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Cancer Advisor
July 31, 2019
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Personal Stories
  • Ben’s story: ‘Cancer has taught me a lot’

    Diagnosis & treatment After having a sore on his neck for a few weeks Ben decided to make an appointment with his local GP in Perth. Although Ben was more preoccupied about the sore, after hearing about Ben’s history of headaches the doctor insisted on getting tests done. A few weeks later, the 23-year-old was told he had a benign brain tumour and needed surgery. However, after testing the biopsy the tumour turned out to be a malignant four centimetre mass. It was classified as stage 2 with characteristics of stage 3 astrocytoma glioma. The mass was on the right […]

  • Danielle’s story: One day at a time

    They say that our first love will stay in our hearts forever. This couldn’t be more true for 26-year Danielle Paparone. At 19 she was swept off her feet by an affable young man with striking blue eyes. After a blissful year together, he was diagnosed with a brain tumour. However, treatment was unsuccessful, and he died three years after diagnosis. Danielle shares her incredible love story with Cancer Advisor and tells us how she turns her pain into purpose. “He had very big blue eyes and that’s what drew me in,” Danielle says. Jake first laid his big blue […]

  • Clinical trials bring hope – Lesley and Casey’s story

    On the Dell’s Children website, a mother and father share their story about how clinical trials brought hope to their family during their son’s cancer treatment. Rex was 17 months old when he was diagnosed with high-risk neuroblastoma. The article says: “Upon Rex’s diagnosis, Lesley and her husband, Casey, knew their family faced a long, uphill battle.  High-risk neuroblastoma is an aggressive and deadly form of childhood cancer, and the odds for survival were not in their child’s favor.  They agreed to enroll Rex into a clinical trial study using an experimental drug, Unituxin, for children with high-risk neuroblastoma.” In this […]

  • Life after childhood cancer treatment

    After the Rain is a short documentary that covers two stories from families about life after childhood cancer treatment – created by the Victorian Paediatric Integrated Cancer Services (PICS). You can also find a podcast series on what to expect after finishing treatment, and a “coming off treatment” handbook. On the website it says, “When treatment ends, families may feel excited about the future. Completing treatment is often an anticipated and celebrated milestone. However, it may be surprising to discover mixed feelings about coming off treatment. The coming off treatment handbook and immunisation after cancer treatment has finished resources have been designed to support families […]

  • Cancer survivor and amputee’s cute Halloween costume

    The Mighty has shared a very cute story: titled 3-Year-Old Cancer Survivor Proves You Don’t Need Two Arms to Enjoy Halloween. The article is about Scarlette, a three-year-old amputee and cancer survivor. Scarlette and her mother Simone found a fun and creative way to celebrate Halloween. Simone says, “When she was born, which was four weeks early, her left arm was gigantic … It was about three times the size of her right arm. They had no idea what to make of it.” After many tests, Scarlette was diagnosed with undifferentiated high-grade spindle cell sarcoma, a rare type of cancer. “We did a […]

  • Tosh’s story: how he helped end his daughter’s cancer

    After more than two years of chemotherapy, Tosh Nagashima helped end his daughter’s cancer. Cancer Advisor called him to talk about his family’s experience. In March 2014 four-year-old Bella was diagnosed with high-risk Acute Lymphoblastic Leukaemia (ALL). After arriving at the Royal Children’s Hospital in Melbourne in an ambulance, Bella started chemotherapy immediately. During treatment, Bella’s father continued to work full-time and take care of their youngest daughter Olivia while his wife Vanie spent day and night in the hospital. “After work I would visit Bella in the hospital every day,” he explains. “It was hard for her younger sister […]

  • Childhood cancer survivor brings hope to cancer patients

    In this six-minute video we see how a childhood cancer survivor brings hope to young cancer patients. Georgia was diagnosed with a rare and aggressive form of leukaemia at just eight weeks old. She was also one the youngest Australians to receive a bone marrow transplant. Twenty years on, she has devoted her life to helping children with cancer as a camp leader. In this ABC video that featured on the 7:30 report, her family share their story with the ABC. Cancer Advisor has a range of personal stories, but we are always looking for more content. Register now to contribute content, […]

  • Angus’ story: Being a transgender childhood cancer survivor

    On the New Zealand website, Stuff, a transgender cancer survivor shares his story of his upcoming mastectomy. Angus Coleman was diagnosed with Langerhans Cell Histiocytosis (LCH) at just 16 months old. LCH is a rare type of cancer that can damage tissue or cause lesions to form in one or more places in the body. During his time with cancer, Angus had ongoing treatment from an endocrinologist which is now helping him take his next steps in his gender transition. “I was actually set up with an endocrinologist back when I was diagnosed with langerhans cell histiocytosis  [rare cancer]which is actually the doctor you need […]

  • Childhood cancer: Reflections from a sister

    In this short video from the American Cancer Society, Sophie opens up about what it’s like to be sister to a child with cancer. Sophie’s brother was just three years old when he was diagnosed with rhabdomyosarcoma. Although her brother survived his cancer, Sophie talks about the lasting emotional impact it has had on her. She talks about her experience as a sibling, noting that cancer had a profound impact on her formative years. When a child or a young person is diagnosed with cancer, the enormity of this is felt throughout the family. In particular, siblings of any age feel the […]

  • Coping with cancer at university

    In this article on UK news website The Guardian, Robin Cannone shares his personal experience of university as a young person with cancer. Cannone was diagnosed with a type of lymphoma, the most common cancers among 15- to 24-year-olds, representing 21% of diagnoses in the UK. I was looking through my hospital room window and imagining what I’d be doing if I hadn’t been diagnosed with cancer. I wanted to be going clubbing and worrying about university deadlines like a normal 20-year-old – not stuck indoors with a syringe in my arm. -Robin Cannone, young person with cancer Cannone acknowledges the important part that […]

  • Leaving hospital

    When a child or young person finishes cancer treatment it can be a time of mixed emotions. Often this is a long anticipated event, and when it feels like they should be happy and celebrating, families may also feel anxious and overwhelmed. Leaving hospital and going home will be a different experience for each person, but Cancer Advisor has some resources on finishing treatment that may be useful. “Leaving hospital can be a scary time for a lot of families. They talk about leaving the safety net of the hospital, leaving their oncology family. Often losing this close support is the […]

  • Nerida’s story: Turning Brisbane gold for kids with cancer

    The 1st of September is our D-Day anniversary, so this year I decided to channel my energy into something positive. I turned Brisbane Gold. Brisbane City Hall, The Story Bridge and Victoria Bridge all shone gold for Childhood Cancer Awareness. This is how it happened: Receiving a diagnosis On the 1st September 2015 my Son Xavier was diagnosed with Stage III Embryonal Rhabdomyosarcoma of the bladder at just 23 months of age. We had to move to Brisbane from Townsville for treatment and as I knew very few people here, I started a Facebook support group page for the oncology […]

  • Caring for a son with cancer

    This New York Times documentary follows the story of Regina Hensley and her son Andrew as he fights an aggressive form of cancer, Ewing’s Sarcoma. For years, Regina Hensley struggled with addiction, even once attempting suicide. When her son Andrew was born, he gave her a reason to live. But when he received his diagnosis at 13 years old, Regina had to search for meaning once again. ‘Without Andrew, I can’t imagine what life would be about.’ -Regina Hensley In response to the documentary, the Times received almost 100 responses from parents who were caring for a sick child. Cancer Advisor […]

  • Born with cancer

    This article, published by the Dana Farber Cancer Institute, features Carrick Stafford Wood who was born with acute myeloid leukaemia (AML), a rare type of cancer. Carrick didn’t leave hospital for the first six months of his life, but finally returned home on Christmas Day. “It’s unusual [for a baby to be born with cancer]but it can happen. The most common cancer in newborns is neuroblastoma – a rare cancer of the developing nervous system (…) neuroblastomas and teratomas in newborns are usually very treatable, and most children are cured. Infantile leukemia is hard to treat, but again, with aggressive therapy, we […]

  • Working through treatment

    In this 11-minute TED Talk, lawyer Sarah Donnelly talks about her experiences working through treatment for breast cancer.  You can find a range of resources on work and study here. “Back at work I handed over the urgent things (…) but at that moment work wasn’t my priority. I was thinking how I was going to tell my friends and family I had cancer. I was wondering if my partner and I would ever have an opportunity to start a family (…) Work was about to play a huge role in my treatment and recovery. My job that would give me […]

  • Ritchie’s story: Caring for a child with cancer and Down syndrome

    In January Ritchie Farrugia was told his six-year-old daughter Bella had Acute Lymphoblastic Leukaemia also known as ALL. Bella also has Down syndrome and at the time of diagnosis, Ritchie had already been her full-time carer for the last four years. Cancer Advisor spoke to him about being a dad in a children’s hospital ward and how Down syndrome affects cancer treatment. What’s it like being a dad in a children’s hospital ward? The first few months I stayed at the hospital full-time with Bella. My wife’s back is not too good, not that mine was great but, it was […]

  • Bereavement and grief

    Bereavement is the loss of someone through death, and grief is our response to loss. The grief that follows a young person’s death lasts a lifetime, and losing a child to cancer is one of the most devastating things that can happen to any family. When your child dies is a booklet from Redkite that uses the real experiences of bereaved parents to help other parents and carers following the death of their child.  It is important to remember that grief is personal and unique – everybody grieves differently and that’s okay. There will be a number of different factors that will […]

  • Unravel Pediatric cancer … until there is a cure

    Unravel Pediatric Cancer is a US based not-for-profit organisation working to spread knowledge about the realities of childhood cancer. They raise funds to: support research that investigates the causes and mechanisms of paediatric cancer; develop more effective and less toxic treatments; and find a cure. Unravel has produced an infographic to articulate their mission and show some statistics about childhood cancer in the United States.    After her daughter was diagnosed with diffuse intrinsic pontine glioma (DIPG), Libby Kranz co-founded Unravel. DIPG is a type of brain cancer which doesn’t respond to chemotherapy and is terminal. She recalls: Her doctor […]

  • Battle Weapons: A coping guide for young people with cancer

    Hi, my name is Nell and I’m the author of Battle Weapons: A coping guide for young people with cancer. I’m also a nurse and a cancer survivor. In high school, when we started the discussion about our future, my career advisor suggested nursing. This really appealed to me; to serve and support people at their most vulnerable is a great honour and privilege. Nursing is very diverse and I wasn’t sure for a long time where I wanted to take it, until I was diagnosed with cancer. I know my life’s purpose is to help those with cancer, particularly young people. […]

  • Kids Kicking Cancer: martial arts therapy

    Kids Kicking Cancer is a not-for-profit organisation that teaches the mind-body techniques of Martial Arts instruction, breath work and meditation to empower children beyond the pain and discomfort of disease. Kids Kicking Cancer now offers help and services to not only cancer patients, but any child in pain from a serious illness. They currently operate the Heroes’ Circle program in America, Canada, Israel and Italy and support ill children and their siblings aged 3-23 years old. Using martial arts therapy, Kids Kicking Cancer staff teaches ill children and their siblings to: Regain a sense of control over the chaos of their […]

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