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Gold Ribbon Hero: Michele

Gold Ribbon Hero: Michele

0-3Meet Michele, a forever 24-year-old cancer warrior that was taken too soon. Just by looking at Michele’s social media, you could tell that she loved to live life. She loved traveling, especially to the beach. Michele fought a three year battle with alveolar rhabdomyosarcoma (RMS). The cancer was initially found in her forearm in 2013. In the fall of 2014 she relapsed. In the final year of her cancer journey, she was referred to another oncologist who tried a new chemotherapy that seemed to be working for a short time from February to June of 2016.

While Michele was at work, her mom, Valeria got the call. It was Friday, July 26, 2013 at 3:34pm and it was 72 hours after Michele’s biopsy. Michele was at work and I got the diagnosis over the phone. She said, “I couldn’t believe it. I called my family, friends, and Michele’s dad. They all came over and we decided to let Michele just come home from work and then tell her. I was a total wreck, so her dad sat her down and gave her the news”, Valeria remembers.50442340_10213435393854858_6902176843135188992_n

The first battle with cancer consisted of ten and a half months of three chemotherapies weekly, and every third week all three chemotherapies were inpatient. The second battle with cancer consisted of eight and a half months of three chemotherapies with the first week inpatient and then weekly outpatient chemotherapies. Through her cancer journey, Michele had six surgeries.

0During her fight, she continued college and graduated from University of Connecticut with a BA in Psychology, minoring in Women’s Studies. She held a 3.74 GPA and was the Magna Cum Laude with high honors. She even started graduate school for her Master’s degree in Social Work at Southern Connecticut State University. She wanted to prove that, “yes, I have cancer; but cancer doesn’t have me”, as she would state on her Facebook page.

Michele passed away on September 28, 2016. She once wrote on a Facebook post, “I’m thankful for my struggle because without it, I wouldn’t have stumbled across my strength.” She continues to be an inspiration to those closest to her with her #TeamM Facebook page.

For more information about RMS: https://www.acco.org/sarcomas/

To donate to ACCO: https://www.acco.org/donate/

 

Gold Ribbon Hero: Olivia

20638859_304188363388036_2942752906910901897_nMeet Olivia, a dynamic and determined 13-year old who loves theater and softball. Olivia is a brave cancer warrior currently fighting acute lymphoblastic t-cell leukemia (ALL).

In July 2017, Olivia volunteered at a photo booth in Camp Dost at the Ronald McDonald House camp. She got in the car after a long day, and told her mom that she thought it was cool and that she wished she had leukemia. Her mom, Krista, got upset with her telling her not to wish that upon herself.

Olivia was diagosed with ALL on August 3, 2017. The doctor informed Olivia that it was not her fault, but merely her body foreshadowing what was really going on. After months of being sick and a routine doctors appointment on a Friday afternoon Olivia’s mom, Krista, knew something was wrong. They initially tested Olivia for mono and were told to call the doctor on Monday if things hadn’t improved. That weekend Olivia slept 12-16 hours per day and when she woke up, there were new bruises on her body. Krista was encouraged to take Olivia to the ER the following Thursday after blood work had been mixed up. The blood counts were concerning so the family headed to the closest emergency room which is without pediatric hematology and oncology doctors. “The ER did a great job at keeping us calm, however, I am a google doc and had narrowed down her symptoms and was aware of what was coming,” said Krista. At 3:30, the family arrived at Geisinger Medical Center after being told they’d have a bed ready for Olivia and rushing to pack a bag in a daze. By 7pm, they knew the diagnosis.22051377_10213714603080777_2080999273591263161_o

Olivia was very sick when first diagnosed and for many months after she had no interest in hearing details about treatment or diagnosis. Her aggressive treatment plan consisted of chemotherapy and lumbar punctures coupled with methotrexate and radiation. “She was in tumor lysis at the time of diagnosis and the first 48 hours were extremely frightening. The tumor load around her lungs kept her struggling to breathe and her waste products caused an overload on her kidneys. They watched her for kidney failure,” remembers Krista.

For treatment, Olivia was seen at Geisinger Medical Center in Danville, Pennsylvania. On March 27, 2018 Olivia was considered to be in remission! Olivia has endured problems with somnolence syndrome, transfusions, and lumbar punctures. She now has a mediport which will remain in Olivia’s chest until the end of treatment. She has been in and out of school because of the somnolence syndrome, but has kept up through homebound schooling.

48426242_10217447774327725_3913438973069885440_oCurrently, Olivia is in the maintenance phase of treatment with home chemo pills, a monthly clinic chemo, and quarterly lumbar punctures with methotrexate.

Olivia has consistently beaten the odds through her cancer journey. She was initially supposed to stay in the hospital for three weeks but ended up getting out within 12 days. Talk about determination!  She’s been able to participate in a 3K as well as act in two plays. Last fall, she was able to play softball, only missing a few games. In January, Olivia was able to return back to school and plans to star in an upcoming production of “Annie” as Kate.

Follow Olivia’s Journey on Facebook: #TEAMTINK – OLIVIA

For more information about acute lymphoblastic t-cell leukemia: https://www.acco.org/childhood-leukemias/

To donate to ACCO: https://www.acco.org/donate/Screenshot_2018-06-15-19-53-23

About Spinal Cord Cancer Tumors – Signs and Symptoms

The Signs and Symptoms of Spinal Cord Tumors in Children

Spinal Cord Tumors in ChildrenTogether, the brain and the spinal cord—the sensitive column of nerve cells inside the vertebrae of the spine—make up our central nervous system (CNS). Cancers of the central nervous system, more commonly called brain and spinal cord tumors, are the second-most common form of cancer in children, after leukemia. Statistically, brain tumors and spinal cord tumors are often grouped together; however in reality, there are a number of different types of tumors of the brain and the spinal cord, each of which requires a unique treatment approach and carries its own prognosis (outlook).

Usually, abnormal cell growths like tumors are classified as malignant (cancerous) or benign (non-cancerous). This distinction is significantly less important for spinal cord tumors because (1) spinal cord tumors rarely spread into other systems like other malignant cancers and (2) malignant and benign tumors can be equally life-threatening. Whether benign or malignant, as the tumor grows, it places pressure on and potentially restricts critical tissues of the CNS. Thus, both malignant and benign tumors can cause similar symptoms and require an aggressive treatment approach.

Symptoms and Early Detection of Spinal Cord Tumors

Unfortunately, as with other types of childhood cancer, early detection of a spinal cord tumor is generally not possible. Unlike with some common adult cancers, there are no screenings or testing options to detect the early growth of a tumor within the spinal cord. For most children, detection and diagnosis come only after the tumor has grown large enough to interfere with the normal functioning of the CNS and begin causing noticeable symptoms.

Symptoms of a spinal cord tumor can—and often do—vary widely from child to child. Specific symptoms will depend heavily on where the tumor is growing along the spinal cord, how much it is pressing on and restricting otherwise healthy nerves and tissues, how quickly it is growing, and the age and development of the child. However, some of the most common signs of a spinal cord tumor may be issues such as:

  • Pain in the back or neck
  • Pain spreading from the back towards the arms and/or legs
  • Sciatica
  • Numbness, weakness, and or tingling in the extremities, particularly the legs
  • Changes to urination or bowel habits
  • Difficulty walking
  • Partial paralysis
  • Spinal deformity
  • Delay in reaching growth and development milestones such as sitting or walking

Spinal cord tumors in children are extremely rare, and many of these symptoms are also symptoms of common childhood ailments. However, if you notice these or other unusual health problems in your child, it is important to have your child checked by a pediatrician without delay. If your child’s pediatrician believes that these symptoms may be caused by a spinal cord tumor, he or she will refer you and your child to a neurologist and/or an oncologist for additional testing to ensure a prompt and accurate diagnosis.

More about Childhood Spinal Cord Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

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.  At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families easier and brighter during this difficult time.  Many of our resources are available free of charge for families coping with childhood cancer.

For additional information on non-Hodgkin lymphoma and its symptoms, on the ACCO in general, 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:

Gold Ribbon Hero: Savannah

Meet Savannah, a brave cancer warrior that was taken too soon. Savannah fought a long, hard and very painful battle with Osteosarcoma. Her cancer was found in her left pelvic bone with metastasis occurring in lung nodules, her sacrum, and L5 vertebrae. The aggressive cancer spread to her right femur during traditional therapy and research studies. Unfortunately, Savannah was not a candidate for surgery. 

During her fight she was able to embrace her hair loss and enjoyed using makeup. Savannah was a sassy and strong 14-year-old who turned to her faith to find comfort. An animal lover who rescued over 100 dogs, 7 ducks, and a horse; she even volunteered at the local humane society and various ranches in Arkansas. Her final words were “Love each other, don’t commit suicide, and look towards the Lord.” Savannah passed away on July 20, 2018.

To learn more about osteosarcoma visit: https://www.acco.org/bone-cancer/

To donate to ACCO: https://www.acco.org/donate/

 

More than 17,000 Chemotherapy drugs donated to Ethiopian Children

Happy boy and uncle copyTHE ACCESS TO CHILDHOOD CANCER ESSENTIALS (ACCESS) INITIATIVE ANNOUNCES TRANSFORMATIVE PROGRAMS TO INCREASE ACCESS TO CRITICAL MEDICINES

• Multistakeholder partnership seeks to enhance care for children with cancer in Africa
• Provides life-saving cancer medicines to children in Ethiopia in collaboration with Teva
• Funds critical research on childhood cancer medicine needs and access barriers in East Africa

FOR IMMEDIATE RELEASE – January 13, 2019 – Washington, D.C. Access to Childhood Cancer Essentials (ACCESS) today announced two initiatives with partners across sectors to improve the lives of children with cancer in Africa. The first, in collaboration with Teva Pharmaceutical Industries Ltd. provides essential, life-saving cancer medicines to children in Ethiopia, and the second funds critical research on childhood cancer medicine needs and access barriers in East Africa with the aim of improving future procurement.

Cancer is the highest non-communicable disease-related cause of death among children globally. While in high-income countries, more than 80 percent of children with cancer are cured, the same percentage of those in low- and middle-income countries die.

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Childhood cancer has no borders; yet, sadly, childhood cancer medicines do,” said Ruth Hoffman, CEO of the American Childhood Cancer Organization, and co-founder of ACCESS. “A major barrier to treating and curing children with cancer in low- and middle-income countries is lack of access to essential medicines.”

webgraphic_borders copyIn partnership with Teva Pharmaceuticals, Direct Relief and the Ethiopian Pharmaceutical Fund Supply Agency, ACCESS is providing an emergency provision of 13 cancer medicines from the World Health Organization’s Essential Medicine List—more than 17,000 vials—to children with cancer in Ethiopia.

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This comes as a response to an urgent plea from parents and medical providers of children with cancer, as well as health system leaders. Bitew Tesfaye, a farm laborer, father to seven children, including his six-year old daughter diagnosed with Hodgkin Lymphoma who is awaiting treatment in Addis Ababa shared, “We come from far away, hoping for our children to get well. We start treatment and begin to see light, but, when we are told medicine is not available or only available in a private pharmacy, our hope fades. Now, with access to these medicines, we have hope again.”

“Direct Relief is deeply appreciative to Teva and ACCESS for their leadership and initiative in providing critical treatments to underserved patients in Ethiopia and globally,” said Tom Roane, Strategic Initiatives Director at Direct Relief. “Thanks to this collaboration, patients who would otherwise be unable to access cancer therapies will be able to receive the treatments they need to recover.”
ACCESS is also launching an innovative research program to study the many critical barriers to childhood cancer drug access in Kenya, Rwanda, Uganda, Tanzania and Ethiopia.Dakar girl_2

“A significant limitation to providing critical medicines to children with cancer in Africa is the lack of knowledge about the scope of the problem,” said Dr. Avram Denburg, Pediatric Oncologist and Principal Investigator, Centre for Global Child Health at The Hospital for Sick Children (SickKids), Canada and co-founder of ACCESS. “The ACCESS East Africa Program is forecasting childhood cancer medicine needs in the region. This will help inform national government procurement efforts and generate evidence of specific barriers to childhood cancer medicine access in each of these countries.” This program is made possible through the generous support of Friends of Cancer Patient’s Ameera Fund and in collaboration with the SickKids Centre for Global Child Health, American Childhood Cancer Organization, Clinton Health Access Initiative and World Bank.

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Addressing both immediate and long-term needs, these initiatives represent the power and promise of innovative collaborations between non-profit organizations, the pharmaceutical industry, academia and global health institutions to help save lives of thousands of children with cancer.

For further information or to support these important initiatives, please visit www.accessentials.org.

 

About Access to Childhood Cancer Essentialsaccess logo

The Access to Childhood Cancer Essentials (ACCESS) Initiative is a multi-stakeholder collaboration focused on improving access to essential medicines for children with cancer globally. Its vision is of a world where the cure of childhood cancer is bounded by the limits of our knowledge, not the limits of our reach. Its mission is to create and implement innovative solutions to childhood cancer drug and radiotherapy access in low and middle income countries so that all children in the world, regardless of where they live, have access to hope for a cure. Visit www.accessentials.org

About Tevateva logo
Teva Pharmaceutical Industries Ltd. (NYSE and TASE: TEVA) is a global leader in generic medicines, with innovative treatments in select areas, including CNS, pain and respiratory. We deliver high-quality generic products and medicines in nearly every therapeutic area to address unmet patient needs. We have an established presence in generics, specialty, OTC and API, building on more than a century-old legacy, with a fully integrated R&D function, strong operational base and global infrastructure and scale. We strive to act in a socially and environmentally responsible way. Headquartered in Israel, with production and research facilities around the globe, we employ 45,000 professionals, committed to improving the lives of millions of patients. Learn more at www.tevapharm.com.

About American Childhood Cancer Organization

acco logoThe American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children diagnosed with cancer to advocate for their needs and support research. The nation’s largest grassroots organization at the forefront of the crucial battle against childhood cancer and sole U.S. member of Childhood Cancer International, the ACCO is dedicated to shaping policy, supporting research, raising awareness, and providing educational resources and innovative programs to children with cancer, survivors, and their families. Since its inception, the ACCO has helped support more than half a million families affected by childhood cancer in the U.S. and expended to provide grant funding to support childhood cancer programs in Ethiopia. Visit www.acco.org.

About Centre for Global Child Health

Sick Kids Center for Global Health logoThe Centre for Global Child Health is the dedicated hub for global child health-focused activities at The Hospital for Sick Children (SickKids). With a rich history of innovation in global paediatric health and a reputable network of global partners, the Centre for Global Child Health is well poised to effectively address global child health issues. The Centre supports the global health agenda through collaborative research grounded in scholarship, sustainable capacity building through education, advocacy for improved maternal and child health and the active communication of results to local, national and inter-national stakeholders. For more information, please visit www.sickkids.ca/globalchildhealth and follow on Twitter @SickKidsGlobal.

About Direct Relief

Direct Relief logoDirect Relief is a humanitarian aid organization, active in all 50 states and more than 90 countries worldwide, with a mission to improve the health and lives of people affected by poverty or emergencies. Direct Relief works to equip healthcare providers who care for vulnerable people on an ongoing basis and during emergencies. To achieve this goal, Direct Relief partners with local health providers, leading healthcare companies, and business leaders, to deliver medicines, medical supplies and equipment through transparent, reliable, and cost-effective channels. Direct Relief seeks to support existing health providers over the long term, delivering aid without regard to race, ethnicity, political or religious affiliations, or ability to pay.

Direct Relief partners with leading cancer treatment manufacturers to provide access to life-saving cancer treatment drugs to more than 50 public cancer hospitals around the world. Direct Relief is a member of the globally prominent Union for International Cancer Control (UICC), as well as the specialized cervical cancer association Global Coalition Against Cervical Cancer. In addition, Direct Relief is an Implementing Partner in the UICC’s City Cancer Challenge (C/Can 2025) initiative. More information on Direct Relief’s work on expanding access to cancer treatment can be found at: www.directrelief.org/issue/cancer.

FOR MORE INFORMATION OR TO SET UP AN INTERVIEW
• Dr. Avram Denburg, Staff Oncologist, The Hospital for Sick Children, Toronto, Canada: email Hillete Warner at hillete.warner@sickkids.ca
• Ruth Hoffman, Chief Executive Officer, American Childhood Cancer Organization: email rhoffman@acco.org 202-262-9949

Causes, Risk Factors, and Prevention of Childhood Spinal Cord Cancer Tumors

What causes spinal cord tumors in children?

i-KVDjmX3When we think of the spine, or backbone, we generally think of it as the part of the skeleton that enables us to stand upright and walk. However, the bones that hold us upright have a second, and potentially even more important, responsibility: protecting a delicate column of nerve tissues that carry messages between the body and the brain. These messages between body and brain are what enables our body to function normally.

Put simply, a spinal cord tumor is an abnormal growth of nerve cells inside the spinal column. For most people, however, the more important question is: what causes the nerve cells in the spinal cord to grow abnormally into a tumor? On-going research indicates that most spinal cord tumors are probably caused by mutations—or changes—to the genetic structure of the nerve cells. Certain mutations occurring within the genes that control cell growth can cause the mutated cells to grow abnormally. If the mutations occur in oncogenes, cells may grow and/or replicate too rapidly, while if the mutations occur in tumor suppressor genes, cells may not die at the right time; in both cases, the result is a clump of abnormal cells that will, eventually, become a tumor.

But what causes these gene mutations? In the vast majority of cases, scientists simply do not know why these gene mutations occur. In a limited number of cases, the mutation may be inherited from one or both parents; in most cases, however, the mutation is random—an unfortunate accident that occurs during the natural lifecycle of the cell—and cannot be prevented or predicted. There are very few risk factors and no known lifestyle choices that impact a child’s risk of developing a spinal cord tumor.

Are there any risk factors related to spinal cord tumors?

A “risk factor” is anything that may impact a child’s risk of developing cancer. There are very few risk factors associated with spinal cord tumors in children; as noted above, most cases are likely the result of random and unpredictable gene mutations. However, in some rare cases, gene changes stemming from inherited genetic syndromes may carry an elevated risk of developing a spinal cord or brain tumor. These inherited and genetic syndromes include:

  • Neurofibromatosis type 1 (von Recklinghausen disease)
  • Neurofibromatosis type 2
  • Tuberous sclerosis
  • Von Hippel-Lindau disease
  • Li-Fraumeni syndrome
  • Gorlin syndrome
  • Turcot syndrome
  • Cowden syndrome
  • Hereditary retinoblastoma
  • Rubinstein-Taybi syndrome

The only other known risk factor for spinal cord tumors (and brain tumors) is exposure to radiation. In children, the danger of radiation is especially acute because the delicate cells of the central nervous system, including the spinal cord, are growing and replicating especially quickly. Today, physicians understand the unique dangers of radiation exposure in children and care is taken to minimize exposure, for example utilizing radiation-based scans such as x-rays only when necessary.

In addition to radiation-based imaging technology, radiation can be a valuable and highly-effective tool to help fight other types of cancers. When battling childhood cancers, oncologists must weigh the potential benefits of radiation therapy with the risk of developing radiation-induced spinal cord tumors. For children under the age of 3, most oncologists will seek to avoid the use of radiation entirely if at all possible. For some older children, the life-saving benefits of radiation therapy may outweigh the small risk of developing a spinal cord tumor or other secondary cancer.

Can spinal cord tumors be prevented?

When facing the devastating diagnosis of a childhood spinal cord tumor, parents often need to know if there is anything they could have done differently to prevent their child from developing cancer. The answer can be both frustrating and reassuring. Spinal cord tumors are nearly always the result of random gene mutations and can neither be predicted nor prevented. The one exception may be, as noted above, the use of radiation to treat another type of cancer; however, in these rare cases, the choice to use radiation therapy was likely the best possible—and maybe the only—option to fight that cancer and save the child’s life.

More about Childhood Spinal Cord Tumor Cancers:

Learn More About the Different Types of Childhood Cancers:

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.

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:

Gold Ribbon Hero: Colton

47178821_2380946775267504_5378196745706536960_nMeet courageous Colton Whisler, a four-year-old warrior currently battling Perimeningeal Rhabdomyosarcoma, otherwise known as RMS. We were pleased to connect with Colton’s family through The Mark White Show, a popular radio program in Alabama. Jamie Bloyd, ACCO Director of Government Relations and External Affairs,  joined Mark on the air as a featured guest two weeks ago.


In October 2018, Colton had experienced a facial droop that was originally diagnosed as Bell’s Palsy. Stephanie Whisler, Colton’s mom said “ we were told it was harmless and it would go away. He began crying and saying his ear was hurting. He then told us the floor was spinning.” At this point, Stephanie knew something was wrong with Colton. She decided to take him to his pediatrician at least once a week for the next three weeks where they treated him for a bad ear infection. Colton was then referred to an ear, nose and throat doctor (ENT) for tubes but when the pediatrician called him, the ENT thought it was something more. The ENT ended up meeting the Whisler family on his day off and found out that it wasn’t just an ear infection, it was a tumor. “We were in a state of shock, it was so hard to believe that our sweet perfect baby would be beginning the fight for his life,” said Stephanie.

Colton will be receiving approximately 15 months of chemo and radiation treatment and 30 treatments of proton therapy.  According to his mom, “his age is both a blessing and a curse. He is young enough that he doesn’t really understand the severity of his situation, but he also can’t verbalize what he is feeling. Being away from his big brother, Ty, has been one of the hardest parts of this for both of them.” Since Colton’s tumor is in the middle of the ear, it is considered inoperable. The Whisler’s have discussed end of treatment surgeries consisting of a cochlear implant and surgery to correct his facial droop.

Chemotherapy hasn’t been easy for Colton either. His mom told ACCO, “his journey started off really rough. The first round was incredibly hard on him. The amazing doctors and nurses have since come up with a strategy that helps to keep his nausea at bay.”

Colton is currently in the hospital receiving treatment. He is experiencing neuropathy of his feet due to a weekly drug he takes. He is in physical therapy twice a week and will be receiving braces for his legs soon. According to Colton, “courageous people never give up and nothing is going to steal my joy.’’

For more about Courageous Colton Whisler: https://www.facebook.com/Courageous-Coltons-Crew

For more information about Permeningeal Rhabdomyosarcoma please visit: https://www.acco.org/sarcomas/

We can help! For free resources please visit: https://www.tfaforms.com/4699752

To donate to ACCO: https://www.acco.org/donate/