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Hayden's Page 
Welcome to our Child Web Page. It has been provided to keep people updated about Hayden.
Journal
Friday, March 2, 2007 10:30 PM CST ~culmination~
march 2, 2007. hayden's last official day of treatment. today marks the end; the culmination of nearly three years. the event which would become the defining dialogue of our lives unfolded slowly with the deliberate nuance of a blazing summer day.
...august 4, 2004: a morning like two dozen prior; i dressed for work and prepared hayden for preschool. i loaded him into the '64 chevy truck daddy recently rebuilt and off we flew. as usual, i ran out of lunch supplies the day before so i made a quick stop at the gas station. cheese crackers, a banana, nutri-grain bar; all shoved into the blue monster face lunchbag with the beady eyes peeled off. by late afternoon my son would be sedated for an mri, only to awaken in intensive care- hooked up to a dozen machines-- receiving his first blood transfusion. the day and its minute details lie etched within my memories with frightening accuracy. the following weeks are linked together as a collective blur of medicines, vomit, and near daily trips to the hospital. in those early days we tried to hold together some sense of normalcy; we clung to the premise that life must go on as uninterrupted as possible.
...march 2, 2007: i've been floating in a fog all day. awash in my own thoughts, the memories flood my mind and clutter my every move today. mushing my way through a job interview; mechanically preparing hayden for the spinal taps we've had many times before. but today-- today is the crux of the journey. today hayden proclaimed his victory. on this last day, i finally pursuaded the doctors to let me stay throughout the entire spinal tap procedure. i wanted to *see* it; to experience and understand it at last instead of being ushered from the room as the betadine swab touches his bare back. i sat on a stool at the foot of the bed. our amazing nurse practitioner (nearly an oncologist in her own right) initiated the procedure while the anesthesiologist stabled his sedated, yet twitchy, legs. the women methodically performed what they've done with my son countless times before, as we engaged in a roundrobin discussion about his malignant hypothermia and what that will mean with the surgeons who will remove his port. the hollow needle protruded from his back like acupuncture; a plastic funnel at the end. drop by drop the clear spinal fluid dripped out the end of the funnel as our nurse caught the liquid in a test tube. not at all like i pictured. i sat and watched my son's spine drip like a leaking faucet.
at the end of the day our nurses and doctors gathered around and sang hayden a victory song and presented him with a present. being a compassionate mother, our oncologist immediately grabbed poor neglected ari by the hand and whisked him away to the treasure box, to receive his own special gift for suffering through the plight of the oft-overlooked little brother.
before leaving, i spoke privately with our oncologist and our nurse practitioner. i thanked them each for saving our son; for always giving him the utmost in care. i explained to them both that even though i desperately miss my family and my house in florida and the move has been tremendously hard, i have never once second-guessed our decision to bring hayden to doernbecher. from the moment i met dr. stork, i knew she was the right person to care for my son. it is apparent she and kelly truly care about the children, and it is important-- i told them-- that they realize how much their compassion means to all of our families.
tonight, instead of crushing hayden's medicines at bedtime i presented him the last pill as an offering to his victory. i handed him the tiny pill and knelt down. then i told my boy just how very proud of him i am, and how he's done such an amazing job the past three years. then i told him to go flush away the pill, because we don't need it anymore. it made him very, very happy to do this.
a very strange and cathartic array of feelings have accompanied the end of treatment. confusion-- such as when he will have the port taken out or how it will be to have his monthly checkups. relief-- that we can finally travel without worrying about medicines, and once the meds work out of his system we won't have to concern ourselves with normal childhood sicknesses. fear, also-- fear of the unknown. the routine we've established for three years is changing; ending. we have to find our sense of normal again. fear that our safety net is gone; undoubtedly there is comfort in knowing an oncologist is merely a page away during the night. i made a comment tonight about hayden not needing his medicines anymore since we're through with cancer, and his candid response startled an alarmed me. he calmly stated that he might have cancer again one day. i asked him if he thought his cancer would come back, and without missing a breath he said yes, because there are so many different things that cause cancer. hayden has always been very intuitive, so i have to admit his comments really rattled my nerves. but however the rest of our story continues to unfold, we'll write each page as it opens in whatever way that is best for our family. hayden is the strongest child i've ever known, and i am proud and humbled to be his mother.
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Hospital Information: Doernbecher Children's Hospital
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