Polycythemia Vera (PV)

    Age: 24

    "Anyone who has the privilege of knowing Ally and calling her a friend can see this bright sense of hope she much as Ally considers me her rock, she has no idea how much she is my rock."

    A Mother’s Love, A Daughter’s Fight
    *This story is a patient’s first-person experience and is not an endorsement of any drug or activity by MPNRF. Please consult your physician (preferably an MPN specialist) before making any therapy or lifestyle changes.

    It’s a story of a mother’s love and persistence, and a daughter’s fight. It’s a story that should be told because we as an MPN community will be stronger and more inspired after having heard it. It’s a story about a young woman’s beautiful resilience in the face of grief and anger and sadness. It’s the story of Ally DuVall. And it’s a remarkable one.

    When the words blood cancer and incurable are tied together for a twenty-four-year-old it’s not enough to accept that. Because if Ally, the much too young PV patient, is going to keep fighting, we should too. When Ally is a given a cancer diagnosis to hold onto for a lifetime, instead of the baby she was expecting, we may feel sadness, or anger at the injustice of it all.  But that’s not what Ally wants. She doesn’t want sympathy or to simply share a sad story; she wants to inspire you to keep fighting.

    The story of Ally DuVall is unlike others you have heard before. Not because it is wrought in pain and loss, but because it is even richer in courage, resilience, and hope.  Ally was just twenty- four when she was diagnosed with an advanced stage of polycythemia vera. Ally was also just twenty-two when she lost her son at thirty weeks due to a blood clot caused by her undiagnosed PV.  In just a matter of moments, Ally went from happily expecting to barely be able to get out of bed. She delivered a stillborn son and was becoming increasingly fatigued and was losing her appetite.  Subsequently, she was diagnosed with depression. Her mother will tell you Ally lost the beautiful sparkle in her blue eyes. Her mother will also tell you, she was worried her daughter had lost her will to live.

    And Ally will tell you, as she lay in bed with no energy she felt a mass growing on her side. She went to the doctor several times before she was heard. The first two times, she was dismissed as having postpartum depression.  It was an enlarged spleen though. A spleen that had stolen her appetite, and a disease that had stolen her energy and baby. And now finally a diagnosis, one that was taking nearly everything she had. Her mother will tell you she pleaded with Ally to take her medication when she was finally diagnosed. But Ally, lost in a world of heartache and pain deep in her bones didn’t see a reason.  The medication she was first prescribed made her feel even more terrible. She wanted to give up. And who wouldn’t be lost in madness if they were Ally? Who wouldn’t be angry at the doctor who told her when she was pregnant her blood work was strange, but not too strange. Who wouldn’t be angry at the doctor who wouldn’t listen to her and simply prescribed her antidepressants? What if? What if doctors had looked more closely and could have saved her son? What if it could have been different? These questions haunted Ally.  She was a mother grieving the loss of her stillborn child and now living with a rare blood cancer.  Ally’s mother Emily was deeply worried; her beautiful daughter was struggling to hang on in front of her.

    But Emily was no stranger in persisting for answers for Ally. Since the age of twelve Ally suffered debilitating migraines and was seen by several doctors, even a pediatric neurologist and prescribed countless drugs, none of which ever helped her migraines. Yet despite the migraines that plagued her youth, Ally worked hard throughout high school never losing her bright spirit and still managed to do the things healthy teens enjoy. She played volleyball, joined the dance team, and made the varsity cheer team.  And looking back Emily wonders if that was when the PV began for Ally.

    Emily recalls you’d never know her daughter was in pain all those years because Ally wasn’t one to complain and describes her daughter as being incredibly strong since she was a young child. As Emily says, “To know Ally is to know pure joy and happiness. She has had an extremely difficult and painful time after losing Kipton, and further after learning of her diagnosis, but she’s rebounded and truly is resolved to not let this kill her spirit. Anyone who has the privilege of knowing Ally and calling her a friend can see this bright sense of hope she has…as much as Ally considers me her rock, she has no idea how she is my rock.”  After being diagnosed with PV,  it was Emily’s persistence and seeking several opinions for her daughter that eventually paid off.  Ally finally found a medication and treatment plan that made her feel better, not worse.

    Ally is now regaining her footing in the world and says she has an angel named Kipton watching over her.  She reflects if she could make it through the loss of her child, she too can somehow manage to navigate cancer.   While Jakifi treatment lessened her physical symptoms and gave her renewed energy, she also found another weapon in her fight for healing. Ally began to regain her mental strength by seeing a therapist. Validating her feelings of anger and grief has brought Ally a sense of inner peace, relief, and healing.

    Ally’s story doesn’t end here though. It’s just the beginning. As anyone who has ever felt pain knows, if you sit with it long enough and meet it in the eye, there is something more there that you may find, something more powerful than the emotion itself. Strength. The strength to get back up in the darkest hour takes courage and faith. While the pain of loss may leave a permanent impression, Ally was able to get back up, reclaim her life and move forward with grace and acceptance. She’s now strong enough to work and loves keeping busy, and with a passion for design, she has plans of designing her own greeting cards someday.  She understands a thing or two about what it means to persist; she is her mother’s daughter after all.   Because for Ally, despite the pain, the world is still beautiful and her heart is still open to possibility and hope.  And as her mother will tell you, Ally’s infectious smile and spirit make the world more beautiful, and this is a young woman determined to not let the past get the best of her future.

    And so now, as an MPN community, whether you are a patient or a caregiver, hold Ally’s story in your heart and let her resilience inspire you to keep going when you feel you have nothing left.  And on your darkest days, let Ally’s light inspire you to live with an open heart and mind. This blood cancer awareness month do more than you can and give all that you can. For Ally’s future. For the memory of her lost son Kipton. For every other young woman who must fight this battle, or who already has, she will never have to fight alone as long as we as an MPN community stand with her on this journey.  Because tomorrow only changes if we do something today.

    Contributed by Jennifer Acker

    These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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