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During the last two months of her life, Sophie
had been completely weaned off of the steroids. However, despite
continuing the alternative treatments, we just did not see the
improvements for which we so desperately prayed. Sophie’s symptoms
gradually worsened, and in the last few weeks, she could no longer
talk, walk, stand, eat, or sit. It was the most heartbreaking and
gut-wrenching thing to have lived through; for as a parent, it was
like watching your child being tortured. We always asked her if
anything hurt, but she always said no. She went through a period of
not wanting to read, watch TV, do stickers, or any of the things she
had loved. But the week before she died, she wanted to do all of
these favorites again, as though she knew she wouldn’t have any more
chances to do these here on Earth.
We were visited weekly by hospice throughout Sophie’s last couple
months. Sophie’s vital signs were perfect up to the last time they
were checked on the Monday before she died.
During the first week of October, Sophie actually had a few good
days in which she seemed a little more attentive to the world around
her and actually was able to eat a few bites of her favorites here
and there. On October 6, we all went to Marc’s work picnic. It was
an absolutely beautiful day and Sophie seemed to be content being
out of the house. She amazed us by eating bites of a hot dog,
hamburger and potato chips. She was also able to swallow liquids
without using the syringe that we had been using the week before. We
were delighted to see these improvements, and we hoped and prayed
that perhaps it was the miracle for which we had been praying . Even
after the picnic, although she was tired, she had one of her best
days. Upon returning home, she threw up, as she had basically been
doing daily for the last few months. Marc cleaned her up and took a
long bath with her. (At the end of her illness, she could not
support her weight, and the only way to give her a bath was to get
in with her.) Looking back, those baths were wonderful times as we
would hold her tight and repeatedly pour the warm water over her.
Never in a million years did we guess that would be our last day
with Sophie. Although we knew from the beginning that the odds
weren’t in our favor, we weren’t prepared to be holding our precious
Sophie in our arms that night as she took her last breaths…but then
again, what parent would ever be prepared for that day?
After having fought an amazing battle, our Sweet Sophie Girl left
this earthly world at 11:55 p.m. on October 6, 2007. We miss her
dearly…she left a very large void in our lives and in our hearts.
Our prayers from the very first days of this horrible journey were
that God would perform a miracle…the miracle of Sophie’s survival.
Although we were not granted that miracle, we also prayed that her
name and legacy would make a difference in this world. As the days
go on, we are continuing to ensure that this miracle lives on.
Many of us already know that Sophie’s name and legacy did make a
difference in our worlds, and although we only had her here for a
short time, the world and we are much better for having known her.
Our hopes are that through awareness and fundraising, we will
someday see the day when a cure for brainstem gliomas is found. We
are dedicated to doing anything and everything we can so that not
another child will face this fate…it is then that we will be sure
that our miracle was granted.
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