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| K at Build-A-Bear post clinic |
Today’s clinic visit
was very stressful for Kennedy. As
visits become less frequent, she has started to develop anxiety about having
her port accessed. Mom and dad
have the same anxiety. When she
was first diagnosed everything seamed surreal and we became numb to the needles
and treatments. Now the treatments
are traumatic for all of us and we drove to clinic in silence.
The visit itself was overall good, K had a spinal infusion of methotrexate (aka intrathecal). This treatment infuses chemo into her spine to prevent any rogue cancer cells from traveling to her brain.
Dr. Sarvita was our doctor for treatment today and K adores
her. We spent extra time waiting
for counts since the tube (kind of like what they have the banks to bring money
from car to teller) was broken and no one knew it so her blood work didn’t make
it to the lab when it was supposed to– this added an additional hour to today’s
visit and procedure.
Kennedy’s counts came back extremely high (over 3500) which
is very odd. They think it is
likely due to her possibly having some type of virus and her body fighting it
off. The doctors weren’t too
worried and the high counts allowed us to proceed with the chemo. K was put under with Ketamine and the
procedure took a total of 5 minutes (but a half hour from beginning to end). Coming off the Ketamine, Kennedy was
loving and silly as always and she continued to tell us how we had 4 eyes and 2
noses as she was coming off the drug.
Dr. Manera came downstairs from the hospital to spend some time with us. Apparently we are still the only low risk diagnosis made this year based on the new protocol. We are also the only one in clinic on K’s protocol. Dr. M was very happy to see us and us him. Megan from Child Life also hung out with us while we waited. We got to clinic around 9am and left at 12:30pm.
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| K and daddy with her cute little pigtails |
After chemo we took her to eat and to Build-A-Bear. The procedure wore her out so we went
home to rest and later headed to the reading night at school. This evening she has been complaining
of nausea and back pain (from the pokey) but is overall in good spirits.
I must vent a bit I have to say it is so frustrating going through what
we did during the day and then walk into a public area (like school tonight)
and see normalcy. Nobody knows
what our day was like but we do.
I’m intrigued that people can find importance in protecting peanut-free
cookies and am amazed that we could get shamed for grabbing one when not allergic
to nuts at tonight's book night. When this
stuff happens, I want to scream.
I mean seriously, do people even have a clue of what they stand for
sometimes? If there was a shortage
of peanut-free cookies, I would have gladly gone to the stores and bought the whole
shelf. And it’s great they have
cookies for kids allergic to peanuts or gluten but what about a special section
for a cancer patient that can’t sit packed-in like a sardine with all the kids
on the floor of the gym? I mean,
if a kid doesn’t get to eat a cookie, they will survive. If my kid sits among the stuffy noses
and coughing, she could be hospitalized.
I understand the world doesn’t stop for Kennedy and I am
fine that there wasn’t a special section available for her at school
tonight. But with that said, why
should we protect cookies? I'm sure the peanut allergy kids would be okay without special food even if they ran out - just like I was okay there wasn't a special area for a cancer kid. Okay,
enough ranting; I’ve had a
long day and I’m probably not even making sense at this point.
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| Great America visit October 2012 |
A quick overview of the last 3-weeks: K loves school and has been doing
great. Kennedy is a daredevil and
dragged us on both the Demon and Eagle at Great America last week and has been
living it up like any normal kid.
She still has emotional outbursts and I’m not sure if they are
chemically induced or just part of being 5. She continues to take daily chemo of 6MP (Mercaptopurine)
and weekly doses of Methotrexate.
Next in-clinic chemo round is steroids and Vincristine that
falls around Thanksgiving. In the
meantime, any in-clinic visits will be blood-draws. As the weather gets colder and flu season approaches, we are
staying positive and praying that K stays healthy and happy and we only visit
clinic for pre-scheduled treatment/blood draws.
