When you hear the diagnosis, it is what I imagine drowning must feel like. You start drowning immediately and itís a rapid descent. You free fall off the face of the earth when this diagnosis is delivered. Your brain and heart are exploding with pain. You are struggling to regain the surface, gasping for a breath of fresh air. You are drowning in your own sorrow. You are drowning in your own bodily fluids. Your eyes, nose, mouth, everything erupts into water all at once. The doctorís voice is a background buzz of garbled words. Sounds break through my drowning. They are words I have never heard before. Words like pons, glioma, and malignant enhancement. Words that I want him to stop saying about my daughter. Words like neoplasm, inoperable and "Iím sorry".
If a crevasse had opened at my feet that day and I had fallen into the fiery pits of hell, the shock couldnít have been more stunning, or the pain more profound. So started my journey into the abyss on April 29, 2000.
It was a whirlwind of decisions, information and transitions that first week. It was a time of constant phone calls. It was that painful email sent to everyone on your list. It was the call to work saying "Iím not able to come in today and I donít know when Iíll be back." It was discussions carried on at 2:00am after days without sleep. It was packing everything into five suitcases for an extended trip to North Carolina for therapy. It was walking out on my son. It was leaving him at home and telling him, "Be a good boy while weíre away." It was a diet of coffee and Advil.
I entered a world where no one elseís problems mattered to me anymore. Where no one else had pain of this magnitude. I was consumed with questions that had no answers. The world had dealt me a very cruel hand and I was angry and I was grieving. But grieving wasnít allowed in front of Faith. We had to maintain as normal a life style as possible. The order of the day was to keep it light and happy and upbeat. Denying myself that grieving, never venting that anger, was a challenge and the charade was wearing me down as the days passed into months.
Weíre now 15 months post diagnosis. Things are getting very difficult around here. Faith no longer has any strength. Her body sits limply in the wheelchair. She has lost the ability to speak. Her only movement is in her left arm. She must be carried to the toilet and rolled over in bed. Her breathing is shallow and strained. Every bite of food is a struggle to chew and swallow. Weíre on constant alert for choking. So if you see me please donít ask me how I am doing today. If I give the short polite answer, it wonít be honest. If I give the honest answer, it will make you uncomfortable.
The worst opening line I heard spoken by a doctor during this time was, "Do you have any other children?" The best was "There is hope." A man who knew that if you took away the parentsí hope you would shatter their future spoke those wise words.
Hope was that thing which enabled you to get out of bed in the morning and face one more day. Hope gave you the strength to silently watch as your child received yet another dose of toxic chemotherapy. Hope told me not to believe the statistics. The statistics were for every other child who had gone before, but I believed that we had a better chance then all the others. I believed and I hoped and I fought this as long as possible, but the demon was not to be denied.