In
Loving Memory or Mom
Corrections
FROM GRIEVING TO OUTREACH |
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In her struggle with carcinoid, my mother welcomed any procedure, no matter how experimental, in the hopes that, even if they did not work for her, that her experiences, her sacrifices, might help save others with carcinoid at a later time.
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Where To From Here? When Mom passed away, I recall leaving the funeral and heading home feeling an ache, an emptiness and a whole list of regrets. I had a chance to see Mom before she went in for her second liver embolization, but chose to wait until she got out of surgery.
She did come out, but never came to. I had one final chance, and again missed it. Standing at her bedside during the final hours, weeping and repenting as she lay there unconscious, seemed little consolation.
So now, back home and contending with the loss and regrets, I will always remember sitting out at the end of our country driveway, beneath our homestead sign, gazing across the corn fields, staring into the distance and appreciating the presence of my then-four-year-old daughter, who was sitting on my shoulder, keeping company.
A Course to Pursue. My sister, meanwhile, was determined that this experience not pass in vain. Much was learned from mom's journey, and Jean had logged nearly every moment, as caregiver, researcher and advocate.
She first drafted extensive text, compiled and organized to be a book for others who would have to act as an advocate on behalf of others with rare diseases that urgently beckoned aggressive treatment. Without a familiar nom-de-plume to ensure ready book stand sales, however, publisher interest in Jean's book waned before it had opportunity to wax. The only display of interest was from a publisher who wanted to adapt it for part of the "...For Dummies" series of books.
My sister was not about to let something so dire and serious be so commercialized or trivialized in that manner. A "Dummies" book might make sense, or even be appropriate in several other settings, but it was inconceivable to her how anyone in a battle for life would find much suitable humor in a medical "Dummies" book.
Fortunately, Jean's research on the Net in Mom's behalf had reminded her that there was pitifully little out there in support for others with carcinoid.
Thus, she was soon to beget the National Carcinoid Support Group, so others would not receive the dearth of information and support Mom had to discover for herself.
THE
BEGINNINGS OF THE NCSG,
AS THE MEMORY AND TRIBUTE CONTINUES
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