge between hospital and home by demystifying some of the treatment procedures. By allowing children to become more familiar with the medical devices found in the medical play kit, they become more mentally prepared for what they will encounter during upcoming tests and cancer treatments, lessening the fear of the unknown.  “Thank you for the medical kit and toys ACCO! It’s important for Remy to not fear these medical tools,” said Melissa Dingmon. 

Even on the darkest days, ACCO’s resources help to bring smiles to the faces of cancer’s littlest patients. “We had to pick up Anthony early from school because he was feeling sick. He was so sad about missing another day of school, but we came home to this sweet package. Thank you ACCO,” said Martha Castro. ACCO’s official mascot, Cozy the Port-a-Cat helps to bring smiles too. “Thank you for your awesome care package and fun Cozy the Port-a-Cat. Your foundation has brought big smiles to Wilson’s face. It’s wonderful to have the support and caring of others and it is so special to see how much people care,” said Bill Floyd.  Cozy the Port-a-Cat features strategically placed patches that represent port access, bone marrow aspirate, spinal tap, gastronomy tube, and a hand IV. If children are nervous or unsure about treatment, Cozy can have the procedure first to show them how it works. 

ACCO takes time to recognize all family members, whether it’s the parents, the patient, or siblings. “She’s a super sidekick learning and living what it means to be a cancer sibling,” said Staci Salazar after snapping a photo of her daughter coloring in ACCO’s “Color Me Cozy.” In addition, “Oliver’s Story, For Sibs’ of Kids with Cancer” focuses on the many questions that siblings have when their sibling is diagnosed with cancer and offers constructive ways on how they can provide support. 

Through generous donations from outside partners like La Roche Posay, ACCO is able to provide emotional support kits in resource packages. Kids can use emojis to let their caregivers know how they’re feeling instead of telling them “on a scale of one to ten.” 

ACCO’s roots are deeply planted in the advocacy community and in 2021 with the expansion of their “What About Kids?®” initiative, ACCO has proven that states play a critical role in overcoming the national disparity between adult and childhood cancer research, treatment, and support. ACCO was able to secure $30 million in additional research funding in three states which is as much as the annual Federal funding appropriated through the historic Childhood Cancer STAR Act. In 2021, the What About Kids?® started twice-monthly webinars to train advocates across the country to advocate for the cause alongside ACCO’s leadership. 

Support from ACCO comes in many forms. Through the Founding Hope program, children and their families are given a platform to give back to the childhood cancer community. In total, ACCO has 32 Founding Hopes across the United States. Founding Hopes can be found doing many things around their communities like working closely with legislators, hosting awareness runs, giving back to the hospitals, hosting toy drives, and providing financial assistance to childhood cancer families in their own communities. 

ACCO makes it easy to seek help when needed. Simply log on to acco.org and click “get help.” From there you can register for free resources and learn more about all the wonderful resources ACCO has to offer. 

The above post appears in the Winter 2022 issue of the Cool Kids Campaign Newspaper and written by ACCO’s Public Relations Coordinator, Blair Scroggs.