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March 28, 2010 (8:00 AM - 1:00 PM)
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April 10, 2010 (8:00 AM - 11:00 AM)
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May 02, 2010 (All Day)
Hero Newsletter
Hero #3 Updates
| Hero Family #3 |
 Claire Denise Miller, blessed us on Saturday, September 21, 2002, at 12:35 p.m. – the exact kick off time of the University of Oregon Fighting Ducks against Stanford Cardinals football game at Autzen Stadium in Eugene, Oregon – it was a fitting sign that she was born to play. She exhibited advanced coordination and athletic skill very young, with the attitude and intelligence necessary for greatness. Her future was endless. Her life and ours changed forever on July 30, 2006, when she woke up screaming on our last night of a one week Tahoe vacation and became unconscious. We entered a nightmare of inexpressible comprehension when we learned of her hemorrhaged and damaging brain tumor and the very real and probable chance of losing her during her first surgery. But she proved them wrong. We were informed of her extreme brain swelling immediately after the surgery causing uncontrollable strokes and the ultimate fatal fate that could result from them. But she proved them wrong. In a coma for weeks, we feared complete paralysis on her left side and a life with little cognitive brain function. But she proved them wrong. She awoke with the physical neurological capabilities of a newborn baby at age four; having to learn to swallow, speak, sit up, grip, balance, crawl, stand and ultimately walk again; being told a full recover is unluckily and will take years. But she proved them wrong. After her strong physical accomplishments were reached in just two months, we discovered the darkness of the type of cancer that remained and were given less than a 15 % chance that the chemotherapy would show any signs of improvement. But she proved them wrong. Her tumor shrunk and was stable for 16 months, all the while undergoing clinical trails and extensive chemotherapy treatments that stripped her body to the edge of death and encompassed measureless fatal risks from complications and side effects. But she proved them wrong. When the tumor returned and doubled in size weekly, full cranial and spine radiation was the last option, yet included only a 10% chance of survival. But she proved them wrong…..again. She is one year post radiation and living large, engaging in some normal childhood experiences with all the vigor, strength and adventure of a true hero. There is no “cure” for her cancer as this type of tumor always comes back - it is a fearful life of waiting. The grief, anger, sadness, anxiety, helplessness, vulnerability, terror, and uninhibited loss of all our dreams for her are overwhelming and never seize. But she keeps us fighting with her smile, stubbornness and an infectious amount of hope. To try to articulate her courage and resiliency throughout her last 3 year combat is unobtainable. She might not be hospitalized today and tackling evilness this very minute, but the effects of her brain injury and extensive treatment show up regularly and remind us that she will need to continue to battle for everyday she brightens our world. Her future is unknown - but her presence is the real gift to those who know, adore and love her. She apprehensively agreed to an all girls, under 6, t-ball team this last spring, yet found she loved it after suiting up in full uniform and hitting a line drive down third base line - off the pitch - with the crowd cheering wildly. Her hand-eye coordination is significantly impaired, her running is slow and labored; and brings out her left side weakness, her reaction time is delayed, and radiation has left her weak and tired permanently. She has all the physical functions and core abilities as a normal 6 year old, yet her brain trauma and injury has left her with long term consequences that will never let her be a real athlete or participant like she now enjoys. Her social interaction and emotional growth with her peers has improved greatly with participation in kindergarten, girl scouts and recently t-ball. The uncomfortable, shy and grossly introverted girl, feeling everyone’s stares at her bald head or pale skin last fall – has blossomed with confidence lately. She is attending summer school right now to try to maintain her average kindergarten academic level as she plans to enter first grade in the fall – but only Claire can turn it into “school camp” and attend with such pride she left her friends with envy. She states she wants to be an artist and can spend hours designing, drawing and creating with her ‘arts & crafts’ basket of supplies. She loves hard and with loyalty….She fights harder and with hope….. She has cancer and is a real HERO! Please spend the time to visit Claire’s website, www.clairedenisemiller.com, produced and written by her mother and father since diagnosis in July of 2006. She continues to capture strangers’ hearts with her spirit and strength. |
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