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Starlight Gala Dinner: November 13th, 1999 The
following is the text of the speech given by Michael at the annual Starlight
Children's Foundation Gala Dinner on November 13th, 1999 at the Plaza Hotel in
Toronto. Good evening. I am honoured to
speak to you about my son, David who passed away on June 20th, 1998
at the age of 11 ½ years. I do ask for your understanding as I bring a more somber moment to this
truly remarkable and entertaining evening.
Yet, I feel it is appropriate that we take a few moments to focus
attention on why we are gathered here this evening – our children. I use the term “our children” for I firmly believe
that all you here this evening to support the Starlight Foundation in its work
have become a very large extended family to those children who have been helped
in the past, and for those who will be helped in the time to come. In preparing for my talk tonight I was struck by the obvious realization
that no words of mine could in any sense convey to you the life, the courage,
and the immense capacity for love and joy that existed in a bright blue eyed
boy who touched the very souls of the people who came in contact with him. Likewise I feel inarticulate expressing the
overwhelming sense of loss felt by those of us who knew and loved, and love him
still, one that has taken root in our hearts and resides there as an ever
present ache. I can only tell you that
in the midst of what now must pass for a normal day I can be flooded with a
wave of numbing grief, a 30 second melt down.
As the author John Irving wrote: "The grief over lost children
never dies; it is grief that relents only a little " Our son, Mary’s brother, my buddy boy, David Gregory Schneider was born
on November 11th, 1986 – Remembrance Day. I will never forget the circumstances of his arrival for as a
newly hired teacher my Superintendent had come to evaluate my teaching skills.
The school secretary interrupted the class to inform me that I had an emergency
phone call and the students, aware that my wife was expecting, burst into
applause hoping that this meant they would get out of class early. The
superintendent interpreted this ovation as a sign that my students were rooting
for me, and so gave me an outstanding evaluation. For the first of many times I
had reason to be grateful to my son, and from the first moment my wife and I
embraced him newly born to that moment when we held him while he lay dead on
the hospital gurney, we would repeatedly be grateful for his 11 years, seven
months and nine days presence in our lives. In the summer of 1996, David, aged 9, started developing a stitch in his
side. After a summer of baseball and
soccer we were not alarmed. But then
the stitch became a pain which was diagnosed as chronic constipation. On Thanksgiving morning he woke up and said
his legs felt funny and he could not walk properly. Finally, disillusioned after a stay in the local hospital and
numerous times in emerg, we were unable
to take his distress any longer and took him to the Hospital for Sick Children
on Monday, October 21st. At
the end of that long day we were sat down on a bench by the neurologist. An emergency MRI revealed a tumor lodged
between his spinal column and chord. An
extended biopsy the next morning confirmed the worst… anaplastic, B large cell
non Hodgkin’s lymphoma…. Our world fell apart. To remember David is to remember his capacity to love. David had many remarkable gifts – drawing,
acting, singing… making people laugh. Despite all this giftedness, I would
say that it was his sensitivity for others, his compassion, his love which most
characterized him. One nurse at Sick
Children’s emergency told him he was the nicest and most polite child she had
ever cared for – even the blood ladies from phlebotomy who came to jab needles
in his veins were rewarded with a thank you from David. It was his gentle loving ways that our
parish priest Monsignor Brad Massman
chose to emphasize at David’s funeral when he said: I remember a young boy who was not afraid to tell his sister how
much he loved her… to love is to remember… Do we not still love David at this
moment as his love abides within us… and around us… and among us?” Anyone who
knew David remembers his love for his beloved cat Butterscotch who was his joy;
he would proudly proclaim that he was his cat’s father, and he began a journal,
dedicated to Butterscotch. In the last
entry in this journal of feline love and devotion made in August of 1997 David
wrote: “I have not been getting a chance to write anything because last October
I found out I had cancer. It was going
to be easy but then the cancer came back which is called a relapse. Anyway, Butterscotch and everyone else has
been with me all the way… Whenever I am in the hospital everyone says he misses
me so I talk to him on the phone and tell him everything is okay.” The most stressful thing about living with pediatric cancer is the
pendulum swing between hope and panic.
An originally optimistic prognosis seemed to be confirmed by how well
David was doing. Discharged 10 days
after his diagnosis and surgery, David sailed through induction therapy and was
declared to be in complete remission in December. As 1996 came to a close we were hopeful for a happy outcome as he
entered the second round of therapy which was to last 10 months. His passion for drawing found new expression
and a lot more time as he constantly drew more and more cartoons. One of them, drawn during his March ’97
chemo admittance was entitled “Nurse’s Nightmare” and depicted a Nurse being
chased down the hospital halls by a swarm of IV poles all going clamp –
beep…clang… anyone who has spent anytime on 8A and watched the nurses’ – those
glorious nurses – run from IV pole to IV pole – would appreciate the humor of
the picture which hangs to this day at the Sick Kids Nurse’s station on 8A . The details of David’s unexpected and sudden relapse while still on
primary therapy and the subsequent year to his death, a period that saw him
undergo 7 different chemotherapy regimes, would fill volumes. I wish to mention two events. One – the introduction into our lives of Dr.
Sylain Baruchel who had recently arrived at the hospital to begin the new agent
therapies program and who became David’s new primary oncologist after the
relapse. We knew we would love this man
when he told us “I want to fight for David” and who, along with his staff never
once reneged on that promise. The
second event was when I was in clinic with David during a blood transfusion a
month after his relapse when I heard that the Star Light woman was on the
floor. With a “there she goes” from one
of the fathers; I jumped into the hall and almost literally landed on Laura
Hogg. Thus began our association with
Starlight. You have never experienced anything quite like a 10-year-old boy being
told that he was being granted practically any material wish he desired. It was the kind of decision that I think
every child dreams of and with his usual desire to make sure he did the right
thing David decided that he was going to wait until after he had recovered from
his scheduled fall bone marrow transplant to go on his trip because he wanted
to go swimming – how David loved swimming – he wasn’t very good at it, but he
loved it. I can well remember him
looking at me with this earnest expression “… Dad, what do you think I should
ask for?” It was a decision we were so
glad to assure him was his, and his alone.
Of course waiting for his wish didn’t stop him from enjoying other perks
that come from being associated with Starlight such as a Blue Jays game from a
Skybox or seeing Elvis Stojko at the Gardens.
The thing David most wanted aside from his trip, and waited for quite
impatiently, was the opening of the Starlight room at Sick Kids. It’s a shame that David died a few short
weeks before this most special place, where kids are free to be kids,
opened. In his typical desire to “share
the fun” David decided on a trip to Disney World so he and Mary could take part
in the Disney Institute cartooning workshop.
David’s passion for drawing won out and thank God for that. With bad CT results in October and the cancellation of his transplant,
it was suggested by the staff that it would be a good idea to go on the trip as
soon as possible. Joyce and I knew what that meant although David was puzzled
by the change because, you see, he assured us, he was going to get better. And so our trip to Disney World
was set for December and the start of a promising, less toxic, never before
tried in Canada chemo therapy, meant that David was in excellent shape and
spirits for the trip. Not even a
13-hour wait in Emergency the day before the flight to receive platelets could
dampen his enthusiasm. When I remember that trip, and I look at the pictures,
I don’t remember a sick child, let alone, in hindsight, a dieing child. I remember a child who was having the time
of his life… who was enjoying every moment and savoring every experience. I remember a family who was freed for 6
short days from the chains of blood tests, the journeys along the 401 to and
back from clinic, or late at night, to emerg.
David truly lived off that trip for the remaining 6 months of his
life. He was enthralled by the
cartooning workshop and used his Disney knowledge to create his thank you cards
to Laura and his wish coordinator Cathy Diamond. But of course the majority of David’s time in Orlando was spent
in the theme parks. He packed as much
in as his parents could endure. Now
David didn’t like the idea that a wheel chair had been ordered for him so that
he wouldn’t tire out – he didn’t want to be different from other kids. It wasn’t until I began putting ideas
together for this evening, as I reflected on David’s life, that I recognized
his determination not to be confined by the label of a child with cancer. But he accepted the wheelchair with some
enthusiasm when he realized that it put us at the front of every line and that
we could do the rides over and over again without a wait. Smart kid. Of course between rides he would
walk, or insist upon pushing one of us. How he loved that trip. During his final hospital admission in March
of 98 David advised a favourite nurse who was planning to honeymoon at Disney
world in the summer as to which rides were the best to go on. She sat on the edge of his bed while he marked
out in her brochures which events she had to do. After David’s death, she
shared with us that she went on the Tower of Terror thinking of David; ‘If
David could do it’ she said ‘so could I’.
It was with great courage that David continued the fight even to the day
of his death when worn out and exhausted by the struggle to breathe as the
cancer rapidly filled his lungs he turned to us and said, “This is too much”
and died. I don’t believe I can ever in
my life be as courageous as my son. Two short days ago on David’s birthday, my wife and I placed 13 roses on
his grave. 11 red for the birthdays he
spent with us and 2 white for those spent in his eternal home. My son did not have a party or a cake or
candles to blow out. But I know my
buddy boy, the boy who was not afraid to visit and play with his friends who
were dieing themselves from this cursed disease, this boy of compassion,
empathy and love would want his wish on this 13 birthday to be a wish that
every child who faced what he faced, that every family who walked where we
walked, would be remembered and supported in their trials by the generosity of
people like you who support the Starlight Children’s foundation. You do not know the impact you have on our
lives. But David knows, and his mother,
sister and I know, and together we thank you. Thank you. |