Childhood Cancers

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Childhood Cancers
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    What do you find to be the most challenging about a cancer diagnosis?

    Getting a cancer diagnosis is many things — heartbreak, anger, pockets of simplicity, grief, even gratitude. But there are parts of it that straight up suck.

    What’s been the #1 challenge for you or a loved one?

    #Cancer #BoneCancers #BreastCancer #OvarianCancer #LungCancer #ThyroidCancer #lymphoma #ChildhoodCancers #MentalHealth #ChronicIllness #ChronicPain #Caregiving #Grief

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    What advice would you give someone recently diagnosed with cancer?

    Being diagnosed with cancer can certainly be scary, confusing, and frustrating — just to name a few of the whirlwind of emotions that may come up.

    If you could give any advice or words of wisdom to someone newly diagnosed with cancer, what would you share?

    🎧 🎙️ If you're up to it and would like to listen, feel free to check out this Mighty Podcast episode on what it's like living with a rare cancer:
    Living With A Rare Cancer

    #Cancer #BoneCancers #BreastCancer #OvarianCancer #LungCancer #ThyroidCancer #lymphoma #ChildhoodCancers #MentalHealth #ChronicIllness #ChronicPain #Caregiving #Grief

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    Raising a child with stage two cancer

    At first we didn’t notice anything unusual. Riley was still the imaginative and energetic little 4 year old we knew. The first thing we noticed was big ugly bruises all over her body, we didn’t think much of it since she was pretty active. We assumed she fell of the monkey bars, or tripped while doing hopscotch. After a little while bruises started appearing where they didn’t belong, like in her armpit or on her scalp. There were also the nosebleeds that were a constant recurrence. Me and my husband, Mike, had an appointment for Riley in a week when she got sick. She couldn’t hold anything down. She usually flushed it down before we saw it but one time when I was with her, she got sick and it was bloody. I called for my husband who scooped her up and we rushed to Children’s Wisconsin hospital. They did blood tests that showed abnormally high numbers of white blood cells. they did more tests, MRI’s , EEG’s, bone marrow tests, and more. a few days later we got the horrific news that Riley, our sweet little ball of energy, our angel, did in fact, have #ChildhoodCancers. Stage two themighty.com/topic/Leukemia.

    The doctors suggested chemo but he said there was a high possibility that Riley would not survive. She has had 2 years of chemo and 1 surgery. She is still fighting and the doctors are amazed at how far she has come. even without her blonde hair she is the cutest little 6 year old in the world. 6 months ago I found out I was pregnant. a little boy. Riley was ecstatic when she heard the news, so was my husband. The doctors still say that Riley might not survive, even if they don’t have hope I do. Riley recently took a turn for the worst. Her vital signs dropped and her blood cell count was low. It came to a point where she had to be put on a ventilator. She is doing better now and is still my little sunshine. She had an open heart surgery to remove a tumor from her chest a month ago. I will post updates on her treatment. This photo was taken by my husband, during one of her Chemo treatment days.

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    How has cancer impacted you or your family’s health story?

    For World Cancer Day (February 4th), The Mighty is honoring it by spotlighting two different cancer stories: that of a survivor and that of a caregiver.

    ⭐️ Meet Mel ⭐️

    The In-Between: Meet Cancer Survivor, Mel Hebert

    ⭐️ Meet Jae ⭐️

    The In-Between: Meet Caretaker, Jae Cobb

    This post (and day) is for you, cancer fam. We honor your journeys today. 💖

    #BoneCancers #BreastCancer #Cancer #CervicalCancer #OvarianCancer #ChildhoodCancers #Caregiving #Leukemia #ChronicPain #Grief #worldCancerDay #MentalHealth #CheckInWithMe

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    Children's cancer awareness rocks

    Just finished a collection of rocks and blogs I'd had running last month for children's cancer awareness month and thought I'd come and show you guys now I have a group pic.

    #Cancer #ChildhoodCancers

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    My name is kassi. I was referred to the The Mighty because of my role as a caregiver and His Mama Bear.

    #MightyTogether #Caregiving #ChildhoodCancers #InvisibleIllness

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    Practice Wordless Observation#Cancer #Caregiving #MentalHealth

    Young siblings of a childhood cancer patient can find it frightening and confusing.

    While many hospitals and care facilities offer programs and resources for siblings of childhood cancer patients, attentive listening and observing a healthy sibling can reveal a great deal of information, including fear.

    This lesson came to me when I met a family, whose infant daughter had been diagnosed with a brain tumor. She had been hospitalized, and grandmother was bringing her five-year-old brother to visit.

    A child life specialist suggested that the brother might like to take a picture of his sister in her pretty new pajamas. She then handed me the camera, and upon the boy’s arrival, I introduced myself and offered it to him. After fiddling with the camera for some time, he walked over to his parents, took each one by a hand and clasped their hands together. He then backed up and took a picture of them.

    Though he clearly did not understand what was wrong with his sister, he wanted photographic proof that together his parents would take him home and keep him safe. All this information without even asking a question.

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    Rare chronic disease awareness

    Every week and month, sometimes daily, I read about a rare or chronic disease awareness day (week, or month). As someone who has been diagnosed with such a illness and helps to run a national patient group for those who have this disease, I wonder how we can now stand out in a crowd of a hundred autoimmune diseases and over 7,000 rare diseases according to NORD. Then consider the common diseases that overshadow us.

    We all have a central message: "We have ________and need effective treatments and cures." With such a universal endpoint as our goal, how can all of us be heard above the din?

    There are broader based groups such as The American Cancer Society, American Lung Association, American Heart Association and many, many more. These groups tend to focus on patient education and advocacy/policy efforts at a national level. And yet the "little guys", often patient founded and volunteer run groups and organizations need to be heard as they are often those "in the trenches", experiencing the daily burden of their disease.

    Pediatric diseases and disorders make up about 90% of all rare diseases, without a treatment according to Global Genes) , and too many without any research efforts ongoing at all. This is dismal and doesn't represent our country's health care objectives. The same is true for adults.

    While we willingly treat heart disease and its consequences without shaming the patient, liver disease has an enormous stigma about lifestyle choices which can cause liver disease (alcohol abuse, illicit drug use, unsafe sex practices), most of the liver hundred liver diseases known are not caused by lifestyle choices.

    According to www.pinmart.com, these are some (edited for space) of the other awareness days in September:

    September 21st: World Alzheimer's Day (Purple)
    September 29th: World Heart Day
    September 5-11: Suicide Prevention Week (Teal-Purple)
    Childhood Cancer Awareness Month (Gold)
    Gynecologic Cancer Awareness Month (Teal)
    Leukemia Awareness Month (Orange)
    Lymphoma Awareness Month (Lime Green)
    Sickle Cell Awareness Month (Burgundy)
    Ovarian Cancer Awareness Month (Teal)
    Prostate Cancer Awareness Month (Light Blue)
    National Alopecia Awareness Month (Blue)
    Thyroid Cancer Awareness Month (Pink-Teal-Purple)

    Then there are awareness colors. Our organization has a medium bright green for our Awareness Ribbon but over the years, others have chosen this color as well.

    September is PBC Awareness Month. This is the disease awareness effort I most relate to. Thank you to The Mighty for allowing me to add my day to the ever-growing list to be aware of. #Pbc #pbcers