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    Four Words that Change Your Life Forever

    August 1, 2011 •  6 comments.

     •  Blog, News

    “Cancer Mama”. It’s a term used in today’s pediatric cancer world. One that didn’t exist when our mothers had young children, as the Centers for Disease Control now reports that cancer is the leading cause of death by disease in children under the age of 15.

    A cancer mama is a warrior and probably the fiercest of its kind. As a brave friend writes, “She shares the understanding of a mom’s innate instinct to protect her children. In the cancer world a mom feels helpless; she can’t take away the pain or cancer from her child. She can, however, fight as best as she knows how for our children’s comfort and well-being. With the exception of administering chemo and performing surgery, she learns it all. Med schedule, dosing, side effects, dressing changes, line flushes, giving shots, the list goes on. She researches, challenge the doctors, and consult with other cancer mamas.”

    If you’ve ever known a “Cancer Mama”, you know that they are truly guardian angels for their children. They manage their child’s cancer with the precision of a CEO, often developing spreadsheets that detail the dates, times and doses of medications that can run the length of a kitchen wall.

    I know too many of them. And yet, I am grateful for each and every one. As they are extraordinary in their strength and in the voices of courage that they are for our children.

    Heather Donatini is no exception, and as she shares her story below, I invite you to reflect on how many “Cancer Mamas” you might know and lend your voice in whatever way you can to protecting the health of the American children.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~

    “Your daughter won’t survive.”

    “Your son has cancer.”

    Two statements my husband and I have heard over the last six years. Four words a parent never expects to hear. Four words that rock you to your core and bring you to your knees. Four words that change your life forever.

    After five years of being happily married we were ready for the next step in life: children. That desire to start a family turned into years of trying. Eventually we conceived our first child – a daughter to be named Corinne. During my sixth month of pregnancy things started going wrong. Really wrong. After emergency surgery Corinne Faith entered this world weighing only 1 lb, 6 oz. She was with us for three days. She was termed a “partial molar pregnancy” and it was a miracle that she was born alive, perfectly formed; just tiny. A one in a million diagnosis, a “fluke.” We were devastated.

    The following year we got pregnant with our second child, a son. We were so excited and wanted nothing more than to be parents. Jarren arrived in 2006 and was a healthy, active newborn and toddler who hit all normal developmental benchmarks on time with the exception of delayed speech because he learned to sign.

    In April 2009 Jarren became very ill with what we thought was the flu. After 4 days of non-ceasing flu-like symptoms, we went to the emergency room where he was given IV fluids for severe dehydration and tested positive for Rotavirus. Once home his rotavirus symptoms stopped but he never seemed to fully recover. We noticed that his stomach was distended, his fingers and toes were cold, and he spiked fevers intermittently. This didn’t set well with us or his doctor so we were sent a couple times to the hospital for blood work, x-rays and ultimately a CT Scan.

    A CT scan revealed a mass on Jarren’s liver and with that news we immediately found ourselves in the emergency room at UCLA. Further tests and a liver biopsy confirmed the suspicion of cancer. Specifically Hepatoblastoma – a solid pediatric liver cancer with a 1 in a million diagnosis. We had just been hit with a second “1 in a million” diagnosis.

    Treatment began just before Jarren’s 3rd birthday. Chemo started immediately and we got a crash-course into the oncology world and what would become our second home – the hospital.

    Jarren was a champ through chemo. Yes, he had a lot of the side effects but they were kept to a minimum compared to other kids enduring the same toxins. Like most on chemo, the metals, mouth sores, and the nausea changed taste buds and the desire to eat. Doctors encouraged us to give him anything he wanted to eat. We were pleased when he ate a cookie or an entire box of Fruit Loops or Cocoa Puffs even though they were empty calories.

    Then one day a fellow cancer mama handed me a copy of “The Unhealthy Truth.” I devoured Robyn’s book and became angry at the misinformation we, as consumers, have about the food we are eating. Surely, if the FDA approves it, it’s safe. Or so I thought! Then I started researching and found that some believe sugar fuels cancer cells. I also learned about GMO’s. Suddenly, the gallons of soy milk that Jarren drank and the genetically modified sugar cereals he was downing, along with the rest of the processed food we all ate, made me wonder – is this what caused my son’s cancer?! We don’t know for certain.

    As Robyn O’Brien states, “once you learn this information you can’t unlearn it.” From that day forward we completely changed the way our family ate. Organic and natural food was no longer a luxury, it became a necessity. I only wished I knew this information sooner.

    Ultimately, over the course of 18 months our beautiful Jarren endured 16 rounds of chemotherapy, one liver biopsy, two liver resections, and one lung resection surgery. On November 1, 2010 Jarren lost his battle with cancer and earned his angel wings.

    In Jarren’s memory we have started the Bumblebee Foundation to help other pediatric cancer families enduring the same battle we did.

    Please visit us at www.bumblebeefoundation.org to learn more about our organization or www.caringbridge.org/visit/jarren to read Jarren’s journey.

      6 Responses to “Four Words that Change Your Life Forever”

      1. Janet Griffith-Reed

        Heather Donatini is an awesome woman who I pray for and applaud for her fierce love and caring of her child and that she let others share this journey with her family and maybe opened up some eyes to the important things in life not all the foolishness. God Bless their family and the journey they continue to go on.

      2. Beautifully written, my friend…..

        I too can not unlearn that the processed foods that I ingested, while pregnant, and what our children have since consumed, may have contributed to Malorie’s ASD diagnosis.
        It makes perfect sense to me (now) that what God produces is what we are supposed to eat- not what is artificially made in a factory!

      3. Lynda Castleberry

        I am in agreement that processed foods are not healthy for us and that they can affect our bodies and minds. Having raised an ADHD child, I was very conscientious of what I allowed him to eat and I could see behavoral changes when he ate highly processed foods. The Donatini family has been generous in allowing so many of us to be with them on all aspects of this journey they have been on. Most certainly, nothing will ever replace their loss, but may they find comfort in sharing what they have been through and may all this bring help to many others.

      4. Elaine Gorea

        Heather Donatini is an Angel without wings I am proud to call friend. Her love, dedication and desire to help others has few equals. Why we don’t know or hear about the dangers of processed foods is another miscarriage of the FDA. What does the FDA really do to protect children if they have not alerted parents of the damage processed food can and do give to little bodies–litlle organs? Many of us bonded with Heather, Jason and little Vincent when Jarren was fighting his battle w/ cancer, I don’t think we’ll ever forget that little boy with the million $ smile.
        Thank you Heather for your desire and dedication to protect children/families from the pain you lived through. You are and always will be very special and in our thoughts/prayers.

        • AllergyKids

          Heather is truly extraordinary, and her courage is a blessing to countless children and families in the face of the increasing rates of pediatric cancers being reported. Jarren was so fortunate to have such an amazing mother. His legacy will be far-reaching.

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