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Sunday, January 1, 2012

Merry Christmas from the Maizes 2011

(at the prompting of friends and family, here is the text of our family newsletter. sent this out with the cards. Happy New Year!  Here's to a ... calmer 2012!)

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.

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-------------------------------------------------------
5*
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

1 comment:

  1. Good to hear how God has gotten you through this year and to know where you are now! I think of you often!

    ReplyDelete