Nineteen days into September, and despite me wanting to write more
for Childhood cancer Awareness Month, and leukemia Awareness Month,
I’ve managed 3 posts. I started off strong with 3 posts in 3 days,
but then life & family responsibilities bumped me out of my lane.
There’s been a few night where I’ve been too exhausted to be able
to gather my thoughts & organize them into some sort of written
form. A good number though, have been from the boys. I’ve either
been snuggling one of the boys to sleep, and I’ve inadvertently put
myself to bed for the night as well, or E has had a random late
afternoon nap, and he’s up with us in the family room.
We’ve already had
a couple of cases of “teh sicks” creep into the house. The night
of Tuesday September 17th, both J & E had been put to
bed. E started coughing, and wouldn’t you know it, it’s our old
friend croup. I sanitized the cool mist humidifier, brought it into
our room, and E slept with us that night. It seemed to help him after
running for about half an hour. Still though, between the hacking &
runny nose, they caused him 2 separate vomiting incidents in the
night, and he didn’t want to sleep. Shortly after the second vomit,
I heard J start a croup-y sounding cough in his room. Thankfully, he
only coughed a little bit, and nothing more really came from it. My
wife was really worried about E, but I wasn’t as concerned as she.
I mistakenly thought the next morning was bloodwork day at our
satellite clinic in Scarborough, but my brain was one week early.
Still, we called, and E’s Nurse-Practitioner & RN from the
clinic said to bring him in, and they would check him out. Everything
ended up being okay physically and bloodwork wise. We were given a
dose of dexamethasone to bring home to give to him that night if his
coughing returned. An oral dose of dex is used to treat cases of
croup, but dex also doubles as one of the drugs given to chemo
patients on a regular basis. Parents of kids with leukemia don’t
look forward to steroid week.
J has had 3 cases of
mystery hives in the past 6 days. He’s quite the picky kid when it
comes to food, and he has a limited range of things that he’ll eat.
It’s almost made it more difficult to nail down the source. He had
another case tonight, so we gave him a dose of Benadryl, and both of
us snuggled him until the itching stopped, and he was able to fall
asleep. We’ve been wracking our brains trying to remember what he’s
had for meals & snacks since last Saturday. Really, the only
thing that we can pin to all 3 incidents is apple. It’s weird,
because he’s always loved apples,
but has been asking for them less in the past month. It seems kind of
odd for
an allergy to seemingly come out of nowhere, especially with a food
he has eaten many, many, many times before. But,
I’m sure that stranger things have happened.
E
is getting ridiculous with his words, and speaking in sentences. I’d
previously written about how he was language-delayed, likely due to
the chemo. It does happen in younger kids who are diagnosed with
cancer, along with a whole other host of side-effects, long-term
effects, and late effects that I won’t get into in this post. I
wouldn’t say that he’s caught up, but he’s progressing in leaps
and bounds. Previously, you’d hear 1 or 2 words, and he wasn’t
very interactive. Now, he’s regularly speaking in 4, 5, and
sometimes 6 word sentences. He’ll give you yes or no answers about
whether he wants something, when previously it was no response &
a guess by mommy or daddy. He gets ideas in his head, and has no
problem conveying them to you, like asking me to come upstairs &
put on a TV show he likes. Just in the past week, a few times he’s
said to me: “daddy, feel yucky”. I was a little dubious about
whether this was actually true, because he’s quite the parrot these
days, and we sometimes ask him if he feels yucky after we give him
certain chemo medications. I tested it out the other day; he said
“daddy, feel yucky”. I then asked him if he could show me where
he feels yucky, and he took his hands and touched his tummy. I asked
him if he felt yucky in his tummy, and got a “yeah” response. So,
we gave him some anti-nausea medication known as ondansetron, which I
still think sounds like the name of a Tranformer.
As
a caregiver, I can’t express how wonderful it is that E can finally
articulate some of his needs, and how he feels. I don’t want to
compare cancer in little kids vs. cancer in big kids. There’s
different challenges to each, and it’s just not fair to try and say
x is more difficult than y. E was diagnosed at 15 months. For 2
years, we’ve had to try and read his body language, listen to his
cries, and even just guess at how we think he’s feeling because he
can’t communicate it to us. That being said, E won’t even
remember most of his treatment, and I haven’t had to have him ask
me about his mortality, a question that would likely be raised by
older children.
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