Category: Life
Last Tuesday (Sept 4/07), we took Darrel down to the hospital for the first
of his normal bi-weekly appointments at the Clinic. The visit unfolded as
always, with things being set up the way he liked it. Although he was becoming
more physcially drained, nothing medically related was allowed until the comfy
chair, pillows, and TV/DVD were set up to his approval. Talkative as always,
he told his usual nurse about his weekend, and what his sisters and the dog had
done to annoy him lately. Fortunately, he only needed platelets, which don't
take as long as the blood transfusions...but long enough.
On the way home, he told us about how he thought Halloween night should
unfold. Last year, he had been able to walk around for most of the night, but
now he used his wheelchair to travel any distance more than a few steps (due to
both weakened muscles, and the dizziness caused by some of the medications). I
was told that I would push him around on that night, and "Air Lift" him to each
and every house he chose to visit to get his booty of candy. The joy of
expectation in his voice made this well thought out, yet simple plan a bit
harder to absorb, knowing that he would almost certainly not be around to enjoy
Halloween this year, or ever again. What I didn't know then, was this was also
going to be the last of so very many conversations we would have with Darrel in
the van, and the last time he would be out of the house again.
The next morning would bring signs that the end was getting alot closer
than it had seemed the day before. For the first time, Darrel actually said
that he didn't want to be moved downstairs in the morning, where the TV had
cable and he could watch his favourite shows. This was a big indicator that
even he knew something wasn't right at the time. Although the pain he was
experiencing was not elevated that much yet, the vomitting of blood and other
bodily fluids continued to show the cancer was doing its worst to destroy him
inside out. The pain would soon begin to rise steadily over the coming days,
and keeping him comfortable for any length of time would become impossible to
achieve. We would more and more frequently have to flip him from one side to
another to relieve the pressure that was being put upon his frail and tiny
frame. This would continue all through the day and night on Wednesday and
Thursday.
It was assumed that Darrel would have needed a blood transfusion on Friday,
considering where his counts sat on Tuesday. For most of August, he had been
more or less been kept alive by the blood and platelets he received at the
hospital. Eating and drinking were almost nonexistent, so those infusions
always gave him a little boost, and got him through to the next visit.
Considering his condition by this time, there was no way he could make the trip
without causing alot more harm than good. Though surprising mentally strong
and alert, it was an unspoken belief that this would be his last day. For most
people, whether adult or child, it probably would have been....but not Darrel!
You could tell by his face that all was not going as well for him as he
said verbally, but he never complained much about anything. He would just say
when it was time to change his position in bed, and if you didn't get to it
quick enough, he'd try to do it himself. When we would put his water container
close to his mouth, he'd rip it out our hands to control the situation any way
he could. Darrel had always been Mr. Independent in everything he did, and
that wasn't going to change now. When he did actually ask for help, you knew
he really needed it. This gave mixed emotions, as while as a parent you're so
happy to comfort and help your child in any way, but for him to be in the state
to have to ask for assistance for even the simpliest tasks was always
disheartening to contend with.
Due to being more heavily medicated on Friday, many of his thoughts became
disoriented and confused as the day wore on. It was very sad, yet somewhat
amusing him to talk about things that happened over the summer, or even a few
years ago. He was almost reliving conversations and events, which often made
it difficult to know if he was talking to you in the present or the past.
While Rebecca and I just rolled along with what Darrel was saying, it was more
confusing to the girls. He would be pointing out some aspect about the
commercial or TV show he was watching in his mind to them, and they would be
rightly baffled when the small TV in our bedroom wasn't even on at the time.
It was at least somewhat comforting that his wandering thoughts seemed to
mainly foscus in on happier memories. Whether it be remembering our family
trip to Wonderland, eating ice cream after a long bike ride, flying in the
helicopter, riding his favourite horse Daniel, or even fighting with Kira and
Lauren over something in the past, he still managed to bring a little joy into
what had been several long and draining days.
A more much unpleasant result of the extra medication, and his worsening
condition was the slowing of his breathing. Darrel was battling with apnea off
and on throughout much of Friday and Saturday. Knowing that the end was coming
closer and closer made the difficult task of watching my son barely breathing
that much more unbearable. The emotions were very intense during these
periods, as my eyes welled up, they would also be fixated on his chest to see
if his lungs would keep him with us for at least one more breath. There was
also a very real fear that his lungs could also fill up with an enough fluids
to drown him from the inside. When the noises indicated that this process
might be forming, Darrel was propped up higher to allow the fluids to drain out
better. As an additional measure, we had a machine brought in to remove such
fluids, but thankfully it was never required to be used.
Moments such as these continued through much of the day and night on Friday
and Saturday. Over this time, some of our extended families were around for
all or most of the day. My parents in particular had been at our house from
8AM until often 10PM ever since Wednesday. They should be strongly commended
on all the help they provided. Whether it be keeping the girls occupied, doing
the dishes or laundry, buying some groceries, or even bringing up a glass of
water for Rebecca and I as we sat with Darrel in the bedroom around the clock,
they were always around, yet at the same time respecting our privacy when
Darrel didn't want anyone else in the room. With all that was going on
upstairs, at least it was a relief to know Kira and Lauren were being tended to
by their loving grandparents. Knowing that made it that much easier to focus
on only Darrel, who needed more than he ever had before...or would again.
Considering what was to come, on many levels it would have been better if
Darrel had left us Friday or Saturday. Having a steady stream of the extended
family over those two days was appreciated, yet also very draining emotionally
too. Having not slept much since Tuesday, their well intentioned presence
often got too much to handle. After everyone had left, and the girls had went
to bed, the house was more peaceful and quiet. He was content and comfortable
then, and his words and thoughts never strayed from pleasant ones. Although I
will never forget those conversations, or the constant requests to be flipped
from one side to another, I would gladly give them up to erase how Sunday
unfolded for Darrel, Rebecca and myself, and all those who loved
him.