Darrel's Memorial Playground
Connect With Us:
  • Home
  • What is Neuroblastoma?
    • Research Updates
  • About Us
    • Fundraising
    • Related Sites
  • Blogs
  • Quotes
  • Events
  • Images
    • Awareness Images
    • Neuroblastoma Awareness
    • Seasonal Images
    • A Parent's Journey
    • Videos

Feb 18/07 - An Unpleasant Overview

6/12/2011

0 Comments

 
An Unpleasant Overview 
Category: Life
 
It all started so innocently back in the Spring of 2005.  Darrel was 
complaining off and on about mild back and stomach pains.  We took him to the 
family doctor (at the time), and he couldn't find anything physically wrong
with  him.  The pains stopped for a while, so we assumed that he had just
bruised  something while playing with his sisters.  In August, the problems
began to  happen once more.  Because lactose intolerance runs in Rebecca's side
of the  family, we took him off all dairy products.  Again, this seemed to do
the trick  for a while, but we asked the doctor to confirm this with the
appropriate  testings. By early September, the pains were back, and were now
constant and  sharp.  We felt like the family doctor was in over his head, but
he refused to  send Darrel to a specialist, but wanted to run more tests
himself.  Finally we  took Darrel to an Emergency Room in another town, where
the staff recommended  that he see  a pediatrician as soon as possible.  The
next day, this happened,  and we were soon on the road to the Hospital For Sick
Children in Toronto.   After going overall the information with (it seemed like)
a million different  doctors,countless number of tests, they gave us the results
of their findings.   Darrel had Stage IV Neuroblastoma....Cancer. 
 
Darrel's pains were being caused by an ever-growing tumor inside his 
stomach, and along his spine.  While it was still expanding, it had been
rubbing  different parts of him internally, but once it had reached a certain
mass, it  more or less rooted itself around his adrenal glands and kidneys.  We
were told  that though the success/cure rate was high for Stage I and II, Darrel
was close  to mid Stage IV, where the outlook is poor(to say the least) when the
disease is  widespread at diagnosis.  Because he was otherwise in good health
and good  spirits, they felt there was still a "reasonable" chance that he could
be  cured.

What would follow would be 6 rounds of heavy chemotherapy between 
September 2005-January 2006.  Although his body was continually being bombared 
with lethal amounts of  drugs, and the loss of his hair (Darrel wasn't worried 
about this, because unlike Daddy, his hair would grow back someday), his smile 
and the shine in his eyes were ever present.  After every round of chemo, when 
I'd drive down to Toronto to bring them home, as soon as he was unhooked and 
cleared to leave, Darrel would left out a gleeful cry of  "Freedom!" as he took 
off down the hallway.  Since he'd spent the previous four days in a hospital
bed  (not to mention what the "medications"  had done to his body), he didn't
get  very far, but the joy of it was all the same.
 
January 20, 2006 was his surgery to remove his tumor.  That was an 
incredibly long day (of course barely sleeping the night before didn't help 
either)....Waiting......  Darrel went into the operating room at 7:45AM, and we 
didn't get a real progress report until almost 4:00PM (which was more or less, 
things are moving as expected).  About 9:45PM we were informed that he would 
have to lose a kidney (of course it had to be the stronger one), as they 
couldn't remove the disease from it without severely damaging it further. 
About  11:30PM he fianlly was moved from the O.R. into the Critical Care Unit,
and it  would be another two hours before we could see him.  Seeing Darrel with
tubes  coming in and out places all over his body was most un-nerving.  The days
that  would follow had many scares and many emotional high and lows.  Almost
three  weeks later, we got him back home again.
 
There would be another two rounds of chemo before Darrel underwent the 
bone marrow transplant in March.  They had previously harvested his own stem 
cells in November, and then "cleaned" them, so there at least would be no
chance  of rejection.  Darrel, as usual was not really phased much by all this. 
His  biggest concern was that when he got home, the dog would not be allowed
back for  several months, as he would have no immunity, and no McDonald's
Chicken  McNuggets (Kira and Lauren weren't very happy about these new rules)
either.   There would be many other adjustments for the entire family as
well.
 
Throughtout his enitre stay at Sick Kids, he had become addicted to 
Nintendo Game Cube, and Zelda:Wind Wakers in particular.  He actually looked 
forward to laying in bed, playing video games all day (not to mention most of 
the night).  Since we only had my old Sega Genesis at home, it was certainly a 
step up for him.  The entire 8th Floor at the hospital was for kids with
cancer,  most in strict isolation, so there were alot of extra perks up there
(Game  Cubes, special menus, DVD's [rooms on other floors had TV's and shared
VHS  machines], and other special things), and the possibility of going to the 
Starlight Room (most of the 9th Floor), which was a kid paradise, and  was
reserved only for them. 
 
Over the next few months, there would be more chemo, three weeks of 
radiation treatments, and countless tests. September 2006's results were the 
best we'd had so far. From what they could see, other than two areas of
concern,  things looked good.  Sick Kids wasn't really sure, but most there
thought that  the spots showing were still shrinking from the radiation and/or
scar tissues  from all thar he had been through. 
 
With this positive news, we got the school to send over a tutor, and 
slowly get him ready to re-enter school in the new year, after his Central Line 
was removed.  There would be no way to send him back, especially at his age, 
with something attached directly to his heart, more or less hanging just under 
his shirt. A simple tug or push the wrong way could have had caused huge issues. 
The Central Line had been a concern at home for us since the beginning.  When
he  had the energy, Darrel wanted to play around with his sisters, or
rough-house  with me, but there was always a line that had to be  closely
observed at all  times.  When all three of them would attck me, I was had to
make sure which set  of hands and feet were Darrel's.  Kids wanted to be kids,
regardless of all the  other circumstances.
 
In early December, they re-did all his tests again.  The same areas that 
they were concerned about in September were still present, but there was some 
confusion amongst the various specialists at Sick Kids what the findings meant. 
We were told that with Christmas just around the corner, they would wait until 
the new year, and repeat a couple of the more intense tests.  The family would 
have a very nice Christmas, with Darrel, of course, getting more than the girls 
from Mommy and Daddy, Santa, family and friends, and complete strangers, for
the second year in a row.
 
Things would change again after the January tests, but I'll save that for 
another blog entry.  There was alot of other ups and downs over the time this 
blog describes.  Emotional stuff that I don't think I've properly dealt with 
yet, but will probablt hit me sooner or later.  The strains on the entire
family  unit were/are, and will be very unpredictable and  unpleasant to deal
with.   With Rebcca and Darrel spending almost 8 months (off and on) in hospital
or  another, everyone's life style changed greatly.  I not only had in worry
about  Darrel, but look after all the girl's needs, work, maintain the house,
and any  days off, head down to Toronto to see Darrel and Rebecca.  We were both
more or  less single parents for much of that time, and that didn't make things
any  easier on any of us.
 
That being said, we did though  get alot of support from family, 
friends, the kid's school, the Church, and several community fundraising 
events.  With public knowledge of our circumstances, also came the thoughtful, 
yet annoying long stares and looks of sorrow coming my way.  The "Pity Parade" 
began as soon as I ran into anyone that knew what was going on.  It was 
especially bad at the school when I had to drop of the girls.  The office would 
be full of laughter and smiles, then I would come in, and the room would become 
sombre and silent.  While I understand why this happened, and most likely have 
done it myself sometime in the past, it really didn't help much being
constantly  minded of everything.  As time time on, this didn't happen as much
because most  of Darrel's progress reports had been upbeat, and/or moving in the
right  direction.  I'm not looking forward to the "Pity Parade", though I know
it's  heartfelt and genuine, to go into overdrive once the new results get out. 
I  really hope the school board won't cut off the funding for Darrel's tutor, as
he  has been enjoyin it, and is quite proud of being able to do more age
appropriate  work, and signing his own name to things.  Since he only had JK,
and the first 2  days of SK, he has had alot of ground to cover.
 
There are countless questions of "Why", and "What Ifs" that go along with 
Darrel's condition.  As cancer doesn't run on either side of the family, how 
does a five year boy contract such a horrible disease?  Of course, the biggest 
of all questions is, What could we have done differently?  Could this have been 
caught at an earlier stage if we had had a different doctor, or chosen to go 
over his head when we first thought he didn't have a real good grasp of the 
circumstances?  The cure rate for neuroblastoma in Stage I and II is very 
high, but by the time it was noticeable to  Darrel, had it already gone too 
far?  What if we had signed him up has a test subject for one of the newer 
treatment plans they are considering?  Just thinking about all these possible 
opportunites missed is enough to cause the rest of my ever disappearing hair to 
fall out!  
 
None of this has been very easy, but considering how some of the families 
in similar situations have coped, we are doing better than many of them.  The 
biggest advantage we have had has been Darrel.  That smile, laugh, and almost 
beyond his years sense of humour, has allowed everybody not to get too 
depressed.  Without his strong and unyielding spirit, the story thus far would 
be very different.
0 Comments



Leave a Reply.

    The majority of all these entries were written by Darrel's father, Stephen.  For those that are not, efforts have been made to give proper credit where it is due.

    The bulk of the posts are in the June 2011 Archives Section, as that is when I transferred them over to this site.  Category Tags should allow you to find entries easier.

    I've tried to correct spacing issues on many of the entries, as most of the older ones have been copied from different sites I've used in the past. I apologize if some have been overlooked.

    Categories

    All
    Dads In Grief
    Life 2007
    Life 2008
    Life 2009
    Life 2010
    Life 2011
    Life 2012
    Life 2013
    Life 2014
    Life 2015
    Life 2016
    Life 2017
    Life 2018
    Life 2019
    Life 2020
    Life 2021
    Life 2022
    Life 2023
    Life 2024
    Life 2025
    May 26th
    Sept 9th
    Writing And Poetry

    Archives

    May 2025
    September 2024
    May 2024
    September 2023
    May 2023
    September 2022
    May 2022
    September 2021
    May 2021
    September 2020
    May 2020
    March 2020
    September 2019
    May 2019
    September 2018
    May 2018
    January 2018
    September 2017
    May 2017
    September 2016
    May 2016
    September 2015
    May 2015
    April 2015
    March 2015
    January 2015
    October 2014
    September 2014
    May 2014
    February 2014
    January 2014
    December 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    February 2013
    December 2012
    November 2012
    October 2012
    September 2012
    July 2012
    June 2012
    May 2012
    April 2012
    March 2012
    January 2012
    December 2011
    November 2011
    September 2011
    August 2011
    July 2011
    June 2011

    RSS Feed

Powered by Create your own unique website with customizable templates.