September 30, 2020 is #RareCancerDay! National Organization for Rare Disorders and the Rare Cancer Coalition invite you to spread the word about rare cancer and the emerging treatment tools currently available. Visit bit.ly/RareCancerDay20 to learn more.
Join NORD’s Rare Cancer Day webinar here today at 2pm!
Follow NORD here:
Facebook: @NationalOrganizationforRareDisorders
Twitter: @RareDiseases
LinkedIn: @NationalOrganizationforRareDisorders
Instagram: @nord_rare
Meet Elizabeth, a determined Neuroblastoma warrior with a magnetic personality. 
In January 2016, Elizabeth was diagnosed with Stage 4 High Risk Neuroblastoma. Leading up to her diagnosis, Elizabeth was an active child and participated in many activities including dance, 4-H, and running. After running a 5k, she was limping and her brother tried helping by releasing the lactic acid in her legs. The pain was unbearable which caused her mother to take notice. At that point, her parents took her to the doctor who diagnosed her with Iliac Apophysitis. She was allowed to go back to school and resume activities. This pain plagued her for nearly seven months on and off she treated according to doctors orders. She was an athlete, she was tough! While her parents were out of town for her brother, she was in dance class and collapsed unable to walk due to unbearable pain. Her parents considered options calling a bone specialist when the pain switched hips within a few days. The doctor advised if the pain was no better in two days to give the office a call. The next day, Elizabeth was begging to go back to the doctor. Mom’s gut feeling was it was cancer and urged for a second opinion. The bone specialist said she’d need an MRI to rule out cancer and it needed to be done soon.
Elizabeth and her family traveled two hours to St. Louis to see an athletic specialist who could research her symptoms further. The staff at the hospital said it would be two weeks before an MRI would be done and Elizabeth’s mom, Jennifer, wasn’t taking no for an answer. The MRI revealed that there was a change in the bone and that it was indicative of Lymphoma. This news came to the family as they were shopping in a local mall. When Elizabeth’s father, Matthew, received the news, he dropped to the floor, shocked. Jennifer immediately knew it was bad news.
“He said he got a phone call and that the doctor had gotten back to him and that I had cancer. The first question I asked was if I would be able to dance again” Elizabeth remembers, when hearing about her diagnosis.
Elizabeth was admitted to the hospital to have the broviac inserted and started chemotherapy almost immediately. “Walking into the oncology floor was like walking into another world,” remembers Jennifer. When the family got the final diagnosis, they informed the family that it was High Risk Stage 4 Neuroblastoma covering 95% of her body.
As a result of treatments, side effects were extremely harsh and hard to handle, one such effect left Elizabeth’s body moving uncontrollably for hours on end. When her body finally calmed down, she needed to go to the bathroom. When she stood up, she immediately fell because she was paralyzed. Doctors couldn’t explain or answer when or if she would regain feeling in her legs. The treatments that were initially used on Elizabeth were too aggressive on her and she was experiencing crippling side effects. Elizabeth has been through more than 100 rounds of chemotherapy, photon/proton radiation, hair loss, partial resection of her softball size tumor, partial paralysis, degenerative hearing loss, decreased lung capacity, balance and short/long-term memory issues that affect daily life/educational skills, compression fracture of her spine and a stint in the ICU. Her bravery and strength shine through because of her positive attitude to keep fighting. 
The community rallied around Elizabeth while she was in treatment during the school year by allowing her to attend classes online. Elizabeth’s tenacious attitude is felt in all areas of her life; she loves dance and competing in pageants. In the summer of 2016, just a few months after being diagnosed, she planned on competing in the Jr. Miss pageant but unfortunately had to have a bone marrow transplant the same week. The pageant crew invited visiting royalty to sign cards that were later sent to the hospital allowing Elizabeth to be an honorary contestant. They made shirts that said “Team Elizabeth.” She was able to “attend” the pageant via FaceTime despite being in her hospital room.
After 18 months of treatment following the COG Protocol for Neuroblastoma, Elizabeth’s scans came back showing that the cancer was still present. The oncologist told the family in so many words to make every day count. At that point the family decided to try alternative medicine.
Through physical therapy, Elizabeth has been able to return to dance with the approval from her doctor. Elizabeth completed 100 days of isolation which helped her regain strength and work towards her goals even harder than before. At the end of the day, Elizabeth wanted to be back dancing, doing what made her most happy. Elizabeth received a standing ovation at the Jr. Miss Pageant after dancing to the “Fight Song” by Rachel Platten. Elizabeth won the 2017 Junior Miss Effingham County Fair Queen pageant and her father bawled like a baby. Since then, “Crowns Fight Cancer” was born.
Elizabeth’s mission is so simple, “she’s just a girl changing the world, one rhinestone at a time.” Elizabeth can often be found looking for ways to improve and change what families go through including advocacy, fundraising and financials. She helps to advocate by reaching out to congressional leaders and community members to raise awareness. Following her crowning, she started a project where she would collect items that many families would run out of during a hospital stay. Elizabeth has helped raise thousands of dollars for research on local, state and national levels and that’s just the beginning for this courageous, brave and determined warrior.
In January 2019, Elizabeth relapsed with a tumor on her spine, following a delicate biopsy she entered a Phase 2 clinical trial where she remained until January 2020 when scans showed the tumor undetectable unfortunately scans also revealed she had relapsed throughout her body, including lesions on her skull, pelvic region and femur. Her abdomen and kidney are full of soft tissue tumors and the liver has questionable activity. She is currently participating in clinical trials and she remains hopeful. Her next scans will be later this month to determine if the clinical trial is having any effect on her current disease.
Elizabeth still remains positive and is patiently waiting for travel restrictions to be lifted so that she can take her wish trip to Greece. She is determined to show teens that staying active and doing what you love like pageants, dance, 4-H or FFA is still possible despite cancer. Please help ACCO send well wishes to our Amazon + ACCO Ambassador and warrior, Elizabeth!
ACCO was lucky enough to initially engage with Elizabeth for the National Pajama Day PJammin® campaign in April 2020, and has since kept in close contact. Amazon selected Elizabeth to be an Amazon + ACCO Ambassador in late August and you can find downloadable content here to share about Elizabeth today. Be sure to follow La Roche Posay tomorrow (9/10/2020) as Elizabeth will be talking about her journey with cancer!
Watch Elizabeth’s first-hand interview below.
For more information on neuroblastoma, please visit: https://www.acco.org/blog/childhood-neuroblastoma-treatment/
Follow Elizabeth on social media on Facebook and Instagram @CrownsFightCancer
Read about her accomplishment of winning the 4-H Award for Childhood Cancer Advocacy: https://www.acco.org/blog/amazon-acco-and-gold-ribbon-hero-elizabeth-wins-national-4-h-award-for-childhood-cancer-advocacy/
UPDATE: On October 1, 2021, ACCO was informed that Elizabeth passed away on September 30, 2021.
Meet Santiago, an active 3 year old AML leukemia warrior and 2020 Amazon + ACCO Ambassador !
Early in 2020, Santiago began to have frequent ear infections and after taking him to the pediatrician several times, they were simply not getting any better. His parents noticed bruising which they thought was normal since he was so active. In February, he came home complaining of abdominal and joint pain which prompted Santiago’s parents to take him to the emergency room. His family suspected appendicitis. On February 4, 2020, Santiago was diagnosed with acute myeloid leukemia and treatment started imm
ediately.
Santiago’s treatment consisted of five rounds of chemotherapy. Each round was 25-30 days as an inpatient with one week at home in between rounds. In total, Santiago has had a total of 93 chemotherapy treatments and fought with a smile on his face.
Since Santiago was treated during the COVID pandemic, it made the diagnosis extremely tough on the family. “Our inpatient time was 30 days in the hospital with one week home. During normal times, you would have the support of family, friends and other organizations but since Santiago was diagnosed during a pandemic, support was limited. The hospital only allowed two official caregivers to visit but only one caregiver at a time was able to be in the room. I spent the week with Santiago and on Friday my husband and I would switch so that he could see Santiago and I could see our baby daughter. Santiago couldn’t see his sister, only during the week that we would go home. Services like the playroom areas inside the hospital were limited so at times we felt alone during the most difficult time” said Andrea, Santiago’s mother.
During treatment, Santiago could be found wandering the hallways on the oncology floor riding his easy roller or playing in the playroom. Currently, Santiago is in remission and is slowly healing. He’s now running around with his sister and playing with cars like a typical 3 year old!
Amazon selected Santiago to be an Amazon + ACCO Ambassador in late August and you can find downloadable content here to share about Santiago today.
For more information on AML, please visit: https://www.acco.org/blog/about-childhood-leukemia-detection-and-diagnosis-2/
Follow Santiago’s story on Instagram @andrea.r.morales
Meet Bo, a fierce childhood cancer warrior!
Bo was 2 years old when an emergency room visit for a tummy ache turned into a cancer diagnosis. She has been battling stage 4 clear cell sarcoma of the kidney since December 2019. Bo’s treatment has included surgery to remove her left kidney, 18 rounds of intense chemotherapy & 15 rounds of radiation. As hard as cancer has been on Bo we frequently find ourselves feeling like she was born for this battle. She has taken every poke, every surgery and every round of treatment with a true fighters spirit. Bo is nearing the end of her treatment with only 3 rounds of chemotherapy left and currently has no evidence of disease in her body.
Bo was chosen to be an Amazon + ACCO Ambassador for 2020 Childhood Cancer Awareness Month. Download Bo’s awareness materials here.
Sterling Scales has been raising money for childhood cancer by organizing his very own virtual race since May! He has raised more than $2500 and is still going through the month of September! His son, Indy was diagnosed with Stage 3 Wilms tumor at 4 months old and is now in remission since 2019! Click the article below to learn more about Indy and the virtual race! GO GOLD® and join Sterling in racing for Indy!
Indy Races ends on September 30, 2020 and Sterling plans to run as part of our runDisney GO GOLD® group. You can join Sterling’s GO GOLD® cheer team in Walt Disney World this January. Learn more about runDisney here.
Excerpt taken from the article posted on CJ Online. ” Our son, Indy, was diagnosed with Stage 3 Wilms tumor at 4 months old. My wife, Myrna, and I noticed a lump when Indy was 3 months old. We took him to a pediatrician to be examined. They noticed something was unusual and immediately sent us to Stormont Vail emergency room. The ER was expecting us. They immediately admitted us and sent us upstairs to the PICU (pediatric intensive care unit). Indy had blood drawn and an ultrasound performed. Later that night we met the oncologist for the first time. We knew something was not right. She told us of a large mass on his left side, potentially a Wilms tumor. She scheduled us for surgery at KU Med (the University of Kansas Hospital) five days later. 
Indy’s surgery removed an eggplant sized tumor and his left kidney. The tumor was cancerous. Indy stayed in the PICU for one week before going home. One day after coming home, we saw the oncologist to get his chemo port. The same day, he received his first round of chemotherapy. Indy endured five days of radiation treatment and six months of chemotherapy. He has been in remission since February 2019. Every three months he gets an MRI or ultrasound to make sure he is still cancer free. He is developing on par with other 2-year-old kids.
The one side effect from chemotherapy that we have witnessed is neuropathy in his feet. He had to wear leg casts for four weeks to strengthen his feet. Now he wears AFO (Ankle-Foot Orthosis) boots to help. He walks and runs just fine, but his feet position is slightly turned inward.
We felt that we should do our part to raise money for childhood cancer research and for families affected by childhood cancer. This is why we created the Indy Races. I thought I would incorporate my love of running with a group event that many people could be a part of. Virtual races proved to be the avenue needed to reach more people. All of the monies raised go to support the American Childhood Cancer Organization (acco.org). People can get involved by visiting www.linktr.ee/IndyRaces.”
Meet Hannah, a 17 year old acute lymphoblastic leukemia survivor! Hannah is a childhood cancer advocate and helps raise awareness and money through her nonprofit called “Even Mermaids Get Leukemia.” 
At 13 years old, Hannah was diagnosed with acute lymphoblastic leukemia. Hannah was participating in a musical and felt extremely tired which was not out of the ordinary because rehearsals ran for a long time. One day, she came down with a fever and went to the school nurse’s office. Her pediatrician initially thought it was a virus going round and sent her back to school for the rest of the week. After going back to the nurse, it was suspected that she had mono and advised Hannah to go back to the doctor. When blood was taken, her platelets were very low which prompted the doctor to send Hannah to the hospital.
Treatment began almost immediately after her diagnosis of ALL. Hannah remembers, “once diagnosed with ALL, I went through the induction phase and then I was given a bone marrow test to indicate whether I needed a transplant or not, thankfully I didn’t. I went on to face two and a half years of chemotherapy.The most difficult chemotherapy I had to take was methotrexate. My body had an adverse reaction of sores in my mouth and down my gi tract. The sores made it unbearable to eat or drink and the doctors had to place a feeding tube due to the sores. I was given vitamin k intravenously on Valentine’s Day 2017. The vitamin k sent me into anaphylactic shock and as a result I was placed in the ICU for the next week. Ever since that day my family and I vowed to never take life for granted.” 
After going through chemotherapy, Hannah started a nonprofit called, “Even Mermaids Get Leukemia.” Her mission was to help children who are undergoing treatment to feel like kids again! Hannah has a Youtube channel where she shows what it’s like to be a cancer patient.
Hannah has been busy advocating for childhood cancer by helping organize a blood drive and raising money and awareness.
Hannah participated in the “Circle Up” series by reading an excerpt from “Chemo, Craziness and Comfort.”
We also ran her survivor story here: https://www.acco.org/hannahs-survivor-story/
Learn more about ALL: https://www.acco.org/blog/what-are-the-signs-and-symptoms-of-childhood-leukemia-cancer/
Meet King, a 7 year old Acute Lymphoblastic Leukemia survivor and a childhood cancer advocate! 
At just two years old, King was very pale and constantly required blood transfusions. At first, King’s family was told that he had a lifelong incurable blood disorder and to follow up with a hematologist and oncologist. At the follow up visit, King’s family was told that there was something concerning in the blood sample. He was then diagnosed with Acute Lymphoblastic Leukemia.
King was put on daily chemotherapy from June 2016 through October 2019 and as a result he took 75 chemotherapy pills a month. He took a total of 14 pills per day including steroids, chemotherapy, anti nausea, and many more.
King has an enzyme deficiency called G6PD which complicates treatment. Glucose-6-phosphate dehydrogenase (G6PD) is an enzyme that protects blood cells. King’s body does not produce enough G6PD to protect his red blood cells, therefore he is deficient.
Treatment consisted of countless spinal taps, blood and platelet transfusions and he suffered from vincristine toxicity which left him unable to walk for months. At 3 years old, King had to relearn how to walk and talk. Other complications included PTSD, mouth sores and brain swelling with loss of white brain matter.
On October 21, 2019, King took his last chemotherapy pill in Times Square! He appeared on Good Morning America in celebration of his last day of chemo!
King is more than a cancer survivor! He’s an advocate, a model and raises money and awareness for childhood cancer. King likes to make others smile and he does this by delivering toys to kids with cancer. When King grows up, he dreams of being a professional model, artist, basketball player and chef!
This childhood cancer advocate celebrated his 7th birthday on August 18th! Please help ACCO send birthday wishes to King!
Learn more about ALL: https://www.acco.org/blog/what-are-the-signs-and-symptoms-of-childhood-leukemia-cancer/
Learn more about King’s journey: https://www.kingfightscancer.com
Meet Steven, a 13 year old Acute Lymphoblastic Leukemia (ALL) warrior! Steven just turned 13 on August 2nd and aspires to be a chef when he grows up. Check out Steven on our Circle Up series and his own IGTV show “Chemo Bites!” 
Steven’s labradoodle would not stop jumping on him which caused bruised arms and legs and after two bloody noses over one weekend, Steven’s mom, Wendy knew something was wrong. On a Monday, Steven was taken to the doctors for bloodwork and by Wednesday the oncologist called Wendy telling her news she’d never thought she’d hear. On his 10th birthday, Steven was diagnosed with high risk acute lymphoblastic leukemia (ALL).
“I felt my gut instinct was right. I felt angry, I was in denial, I did not know anything about leukemia and I was scared to tell my family and him” Wendy remembers. Steven’s family met him at the hospital on his birthday along with the staff who provided birthday gifts and helped him celebrate by singing happy birthday. Steven was so touched that they thought of him and that was the boost he needed to start treatment.
His treatment began almost immediately with four phases of chemotherapy and maintenance. For an additional three years, Steven has to undergo daily chemotherapy and methotrexate. Unfortunately, Steven is in the 10% of pediatric patients that have sensitivity to the chemotherapy with nausea and vomiting. Steven has endured several spinal taps, chemo infusions, a port placement and a bone marrow aspiration. As a result, he lost his hair, eyebrows, eyelashes and about 30 pounds within two months.
Steven almost passed away as a result of seizures and respiratory distress. As a result, he has embraced every day and tries to be proactive. Steven “the cancer crusher” has an extremely positive attitude which initially attracted ACCO to get more information. He tells jokes and writes poems and songs.
Treatment will end in November of 2020. Steven’s plan is to continue to raise awareness for childhood cancer and use his platform for good. He wants to gain more support for legislation to push more for funding for life saving medications. He is devoted to helping others understand that advocating is so important. Steven’s passion for helping has even inspired him to host blood drives, fundraisers and speak about his journey at various events. His message is to never give up and to remain positive throughout your journey.
Steven LOVES to cook and has his own IGTV video series called, “Chemo Bites.” ACCO featured Steven “the cancer crusher” on our social media and in our “Circle Up” series. He loves to give motivational speeches for encouragement and most recently led a memorial service. He loves Gordon Ramsay and cooking shows. Steven also enjoys playing his xbox, singing, music and writing. He recently appeared on The Mark White Show and you can hear his full interview here.
UPDATE on 10/20/21: From his mother, Wendy. “Well he is now in the 8th grade and 14 years old. He will celebrate 1 year off of treatment next month. He is thriving and doing very well in school. He is even involved at video production at school. He has finally returned to playing baseball after 4 years of not being able to play. He is working on gaining strength and endurance and working out daily. He is studying Japanese with private lessons and is a ramen lover.”
Follow Steven on Instagram @Steventhecancercrusher
Learn more about ALL: https://www.acco.org/blog/what-are-the-signs-and-symptoms-of-childhood-leukemia-cancer/
FOR IMMEDIATE RELEASE
Beltsville, Maryland – The American Childhood Cancer Organization has been selected as a beneficiary of the Giant Food Community Bag Program for the month of September.
The Giant Food Community Bag Program, which launched in May 2019, is a reusable bag program that facilitates community support with the goal to make a difference in the communities where shoppers live and work.
ACCO was selected as the September beneficiary of the program by store leadership at the Giant Food located at the Burtonsville and Greenbelt locations. ACCO will receive a $1 donation every time the $2.50 reusable Community Bag is purchased at this location during September, unless otherwise directed by the customer through the Giving Tag attached to the bag.
“This is great news, we are honored to be selected as the beneficiary of the Giant Food Community Bag Program” said Ruth Hoffman, CEO of ACCO.
Visit the Giant Supermarket locations here:
The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. We’re dedicated to making childhood cancer a national health priority through shaping policy, supporting research, raising awareness and providing educational resources and innovative programs for children with cancer, survivors and their families. For more information, please visit www.acco.org/donate
For more information on the Giant Food Community Bag Program, visit giantfood.bags4mycause.com
Meet Kelsie, a forever 17 year old glioblastoma warrior. 
After battling months of nonstop headaches and losing peripheral vision in her right eye, Kelsie underwent surgery to remove an egg-sized glioblastoma in her left occipital lobe. After recovering from surgery she went through 30 days of radiation and chemo, followed by a year long course of chemotherapy. Kelsie thrived during the time after treatment. She was actively involved in her school, community and church. She participated as a cheerleader and majorette for her high school, was involved in missions, and loved music and singing.
Kelsie went 18 months off-therapy with no evidence of disease. In January 2018, Kelsie had a seizure and after a scan found multiple inoperable recurrent tumors she was put into a clinical trial. Kelsie started the HSV G207 clinical trial at Children’s of Alabama followed by 25 rounds of radiation but it was simply not enough to keep up with the aggressive nature of the disease.
Kelsie’s mom, Tracey, remembers her by saying, “Kelsie lived her life to the fullest. She never let her diagnosis discourage her. She kept a positive attitude and a smile on her face. She never stopped striving for success in everything she did. Whether it be school work, mission work, cheerleading, band…you name it. She even tried out for varsity cheer just one month after undergoing surgery, and of course made the squad. She was determined. She was always more concerned with other people being okay rather than herself. She never let you know anything was wrong with her. She wanted more than anything for life to just be normal. Kelsie loved the people in her life BIG and with all she had. Her life made such a huge impact on everyone that knew her. Cancer can take many things from us, but it can never take the love and the legacy our loved ones leave behind.”
Learn more about Glioblastoma here: https://www.acco.org/blog/childhood-brain-tumors-staging-and-prognosis-factors/
Follow Kelsie’s Hope on Facebook: @LifeOfEucharisteo
