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.
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.
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