Today is February 15th, 2019. It’s International
Childhood cancer Day
(http://www.internationalchildhoodcancerday.org/).
It’s celebrated around the world every February 15th,
with the goal of “reducing childhood cancer mortality and the
elimination of cancer-related pain and suffering.” In a previous
post, I wrote about how one of my cousins had her son diagnosed with
Wilms tumor at age 21 months. His picture popped up in my Twitter
feed today as featured by Childhood cancer Canada.
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| My cousin's son, in treatment for Wilms tumor popped up in my Twitter feed today |
I’ve been thinking a bit lately about the content of this space. I
feel as though my musings have been more negative than positive. It’s
true that the experience of having a child with cancer can be
extremely difficult, but it’s not all doom and gloom around my
house. As with everything, I think the human psyche tends to focus
more on the negatives than the positives, and I find I need to write
more about the things that get me down. If I’m in a better
headspace, I’m generally not writing about it. Instead, I tend to
formulate, and post my cracked-world-view jokes to Facebook or
Twitter. There’s good days, and bad days, it just so happens that
my bad days fuelled by my son’s life threatening illness. E is a
happy little guy. He has a smile that lights up the whole room, and
an infectious little laugh. I will go far out of my way to act silly,
or make myself look like an idiot just to hear him giggle. There’s
a lot of stress, anxiety, and worry around our house, but there’s a
lot of laughter too. In fact, yesterday was a great day for me,
mental health wise. I was awake earlier than normal, the kids got
ready in extra slow motion, I forgot my work badge & had to
double back, and I was stuck in a traffic jam that resulted in a 1.5
hour drive into the office. Really, it had all of the ingredients for
me to be angry, upset, or feeling off, but I felt great. There’s
always that little nagging “my son has cancer” thought in the
back of your mind, but I was in a good mood, and the day almost felt
like a return to the pre-diagnosis days. The days aren’t always
like this, so you have to try to enjoy them when the good moods hit.
On Wednesday
February 13th, we wrapped another mini-cycle. We had an
appointment at the POGO clinic in Scarborough. It was bloodwork, and
a vincristine push this time. He needed to be accessed through his
port, and he ended up ripping not one, but two EMLA patches off
before we left the house. Arriving at the hospital, they had to use a
different numbing cream under an adhesive patch. E was accessed with
no problems. The vincristine push happened with no problems. But, he
was stingy and didn’t want to give up any blood out of his port,
and he needed a couple of finger pokes to collect what was needed for
a CBC. After lunch, we received a call from our RN that E’s counts
were up again (surprise, surprise). Later, SickKids called to tell us
that they were going to bump his 6MP from 1 pill five days a week &
1/2 a pill 2 days a week to 1 pill six days a week & 1/2 a pill 1
day a week. I think his bloodwork has been in the “normal” range
only once in the past 6 or 7 months.
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| E, in need of a haircut, and admiring the fish on the pediatric floor where the POGO clinic is located |
The start of a new mini-cycle also means the start of steroid week.
He’s only 1.5 days into the 5 day ordeal, but he’s already
showing symptoms of being cranky & irritable. It’s difficult so
see him acting this way, especially when you know that it’s so NOT
his personality. It’s frustrating, but you just need to remember
that it’s not him, it’s the dexamethasone that’s making him out
of sorts. He’s been extra hungry so far, but right now he seems to
be craving milk. At 9:15am this morning, I had him sitting in his
highchair because he wanted ice cream. I’m hoping steroid week goes
easy on us this month.
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