|To the Editor: Father should realize McKenna is not yet 'cured'|
|Written by Robbie Harding|
|Wednesday, 08 August 2012 09:25|
As the mother of a 14 year old daughter with Down syndrome who has battled A.L.L. leukemia since August, 2010 and (hopefully) finishes treatment in December I am stunned by Mr. May's refusal to give permission for his daughter, McKenna, to accept a Make a Wish trip.
He states "using MAW for a child who is free and clear of illness is an improper use of donations made to the organization. I think it should go to kids who only have six months to live." That's a noble statement if he plans to pay for the trip himself to preserve funds for other children.
MAW representatives have stated McKenna qualifies, and their web site clearly states a child facing a life threatening medical condition qualifies.
McKenna is not "cured" until five years from end of treatment. The ugly truth is she could relapse without warning. There is no crystal ball to predict a six month window.
Leukemia treatment is brutal and is a marathon; 2 - 2.5 years for girls. Frontline treatment lasts six to nine months. My daughter's port is accessed with a thick, one inch long needle. Picture a giant thumbtack jammed into her chest. Every week a child receives IV chemo, sometimes several different drugs, sometimes shots given at home and sometimes extremely painful shots jammed into their thighs at clinic. Then there are the frequent spinal taps, sometimes every week. My daughter is sedated, but awake during the spinals and she moans and cries. Chemo is injected into her spine also.
After frontline treatment IV chemo is "only" monthly, spinals every three months, and pills are taken every night.
My daughter's treatment has been fairly uncomplicated, but it's involved nausea, vomiting, pain, fatigue, isolation at home or inpatient, blood and platelet transfusions. The scariest incident involved involuntary flailing movements of her limbs and trunk as a side effect from spinal chemo. She missed her entire sixth grade school year other than a few mornings.
Other children are not so lucky and experience life threatening or fatal side effects. Some kids relapse and die from the relapse.
How can a parent deny a 4-year-old girl who has spent half her life battling cancer a trip that will bring some fun and normalcy into her life?
Bless the generous people who stepped up with donations for McKenna and may she live a long life.
Overland Park, Kansas
Front Page Stories
|Photographer finds picture perfect career
05/18/2013 | JACK CARLE Sentinel Sports Editor
Elizabeth Lee. (Photo: J.D. Pooley/Sentinel-Tribune) A passion for photography ha [ ... ]
|Pemberville woman fights incurable disease|
05/18/2013 | PETER KUEBECK Sentinel Staff Writer
Karen Williams talks about scleroderma with her husband Charles at their home in Pemberv [ ... ]