By Saturday night, Rebecca and I were completely exhausted from the many
days tending to Darrel. Although he had previously protested it in the past, I
was allowed to trade off with Rebecca in the bed through the night. He felt it
was just too weird having two boys sleeping in the same bed (sleeping in the
same tent while camping was an approved exception for Darrel). Neither one of
us slept much, as he still needed to have his position in the bed adjusted
frequently through the night. It was nice being just the two of us there for
those hours, as it had been a while since that had happened. His mind
continued drifting over past events, or he would mention something he wanted
for Christmas. He even called out for the dog a couple of times in his sleep,
but Lady was in the girls' room and could not hear him. That last week had
been the first time the dog had ever slept with anyone other than Darrel when
he wasn't at the hospital. With all the constant moving that was required,
having "Lady" there too was just too much of a nuisance fo all concerned.
While there was quite a bit of activity in the early hours of that Sunday
morning, he was comfortable and content, ready to face the new day...which
would be his last.
Throughout the last two years, care for Darrel at home had always been a
bit easier as Rebecca was a nurse. Her training and skills had allowed for
quicker responses to any changes, more freedom in options and choices for
treatment, and of course, more loving and personal care being given to the most
important patient a mother could ever have, her son. While all this, and much
more had always been an asset for Darrel, those actions would pale to what lied
ahead on this day. Around 8AM, the pain that Darrel was experiencing began to
increase in both intensity and speed. With her medical background, and alot of
reading and consultations, Rebecca was quite familiar with the workings of the
pain pump, not to mention the potential benefits of all the medications we had
at home, and make suggestions as to when they might be used. She was in
constant contact with Darrel's onclogy pediatrician and nurse (who were both
off that day, being the weekend, but wanted to handle Darrel's needs
personally, not just pass us off to the staff on call that day) from Grand
River Hospital, and could immediately make the requested changes to his
morphine levels. Without her experience, Darrel would have suffered even more,
as we would had to call his Homecare nurse, who after she actually got to our
home, would have had her own checklist of procedures and red tape to go through
before any adjustments could take place.
Fortunately for Darrel, the doctor's orders were carried out instantaneously by
Rebecca, but even then it was next to impossible to keep him comfortable for
very long. Although our extended families were once again gathered below us, nobody
else was allowed in the room. As hard as it was to contend with personally, having
someone else there trying to put their well-intentioned spin on the events
wouldn't have been appreciated to say the least. Over the next seven tense and
gruelling hours, both his base and bolus morphine doses were increased many, many
times with little success. After a few increasingly brief moments, the morphine seemed
to wear off, and Darrel would beginning to do something, though natural, that we had
almost never ever heard in the last two years....he would scream out in agony.
During this time, I'm not sure how fully aware he trully was of what was
happening to him. While the vast amounts of morphine most likely did help
reduce the suffering the cancer was bombarding him with, it was also most
certainly effecting his state of mind. The previously pleasant visions he was
having had turned dark and frightening. The drugs, and the lessening amounts
of oxygen making it to his brain altered his perceptions and where his
thoughts drifted to. Darrel cried out that monsters were attacking him, and
even though he was for the most part unconscious, his frail little arms would
frequently move protect his face from whatever demon visions were assaulting
him. Rebecca and I could only sit there helpless, as the comforting and
reassurung words we said to Darrel were not being heard through the terrifying
haze that surrounded our son's mind.
It wasn't until about 3PM that he was finally medicated enough to remain
calm and sedated. The breathing apnea had once again returned, which in itself
was unsettling to view, but it was a relief compared to what had previouly
unfolded. I would like to think the demons were still not invading his mind
during this time, but he was probably only too drugged to mount any further
physcial response. There was alot of quiet reflection over the next hour about
what had happened since September 2005, the week before, that day, and what
would come very soon.
As Rebecca had seen many a patient in similar conditions, she informed me
that the slowing of his breathing would probably go on for hours, even perhaps
a day or two. It was decided that we would let those gathered below slowly
come up for a brief moment to see him one at a time. I relayed this
information. and was on my way back to the bedroom when Rebecca told me to get
there fast. She knew something had unexpectedly changed with Darrel, and it
most certainly had. I had just managed to return to his bedside, put his
little hand inside mine when long journey came to an end. At 4:06 PM on
Sunday, September 9, 2007 Darrel died.
Hours later, after everyone had left, I helped Rebecca clean up our son,
and dress him in some of his favourite clothes. Over the last week, he had
repeated asked to be moved to the couch downstairs, so he could watch favouirte
shows. Now that doing so would cause him no pain or discomfort, his wish was
granted. In some ways, it provided some peace to me seeing him there once
more, instead of being immediately removed from the only home he would ever
know. Darrel was always a stubborn little man, and it didn't seem right to
deny him that request any longer.
If Darrel had left us on Friday or Saturday, I'm sure the extreme sadness
that was all over our household that night would have many more layers to it.
Seeing him go through all the horrors on that Sunday gave his dying a sense of
being more of a release from the pain and suffering than it would have days
earlier. I would still much rather spared ourselves and Darrel what unfolded
that day, but it did bring the cycle of emotions full circle for me, which may
have helped me some what over the week ahead.
Although the loss was tremendous, we had known in the back of our minds
that this day had been coming for the last two years. Being diagnosed already
in Stage IV, there was not much more than a glimmer of hope from the outset.
Without his strong personal determination, Darrel would never have had it as
far as he had. The neuroblastoma and cancer may have ravaged and defeated his
body, but at no time did they even come close breaking his spirit, or desire to
go outside to run, play, or ride his bike once more.
Darrel Wesley Robb
May 26, 2000 - September 9, 2007
Rest In Peace Darrel.