Hello and Merry Christmas from the
Maizes!
Whew
... what an exciting year! If you're new to our Christmas card list, we normally
send out a letter full of random adventures and joys from our year, followed by
a movie review list. This year's news was heavily weighted to the spring -- so
the bulk of your reading will flow from the drama that was Ian's last medical adventure.
If you want to read more details, including
potential options we faced and the day-to-day grind, check out the blog at www.hold-the-sugar.blogspot.com: go back to March 8 to begin the
journey.
Was there a January to 2011? Anyway,
February 15th marked Ian's 5-year cancer-free milestone. We celebrated in our
hearts; at pathology/diagnosis time, Ian was given a life expectancy of 3-5
years. So this was a BIG deal.
Unfortunately, just as our sense of triumph
cemented, other bodily betrayals were afoot. Ian began to experience tingling
and numbness on the right side of his body, culminating in a lack of ability to
swallow. We headed to the ER via
ambulance March 8.
The months following are a blur, but many
memories are in focus: the night Ian's oxygen levels dropped too low and we
headed to the ICU. The day the surgeon, who had previously been reticent to go
anywhere near the brainstem, came in and said he was now thinking surgery was
our best option. The multiple times Ian struggled to communicate by pointing to
letters of the alphabet, writing with his finger on the sheet, and scrawling
some words on paper (things like, "sedation" and "I want to
breathe."
Ian had what is called a cavernous malformation on the brain
stem. Although it may have been somehow related to the radiation treatment Ian
received after his tumor resection in 2006, it was not cancerous, a tumor, or
anything of the sort. Instead it was an "angry blood vessel,"
raspberry shaped and tiny, seated on the brainstem, oozing blood. It may have
existed there – peacefully -- his entire life, and just chose to erupt when it
did, or it could have emerged recently to cause trouble. Some folks get these
things and never have symptoms, and they can show up anywhere in the vascular
system (ie: a leg) and cause a whole different series of issues. For Ian, the
location made this sucker an enemy of his nervous system ... including causing
him constant hiccups till the operation!
His lungs collapsed, he developed
pneumonia. He constantly had crud in his throat and airways that required a
sucky tube. He had a trach and feeding tube and was unable to speak for weeks.
We were sent to rehab WAY too early (in my opinion) and had a few setbacks
there. Right before heading home from rehab he developed seizure-like symptoms
and splitting headaches. We came home with a wheelchair, a feeding tube in his
stomach, a hospital bed in the living room and a passel of drugs.
But we were home -- and then the real work
began. Therapists and nurses visiting nearly every day. Slowly getting out of the wheelchair and
sending the hospital bed away (stairs! we have 17 inside!). Practicing things
like saying, "chocolate cake" and getting down to and up from the
floor.
Part two of the story: the community rallies. I can't name everyone here (I hope to
eventually thank everyone personally), but some of the things:
1. food provided and laundry done
while we were in the hospital phase
2. kids cared for daily while I made the 45-minute
trek to Pittsburgh
3. railings installed and bath chair
provided
4. gift cards (coffee! groceries!) and cash
(gas!) came consistently and sometimes anonymously.
Funny t-shirts came
to the hospital, and cards, and fun stuff (a plush brain stem cell!)
5. prayer - in a BIG way. an organized
prayer session at the church, a Facebook page
flooded with messages, cards and texts and other tokens of love. We are BLESSED to
know each of you.
flooded with messages, cards and texts and other tokens of love. We are BLESSED to
know each of you.
Part three: Life
now! Ian is down to two out-patient therapy sessions a week. He DRIVES
there. He can eat and drink normally (it’s amazing what we can now take for
granted!). All the tubes are gone; only scars remain. He is able to continue
work with a home office and small task load (PLS Logistics has been AMAZING to
us). His speech is still altered and his gait a bit "off," but other
than that - same old guy. (We speculate there may have been an addition of some
smart@$$ while the surgeon was in there, but we can't be sure ...). He is also back to Bible study and serving as
a deacon at church.
Audrey attends 1st
Grade. She's a fan of dolphins and the color lavender and enjoys singing and
ringing bells in the children's choir at church. Reading is still her first
love; her favorites this year have been Harry Potter, the Chronicles of Narnia
and Nancy Drew/Hardy Boys (She had a FABulous Nancy Drew mystery birthday
party!)
Not to be outdone, Ezra has started to read as well, although his interests lean
heavily toward things with wheels! :) He has benefited most from Daddy's
stay-at-home status and they spend one-on-one time "playing cars" or
Legos. He loves preschool and "hanging out" (he asks to visit with a
friend every day!). His favorite books
are anything that makes him giggle, like Cookie
Monster and the Cookie Tree, Fly Guy,
and The Missing Piece. (Ezra
smashed it up with an Angry Birds birthday party!)
Rachel is relieved to
have 2011 behind her! She has been decluttering, decorating, crafting, writing
and reading whenever possible (in addition to kid-wrangling). She has taken on
some part-time copyediting work (Grammar Police!) and is quite enamored with
her iPhone. :)
-------------------------------------------------------
Movies 2011-------------------------------------------------------
Bigger,
Stronger, Faster
Fat
Head
Kathleen
Madigan: Gone Madigan
Wallace
& Gromit: Loaf and Death
4
Craig
Ferguson: Does This Need to Be Said?
Dear
Zachary: A Letter to a Son About His Father
Dedication
Fat,
Sick & Nearly Dead
Lie
to Me: Season 1-3
Methadonia
Shaun
the Sheep Season 1
3
After
Innocence
The
Boondock Saints
Brian
Regan: Standing Up
Bunny
Shorts Season 3
Conan
O'Brien Can't Stop
Dinner
for Schmucks
Facing
the Habit
Forks
Over Knives
Green
Lantern
Intervention:
Season 1-9
Morning
Glory
Obsessed:
Season 1-2
Planet
B-Boy
Psych:
Season 1-3
Racing
Stripes
Rango
Spy
Kids
The
Taking of Pelham 123
WALL-E
World's
Most Dangerous Drug
2
Addicted:
Season 1
American
Meth
Bill
Burr: Let It Go
G-Force
George
Carlin: It's Bad For Ya
Goodbye
Girl (2004)
Just
Go With It
Lewis
Black: Stark Raving Black
Lincoln
Lawyer
Lisa
Lampanelli: Tough Love
Michael
McDonald: Model Citizen
Ponyo
Prodigal
Sons
Russell
Brand in New York City
The
Switch
1
Bo
Burnham: Words, Words, Words
The
Boondock Saints II: All Saints Day
George
Carlin: Complaints and Grievances
Heroin
Town
Now
and Then
The
Power of Forgiveness
*(5=best,
1=worst)
Also:
Ian did a Cheers marathon from his lair in the parlor :)
If you’re
reading this letter, you have most likely been following our trials by way of
the internet or word of mouth. You have been praying, offering words of
encouragement and providing tangible means of support to our family. For all these things we are incredibly
grateful and humbled. We have been blessed with an amazing network of family
and friends, and have seen the community band together in a beautiful way. We praise God for His mercy and provision
during this difficult season, and continue to thank Him for His Body here on
earth. Ephesians 1:16-17
With
much love,
Ian,
Rachel Audrey and Ezra
