Closure, Ripples, and Closure
Category: Life

The morning after Darrel's death, Kira came down with with me to funeral 
home to sit with him.   There was paperwork and other legal steps that needed
to be completed before he was cremated, and I didn't want him left alone, or
stuck in some dark refrigeration unit.  Though I was quite surprised that Kira
wanted to join me with her brother in one of the waiting rooms, the company was 
appreciated regardless.  It was a sad, yet quiet and peaceful morning waiting 
there.  Sitting by his side, he looked as though he was "just resting" his 
eyes, not sleeping, or as the case was, in the deep slumber you never wake 
from.

After the red tape was finished and filed, the four of us remaining, along 
with my father, loaded into the van to follow the hearse to the crematorium in 
Milton.  For over an hour, I followed it down back roads, with the fall leaves 
slowly changing colour, busy city streets, and even the 401.  It was the first, 
and hopefully the only time I'll have to tail a hearse around Southern Ontario 
for any reason.

Once we arrived, my father and I helped carry his casket into the 
building.  It felt very good to give his body one last Air Lift, even if it was 
only for a few steps.  We placed one of his favourite stuffed animals with him 
in the casket, and said our good-byes one final time.  I feel that doing this 
helped provide closure for all of us in that room.  It was the least we could
do for Darrel, who gave so much to all who knew him.  I've found out since then 
that accompanying the body to the crematorium isn't usually done, but our 
funeral director didn't seem to have any reservations about it, and it was what 
we wanted to do regardless.

By the time we returned home that afternoon, word of Darrel's passing had 
already began to spread around town.  Although we had as a family had just done 
the things to allow ourselves to come to terms with the events of the previous 
24 hours, for many others this was just beginning.    Like ripples on the water 
after a huge splash, Darrel's death also created an aftershock for many more 
distant family, friends, and people he would never have even met.  Cards, 
flowers, endless calls (fortunately we have Call Answer and Call Display), and 
people dropping off assorted foods.  All this was appreciated, common practice,
and understandable, but Rebecca and I, along with girls, had just achieved a 
small  personal sense of the finality to it all, and this ripple effect served 
to constantly bring it bubbling to the surface again.  It had only been a few 
days, but the continual flood of condolences were rubbing salt into an open 
wound.  On the flip side, I would probably have been more shocked and annoyed
if there had been a more limited, or no response what so ever from those in the 
community.

On Wednesday night, Rebecca and I took many of Darrel's favourite things 
down to the funeral home.  His GameBoy, bike, clothes, toys,  the infamous 
bottle of Flintstones, the "nurse whacker", his blanket, photo albums, and 
countless other things were placed around to those who came a better idea of
who Darrel was, and what he cared about.  A memorial slideshow was also set up
in one room, which was very moving to watch, even for those of us who closely 
shared all those memories with him.  It was still a funeral home, but it seemed 
less so, with many of Darrels' personal belongings here, there, and everywhere.

We had been seriously been dreading the visitations scheduled for the 
Thursday afternoon and evening.  What would people say?  What would we say? 
Who would come that we weren't expecting?  Who wouldn't come that we felt
should be there?  How would the girls react and cope to all that the days
activities would present?  The questions were endless beforehand, but they were
for the most part misplaced.

The afternoon session was slow, which was expected.  There was a greater 
chance to talk to those who came before the next mini rush came through.  I've 
always hated wakes where you feel like cattle being pushed through the gates, 
or something rushed down an assembly line.   Being able to spend some time with 
almost everybody seemed to lighten the atmosphere of the room.   That night, 
things were quite a bit busier, but there were still opportunites to have brief 
time-outs to take a breather, or socialize a bit.  Although the slideshow was 
quite well viewed,  and many were moved to see his bike near the head table,
the biggest attention grabber was having Darrel's dog "Lady" there throughout
the day.  The funeral director had no problem with this, and it seemed only
fitting that the dog was present.  Quite often she would sit up front on the
blanket that was always on Darrels' bed as family and friends passed by the urn
holding Darrel's remains.  Whether the dog understood any of the significance
of what it was doing, we'll never know, but she did appear to trying to deal
with the loss like the rest of us.

The funeral on Friday unfolded much like we had hoped for.  It was about 
Darrel, about his good times, and his struggles over the last two years.  There 
were several  religous aspects to the service, but they only added to the 
ceremony, not set the tone, or try to over power it.  For many in the room, it 
was the first time they had heard about some of the jokes and pranks Darrel 
enjoyed to play.  How everything that went wrong was always not his fault (and
I usually got the blame for it).  If they had never actually met Darrel in 
person, many walked aways afterwards feeling that in someway they had.  Closure 
had now come for everyone.  The hard part of trying to return to a new daily 
routine without Darrel in them will be a long one, but try to begin it, we
must.  It was the perfect send off for Darrel, which was the last and only gift
we as parents could do for our incredible and unforgettable son.  He may have
only been seven, but the way he handled all that was sent his way, he trully
went out a Man.

The Day Darrel Died
Category: Life
 
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.

                                                       My Son

                                                      My Friend

The Last Week
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.