A Pleasant Exchange
Person 1: Hey! I haven’t
seen you in for-EVER! How are you?
Person 2: Good! How about you? What have you been up to?
Person 1: Hangin’ in there,
School starts this week so had to buy the kids new shoes and stuff. Soccer starts and I need to figure out when I
can get to the gym… You know… the usual…. What have you guys been doing? How
are your kids?
Person 2: Not much! School starts for us tomorrow too and we are
all looking forward to a great year. We have a little more shopping to do and
then we should be set. Hey, good seeing you! Have a good day! Talk to you later!
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A Pleasant Exchange You might have with
someone who deals with a Rare Genetic Condition
Person 1: Hey! I haven’t
seen you in for-EVER! How are you?
Person 2: Good! How about you? What have you been up to?
Person 1: Hangin’ in there,
School starts this week so had to buy the kids new shoes and stuff. Soccer starts and I need to figure out when I
can get to the gym… You know… the usual…. What have you guys been doing?
Person 2: We just celebrated
Madison’s 2 year anniversary of her sub Q IGg infusion. We took cake and breakfast taco’s to Schmitt’s
office to celebrate and show our appreciation for all they do for us/her. (Let me tell you, they do A LOT for us) We
skyped with her infusion buddy that moved to New York, It was fun! She doesn’t
always like getting her infusions.
Today I went shopping for
neupogen, hoping to get a better deal.
My specialty pharmacy charges $1211.98 for 4 vials. I think my Tom Thumb pharmacy is going to be
able to get it for me for a little cheaper. They said they might even
administer the shot if I draw up the dose. We just upped her does to 2 ml / 2 X
a week to see if we can get a more steady state for her neutrophils. Her new
hematologist changed her dose last week before he did her bone marrow
biopsy. Madison will have to have a
biopsy once a year to monitor for any type of marrow dysplasia. This doc has a lovely accent so when you hear
the words “dysplasia” and “leukemia” it doesn’t sound so bad.
I took Chase to his GI doc (Love
his GI Doc!) He is the one that gave us the referral to the new Hematologist. Chase
started our day around 5 and was ready to go by 6. He was climbing on the
table, pulling out all the CD’s to put in a back pack, and trying to wake up
the girls. Our appointment was at 8, so
we left the house at 6:45 to make the 20 minute drive to the office. We got bagels for the office, stopped at Home
Depot to pick up a little something, admired the tools at HD, swung through
McD’s for a coffee and arrived at the office at 7:45. We watched the staff come
in, looked at the fish tank, and discussed the picture on the wall. I scheduled the appointment after our trip to
Baltimore for the Immunodeficiency Foundation conference where they talked a
lot about GI issues and immune deficiency so I wanted Russo to evaluate Chase
with PID eyes instead of TTD eyes. We discussed the pros/cons of starting him
on IGg replacement therapy and then we both just laughed when we thought about
how Chase would sit still unsedated for an hour long infusion. I guess you can still hang from the
chandelier with needles in your legs, right?
And yeah, School starts for us
tomorrow too and we are all looking forward to a great year. Have a good
day! Talk to you later!
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Both of these scenarios are
conversations that I have had recently. Both are very pleasant but contain very different content. Why are they so different, you ask? Because the people I am talking to
are so different. Some people see our life as something to feel sorry for. They feel “bad” for us and I certainly don’t
want to make them feel WORSE by discussing the specifics of our day-to-day. So
I give the “socially acceptable” version. I don’t need them thinking that I am
a train wreck. And while there are days that I feel like a train wreck, I am no more a train wreck than
anybody else (remember, we all got our things!)
For those that I do share the details of our day to day, I hope that when I tell you we
just celebrated 2 years of an infusion that you see the fun and joy that we Coolidge’s
can make regardless of the situation. That when I tell you that I am shopping
for neupogen, you can hear the appreciation and thanks that I feel for the
people that bend over backwards to help us save a little money, and put a little
bit of “easy” in our day. That when I
tell you that Chase wakes most days at 5 that you see his love for life and how
much fun he has regardless of his location! That when I tell you we went to
Baltimore for a conference that you see how determined we are for knowledge so
that we can advocate for our kids and their conditions. I am not ever telling
you this stuff so you can feel sorry for me. I am just answering the question “What
have you guys been doing? & “How are your kids?”
Love and appreciation to everybody that I don't have to be "socially acceptable" for! We couldn't do it with out you!
Love and appreciation to everybody that I don't have to be "socially acceptable" for! We couldn't do it with out you!
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