Leslie's Journey

February 2, 2010

2010-02-02T19:52:00.002-05:00

The family is doing well and we thank all of you who have followed and shared the journey.

July 26th Anniversary

2009-07-25T19:52:00.004-04:00

I have found myself going to the blog numerous times today as did many of you. There is still an increase in new bloggers to the site every month. Thanks to each of you for your prayers through the years.

Cleaning up some things on my computer today and found pictures of Leslie that I had forgotten I took. On Tad's wedding day she was simply stunning! The "little black dress" and that beautiful smile.

Say a prayer when you lay your head on your pillow tonight for family and friends that miss her.
Their hearts ache for the loss, but also rejoice in the healing walk with God.

ginny

Mighty To Save

2009-06-12T16:13:00.003-04:00

Everyone needs compassion
A love that's never failing, let mercy fall on me.

Well, everyone needs forgiveness
The kindness of a Saviour, the hope of nations
Saviour
He can move the mountains
For my God is Mighty To Save,
He is Mighty To Save
Forever, Author of salvation
Where he rose and conquered the grave
Jesus conquered the grave.
So, Take me as you find me
All my fears and failures
Fill my life again
I give my life to follow
Everything I believe in
now I surrender, I surrender
Shine Your Light And Let the whole world see
were singing, for the glory of the risen king...
JesusShine your light let the whole world see........

Hillsong-Australia

Dancing With God Invite

2009-04-25T18:44:00.001-04:00

Who: All women, High School through "Golden Girls"
What: "Dancing With God"-- the fourth and final installment of a serial women's conference entitled "Sisters By Heart", which began in November of 2008.
When: Friday Night, May 1, 2009. 7pm to 10pm EDT.
Where: Oasis Christian Fellowship, 400 Enterprise Ave., Wauseon, OH
Cost: Free!
Program:
7:00 – Worship
7:35 – Laughter & Snacks
8:15 – Special Speaker: Tyson Aschliman
8:45 – Snacks and Q & A with Tyson
9:20 – Worship

HAPPY BIRTHDAY LESLIE

2009-03-18T11:00:00.003-04:00

Friends - please visit Tyson and TJ's blog started after Leslie went to be with Jesus.

Light a candle, say a prayer, post a comment. >> http://www.tysonaschliman.blogspot.com/

Blessings to each of you

A Journey.....A Book

2009-01-08T21:47:00.006-05:00

Reading Tyson's last blog made me think about words and what the meaning of journey really is. Webster Dictionary defines the word "journey" as

1. a traveling from one place to another, usually taking a rather long time; trip: a six-day journey across the desert.
2. a distance, course, or area traveled or suitable for traveling: a desert journey.
3. a period of travel: a week's journey.
4. passage or progress from one stage to another: the journey to success. –verb (used without object)

When I think of definition #4 I go back to the beginning of the "forleslie blog" and it's purpose. The intention was to call prayer warriors around the world to begin praying for Leslie, Tyson, TJ and their familes. We prayed for the surgeons, caregivers, safety as they traveled back and forth for treatments and appointments. We cried out to God for healing, peace, and understanding.

We watched the progress, we went from one stage to another and in the end or beginning ~ the journey took Leslie to heaven.... the journey of success.
"Well done good and faithful servant" Matthew 25:21

Tyson has been asked to share the story in the form of a book. Pray for him as he takes the words from the blogs and places them on paper. Going forward without Leslie has been hard,
going back won't be easy, but this is her minstry. ginny

Legacy

2008-11-30T15:04:00.003-05:00

I don't mind if you've got something nice to say about me
And I enjoy an accolade like the rest
You could take my picture and hang it in a gallery
Of all who's who and so-n-so's that used to be the best
At such'n'such ... it wouldn't matter much
I won't lie, it feels alright to see your name in lights
We all need an 'Atta boy' or 'Atta girl'
But in the end I'd like to hang my hat on more besides
The temporary trappings of this world

I want to leave a legacy
How will they remember me?
Did I choose to love?
Did I point to You enough To make a mark on things?

I want to leave an offering
A child of mercy and grace who blessed your name unapologetically
And leave that kind of legacy

I don't have to look too far or too long awhile
To make a lengthly list of all that I enjoy
It's an accumulating trinket and a treasure pile
Where moth and rust, thieves and such will soon enough destroy
Not well traveled, not well read, not well-to-do or well bred
Just want to hear instead, "Well Done" good and faithful one...

Road time is my time to pray. Doing my run down of names and issues I thought of Leslie, Tyson and TJ. As I was finishing my prayer I turned on the radio and Nichole Nordeman's song came on and I thought of Leslie. I believe she left a legacy. ginny

..... a year ago....

2008-10-19T14:08:00.007-04:00

It has been a year since this particular blog was started. I check once a week to see how many new readers have joined the journey. I am so amazed and blessed as the numbers rise weekly. How can you read and not know there is a God?
Leslie continues to touch hearts around the world. She was truly blessed that there were so many people praying. As you continiue to read and share, keep their families and friends in your prayers they all miss her, even though they know she is in a much better place.

ginny

Third Service

2008-09-07T09:49:00.009-04:00

At the Third Service last night in Bolingbrook, I think it was so nice to finally put a face to the names I have heard throughout the blog. Crosstowne Community Church family, thank you for everything you have done for Tyson, TJ, and Leslie. ginny

The last song last night was TJ & Leslie's favorite. Read the words and keep "Shining" .

Mighty To Save

Well, everyone needs compassion
A love that's never failing, let mercy fall on me.
Well, everyone needs forgiveness
The kindness of a Saviour, the hope of nations

Saviour
He can move the mountains
For my God is Mighty To Save, He is Mighty To Save
Forever, Author of salvation
Where he rose and conquered the grave
Jesus conquered the grave.

So, Take me as you find me
All my fears and failures
Fill my life again
I give my life to follow
Everything I believe in now I surrender, I surrender

Shine Your Light And Let the whole world see
were singing, for the glory of the risen king...Jesus
Shine your light let the whole world see........

Hillsong-Australia

Second Service

2008-09-01T08:49:00.003-04:00

In Better Hands - Natalie Grant

It's hard to stand on shifting sand
It's hard to shine in the shadows of the night
You can't be free if you don't reach for help
You cant love if you dont love yourself
There is hope when my faith runs out
Cause I'm in better hands now

It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
So take this heart of mine there's no doubt
I'm in better hands now

I am strong all because of you
I stand in awe of every mountain that you move
Oh I am changed, yesterday is gone
I am safe from this moment on
There's no fear when the night comes 'round

I'm in better hands now
It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
So take this heart of mine there's no doubt
I'm in better hands now

It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
Its like the world is silent though I know it isnt true
Its like the breath of Jesus is right here in this room
So take this heart of mine there's no doubt
I'm in better hands now
I'm in better hands now

~~~~ This was sung at the Second Memorial Service by 2 young ladies that were friends of Leslie's. A beautiful song and it was a beautiful service. So many came and so many were blessed.

The Second Tree...

2008-08-29T11:14:00.002-04:00

Be in prayer for those traveling and those preparing for the Second Tree service in Archbold on Saturday.

First Tree

2008-08-23T08:12:00.003-04:00

Please be in prayer for those traveling to and those preparing for the first memorial service.
May those in attendance be truly blessed by the message of celebrating eternal life.

ginny

Next Chapter(s)...

2008-08-05T08:04:00.001-04:00

One week (and change) now, into the next part of the "journey". So much to say. Still learning so much every day. So many blessings. New burdens. So much I'd love to share. My heart is aching to write again...
In a proverbial "turning of the page", this blog is moving. Some people struggle with the MySpace thing... and I've got to admit, it's a little heavy on ad's and just plain shady stuff for my liking. And, I don't intend to make Ginny keep copying/pasting the way she has (thanks again, by the way, Ginny!)... So, here's where you can find "...another chapter"-- a blog on the life of Daddy and TJ after Leslie's victory over cancer. The URL is:
www.tysonaschliman.blogspot.com
Thanks again, everyone... and I truly hope to see you (virtually, or even better-- in reality) in "another chapter".
--Tyson

p.s. A housekeeping note-- To those of you interested, here is the Memorial Service schedule/plan for Leslie:

Each service will be an open-invitation event. There will be a short "service", which will include some worship and reflection time, and the reading of Leslie's favorite (children's) book, "The Tale of Three Trees". A must-read, for those of you who have kids. The services will start late-morning or early-afternoon, and will be followed by an outdoor reception. The reception will be held at each of the 3 locations, to dedicate a young oak tree in Leslie's memory. The oak tree is just a perfect image of Leslie-- strong, elegant, simple beauty. And 3 trees will do more for the life Leslie has left behind on earth than a single morbid grave site would. And plus... it plays in nicely with "The Tale of Three Trees" theme. Leslie knows/ knew that this would basically be the plan, and is/would be honored. So... here's the schedule. Times to be solidified as the dates near...

Saturday, August 23, 2008- Washington, IL. (Leslie's hometown. Dedication of the "first tree".)
Saturday, August 30, 2008- Archbold, OH. (My hometown. Yes, I know it's Memorial Day weekend. My apologies to any scheduling dilemmas this causes. Start time of the service will be 10a.m. EDT. Dedication of the "second tree".)
Saturday, September 6, 2008- Bolingbrook, IL. (Leslie's last earthly "home", and where her journey became a ministry-- where forever people will remember her and "think of God". Dedication of the "third tree".)
-----------------------
There is an educational trust fund for TJ being set up in Leslie's memory. Please contact me privately if you wish to honor her in that way. My email address is tyson_aschliman@yahoo.com. My home phone number is 630-312-8500.
I want to add that I almost didn't allow the trust fund to happen. I have been convinced by people wiser than me that this IS, after all, a good way for people who have been touched by Leslie to reach some sort of "closure", and offer a gesture that will make some significant long-term difference for her family. HOWEVER... I do want to say, that if you REALLY want to honor Leslie in a way that will REALLY make a difference in your OWN life, and in the lives of others, there is something else you can do... Take your significant other out for a nice dinner. Or a weekend get-away. Or a week on the beach. These are the things that Leslie longed to do over the last year of her life, but was never able to enjoy with me. The first surgery took her sense of taste and smell-- we never again were able to do our favorite thing for "date night". (Spend a whole lot of money on really, really good food and drink, at a unique and dimly-lit restaurant together.) Her health kept us from traveling. Nothing would honor Leslie more than for couples just to love on each other, spend time together, and bring happiness and wonder to their pallets (or sunshine to their faces), in her honor. Couples just don't do enough of that these days, if you'd ask me (or Leslie). If it makes you feel better, email me and tell me about the event. I'd love to hear about it!
Anyway... back to blogging at the new site. Thanks again!

My 3-year old pace car...

2008-08-05T07:27:00.000-04:00

…..OOPs! Didn’t realize there was another epistle….

Monday, August 4, 2008

So I kind of expected to be basically paralyzed with grief for... I don't know... the next 7 years or so. It took me 7 years to learn to love her the way I do, so I figured it'd take that long to learn to live without her. Somehow it seemed the earth would stop turning, and the world would stop needing anything from me. You know... like a bereavement leave, or something.But on Sunday, July 27, I woke up and got out of bed. That's what people do. I took a shower. Shaved (I was long overdue... started a new shadow of stubble that had never known her face, and never would.) And I went to pick up TJ from Aunt Dana's house, where he had spent the previous week in innocent and gleeful oblivion. Poor kid has no idea what a big week that was for him.We went to the Zoo. It was as if nothing had changed-- at least to him, and in regards to our interaction. He was all into the animals and sights and sounds, as he always is. I was fighting tears of emotion-- not sadness-- as around every corner lay waiting another beautiful memory. The Brookfield Zoo has been a favorite place of ours since we moved up here. It was a perfect day at the zoo-- 80 degrees and not a cloud in the sky. Leslie just loved that kind of day, with a quiet glow about her. The memories as they flashed through my mind were so precious-- and there wasn't a single one where Leslie was being pushed in a wheelchair or needing her oxygen tank. She was young, strong, beautiful, and laughing. (And getting out the Purell after leaving the ape exhibit.)TJ didn't even ask. I don't know why he would have, in retrospect. Mommy not coming along with us on our little outings was nothing out of the ordinary over the past several months. To be sure, in his little not-yet-3-year-old world, nothing really changed for him, day-to-day. It had been quite some time since she was really able to do the "mommy" things that mommies are supposed to do. TJ (I hate to say it, because it just seems so unfair to Leslie) had already adjusted to life without his mommy. The only thing that changes for him is that now he can't go upstairs and kiss her goodnight before I put him to bed. But to be honest... to him, Mommy being in Heaven isn't really much different from Mommy being in the upstairs bedroom hooked up to IV's and an oxygen tank. (I don't need to say it... but for his Daddy, it's not as simple-- ah... another time, another blog...) Anyway, this whole "adjustment" of TJ's has been an ironic answer to prayer, really... God has already built that beautiful hedge of protection around his little heart.Anyway, I felt compelled to ease the news onto him over lunch at one of the outdoor Zoo restaurants over his "shark-dog" and juice box."Hey TJ, I need to tell you something." He looked up at me-- ketchup on his face, big brown eyes. I almost broke down crying right then and there. But I held it together. "Last night was a very special night. Last night, Mommy went to Heaven and she's with God now!""And JESUS?!" He asked. We'd prepared for this moment."Yup!" I laughed, still fighting tears. "And do you know what she's doing?""Is she getting my drum ready?" he asked, in reference to the stories Leslie and I used to tell him about heaven, as she grew sicker."YES! And someday we will all play BAND and worship God together! You, me, and Mommy!""Is she getting a cymbal too?" He was starting to get very excited."A GREAT BIG cymbal. LOTS of them!"His response was a glowing, dimply gasp of surprise/ excitement. He held his smile and looked at me for a while, and then re-focused on his shark-dog and juice box. And that was that.
From time to time, he asks when Mommy will come back. (He knows the answer, but it's an exercise that he needs to go through, I'm learning.) And at night we pray and thank God for Mommy, and tell Him to give her big hugs and kisses from us. There are times when he is quite "needy", asking simply for his paci and to cuddle with me. I know it is in those times that he is deeply missing her. But he doesn't say anything about her. Perhaps he doesn't even recognize it's the mommy-shaped void in his heart that is making him feel like that. Whatever the case... not only have I been shocked and thankful for how that little guy has been getting along this past week-plus-- he is actually the glue that's holding the pieces together for his daddy so far, as well. Not only has God answered Leslie's and my most gut-wrenching prayer of the last several weeks (to be with TJ, protect him, keep him "happy", and so-on), but God is indeed using TJ to be an ongoing answer to prayer in my own life, and in the lives of our families. (Something about "...faith like a child..." comes to mind.)Karen the homecare nurse came over Tuesday to pick up some infusion pumps and equipment that were no longer needed at 432 Butterfly Rd. I grabbed Jack (the Lab who is way too excited to hear the doorbell ring) and was pushing him into the basement when TJ answered the door."Why hello, TJ! How are YOU?" Karen always loved Leslie and TJ so well when she came over."NURSE KAREN!!" TJ answered, dancing a giddy gig. "Mommy's ALL BETTER!" He threw his hands up in the air and his face was lit up with the most amazing smile I've ever seen in my life. Karen just looked at me, not knowing whether to laugh or cry."Yes she is, TJ. Yes she is." Was all she could answer.Like I said. A daily answer to prayer.

I took him to a "Tubbies" (Cubbies) game, compliments of "Mimi's Friend Ginny" for an early birthday celebration. The game was actually at "Wrigley North" (Miller Park in Milwaukee-- a little baseball humor there). The Tubbies were playing the Bwoowers. We got there so early the gates had not opened yet, but the TGIFridays on the Left Field Terrace was opened, so we went there to watch batting practice and get some snacks for a bit. TJ was just in awe of the hugeness of the place. He's been to Wrigley already, (already in love with the place), but Miller Park is just so different. He was enthralled with the big yellow slide in left field that Bernie Brewer goes down when the Brewers hit a home-run. And he'd never been that close to the field grass and "baseball dirt" (warning track) before. (His favorite part about baseball is the dirt.) His eyes were just like saucers for the whole hour. Just before we got up to leave, I saw a ball jump off a Brewers bat from the batting cage at home plate, up into the hazy glare of the late-july Milwaukee sky. It looked like it might be coming our way...

*THUD* ... clank-clank.It hit the wall of the restaurant, directly behind where we were sitting. There was a mad scramble among the lookers-on-- half out of fear, trying to get out of the way, and half looking to find the ball, to be the lucky fan to take home a souvenir. I joined the fray. Just before I got up from the dining table where we were sitting, I looked down. The ball had settled right there between my feet. Right under my table. I hadn't even felt it land. I grabbed it and handed it to TJ. He was just amazed."TJ! A REAL BASEBALL! Just like the Cubbies play with!""Is it MINE?" he asked in wonder."Yup!""I can take it HOME with me?" He might as well have asked me to pinch him to see if he was dreaming."Yes! It's YOURS!""It's HARD!" He said. He's used to playing with kid-safe spongy baseballs in the basement.

After the exitement settled a little, the "why-game" started up. "Why did that Bwoower man hit the hard ball to me?" he asked."Well, I think that God made it land there... " I mused."Why?" he kept up his part of the game."Maybe it was kind of like a special gift from Mommy," I continued. "I think that Mommy wanted to be here with us, so she just asked God to make that ball land right between my feet, so you could take it home. She knew that would make you happy." I truly believed that was the right answer, not just a fairy tale to sell to a 2-year-old.He thought about it and then answered, "Or maybe that Bwoower man just saw me and hit it up to me."I laughed so hard. "Maybe it's a little bit of both of those things, buddy."We had a great time. The Cubbies won. We ate peanuts and ice cream and I even shared my Mountain Dew with him. (I know, I know... so sue me!) On the way home late that night, his tummy started hurting. I told him that it was probably from the pop that we drank."Pop can be very yummy, but you drank quite a bit of it, TJ. Too much pop can give you a tummy ache. That's why we don't have it very often. We only have it on very special days like Cubbies games.""Maybe next time I will only have one or two or three sips," he said, after thinking about it a bit. Smart kid, that one is. A little later, his tummy was still hurting, and I was trying to distract him, reaching back and holding his hand and trying to soothe him as I drove."Maybe we won't tell mommy that I had pop," he concluded. I could just feel her glare coming down through the night into the sunroof of my TrailBlazer. "What were you THINKING?" I could hear her say...We made it home. He felt better in the morning. And we headed to Ohio to be with Mimi and Papa (my mom and dad) for a few days. We'd been trying to make it over there for the past few months. But hospitals, doctor visits, and overall health kept us from getting there. We even missed the family vacation at the parents' place in Florida this year. That was crushing for all three of us. We'd been looking for a small window of opportunity to make the road trip down (flying was impossible, due to the state of Leslie's skull and sinuses after all her surgeries). That opportunity never materialized...Until now. TJ and I flew down together yesterday (thanks for the tickets and the free rent, Mimi and Papa!). The trip was very tiring, but now we're having a blast. It's so good just to be alone with him. He has been so sweet, so encouraging to me, and full of love and laughter.

Like I said... an answer to prayer. Every day a blessing.He's sleeping now-- one of his afternoon nap-a-thons-- which gives me some time to think. To breathe. To settle in and dig into this next chapter. I'm learning that God didn't intend for me to tackle all this at once. A man can only feel so much pain in a single sitting. There are only so many tears that can be shed before dehydration starts setting in. And He's given me this wonderful little pace car, (TJ), to keep me from burning out before I reach the finish line.
Posted by Tyson Aschliman at 12:38 PM 1

Saturday, July 26, 2008

2008-07-27T07:23:00.002-04:00

Leslie defeated cancer this evening at 9:15 CDT. She is now finally Home, having completed her "journey". There is no more suffering. No more gasping for air. No more fear. No more heartache. She is certainly worshiping before the Throne, catching up with some old friends and family that have gone before her, and certainly some new friends and family, tilting her head back with her eyes closed and laughing with that contagious laugh—the one her failing lungs have been preventing her from laughing over the past few months. I am so grateful that she is no longer suffering, but am thankful for the past several days and hours, when she continued to fight (she's a warrior!), which allowed for a prolonged time in which her family and I were able to say our proper farewells. (Mostly "I-love-you's", "thank-you's", and "see-you-soon's".) We passed along the farewells you all have sent along, and Leslie certainly knows she is loved. She breathed her last breath knowing it, and she knows it even more fully now.She was very aware that her time had come, in the days leading up to today. This week was a seamless transition from "fighting for her life", to "fear in knowing her body could not beat it this time", to "intense sorrow that these conversations would be her last", and finally, to "the perfect balance of 'will' and 'peace' we've all been praying for over the past 10 months". She dwelt in that place (praise Jesus!) of both fighting and drifting peacefully away for dozens of hours, basically unconscious through that time. The nurses just kept saying "she's SO BRAVE!", as she continued to "outlast" all of their/ our expectations. "She's a warrior," I'd say back.Today, her battle is over. And I know she is still with us in some real supernatural sense, pulling for us, fighting our portion of the war with us even now.And her story—her legacy, her LIFE—is just now beginning. It will continue to be lived in the lives of myself, our son, her family and friends, and you—our prayer warriors and partners on this journey—for generations to come. Until the war is won and we are all together to celebrate the victory before our King.I have decided, with the blessings of her family, to forgo a "traditional" funeral and burial. A "viewing", eulogy, internment, a room full of tears and flowers—these are all things that just couldn't do my Leslie justice. Be assured that there will be specific opportunities to celebrate and remember her life—"memorial celebrations" in multiple Midwestern locations—in the weeks or perhaps months to come. There IS a specific plan—something beautiful that God has laid on my heart—and logistical details will be posted on this site when they become final. But, I want TJ and me, and her family, to be able to participate and celebrate in those moments with you all—and it's just going to take a few days for us to settle into the next part of our journey, before we are physically able to do so. I do apologize to those who might feel more comfortable with a more traditional process, but please be assured, the memorial service(s) will allow for the opportunity to celebrate, grieve, reflect, and worship, just as a more traditional service would.I don't know if this is the "end" of this blog… And if it is, I don't know how to give it the proper "closure". This whole thing started back in October of 2007 as a "news center" of sorts for close friends and family who cared enough to keep themselves updated with the details of Leslie's battle, and the life we were living in its midst. As word began to spread, we noticed more hits and growing interest/ intrigue—which then seemed kind of weird to us, to be honest. "But hey," we said, "if someone's loving and interested enough in this to take the time to read, I guess there's nothing we're typing that we wouldn't want them to know or share in with us." Then… Ginny's mirror site on blogspot.com… Then various church prayer chains… And of course, the proverbial "grape-vine" via old school and church networks… And a very popular "Pray for Leslie" yard sign campaign in NE Indiana… Next thing you know, we were being lifted up in prayer by literally TENS OF THOUSANDS of people whom we had never even MET before. The miracle is that people were actually encouraged by her story… and then coming full-circle, WE were coming to these sites several times a day to glean some encouragement from the responses. Know that we have felt more loved, more supported, and more strengthened by God at the behest of your prayers and love than we could ever have imagined possible. Just last week, Leslie and I were talking about the "blog phenomenon", and I was basically asking if she was cool with "continuing", as the outcome was becoming more and more "intense", shall we say. Those that know her understand that she is actually a rather "private" person-- better in small intimate settings. For the most part, a woman of few, albeit well-thought-out, words. (We balanced each other well, that way.) But her response was this: "Maybe I should worry about how many people know so much about me and this journey. But people have been encouraged. Lives have been changed. God has been glorified. This is the purpose and life that God has set before me. I'm going to keep living it until I'm at the finish line." In fact, each of you, every time you have clicked on this blog to read-- to share in this journey... you have culminated the "ministry" that God had given Leslie over the past 10 months. Thank you all, for making it easier for her to see God working in/through this. Thank you.Thank you, close friends and family, for your physical support—a child-care fund for TJ, gift-cards for gas and groceries, hundreds of meals over the past 10 months, hugs, tears, physical presence and support around the house… I can't give you proper thanks here. For that matter, I'm not able to give you the proper thanks even through the course of the rest of my life. Just know I'm going to die trying. And finally, thank you, Father, for the precious gift of Leslie. Thank you for healing her—for the peace and joy she is now experiencing—as You have promised through history through Your Holy Spirit, for which You provided through the blood of Jesus. Thank you for the 32 years You gave us to enjoy being with Leslie. Take joy in her now. Wrap your arms around her. And as if Your love isn't enough… if she cares enough to take the time to let You… please touch her now, with "holy kisses", which can remind her from time to time of the persistent love that fills the hearts of those she left behind—these friends who have shared in her journey; her family; her precious little boy; and her husband. She taught us to love. She taught us to live. We are forever thankful for Your gift of life… and for the gift of Leslie.Amen.-Tyson

In the Arms of God

2008-07-26T23:07:00.006-04:00

After a hard battle with cancer Leslie Jo (Bucher) Aschliman went home to be with Jesus.
She was a wife, mother, daughter, sister, daughter-in-law, sister-in-law, aunt, cousin, grandchild, and friend. She will be greatly missed.

beating cancer....

2008-07-24T10:53:00.003-04:00

Last week, when I was having a better day, my pastor/friend Ronn sent me a wonderful essay written by the late Whitehouse Press Secretary and cable news commentator, Tony Snow, which was originally published in Christianity Today. (Fellow-non-conservatives in the crowd, just hang with me here.) This is totally worth the 10-minute read. Mr. Snow wrote this masterpiece on cancer, suffering, life, faith, and dying when he was deep in the midst of "The Valley of the Shadow of Death" in his journey and battle with cancer-- a battle Tony eventually won, but perhaps not in the manner for which most of his loved ones were hoping or praying. This morning, I'm finding encouragement in this article, which resonates more precisely and completely with Leslie's and my experience than just about anything else I've read. He finds words that I've been digging for, explaining the anxiety, the periodic sudden rushes of clarity/wisdom and strength, the blessing of "prayer warriors", and the meaning and goodness of life, as one can only experience when walking through the Valley of the Shadow of Death.
Here is a link to that article, which Mr. Snow wrote a few months before he finally beat cancer. (Tony "went Home" a couple of weeks ago.)

http://www.christianitytoday.com/ct/2007/july/25.30.html
(you might have to copy and paste)

No real update, medically. She had one bad "attack" again late last night, in which I had to convince the doctor and nurses (again, new to her case), that all she needed was 1mg of morphine, her dose of Ativan, and a little time. They were trying to convince me that intubation was the way to go. Finally, a senior resident popped in, heard what I was saying, and basically coerced the nurse into giving Leslie the shots. 10 minutes later, her heartbeat was steady, her O2 saturation was back to normal... I TOLD YOU SO!!! (sorry, had to get that out... didn't allow myself to say that to the nurse and doc). Anyway, she got through it and rested for the remainder of the evening rather soundly.
Her breathing is more strained than ever, over all, and now they're concerned about some kidney-related tests they've run, which they're looking into today. Her heart rate is holding steady at about 20 bpm higher than when she was admitted. I'm just rubbing her back, holding her hand, and being a whispering cheerleader in her ear now-and-then. She mostly communicates by nodding or shaking her head to yes-no questions. Every once in a while she strings together a few words, but it takes so much effort. Please pray for her comfort and peace.

Tyson

Sweet Home Loyola

2008-07-23T20:04:00.000-04:00

Leslie had sufficiently stabilized by this afternoon, so they transported her to Loyola, where she can be among her docs and the staff that is familiar with her case. It's a different ICU, this time, so none of the nurses know us, which is a bit disappointing. It takes a while for a new staff to a) understand I'm not full of crap or being ridiculous when I make unusual requests and advocate on her behalf, and b) really get to know her, medically.
It has been a very emotional and difficult couple of days. The next couple will be as well, as we "wait and see" how her body reacts to the antibiotics, in the hopes that these severe difficulties breathing are merely a result of complications brought on by pneumonia, and not the dreaded advancement of her cancer. Crazy, but there's just no way to tell, other than how she feels in the coming days.
Needing prayers for peace, comfort, and wisdom to fall on us in abundance from the Almighty, more than anything else these next days. Thank you all. Your prayers are felt. Your love is reciprocated. Your support is gladly accepted.
-Tyson

New ICU

2008-07-22T16:47:00.000-04:00

Leslie is in the ICU at Bolingbrook/ Adventist Hospital, locally. They took her there via ambulance around midnight local time. I'm back at home now, (was on a work trip from Sunday night, planned through this evening), and her Mom and I are tag-teaming between TJ @ home and Leslie @ the hospital. Leslie needs your prayers. They currently are giving her as much oxygen through her face mask as they possibly can. The next step would be a ventilator. This terrifies me, of course. For the most part, Leslie rests now. She has had 3 "attacks" today, where she wakes up and is unable to breathe. It was in the middle of one of these last night about 2:30am that a doctor called me and basically asked if they had permission to put her on a ventilator. Leslie and I have not ever talked about this, and I'm kicking myself wondering how this as slipped my mind until now. (Call it avoidance, perhaps.) Fortunately, it was not necessary, as she soon "stabilized", shortly thereafter. The facilities are much more comfortable and quiet at Bolingbrook than at Loyola's ICU's, but we are eager to hear from the doctors here that she has stabilized enough to get her on a transport to Loyola, where the doctors and nurses know her case, and where we know the doctors and nurses. (The doctor here says it won't be until tomorrow at the earliest.) Anytime you introduce a new network of health professionals into a case with Leslie's kind of track record, there is much confusion, chaos, and frustration. Everybody here so far has been fine, kind, professional, etc... but we just want to get her on that transport to Loyola.I'm basically in shock here... We had a very nice Sunday before I left town. When I left, she was seeming so strong-- tired from a 3-hour trip wheeling around the mall and having lunch (THANK YOU GOD!)-- but strong and joyful. Now this... ...Needing prayers more than ever. (Haven't I said that several times already in the past???) Tyson

Calling All Prayer Warriors...

2008-07-22T10:36:00.001-04:00

Asking for you to lift Leslie up in prayer. She was transported to the hospital in the wee hours of the morning.
Tyson is in route from being away on business. Pray for safety as he travels. Pray for TJ and their families.
Pray without ceasing

ginny

Lower Plateau

2008-07-20T07:13:00.001-04:00

My day was pretty eventful-- even rather enjoyable, I feel guilty to admit-- taking care of Leslie, entertaining and directing TJ, playing house-keeper, etc... I'm pooped. (Do people say that anymore? We need to bring it back, I think...) But I was feeling pretty good about my efforts. TJ had a better day. (With all the action lately, his routine and general attitude and emotional fortitude basically went into the tank, but we've made some steps toward "recovery" this weekend.) Leslie got a lot more rest today, and even ate a bit. The house is in better shape than when I started this morning...But after I got TJ to bed (too late) tonight, the emotional flood-gates were opened. Leslie, now fully "awake" from her 2-week slumber, is really struggling with the spiritual/emotional side of this fight. Physically, there hasn't really been any improvement since we got her home. So weak. So tired. She's not any WORSE, really... just about good enough to keep her out of the hospital. It just seems like forever since she's felt anything resembling "normal". And it just gets her thinking, (to steal a movie quote from Jack Nicholson)... "What if this is as good as it gets?"She found herself listening to TJ and me interact downstairs today (she never made it out of the bedroom, again today), just missing us. We're still HERE, and she knows that... but she can't help but feel she's not "here" with us-- not able to do the mommy things she so longs to do. It's just too easy to find herself asking, "what if I never _______". So many blanks to fill in...So we had a "good cry" tonight, mixed in with prayers for healing, for peace, for comfort. We actually woke up TJ. Poor guy. He asked why mommy was "trying" (as verbal as the little guy is, he still has trouble with certain consonants) :). I tried to explain the best I could. "She was just really hoping she'd be able to go to Lifetime and Panera with us today... and it's been so long she's taken you to the zoo. It makes her sad that she doesn't feel well enough to do those things." He seemed to get that... still he asked, "But why is she trying?" (He's deep in the heart of the WHY stage these days.) (So is his daddy.) "She is crying because she is sad," I answered. "BUT... do you know what makes her HAPPY?" He seemed to be rather interested to hear my thoughts, behind his tired eyes and his paci, as we rocked. "YOU make her happy! Every time you're in her room, and give her kisses, and read books with her. And every time she hears you playing downstairs, it makes her happy." He shot me a very proud-- and tired-- grin, and went back to sleep.Tonight, our prayers are more along the lines of "How long, O Lord?" and "Take this cup". Oh, and God... protect and strengthen our little boy's heart. Let him be filled with Your love and Your strength, even now, as we've seen You do previously, throughout this journey along this road You've laid before us. Tyson

She'sBack HOME!!!!

2008-07-17T17:14:00.001-04:00

Joy comes easily today! We got home from the hospital JUST in time for lunch... and were welcomed by a surprised and very EXCITED almost-3-year-old. Mommy gets to rock and read to him before his nap, momentarily, and all is well with the universe, once again.So yeah... After several days of very little to no progress, she turned the proverbial corner pretty quickly and suddenly yesterday and last night, and she was feeling pretty "normal" this morning (whatever normal is, these days). Yesterday her appetite returned, and her body is apparently digesting what she's taking in pretty well. Her strength seems to have come back rather suddenly... She weighed in at 100lbs this morning-- first 3-digit day in several weeks-- which means that she gained almost 10 pounds since they admitted her late last week. She asked if her shorts made her look fat. (Just kidding!) And she's re-hydrated (probably the greatest source of the weight gain)... electrolytes looking good, and maintaining. So yeah... That sucked. But really, she just needed a little bit of a "re-charge".Funny story (kind of funny... or scary, maybe)-- The plan was to discharge her this morning just in time to get her to the Cancer Center for her "Week 3" infusion. I asked the on-service oncologist no fewer than 3 times... "Are you SURE? We don't get a week off or something???" But, Leslie would pipe in, "I've felt worse before than I do now, going into these-- might as well keep on schedule-- keep this thing going." (Again, visits 2 and 3 of each cycle have been pretty "easy", as far as the chemo infusions go. She hardly even feels them anymore.) So, we sat there, waiting in the Clinic lobby (as usual) to get her hooked up to her poison machine... when Dr. Clark walked by. He looked at us with a rather puzzled smile, excused himself from his party, and came over and pulled up a chair."What are you DOING here?" he asked."It's Thursday. Urbitux today..." Leslie answered."Well yeah, but... You just spent the last 5 days in the hospital. I'm not sure how I feel about this..."I piped in at this point, "That's what --I-- thought! But she's a warrior, and who am I to argue with her?"Dr. Clark laughed. "Let's just get you home and take a week to get some strength back. I'll talk to them and have them cancel you for today."We were both kind of relieved, I think, to hear him say it. The scary thing is, nobody even asked Dr. Clark HIS thoughts on getting her into her chemo infusion today-- they just "assumed"... He had no idea about the decision until he happened to notice us there waiting in the outpatient clinic. In FACT, he was just on his way over to the inpatient oncology unit (where Leslie had been) to pay her a quick visit. Yikes. Reminds me why I ask two or three times about EVERY little detail-- a personality quirk of mine that drives my wife NUTS, by the way. I guess in this case I should have asked the fourth time.Anyway, we'll meet again with Dr. Clark next week to determine where we "pick back up" with the treatment plan. For sure, she'll resume next Thursday, but we just don't know yet whether we'll stick with the calendar-- which would have her start back with the brutal "Week 1" treatments next week-- or if rather we'll just recommence where we left off, with the "Week 3" Urbitux infusion (thus, basically making this a "4-week" cycle, currently, with this being a "week off" of sorts). Dr. Clark will make his recommendation when we see him on Wednesday.In the meantime... **DEEP BREATH** **exhhhhhhhhale** Back to livin'! Just in time for a nice sunny (forecast) weekend! See some of you at church on Sunday!Thanks for praying us through this week! And... might I just say...HALLELUJAH!!!!! Tyson

Still Inpatient...Growing impatient...

2008-07-15T16:46:00.000-04:00

Leslie's doing better. She's sleeping a ton. Her potassium and magnesium (blood electrolytes) are still tanking, and they keep "recharging" her. Her breathing is getting a little better since she's been here. Her digestive problems, which were the key concern and reason they admitted her on Saturday, seem to be subsiding a bit. The doctors all believe this was just "a bad cycle". It happens sometimes, apparently. The body just doesn't recover as well or as quickly from the initial shock of the chemo drugs doing what they do those first few days. The side-effects just don't subside. They have reassured us that this doesn't "mean" anything-- there is no rhyme or reason, in her study's case, as to why some cycles are better than others. There is no trend they can put their finger on or map out or predict. Some cycles are just worse than others, and it has nothing to do with the cancer "fighting back", diminishing returns of the chemotherapy, or even anything "positive" (chemo finally working more, or whatever) for that matter, either.
The good news is that her chest X-ray from Sunday shows improvement from the one she had last month. Further affirmation that "this is working". They will most likely put her treatments "on hold" until she can get back on her feet. Barring some near-miraculous turnaround in the next 2 days, Thursday's treatment will probably be pushed back or cancelled altogether, and she'll proceed with the plan again next week. In a way, this is kind of nice news, because this means that we might get our "lost" week back-- maybe still able to get two good weeks in before they start the next cycle.
So... she's here until tomorrow, at least, they've just informed us. It's hard not to grow restless, impatient, etc... (We're trying to make the most of it-- had a little hospital room "date night" last night and watched a movie.) They just want to make sure she can eat and breathe and digest food properly before they send her back. We're going to try to take a couple of short walks today. Pulmonology just stopped by to do an O2 saturation check (she's still on the oxygen hose just about constantly), which includes a short walk. She's so weak she feels she might stumble with every step she takes. Again... we're just trying to get her a little stronger so she can go home and build some good "momentum" going into the next cycle. Thanks for your prayers and encouragement. We hope our next post is from home!
-Tyson

Saturday 10:00 p.m.

2008-07-13T07:39:00.000-04:00

So maybe I jinxed things, mentioning I was waiting for something eventful to report... Shortly after I posted the "Bittersweet" entry, the homecare nurse came over for Leslie's IV fluids. Karen (the nurse) didn't like what she saw or heard, and called Dr. Clark, who basically convinced us to bring her to the hospital this evening. He admitted her, and she is now asleep in her bed on the Oncology Inpatient Unit.
The concern is that she just is too dehydrated, under-nourished (she hasn't been able to eat much, and what she does either goes right through her or comes back up), and her breathing is getting more difficult. Karen believes she's hearing more obstruction in the area where Leslie's biggest tumor is located. Not sure what to make of this... They're going to run some more tests, which we probably won't get word back on until Monday or Tuesday. In the meantime, they're just getting her some IV fluids and oxygen (which she was on at home), and will soon administer some IV nourishment that they couldn't do via Homecare. And keeping a watchful eye on her.
This was quite a blow, emotionally-- we were so hoping and planning for a good family weekend together. We were initially feeling kind of "ripped-off" this evening. "We did our 'hard time'... Now give us our 2 weeks!" We were praying for peace-- whether to admit her or give it a go at home for a couple more days. Prayer answered. It's obvious to us now that this is the right thing. We're hopeful-- after conversations with Karen the Homecare nurse whom we love and trust, and Dr. Clark-- that this will be a short stay, and will be the best way to get her on her feet to the point where she can enjoy a few more days before hitting the next cycle with as much strength as possible.
So for tonight, I'm staying with her for another hour or so, until I'm confident she'll be settled down and comfortable-- able to rest peacefully for the night. My mom and dad came from Ohio on short notice. TJ was pretty pumped up to know that Mimi and Papa would be there when he woke up in the morning. He loves suprises. Again... we've got so much to learn from that little guy...
-Tyson

Bittersweet.....

2008-07-12T13:52:00.003-04:00

And I'm thinking...
Love...
It's bittersweet.
More sweet than bitter.
Bitter, then sweet.
It's a bittersweet surrender.

Those are the lyrics to a chorus of a Big Head Todd song I fell in love with in college. I think I just liked the melody and syncopated rhythmic guitar part. There was a certain passion and even an anguish in the singer's voice. Funny how songs that I used to enjoy and sing thoughtlessly along with take on a whole new meaning these days.(For those of you who are MySpace users, you can hear the song on my main Profile page-- just click on my name above the picture of Leslie and me in the upper left.)It's been bittersweet. I guess that's the report. I realize it's been over a week since my last update. I've been kind of waiting for something encouraging to happen-- some sort of event I can report-- so I could come at you with a "gee, that sucked, but things are looking up." And all I can really say, when it comes to Leslie's health, is "gee, this sucks..." And that's all. And it's an understatement of a lifetime. I can't even begin to recount all the "action" around here over the past week-plus. Summarized: Leslie was caught in a "Twilight Zone" of sorts, until about Wednesday of this week. She was (even in her own present recollection of the week) unable to differentiate between what was really going on and what was happening in her dreams/ delirium. The good news-- she was so out of it, she doesn't really remember much at all. But, it was rough, whether she realizes it or not now. She was so weak, it was all she could do was roll off of bed and onto the bed-side commode, and back into bed. Reach for the puke bucket, alert me (via TJ's baby monitor now in her room) that there was some "tending" to do-- usually just by groaning my name-- and then roll back over and plunge back into the sleep-coma. Maybe she'd manage a phrase or two of conversation while she was "awake"... but 90% of it was disoriented... she was basically working me into her dreams. And I didn't have the heart to tell her that I had no idea what she was talking about. It was just the dehydration (even though the nurse comes daily-- sometimes 2x/day to administer fluids), low potassium, poor nourishment, and the chemo-narcotic cocktail raging through her body... all working together to put on quite the show in her mind for the 5-day stint. Tuesday things were calming down a little, and Wednesday I was back to work. She called me that morning at the office, and I could tell by her voice-- even as weak and raspy as it was-- that she was "back"."Good MORNING, Baby!" I laughed."How long have I been sleeping?" She asked weakly."About 5 days," I said. "What do you remember?""I don't know... Commercials and parts of movies I know I didn't see... and bits and pieces of conversations I'm not sure we really had... What day is it?"Her mind is back with us, now. But her body is still so weak. She's still unable to get out of bed and to the bathroom by herself. She's trying to eat-- but her digestive track is still not cooperating. The nurse is coming by in a little bit to get her some more fluids. Our goal today is to get her downstairs and in the Lay-Z-Boy for the day, so she can participate-- or at least be a spectator in-- the normal Saturday action... Wiggles, baseball games (on TV and in the living room), books, pretend cooking, real cooking, etc... The objective is just allowing some of her strength to come back. Her weight is now down almost 40 lbs (and those of you who know her know that she didn't even have 5 to give, originally) since "the beginning". Her lungs and muscles and bones just need the stimulation.We had an emotional but wonderful conversation last night. We just had a lot of catching up to do. Her eyes are now alert and strong again. We're just trying to get her body to catch up a little. We're not sure why this "Week One" was so violently difficult... The doctor's don't even know what to expect, one cycle to the next. We can hope that it's because the chemo drugs are starting to make big progress against the tumors and cancer in her blood, and it's just wearing her out. But we just don't know. Meanwhile, I'm just happy she doesn't remember much of it.TJ has been so amazing through the course of this. He got to spend last weekend at his cousins' house in Wheaton-- a time full of fireworks, parades, and all kinds of fun and games... and family. He had so much fun, but was very excited to be home. He's kind of "adjusting" to Mommy being "sick". He's very "gentle" when he goes in to see her-- knocking on her door and quietly calling out, "can we come in Mommy?" before entering. He seems joyful, secure, loving, and very aware of everything... like he always is. Praise God for this. He is good and full of grace. He's protected Leslie's heart over the past week. Even her mind. And He's given me TJ-- my own little Ativan pill-- keeping me "calm and happy" when I otherwise should be struggling for my breath and sanity. So... I guess... it's like I said at first... Every day... Every breath of every minute... It's bittersweet. Tyson

Cycle 3

2008-07-03T22:55:00.003-04:00

Leslie is sleeping. I'm pretty encouraged. We did the "Day 1" chemo infusions in record time. She did the ride home pretty well, really. Went right to bed when we arrived home at around 7pm. At 8 she had a "typical" heaving spell, but (in a pleasant turn of events, contrasted to "last time"), it subsided after about 10 minutes, and now she's back asleep again. I've been encouraged by how (relatively) smoothly today has gone-- we've sensed peace and your prayers tonight, so thank you! My prayer tonight is that she can rest easily for the evening... and the next 4 days, for that matter. TJ is with Leslie's family, who all came to her sister's house in nearby Wheaton for the 4th... Good for him, and good (and quiet) for Leslie. All in all, the "best of the worst" as far as "Day 1" is concerned. Quietly praising God tonight-- not too loud, though. I don't want to wake her. -Tyson

p.s. Dr. Clark is relatively encouraged by scans, blood work, etc... The antibiotics seem to be doing what they should be doing to the pneumonia, and Leslie was pretty strong all the way through Day 21 this time... Like I said. I'm encouraged tonight. *Inhale* ... ... *Exhale* Good night.

Up and back down...

2008-06-30T12:57:00.001-04:00

They call them "cycles" for a reason, I guess... Breathing is getting more difficult again, and nausea/ vomitting is returning. I'm just trying to encourage her (without frustrating/ annoying her-- a tough task sometimes), by just reminding her that a) this is STILL better than Day 19 last cycle, and b) Days 15-18 were SO MUCH better than last cycle-- signs that we're moving in the right direction. She is encouraged by these reminders... but it doesn' treally make the suffering much easier.
We did have a good weekend-- made it to the reunion in Indiana. SUCH AN ENCOURAGEMENT to see all the family-- so many of whom have been such great prayer warriors and supporters. And we made it to Church on Sunday, too! So over all, it was a super weekend. Just last night she was starting to head back "down-hill". As hard as it is for her to struggle through the agony of the moment, we have been expecting this... that by Thursday this week she'll be feeling like she's got tumors in her chest again. And then, a week of misery. Followed by a couple weeks of feeling better again... and so-on.
We are encouraged, though, because we're figuring out (trial and error) how to make the first 5 days as easy on her as possible-- lots of iv fluids... and drugs. And also, the "good part" of the cycle seems to be getting longer. We're praying the momentum continues... and that these next 7-10 days fly by.

Tyson

Good News--10.15pm Friday

2008-06-28T07:23:00.000-04:00

Well, it's official. Leslie's treatment plan is working-- the "medical", "physical", "will", and "peace" are all coming together, little by little. The greatest piece of evidence we could have received to that fact came today in the form of a phone call from Dr. Clark. Leslie's CT scan shows definite shrinking of the key tumor areas in her lungs and lymph nodes. PRAISE GOD! She IS definitely feeling better, now that we're into the third and final week of this cycle, in comparison to last cycle. Still no walks around the block, but we're happy to have the conversations, even laughs. She doesn't need anyone's help to shower or do other bathroom-related things. :) She's bored of lying in bed-- which is a tribute to the clarity of her mind, now that she has been able to come off some of the "as needed" medications. Over-all, we're starting to see the "improved quality of life" the doctors were shooting for... and we have renewed hope that God just may so choose to not stop there...Tomorrow, we're going to try traveling-- an hour-plus drive into NW Indiana for a one-day (partial-day for us) reunion with the Bucher family. It will be so good for her to look up and see the sky through the sunroof and see the miles pass by. (I only hope it doesn't trigger her car-sickness nerve again...) And of course, just to be with her extended family will be such a blessing.Yesterday, Leslie's sister took her to her chemo (it was an "easier" week) and CT scan appointment at the hospital, which freed TJ and me up for a special treat-- We took the train to his first ever Cubs' Game! The Cubs looked terrible (reminding us that they ARE, after all, still the Cubs)... But TJ did great-- made it through all 9 innings, nailed every word to "Take Me Out to the Ball Game", and ate his body weight in peanuts and hot dogs. THAT'S MY BOY! His eyes were like softballs-- taking in everything. The skyscrapers down-town. The Metra and EL. He giggled with glee at his first glimpse of the grass, dirt, and bright white lines on the infield. He even thought the Taxi ride between stations was fun, looking up to me, grinning as he held on to his seat with both hands, as if to say, "I have ARRIVED!! I AM a big boy!" (It just dawned on me he's never been in a car without his car seat.)Praise God for a good couple of weeks, and for the realistic hope of more to come! We are truly cherishing every "good" day. And every not-so-good-day does have a way of passing by, leaving us with the hope that tomorrow just may be better. We were just talking tonight about how our definition of a "good day" has changed so much-- a "good day" today might just as well have been the worst day of our lives a year ago. Feeling well is a relative concept. (Which reminds me-- the CT scan also picked up some early signs of pneumonia in her lungs, so add another antibiotic to her list of prescriptions and prayer to the list of needs for the next 2 weeks...) But still-- right now, I just want to stay in this place forever... tasting the sweetness of these "normal" little conversations... seeing my wife and my boy love on each other... enjoying her friendship and her clear mind... Speaking of which-- time for me to go back upstairs. Just finished putting away groceries and she's still up. Maybe she's up for a game of Rummy...Good night. And a round of Hallelujahs on me.--Tyson

Big Day...

2008-06-26T20:31:00.001-04:00

It's been a pretty good week. Leslie was able to be off the oxygen tank for extended periods of time. Able to get up and down the stairs about once or twice a day. Able to sit up and eat dinner with us. Able to cuddle with TJ and read books and what-not. And able to have good conversation with us (her mom, sister, and me). Not nearly as much coughing or throwing up. Like I said, a good week.Today, she's going in for a land mark CT scan of sorts. The 2nd cycle is nearly over, and the treatment plan almost 1/3 complete. "If" this is working, the doctors should be able to see it in this CT scan. Our start-of-new-cycle appointment with Dr. Clark isn't for another week, but they typically like to have these things several days in advance of such appointments. We pray for our anxiety to be curbed, and our emotions not to wreak havoc on us, whether the feedback from the scans be good OR bad. We'll let you all know what the update is, when there is one to give.On a bright note, by this time "last cycle", Leslie's breathing was starting to get a lot worse, and her energy was starting to wane-- and today, she's feeling pretty well. Week One was absolutely HORRIBLE (not that any of us need to be reminded of that fact), but Week Two was pretty good (although maybe not quite as strong as last cycle-- needing the O2, no walks around the block, etc...). And now, Week 3 is off to a better start than last cycle. Now, we've been constantly comparing the days, the cycles, etc... to try to establish some sort of conclusion as to how this treatment plan is working... but we know 2 cycles are not enough of a "data pool" from which we can start to draw conclusions, point to trends, etc... All the more reason why we both look forward to and dread this CT scan today. As always, we appreciate your prayers.-Tyson

Minute by minute

2008-06-21T21:34:00.001-04:00

I know it's been forever since I have written. Honestly I just don't know what to say. My feelings physically/emotionally change so often that by the time I make it downstairs my thoughts have shifted and I get distracted by something else. I am thanking God this week for increased health and strength and MUCH needed time with my family.After a wonderful last 2 days with Tyson and TJ, I find myself sad tonight. My body is just not allowing me to do all I want so badly to do. I can sit and watch a 2 hour movie forgetting that I am even sick until the second I stand when I immediately start gasping for breath! I can have the greatest night of sleep, sit up in the morning feeling just fine and then again, be out of breath before I make it to the bathroom. I see a dirty house that I want to clean, but can't. (No, this is not a request for house cleaners! I have those, but I WANT TO DO IT!) But most of all I see a delightful 2 year old boy who giggles with glee when he can go on an outing with his mommy AND daddy, even if he has to sit on my lap in my wheelchair (thanks, Matt). I want more of these outings. I want more dates with my husband. I have never appreciated them so much in my life, and I WANT MORE!!!! There just isn't enough time in the day to spend with them. I'm tired of laying around because my body isn't as well as my mind. Last week I thought I might die because I felt so sick. This week I just want to LIVE!Are you confused yet?! I am. I've never been so thankful, full of love, full of sorrow, confused, angry, sentimental, hopeful, and so unsure about my future all at the same time. No wonder I am tired.I need to say some huge thank you's this week that are way over due. Thank you, Liz for holding us together during the week! You take such good care of us, and I couldn't be resting if I didn't believe that you truly love my little boy and he loves you! Thank you, Tyson for being the glue that keeps this house from falling apart!!! Forgive me for not always appreciating "your ways of doing things". We wouldn't be able to function if you weren't doing all that you are doing. I love you more than ever. Leslie

Pray for all the "Mike's & Tyson's" out there

2008-06-18T20:57:00.006-04:00

The post you are about to read is from Jessie Rosebrook. Leslie and Jessie have not had a chance to physically meet but have become very close through their battles with cancer. Jessie is married to Mike and they also have a little boy, Luke. Her blog address (http://www.forjessie.blogspot.com/) has been posted on this site for some time now. Jessie just finished round 9 of chemo and wrote this in her blog after the treatment...

"Last but surely not Least, a tribute to all the "Mike's" out there. Cancer surely is miserable for the one with the diagnosis but it's miserable for those who are there with you. Those of us with cancer get the sympathy and the prayers but sometimes forgotten is the one who is holding our hand the whole way! Mike is the one who carries all the weight on his shoulders. Holding up his job, a side job, a rowdy little boy, a sick wife, a home, and trying to be the strong one all the time. His burdens are not the same but just as big. I'm also blessed with a mom who would give me a new brain if she could and a family that would do anything to "fix" this. I also have found that I have great friends. I read once in some cancer book that your friendships will change throughout this and it was right. Some friendships have faded and others have been made so strong. Each and every person who stands by someone who is fighting cancer is truly fighting cancer too. So THANK YOU to ALL of you!!"

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Please keep the "Mike's" and "Tyson's" in your prayers as they battle cancer alongside their wives.

-ginny

Made it through...

2008-06-18T12:43:00.001-04:00

So we made it through. I'm going on about 3 hours of sleep, (and most of that on the bathroom floor with TJ), depending on how you compile the minutes. TJ threw up probably about 8-10 times from 9 until about 4 this morning (and 2-3 more times during the day yesterday). Seems to be doing better now-- had some toast and Gatorade for breakfast. He hasn't "pukeded" yet. Leslie also seems to be doing okay. She had another bad coughing spell about an hour ago, but didn't throw up. It was just time for cough syrup, I think. She's not up for eating (again/ still‚), but sleeping pretty well, when she's not coughing.Praises to the Father this morning for "getting us through" that night. And for the new (and beautiful) morning. Tyson

Tuesday Night Prayer

2008-06-18T07:00:00.001-04:00

God, I'm having a hard time understanding You tonight. How is it, that in the MIDDLE of a bed-time prayer with Leslie, during which I pray (again) for peace and rest which leads to renewed strength in the morning, that she begins coughing violently, then sits up, and proceeds to puke what little nourishment her emaciated body has been able to take in tonight. In the MIDDLE of our prayer for just the opposite...?!You KNOW we believe You are God, You are here, and You are good... ALL the time... All we're asking is that You show it a little bit... You don't need to prove Yourself. You have nothing to prove that's not already written on the hearts of every man, and throughout all of Creation. Yet still You HAVE done just that-- proven Yourself time and again through the ages... through the cross... in our very lives. We're just asking to SEE it... first hand... just a little glimpse... tonight. Are You testing us? Trying our faith? You KNOW we're not going anywhere. You know our faith is steadfast. We have Job, Habakkuk, David, Peter, Paul, and so many others who have gone before us. (Not to mention our dear brothers and sisters who have also tasted this kind of suffering, first-hand, and turned gratitude and praise back to You in the midst of it.) We know that in life there is suffering, and even in suffering, You are there. We have learned of new dimensions and depths of Your goodness in the midst of this nightmare, and have claimed it. But... in the MIDDLE of our prayer tonight...?Yes, we fail to understand. But we don't fail to trust. We don't fail to love You... to call out to You. It's just Your method that leaves us wondering. Seriously... is THIS what it takes for us to bring You the glory You desire from us? Yes, we wonder tonight at that. At that, and at the fact that we're just not quite sure whether Leslie's vomiting is from the chemo... or from the FREAKING VIRUS that has had TJ puking his little guts out all day and night as well. ARE YOU SERIOUS?? Now we're begging for mercy on our 2-year-old as well??! I'd flippantly challenge You to just hit me with it while You're at it and just make it a "full house"... but truly, I'm fearful You'd do just that... for some unexplicable (albeit Godly) purpose. So, I find myself begging for mercy, to not be stricken with whatever it is TJ has... and either has or hasn't already been passed to Leslie. I guess I'll take the opportunity to thank You for making TJ such a wonderful little kid-- a "warrior" like his mommy-- getting up from his make-shift, toilet-side bed all by himself, while I was tending to Mommy, to direct his vomit into its proper place... He was so proud of himself, and made sure I took a good look before I flushed it. He's been such an angel this evening, and yes, I thank You for that... because I'm not sure how else we would've got through the night. (But then again, we're not through the night yet. Please God... get us through the night... with some peace and rest.)Father, I'm finding myself even scared to type these words... fearful of how You'll answer in all Your infinite wisdom... mysterious as You have proven Yourself to be. I'm scared to ask for bread, lest You give me a stone... Yet You have PROMISED in the Gospels that You wouldn't do that...???... I guess... tonight I just pray... claiming again that promise... Give us today our daily bread. Forgive us our trespasses... our feeble minds... Our lack of understanding. Our self-pity. Our arrogance that may suggest that we somehow know better than You... Bind temptation and all kinds of evil from us. Deliver us, tonight, oh Lord. For this is YOUR kingdom. We are witnesses to YOUR power. Forever.Amen. ..................Tyson

Misery Loves Compazine

2008-06-14T17:08:00.001-04:00

So, today wasn't the peaceful day of rest and recovery we were hoping for or expecting. From bed-time last night until sometime this afternoon, Leslie only slept for an hour at most at a time, waking up for violent spells of dry heaving, coughing, and gasping for breath. Not sure if it was the fact that she got a "full dose" of the Oxaliplatin this time, or what... but it was pretty bad. "Doesn't God HEAR me?" Leslie whimpered to me, as I rubbed her back, trying to comfort her, in the midst of one of these "spells" at one point this morning. The routine was that we'd sleep for about 45 minutes, wake up and wrestle and pray through the next 20 minutes, "clean up", and then try to sleep for the next 45 again... and so-on.What do you say to that? I mean-- certainly he feels her pain. Hears our prayers. Indeed, hears the prayers of THOUSANDS of brothers and sisters across the world, literally... and still, He seems to sit by and allow her to suffer. "He hears you, Baby. He's right here. He hates to see you going through this.""But He could STOP it, if He wanted to... He could make it better..." Tears were rolling down her cheeks as she panted, now... the words barely a whisper. Panic in her eyes.Eventually (seemingly hours later-- more like 10-15 in reality), the attack subsided, and she was resting again.Anyway... after I made several phone calls to various parties within the Loyola network, Karen the home-care nurse stopped by around 1pm today, with orders from Dr. Clark, to give Leslie 2 liters of IV fluids (she was so dehydrated) and 2-3 different anti-nausea meds. That eventually settled her down. As a result, she's been sleeping pretty soundly since about 3 or 4 this afternoon. Before leaving, Karen said-- "This will NOT be like this, honey. We're going to up your med's and up the fluids. We'll get you through this.""See, Babe? God heard your cries," I tiptoed in and whispered in her ear, giving her a kiss on her feverish cheek a few hours later. "Thank you, Father." She nodded in agreement, giving silent thanks, not able to open her eyes, and then drifted back to sleep.Phew. That was a rough one. It's so wonderful to see her sleeping so deeply now-- rosy cheeks, breathing slowly and steadily. I'll probably sleep in the basement. She's sprawled all across the bed, and I don't have the heart to wake her. She's got TJ's baby monitor in her room, and one of the receivers is in the basement, so I'll here her if she wakes...Tomorrow we try the day on our own. I'm praying she sleeps... oh, about 20 hours or so out of the next 24. TJ and I have big plans. Breakfast and then a baseball game in the back yard. (He's been a little angel again, over the past few days. The one thing that brought me actual joy today. What a blessing!)Anyway... each day is an adventure. This one has a happy ending. Good night. We're resting easily in the shelter of Almighty arms tonight. Thanks for your prayers today.--Tyson

Cycle 2, Day 1

2008-06-13T08:26:00.000-04:00

This "Day 1" was better than the first. Leslie didn't throw up until after all of her drugs were infused this evening. She's pretty miserable now, but in reality, doing MUCH better than she did 3 weeks ago-- feeling proud of herself that she got her full doses in. (It's a drug called Oxaliplatin that is the really mean one. She gets it 1x per cycle, only on Day 1, and last time, they had to "cut her off", because it was just too much for her body to take.)We got back from the hospital about an hour ago. She's sitting up, now, talking with her sister-in-law, who came up from Indy to watch TJ during our trips to the hospital yesterday and today. Again, relative to the previous cycle, we're encouraged with how she's doing tonight. The next 4-5 days, we know, will be pretty awful. We'll get through, though, and are looking forward to another week or so of feeling quite well after that, again.We're not sure if it's the cracked rib (Dr. Clark's unofficial diagnosis of what "popped" in her side), or the fact that it was just time for another shot of cancer-poison... but she's having a lot of trouble breathing, again-- almost as bad as her pre-chemo days, when the tumors were "squeezing" her lungs. Her O2 saturation wasn't where they wanted it to be before they released her from the clinic tonight, so they sent her home with her very own oxygen tank, which is now hooked up to her nose. She won't need it all the time-- just when she has her "attacks", which seem to be pretty predictable/ regular, whenever she gets up to go to the bathroom, go downstairs, or whatever. Really, the O2 tank's a bit of a "security blanket", because those attacks can be so scary, as she struggles to stay calm and catch her breath, unable to fully inhale. So, while "she's on an oxygen tank at home, now," sounds pretty bad, it's really a relief... just a little something to get her through the tough moments.We praise God that her mind is clear, and her strength and spirits are up. She has a quiet (albeit uncomfortable-- nearly miserable) confidence about her. She's looking forward to feeling well again, and knows this is necessary to get her there. The goal for the next 4-5 days is to get her as comfortable as possible, so she can sleep off as much of the "chemo-hangover" as possible... Sweet dreams, Baby. See you (that is, the REAL you) again when you wake up... in a few days.

-Tyson

"...Singin' -- for the glory..."

2008-06-11T17:49:00.000-04:00

We go in to see Dr. Clark today. He will give us his feedback on how he thinks the chemo is working. Funny... I should be scared of what he might say. I'm not. Just another trip to the doctor. Tomorrow, Leslie starts the cycle 2 of the chemotherapy. She'll be nearly unconscious and miserable --(I guess if you're miserable, might as well be nearly or fully unconscious)-- for the next 4-5 days after that with the flu-like symptoms. Then, we're looking forward to/ hoping for another nice two weeks of feeling better and being a "whole" family again.

I was humbled and honored to receive an email from an old friend on Sunday. He and I go way back to church "youth group" and "camp" days. He's now a school principal and serves on the weekends with his church's worship team in Ft. Wayne, IN. It's a HUGE church with 3 services on Sunday, and my friend said I "was on his heart" through all 3 services as he sang this past week. We've received so many words of encouragement to that effect, from people in various situations. And, as my friend states, it's just amazing to witness how God's Spirit moves people to specifically think, pray, etc... (He hadn't yet heard/read, at that point, of Leslie's cracked rib, or whatever it is.) Anyway, I know I've babbled on in the past about the importance of "Worship in the Storm"-- giving God glory in the midst of hardship. But as I reflect over the past few weeks of posts, it seems like the "blog" lately has been more focused on the "storm" than the "worship"... So, today, I'll just give you an excerpt of my response to my worship-leader-friend-guy... as a reminder to myself, more than anyone else, of just WHAT, "in Heaven's name", this whole thing is about...

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It's good to be thought of and prayed for. Especially when the prayer (or prayor) is in the midst of worship. It's amazing to me how my heart is moved to sing in the most difficult of times. Those morning drives to the hospital to see my sick wife. Those nights at home alone, when she's still in that hospital bed. In the shower these mornings, getting ready to go to work before she or TJ get up, sleepy from too short a night, not wanting to leave them for the day... All I can do is pray and sing. This is the Holy Spirit, I know... the stuff stories in the Book of Acts are made of. Stephen, in the midst of his trial, looking up and seeing the glory of God. Paul in chains, singing songs of praise until the prison walls crumbled. Dude must've had some PIPES! :)

I had the opportunity to lead worship for a Sunday evening service with my church this past weekend. It had been 3-4 weeks since I'd been to church, let alone in front of a microphone leading worship. Leslie was having a pretty good week, we felt like we were able to do the church thing, so I called the director and told her I could chip in this week. Of course, that was before the whole cracked rib/ strained muscle thing... Leslie ended up having to stay in bed the whole weekend... But anyway... We only have "Community Nights", as such services are called, once a month. And typically, the people who show up to these services are the ones who are passionately connected to the body, desiring to worship, etc... It's more of a casual event... no sermon. Just testimonies/ sharing, prayer, "church business" discussions, and worship-- sometimes baptisms. This particular week, we had no morning service, so people came in "hungry". (It was a "The Church has Left the Building" Sunday-- we've done it a couple times-- when instead of meeting for church, we organize and meet for various community service projects around the area. We then get together for a "Community Night" celebration that evening.) It was so good to worship corporately with my "family" again. And unbelievably emotional. I hadn't planned for that, which made my over-all vocal showing a little weak, but no one cared. And the old guitar skills had grown a little rusty, too. But, worship happened... as I've learned it typically does when the "leader" is broken, and the congregation is just in love with their God. He was glorified. And it lifted my heart, soul, and mind to the point that it's getting me through the week this week.

(As a side-note, the most beautiful part of the evening was looking down and seeing TJ sitting with some friends, singing along at the top of his lungs, dancing around, to one of his favorite songs... "Mighty to Save". If there's one thing I want him to take and to OWN from this period of his life, regardless of wherever this path leads us, it's this: "My Savior-- He can move the mountains. My God is mighty to save, mighty to save! Forever, Author of salvation, He rose and conquered the grave. Jesus conquered the grave!")

The human response to suffering and hardship is "Woe is me." The response which God desires-- the response for which we were created-- and the response for which the grace of Christ provides through His Spirit, is "Hallelujah!" (That is, "a joyful noise," or, "a song of praise".) The battle cry of our little church, as it's been growing in depth and numbers over the past year is... "God is good! ALL the time!" And it's amazing, but not surprising, to see God work to lift the human spirit when we just turn to Him and worship in such difficult times. Again, it doesn't necessarily make our troubles go away... but it lifts our spirits... He "gets us through". And, most importantly, it fulfills our God-ordained role and purpose-- it brings Him glory.
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--Tyson

Post from a post...

2008-06-09T06:58:00.002-04:00

Comment from Kara:
Sigh... sorry, once again, for the setback. Keep holding on... Love you, Kara

Response from Leslie:
Since I haven't written forever, I thought I would at least make a comment. As you said it best, Kara, "SIGH" is about all we can say. I have never had a body that just keeps falling apart and refusing to cooperate. Surgery after surgery, procedure after procedure, it tries to bounce back, but this cancer just won't seem to let it. We are praying that as I begin Round 2 of chemo this Thursday we will see more dramatic results in the improvement of my breathing. That is the most terrifying thing, when I just can't seem to catch my breath even after a short walk to the bathroom! The days get very long, but we will get through this. Love you all...Leslie

Another bump in the road....

2008-06-08T16:38:00.001-04:00

Leslie either cracked a rib or pulled a muscle coughing on Friday night. Dr. Clark said it very well could be either, and there is nothing they can do about either, except up the pain med's a little. She was having a very nice evening, was just starting to lay back in bed, and coughed in an awkward position, kind of twisting/ leaning back. She heard something "pop" on her right side, near the scar from the biopsy, and a night of misery ensued. She couldn't cough, breathe, or move without severe pain shooting all around that rib-- front to back. Yesterday was a little more bearable, but barely. It made for a rough one, since her body was just starting to get stronger, her mind getting clearer, her heart feeling a little more like a "normal person"... and then being able to do nothing but lie there and look at the ceiling. Every little pain, odd sensation, bump that she hadn't remember being there prior... everything was just amplified by her restlessness and inability to distract herself.We had a great talk, prayer, and foot-rub time last night (I was corralling TJ all day, and couldn't give her my undivided attention very much), and she's a bit calmer now. But it's just so frustrating to see another setback. She was just starting to get her "wind"-- literally and figuratively-- feeling a bit of that "peace" and "will" we keep discussing. All we want to do is be able to take a short walk. Sit together at the table and have dinner. Sit up and watch the latest Office episode. Have her rock TJ at bed-time. And we were doing all those things for a week or so... and then this. We're not asking much... Just to make the most of the reprieve the medicine is giving her right now. *(&^!@!!Today, the pain is a little more manageable, but it will be another bed-ridden day for her. She did make it downstairs once yesterday, but it took everything she had. She's back to that scary, panicky feeling she had prior to chemo-- like she can't catch her breath. However, we're confident it's just a "setback". Each day is a little better, and soon she'll be back to having "a good week"... it just might not be for a week or two. (Thursday this week she starts a new cycle, so that will take her out of commission until Tuesday or so of the following week... but by then, her pulled muscle or cracked rib or whatever shouldn't be hurting as badly... so we're just "getting through, moment by moment, breath by breath" until the 17th or so.) We know our cries are heard. We know our burden is lifted... but yet it seems so heavy. He has provided the very tangible love and support of His body/family. We are grateful for His obvious presence, but we are again frustrated at another bump-- or rather, a traffic-stopping, February-in-Chicago-esque pot hole-- in the road that he's stretched out before us. Tyson

More like Leslie.....

2008-06-03T06:30:00.001-04:00

The last few days have been such a sweet relief. In the 32-year scheme of things, Leslie's still not healthy (obviously...). BUT... the chemo is definitely doing what it's supposed to do. The "bad stuff" from days 1-6 has (apparently) effectively had its way with the tumors, and its side effects are now dwindling. Leslie is feeling better-- able to get up around the house several times a day, hold a "normal" conversation for a while, etc... We even took a family walk around the block yesterday! She's still sleeping quite a bit, but feeling much better. Coughing and vomitting much less. The coolest thing, for me, is that when she's "up and around", she's got that flicker in her eye again... My girl is getting her groove back. Her spunk, her mind, her love and passion... She's "Leslie" again-- albeit a more tired and weak version. It's just so amazing to think about how this is working. I mean... they're basically poisoning her body, and the cells that were killing her are so aggressive that they've been exponentially more affected than the other cells. We were so afraid of chemo, but really, she's feeling so much better, for now, than she did when the cancer was running rampant, chemo-free. We need prayer now, more than ever... the doctors basically predicted this. Now it's just a matter of how her body decides to take up the battle for itself. It's only a matter of time, we know, until the cancer starts to grow resistant to the chemo drugs... when the good cells start to be affected more than the cancer cells... when the negative side effects outweigh the potential gain in the battle. Then... it's up to Leslie's own body.
But for now, we're enjoying just feeling a little better. Feeling like we're living again. Work is busy and going well. Many fires to put out. And she's back to being a mommy... with a little help here and there. It's good for all of us to concentrate on-- and put some energy into -- something else other than cancer now and then. So... this is what they mean by "quality of life". Meanwhile, it's allowing us enough energy to catch just a glimpse of the "Will" it's going ot take for her to beat this thing.
I'm encouraging her to blog one of these days, now that she can think (and type) clearly enough to piece a paragraph together... Stay tuned. In the meantime, blessings abound. I'm not getting tired of thanking you for your prayers and encouragement which have sustained us through the past several weeks... I hope you're not getting tired of reading it... Thank you . And praise GOD!
-Tyson

"Living with Cancer"

2008-05-27T16:12:00.000-04:00

So we are test-driving our new routine today. "Living with cancer" has become a modern day cliche' it seems, but it's fitting nonetheless. We've established a sort of "nanny" hook-up through church, which looks to be shaping into quite the blessing. "Miss Yiz", as TJ calls her (Liz to the rest of us), has been a favorite of ours, in the realm of baby-, dog-, and house-sitting, for the past few years. She's available to basically hold down the fort Mon-Wed during "school hours" for the next several months. And our families have essentially offered to cover 24-hour shifts Thurday and Friday as needed. This allows me to get back into the work thing a little, and (more importantly), will allow a certain consistent and predictable routine to be established for TJ, Mommy, and even Daddy and Jack (our Labrador). Liz even has a new puppy to keep Jack company when she comes to "hang out". (As a side note, the puppy's name is Lovie, so Monday through Wednesday will be "Yiz and Yuvvy Days".)
Leslie's feeling pretty miserably today. We're pretty sure it's the "fanny-pack" chemo which is having its way with her, currently, which was just disconnected yesterday. Hopefully in a couple of days, these symptoms ("stomach-flu"-like) will subside. She's dehydrated as a result, and our favorite home-care nurse even came in on her day off this morning to aminister some IV fluids and take some labs, just to make sure all's "kosher". As another positive side-note, this PICC line actually works the way it's supposed to (as opposed to the last one Leslie had), so they can actually draw blood from it, and not have to stick her in the arm several times a week for this-or-that.
After the family cleared out yesterday, Leslie and I had some good catching-up time... The bottom line is, as far as the "Peace and Will" half of the puzzle is concerned, we are seemingly in very different "places". I'm puttin' up my dukes and ready for a fight, and praying my guts out and aware of miracles happening all around me... and Leslie... well... she's puking her guts out. The difference between us (if not glaringly obvious already), is two-fold: 1) She is just not well enough to think straight, most of the time-- almost having a hard time differentiating between dreams and conversations she actually had-- so this is going to take her a while. And, 2) I just process things more quickly. I'm a guy-- we tend to compartmentalize... "divide and conquer" anything set before us. Anyway, this discrepency has left us feeling a little disconnected from time-to-time, which is both terrifying and very frustrating. But the "catching-up" time yesterday was good for us-- not that it brought our current mental/ emotional states any closer together, but now we can at least understand and again have confidence in the other's position, faith, support, and general state of being, rather than just worrying (me) or being frustrated (her) with the other's attitude, outlook, or general discombobulation. We're learning what it is to live with cancer. Be married with cancer. Be a family with cancer. It ain't fun. We pray daily that "this cup" be taken from us. But today, for the first time in 3 weeks, it seems like we're starting to get back to LIVING with cancer, rather than "dying" from it/ being controlled by it. Or at least, that's how I feel, at this given moment. Maybe I should check with her later, again, to see if she's "on board". Shoot. Maybe I should check with ME later, to see if I'M on board...
Anyway... back to living... Tyson

Quiet Sunday Morning...

2008-05-25T10:09:00.000-04:00

My parents and sister all came in from Ohio to paint our 2nd floor rooms this weekend. It's been great to have them all, and it will be wonderful to have things a little closer to "finished" with the house. (Although I confess, the chaos of it all has been a little hard on me, but I'll get over it.) Leslie was first diagnosed with cancer 1 month after we moved in late last August, so we're not fully "settled in yet". She and I actually went out to Lowe's and Home Depot yesterday to pick out some light fixtures. It was a sweet (I don't care if it was short) "date night".Yes, she's feeling better. "Infusion Day" on Friday was very rough. The one drug made her throw up and react pretty violently by the time it was only half-infused, so the oncologist stopped it. I was concerned what it might mean to only get half of her "dose" in, and I guess we'll wait-and-see, but the nurse reassured us that if she's reacting like that, it's doing its job. They finally let Leslie go at about 7 or 8 that night, complete with a fanny pack full of the 2nd drug (which we go in to have disconnected tomorrow already), and a pretty high fever, some nausea (what's new?), and nearly unbearable fatigue and general "achy-ness". Nearly all those symptoms have subsided, at least somewhat, by now. It's kind of funny, really. Most of the side effects of the chemo were all things she was dealing with previously, with what the cancer was doing to her "naturally". So actually, she's feeling better now than she has in a few weeks (as evidenced by her getting out of the house yesterday-- we had to take a wheelchair, and she got to drive one of those cool shopping-go-carts with the flashing light, but still, it was quite the little victory.)She's still quite short of breath, and needs to sit or lie down to rest after getting up to go to the bathroom, or down the stairs to sit and watch TV or whatever. But she's sitting with us at dinner, feeling a little more conversational, and able to love on TJ quite a bit. We're so thankful. She was so afraid of what the chemo might do-- and it turns out that it's not as bad as living without it, oddly enough.I really don't have much to update beyond that, really. We're just getting some much-needed rest. Haven't really processed or thought about "what now" or whatever. Just "settling" a bit. All that will come in due time.Thanks again for your prayers and kind thoughts and gestures. Hope it's as beautiful wherever you are this morning as it is here, and I hope we can all enjoy it!-Tyson

Infusing

2008-05-22T16:58:00.001-04:00

Leslie's lying down with a bag full of poison pumping into her arm right now. We arrived a little before 9am this morning to have a new PICC line installed, through which she will be receiving her chemotherapy, at least through this first 21-day cycle.
Day 1 of each cycle is the long one. She's receiving the first of 3 drugs they'll be introducing today. This one is the particularly nasty one, and since it is her first time, they're needing to infuse it very slowly. As I type, she's kind of freaking out that she might be having the "allergic reaction" they warned us about, which occurs in 3% of people who get this drug. It could be just her normal cough and discomfort... it's just hard to decipher, because the "symptoms" of a potential allergic reation are about identical to the symptoms she walked in with this morning. Anyway... We're keeping a good eye on her. It's likely not the allergic reaction, and even if it is, it just means today might take a little longer, so they can give her whatever it is they give her to help her "tolerate" the drug.
After the "particularly nasty one" is finished (a 2-hour infusion, assuming all goes "well"), she'll get an hour break, and then they'll start the "just plain nasty ones"-- one of which she'll carry home with her in the form of a "fanny pack", which she'll be attached to for the next 4 days. Each "Day 1" of every cycle will be like this-- about a 6 hour process in all. The good news about her particular treatment, is that only 1 drug needs to be "re-infused" through the cycle-- and that will only be about a 1-hour infusion, on days 8 and 15. Plus, the side effects of that one aren't as bad as the other two (allegedly-- I guess we'll "wait and see"). They're guessing that the first week of every cycle will be the rough ones for her, as far as side-effects go. If this is successful, however, there should be significant (even if only temporary) shrinkage of the masses that are giving her such a hard time in her chest and lungs. This will mean at least some ease breathing, and a relief from the constant cough.
The doctors' goal is to get in 6 "cycles" back-to-back. (About 4 months in all.) But it's really a wait-and-see type thing, whether there is time between cycles, or even if more is necessary, based on the cancer's and Leslie's reaction to the therapy. And Leslie has the ultimate say, at any given time, to continue or stop the treatment. The only way the doctors would "override" her wishes, is if she wanted to continue and they felt it was too dangerous for her to do so, or if there were no more measurable benefits to be seen from the drugs.
So today, we're absorbed with the "medical" side of things. Leslie did seem to have a certain peace about her, just before the infusion started, like I haven't seen in several days. Even a flash of "will". She's trying to sleep now, fighting off the urge to cough constantly. We're obviously apprehensive about how she's going to be feeling 24, 48, 72, (etc...) hours from now... but again, we're in "wait-and-see" mode... We'll check back in sometime this weekend to give an update on how she's feeling. Praying for the best, and preparing for the worst... (or trying to, at least)
-Tyson
OH! almost forgot... They've decided to "squeeze her in" to the schedule and make this an out-patient thing-- so no hospital stay!! Dr. Clark has already been in to check on her and prescribe the stonger meds that will be getting her through the pain, nausea, and cough these next few days. Thanks for your continued prayers and encouragement. You're definitely being used to "keep us standing upright" these days...

Chemo Starts Thursday......

2008-05-21T17:04:00.001-04:00

As an update-- Leslie will be admitted to Loyola to start her chemotherapy/ clinical study on Thursday. TJ comes home with "Gram" ("Dram", as he calls her) tomorrow. We will enjoy one last day together the best we can, prior to the chemo adventure. During her 2-day projected stay in the hospital, the doctors' plan is to find the right balance of drugs to counteract the chemo side effects, as well as her increasingly horrible cancer-related symptoms (severe/constant cough; severe pain in shoulders, back, and neck; severe shortness of breath leading to "panic attacks" and sometimes vomiting; and general discomfort).On the "natural/nutritional" front, our plan is solidifying. Much to my dismay, it's looking like an awfully "vegan" diet. No offense to my herbivorous friends out there... but y'all know how much I love my steak. :) High protein, very low-sugar, "raw" veggies-- especially carrots, spinach, kale, beets (complete with greens), and cucumbers. Yummie yummie. And some special natural supplements. This supports much of what we've found to support cancer-fighting body chemistry, via various feedback from oncologists, "alternatively-practicing" MD's & dietitians, and personal testimonials from friends and loved-ones. Via networking, we've established a new relationship with a "diet coach" that will be helping us out. We do have an MD on the line that will treat Leslie with IV and oral nutritional supplementation when we decide to stop chemotherapy, but his treatments may be detrimental if administered during the study-- so we're in a wait-and-see mode with him.On the "peace" and "will" fronts... what can I say? Today was a better day, I guess. Especially after noon-ish. (She spent the morning recovering from our big day out yesterday.) But we're still praying for that "peace". The "will" seems a little more tangible today, but we're still waiting... I'm kind of thinking we won't have a chance to truly process much of all of this on the emotional and spiritual fronts until after the chemotherapy starts to affect the cancer/ tumor. It's so hard to think straight-- or even pray that much, for that matter, beyond simply crying out for mercy-- when you can't breathe without coughing until you puke.Mixed bag of emotions tonight. Thanks for the prayers. Next time we check in, Leslie will be poisoning herself, in hopes that the bad cells die faster than the good ones.-Tyson

Progress (ion)

2008-05-19T22:08:00.001-04:00

So, we have some answered prayer tonight-- a large part of the "treatment path" we've been consideration is established. "We read you loud and clear, God." We're going with the clinical study (cutting-edge combination of drugs, but otherwise a "traditional" method of chemotherapy) at Loyola. And we can't get started quickly enough. According to the head oncologist at University of Chicago, who we met today for a second opinion, he could tell from his simple "exam" that the tumor(s) is/are progressing very rapidly-- now affecting her neck and perhaps even her right arm-- with swelling and growth. We're very scared. Leslie's in a lot of pain, discomfort-- no... agony is a better word. After carefully considering some very specific "alternative" methods over the past few days, (and very closely today), the second opinion basically has "scared her into action". No more thinking. Time to get going and do this thing. We're still piecing together the "natural/nutritional" portion of the puzzle, but based on the "leads" we're working, we will most likely have all that put to bed tomorrow, as well-- the fact that we've established our "medical" approach will make that easier, now.It was a very hard day on Leslie, (consultations and appointments kept her out of bed all day), and now she's basically passed out in bed from exertion and the aforementioned agony... with a little help from our new friend Vic(atin). It is so hard to for her to think, cry, pray, or even breathe or just BE... the way she's feeling. So I can't say, honestly, that we're "ready" for this fight. There is no "peace". To be horribly honest, there's not even enough strength to be in some way rearranged as "will". YET. All in time, we are confident. What breaths we can utter are turned Upward. And we know He's there catching the tears that fall. We're just struggling to feel it and OWN it completely.Medical- Check. Natural- (pending). Peace and Will??? Still waiting on You, Lord. Just say the word. Breathe your breath, and there will be peace. Raise a finger, and there will be strength and "will" abundant. "...how long, oh Lord..."?Tyson

Prognosis

2008-05-15T15:19:00.001-04:00

Thank God we don't rely solely on medicine. "Stage 4 Squamous Cell Carcinoma" and "managing quality of life with chemotherapy" (I've paraphrased here), are medical ways of saying... "Gee, we'll give it our best shot, but we really don't have the answer... and it doesn't look like it ends well... and to be honest, our best guess would say that it ends sooner rather than later." According to the doctors, (re-cue paraphrase mode) "...you'll be fortunate to share Christmas with Leslie. And she'll be a medical anomaly if she sees TJ off to his first day of kindergarten." So, Doc, tell me something I don't know! I'm blessed and lucky to spend ANY day with her, and if there's one thing I've learned about Leslie, medically, over the past 7+ months, it's that she's definitely an anomaly. Nothing-- since and including her "polyp removal surgery" back in October-- has resulted in anything resembling the "norm". Why should she start now?Truth be told, the medical facet in only 1/4 the battle (see "4-part equation" blog from a few days ago). It's an important facet, yes-- and therefore it was an extremely difficult visit to the Oncologist yesterday. The last 18 hours have been some of our darkest. But, we know that there are "other forces" at work here. "Though I walk through the valley of the shadow..." I've spent today trying to decipher what is the apparent path leading to Leslie's entire treatment plan-- the approach that will address her body's physical ability to fight and destroy the cancer from the inside-out. That is, the "Natural/Nutritional" facet from the aforementioned blog entry. Fortunately for us, there are many more success stories out there than that which the traditional "medical" community has been privy. We're not foregoing the "traditional" method, but we have come to believe whole-heartedly that the lack of success they have "measured" with any kind of treatment they offer is due to the fact that they only TREAT CANCER. They're not in the body-curing business. No, that's what God is in the business of, via nature, miracles, the gift of strong bodies, etc... ("The only thing that has been proven to HEAL the body is the body itself", as many an alternative medicine practitioner will tell you.) We are just praying and pouring over our options as to what is the best dietary, alternative, etc... "supplement" to what the oncologist, Dr. Clark, will be doing to the cancer in the next indefinite period of time.All that being said, we're not falling off the deep end. We're not freaking out, or moving to a commune where we'll live the rest of our lives sustained only by wheat grass and freaky love. But the medical approach alone is not the entirety of the answer, here. As they admit-- there is no answer, as far as they're concerned. And to be sure, with this "medical" feedback from the oncologists, we are forced into coming to terms with the "PEACE" portion of the equation. We are in the midst of some serious mourning, here, and will be for some time, as this will be the process through which we can come to PEACE with God's promise of eternal healing. We are angry and hurt by the prospect of Leslie leaving us at a date which we would (in our finite wisdom and futility) deem "premature". But again, we've learned through the wisdom of others-- and it has resonated in our hearts-- that this PEACE (that "no matter what happens, Leslie wins") needs to come into balance with this WILL (her ability to "fight for her life"), should cancer ever be fully overcome in her life or ours.Maybe you need to read that all again, in order to come to grips with what it is I'm saying. I know I do. The news, from a medical standpoint, is the worst it could possibly be. But it is part of God's plan, and we are not accepting it as a prescription for death. However God chooses to move, it is our desire to be united with Him in his purpose and desire, for His glory. So we're "buckling in" for a crazy ride. Thank you a million times over for your continued prayers, which we PHYSICALLY can feel. The hardest times are in the wee hours of the night/morning, where our brothers and sisters are obviously asleep. (This is where our family "abroad" can step it up!) :)Again, we continue to receive questions and offers as to how me might need help. And again, I say, PRAY. Pray for, specifically, the four "fronts" to this battle. (Medical, Natural, Will, & Peace) Don't be afraid to pray for PEACE, even in the eternal sense of healing. That is all a part of this. Fighting with all the WILL in the world is only going to end badly if we cannot also balance it with the PEACE that surpasses all understanding. We have a lot of prayer warriors out there, who are CLAIMING HEALING in the corporal sense. I would say "THANKS! KEEP IT UP!" And then also I would pose this question... "What part of God's promise are you perhaps overlooking in your prayer?" We should not fear the eternal part of God's promises. NO! We should CLAIM them!Gearing up for battle,Tyson

Baby steps...

2008-05-13T16:10:00.000-04:00

This wounded, weak and weary heart is being awakened by the prayers of God's people. He is hearing you. He is faithful and loving me more than ever. My heart is gaining strength slowly, but surely, and is preparing to do battle. Now, if my body can just cooperate.Thank you for loving me so much. You are all dear and eternal friends, even those of you I will never meet until we are with Jesus. Zephaniah 3:17 The Lord your God is with you. He is mighty to save. He takes great delight in you. He will quiet you with His love. He will rejoice over you with singing.Leslie

New Week

2008-05-12T12:58:00.000-04:00

Leslie came home yesterday afternoon. It was good for her to be in her own bed again. I must admit, it was a bittersweet thing, though, with the heaviness of this new reality on our hearts.Her family had been planning on coming up from Peoria and Indianapolis to join us here (Leslie's sister lives in nearby Wheaton, as well) for Mothers Day. It was indeed a blessing that Leslie was released ahead of schedule so we could enjoy being together with all of them. They moved the party to our house, and it made for a wonderful little homecoming party for Leslie. Again, bittersweet, but wonderful. The only ones whose countenance was not obviously affected by all that is going on were the little ones, TJ included. Most of the smiles for me that evening were brought on by cousins Max, Sam, Will, Ben, Tori, and Jonathan. And most of all, TJ. Thanks for the prayers. God is indeed either protecting him or keeping him strong through these events, or both. My mom and dad were there for the party as well, having brought up TJ from Ohio that afternoon, and, as an added bonus, our dear friend Ginny (our google blogger :)), whom TJ just adores. Again, it was a great little homecoming. I just feel that I couldn't fully enjoy it, wiped out emotionally and physically as I was. I know it meant so much to Leslie, too, although she couldn't "participate" much, with her shortness of breath, and side-splitting coughing bouts.She had a big coughing/breathing "attack" again last night between midnight and 2 am. It's so hard to witness that, in the delirium that is half-sleep, half-wakefulness. We are so susceptible to fear and defeat and all kinds of nonsense in those moments (which incidentally doesn't help Leslie to calm herself down-- something that is necessary to get through the attack). Amazingly, but not at all unpredictably, it was some out-loud and persistent prayer (in conjunction with a little more codine syrup) that seemed to finally settle her back down. She slept until 8, got up for a minute, and now is back asleep, after another minor "attack". It's hard not to be discouraged-- almost crushed-- to see her be so out of breath, so weak, after just walking to and from the bathroom, or up the stairs. "We're gonna get your side healed, and then the treatments are going to ease this lung thing a little. It's NOT going to be like this long-term, okay?" I just kept whispering in her ears between prayers last night. She nodded-- a sign I've grown to love from her, where words are few or impossible-- that what I was saying was "sinking in" and somewhat comforting. Today, the rain is gone and the sun is shining. It's a new week. TJ and I are taking a walk to the soccer park after I make breakfast. His innocence, energy, and joy are such a blessing right now. Leslie's primary job and focus, meanwhile, is to rest and get her surgical wound healed, so we can start doing battle. Her mom is here for the week to help with TJ and with Leslie's needs, and housework, etc... I called my boss and told him I'm no good to anyone, at least until we can get the pathology reports and our initial meeting with our Oncologist on Wednesday (hopefully). So we're just here... trying to breathe full and strong breaths (not just Leslie), trying to soak in as much sun as we can, trying to rest, maybe even laugh a bit. I don't plan to update unless a huge need arises, or if we get reports back ahead of schedule, etc... Otherwise, I'll probably blog a "shout-out" with an update on Wednesday.Relying on His grace and strength,Tyson

4-Part Question....

2008-05-10T16:19:00.003-04:00

Leslie's most likely coming home tomorrow. She may have an oxygen tank. We will not have "final pathology" results until sometime next week. She will not start her chemo, as it turns out, until the 19th at the earliest... (most likely). They just need to figure out WHAT we're doing as far as a treatment plan, before they just start blindly treating her. That's the update.
Emotionally, it has been the hardest 40 hours of our lives. Leslie can't cry much, because of the pain it causes her surgical wound, and it causes BIG breathing problems. I've been weeping and crying out to God for the both of us, mostly when I'm alone. Still, there are moments, such as this particular one, where your prayers are moving God to sustain us in varying levels of peace and strength.
I had an extremely encouraging talk with Leslie's dad this morning. He is a wonderful man of God, and a "survivor" in his own right-- having beaten 3 different cancers, officially, in his lifetime. We got talking about treatment-- "cure" versus "quality of life" models; the spiritual and emotional journeys involved; etc... He defined very concisely what we're discovering about the path that lies before us. There are 4 parts to the definition of-- and equation that measures the result of-- "SUCCESSFUL CANCER TREATMENT". These are the 4 "facets" you can all be praying for, as each poses a unique challenge, and a unique opportunity for God to be glorified in this:
1. MEDICAL- No duh. This is the chemo, radiation, and surgery part. The objective here is more of an "additive" approach-- "what can we do or give to Leslie to best destroy or weaken or reverse the momentum of her cancer?" As I mentioned, doctors are still trying to determine the best route to take. They won't know for certain until the pathology, CAT and PET scans all come together. If we had only the "medical" outlook to hold to, in heart-wrenching honesty, we'd be pretty close to defeated already. No "official" pathology has come back, but the words "no known medical cure" have been used or paraphrased for what they removed from her in surgery. It is aggressive, in her blood stream, and most likely NOT contained in just her lungs-- that's what the CAT and PET scans will confirm. This does NOT mean that people don't BEAT this kind of cancer once it progresses to this level-- they just don't know WHY the relatively few people that beat it actually DO. This simply means, by the docs' own admission, all they can do is weaken the cancer, and hope or "leave to chance" that "other factors" (anything from "Nature" to "God" to "Leslie's own body" or a combination thereof) can work to actually defeat it. But our darkest fears are confirmed, there is no medicine that has been proven to "cure" this cancer. Cue: 3 other parts to the equation.
2. NUTRITION/NATURE- We know that Leslie is "Beautifully and wonderfully made" by her Abba God. We also know that God gives us, in nature, all that our bodies need to sustain themselves, heal themselves, strengthen themselves, and so-on. We also know that "nature" gives us cancer-- which nature alone does not cure (which is why we do the chemo thing). However, by the doctors' own admission (once again), it's Leslie's natural body that's going to have to do the fighting necessary to win this war. So we'll need to seek help on the nutritional side (yes, even bordering on the "alternative" or "natural" side of things), to prepare and help Leslie's body to detect, fight, and defeat the cancer cells. We need to put her NATURAL (non-drug) self in the best position to win the war, one battle at a time.
3. WILL- "I'm a survivor", she sang to me again this morning. (Yes, we're still managing to smile these days.) "She's a warrior. My hero." I've told so many people. "She's a little spitfire," her big brother says. Up to now, all of our prayers have been CLAIMING victory over this-- God's total healing, physically. We have been full of "WILL", as we should be-- it hasn't been tested yet with the discouragement that chemotherapy will certainly bring. Still, we are preparing to maintain that will, with your added support and prayers, by the Grace of God. And there have been many scientific/ medical studies done that support the correllation between this "will" and somebody overcoming cancer.
4. PEACE- (This is the hard one, just to warn you.) In Leslie's dad's words, "If she's ever going to beat this, she's going to have to come to a place where she KNOWS that she has already WON-- regardless of what the medical or physical outcome is." Yes, that is to suggest that Leslie's body may not "survive" this cancer, but regardless, she can claim victory. "Mere" victory in only the eternal sense (as if there is anything trivial about that!) is not a prospect we were prepared to address, coming to the hospital this trip. We were just trying to figure out this "infection" in her lungs. Indeed, the path you can see me tiptoeing down here is not one with which we are in any way comfortable, prepared for, or steadfast. But, it's a process we're beginning to address. "What if...?" There is a mourning process that needs to go on here, before we can ever settle into this PEACE thing, regardless of the physical outcome. And we are weeping, indeed. We are not throwing in the towel-- our WILL does not allow it (nor does NATURE, or even MEDICINE, at this point). But we are simply opening up the door of consideration of the certainty of eternal healing, in conjunction with our hope and drive for the physical healing. Indeed, at some time in every life, this becomes a reality. It is a part of life, and it is healthy for a family and a marriage to address it at some point. This is just a bit sooner than we had intended to start addressing such things. We've only ever known that unrealistic "young and invincible" life stage. But there is so much that Leslie needs to come to peace with-- the idea of eternal healing; God's provision for TJ and me in her potential absence; etc... Indeed, these are things I need to come to peace with, should she outlive me. But faced with the prospect of her health, it is a very difficult task for Leslie, and for us to witness. And it is a process which is all the more necessary, in order for Leslie to "beat" cancer physically and/or eternally.
So there's where you can start doing battle in the prayer realm. All four facets need to come together for us to win here, and we don't have strength to do ANY of them on our own (except maybe the WILL one). There are choices to be made, tears to be shed, pain and suffering to endure both physically and emotionally... and in it all GOD TO BE GLORIFIED.
Whenever I'm finding myself being dragged down the drain by dwelling on coming to grips with the "PEACE" part of all this, I simply turn to God and give thanks for all that I love about Leslie-- all that He's blessed me with in her. And my spirits are lifted in the process. In thanksgiving and worship, there is peace-- a truth I've dwelt within for the last 3 years of leading worship at my church. I started a song this morning on my route to the hospital-- it came to me in the midst the shedding of some violent tears. I recorded it, melody and all, on the voice record function on my phone...

There is nothing that befalls us
That is anything but
An opportunity
To glorify
You LORD.
Our hope is that He brings Himself glory by chosing to move to physically heal Leslie, ridding her body of cancer. Ironic, isn't it, that part of that process, should He so move, will include our coming to "peace" with the thought of Him taking her home? What an awesome miracle and testimony it will be, eh? Tyson

On "Why"

2008-05-09T12:45:00.003-04:00

I had a wonderful email exchange this morning from a dear friend of mine who, like many of you, is witnessing this from afar-- across a lot of geography. I am sympathetic to the hopelessness you must feel, not being able to be here and just hug and love on Leslie, to physically HELP in some way. I'm truly sorry that many of you (including our dear families) are in such a place, but really, that's the only place it is possible for you to be right now, so we gladly accept your prayers and tears from afar.
Anyway, my friend was just crushed and wrote a beautiful and authentic note of encouragement. Expounding on one of her thoughts, I started typing, and here's what ended up on my screen-- as an encouragement to all of us. This is in response to the encouragement that "God will not give you more than you can handle"-- words of encouragement we have heard from so many over the past months:
------------------
The scripture that talks about God not giving you more than you can handle is actually and contextually in regards to "temptation"... I Cor. 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it." (BTW-- I didn't know that reference/ verbatim off the top of my head... thank you http://www.msplinks.com/MDFodHRwOi8vd3d3LmJpYmxlZ2F0ZXdheS5vcmc=, a virtual "GoogleBible" of sorts.)
I only mention [this] point... because that's an encouragement we've received from a lot of people, and, while we feel God has us where He has us for a purpose and reason, one of the messages we want to hold firm to is the clarification of this idea that "God will not give you more than you can handle". It's a semantical difference perhaps, and not totally contrary to the spirit of your original words of encouragement... but here goes:
To say God will not allow us to suffer more than we can handle puts undue faith and impetus on our own strength. Indeed, the last 7 months have given us WAY more than we can handle. We would have no strength, no hope, and perhaps Leslie would have lost her life altogether by now, (if not her faith), if not for the strength of the Almighty God, through the grace of His Son Jesus, as administered within the compassionate counsel of His Holy Spirit. I just can't give myself that much credit. We've been crushed. Broken to pieces. Our weakness has been exposed. We cannot stand any longer. Brought to the point that our very breath has been taken from us... if not for the sustanance of our Father. "But in [your] weakness, [I AM] made strong." He says. "Come to me, you who are weary and heavily laiden, and I will give you rest... But take my yoke upon you. ['Bear my cross'.] For my yoke is easy and my burden is light... And you will be my people. And I will be your God."
Therein lies the purpose and meaning of suffering, the best I can tell-- to bring even more glory to Him and His Strength and thanks for His interaction in our lives. (Isn't that the real purpose of life in general, when you get down to it?)
---------------------------------
There's your sermon for the day. And no, Ronn, I'm not coming after your job. The "update" is that Leslie and I are currently separated, due to "Surgical Recovery Room" policies, that they're apparently not as willing to overlook this morning. I can only see her for "a few minutes, every couple of hours". That was a hard blow to take this morning. But overall, there is a strong "vibe" of strength and peace about Leslie right now. That IS the power of God heeding your prayers. That IS what will sustain us amidst the path that lies before us.
She will be admitted to a "normal" room, as she stabilized overnight beyond the point of being admitted to the ICU. (They never DID get her a room-- she spent the night in recovery, which you've probably pieced together through context.) They're not expecting to have a full "prognosis" until late next week, or even the week after. They want her body to recover from this surgery a little before they start injecting her with the necessary PET-scan-related isotopes, which will be necessary to determine the location(s) of any other cancer cells or masses. After that, they'll be able to lay out a full plan. In the meantime, we're getting ready, in Leslie's words, to "fight like hell".
Which brings us to a real-time prayer request, in the short-term: God, show us the treatment You want to use to do Your work. Are we in the right hospital? Is there an alternative route? And give whatever doc's to whom You lead us the wisdom and insight, like only You can, in order to do Your work.
Please understand, we're not asking for suggestions. We have plenty of "leads" we're already considering, including some that Dr. Zender is discussing with me. We just need His wisdom right now to make the right decision.
Struck down but not destroyed...
Tyson

Thursday 5/8

2008-05-08T21:51:00.000-04:00

Leslie is sleeping in Recovery. I'm with her. She's just as they said she'd be after this procedure-- a bit of pain in her chest where they opened her up. Week. Tired.
And crushed.
They gave us the news tonight that when they opened her up, they discovered that there is no "infection" in her lungs. The cancer that was in her head has spread to the outsided lining of her lungs, which is "squeezing" her lungs, giving her "pneumonia"-like symptoms.
I have never cried like I did tonight when I was alone after consulting with the surgeon.
Tonight, she recovers from the procedure. Sunday or Monday they will send her home with a new PICC line through which her chemotherapy will be administered, which is certain to be coupled with some sort of Radiation as well. Those are basically the facts as I can reiterate at this time.
There are a lot of "what-if's" and "what-then's", and "chances" and stuff that I'd rather not go into until they have some more results in the morning. They need to scan and scope her whole body now. What she has passes through the blood stream, and the docs' next foci will be her liver, bones, and endocrine system. Once they determine the extent that the cancer has spread (over the next couple of days), they will better know exactly how they will be treating it, what kind of "outlook" God has to overcome in order to heal her. (Not that God has much to worry about. He's fully able, as we still trust, know, and maintain faith.)
Tonight before being reunited with my girl, I had a real "come-to-Jesus" meeting with God. Pun intended. I finally screamed at Him and asked "WHY?". But, as I shared with Leslie, who's feeling quite let down by her Father tonight, (as am I), I have a HUGE sense of HOPE and TRUST that God WILL move and heal her. It's just going to be a much longer and harder road than we had hoped or asked for. I just can't stand the thought right now of what I'm about to stand by and witness her going through in the hereto unquantified amount of time that lies before us.
Oh, God, You have shown your infinite mercy through your Son Jesus. I'm begging you now, show a more finite version of that mercy now. Heal your servant. Show Yourself, Jehova Rophe. Spirit, move and settle on this family in Your peace, as Rophe does His work.
By the grace of Christ. Amen........................Tyson

Loss for words...speechless......

2008-05-08T21:28:00.003-04:00

Surgery results have made for heavy hearts. Please pray without ceasing.
ginny

**UPDATE - 12:45PM

2008-05-07T15:32:00.000-04:00

So the doctor just stopped by to say that there will be no tests today. Tomorrow for sure. The rigid bronch and some other procedure, also most likely "surgical" in nature, that they will describe later, apparently. At least now Leslie can eat...
Tyson

Long Rainy Day

2008-05-07T12:48:00.001-04:00

Yesterday was just like today, only sunny outside. Today is a perfect day for sleeping. Leslie's trying. She's been relatively more comfortable than she was at home for the aforementioned reasons. There's been virtually nothing to update. They STILL have not done the "Rigid Bronch", although they had her fasting all day yesterday in preparation. Miscommunication between the resident and the surgery staff, apparently... the Cardio/Pulmonary department never intended to squeeze her in yesterday, but forgot to inform the surgery department of the fact, so the General Doc had no choice but to assume she was still supposed to be fasting. So she was very hungry all day. Finally at 4:30, her General Doc realized that there was no use in the fasting, and they brought her some food. Now it is noon on Wednesday, and she is fasting again. (Which makes me wonder... do prayers uttered while fasting due to doctors' orders still count as "prayer and fasting" in God's eyes?) Today it IS looking like they'll get her in for the surgery/ procedure, but it's just getting pretty monotonous. She's still coughing. She threw up this morning. They brought in the Zofran (nausea med). More Codine. And so-on. She's just trying to sleep-- she had some catching up to do. We can't talk. It makes her cough more. Just waiting for them to decide it's time for the Rigid Bronch. As the afternoon hours approach, I'm trying to figure out how to control my anger if they don't get her in today. They say if she was coughing up blood or something, they'd probably have squeezed her in by now. Trying to abide in peace and patience...
I will say, on the positive side, the care has been excellent on the 6th floor. The Tech's and Nurses are wonderful, and Leslie feels well cared for. We're just eager to get on with this already...
-Tyson

"Room With a View"

2008-05-05T20:52:00.001-04:00

The view is beautiful from Leslie's 6th floor hospital room. Quiet so far, too. No roommate, for now, and I'm doing what I can to keep it that way. I comically played the "frequent stayer" card (like how you can upgrade to first class using frequent flier miles). More seriously, I tried the "she has an unknown respiratory illness and a bad cough. Gee, I'd sure hate to be her roommate" move. We'll see how it plays out. So far it's gotten her a "free upgrade" to the bed with the window and a little more space. We'll take what we can get.Dr. Dilling squeezed her in to his schedule today at noon upon my "cry for help", to which I alluded in this morning's early blog entry. In fact, all 3 specialists I CC'd responded immediately and personally, all offering to accommodate her however they could. Dilling had "dibs", since, as best we can tell, this is a pulmonary issue at this point. As soon as he saw her at the satellite office nearer to us in Oakbrook, he had her admitted at the main hospital in Maywood-- our second home.Her chest X-rays have taken a turn for the worse. "Blossoming" is the word the doctor used to describe the progression of the spots on her lungs. Her breathing is much more troubled-- the coughing now to a point that her whole body is aching. She'd lost over 5 lbs since last week's visit. Upon arriving at the main hospital, they had to bring her to her room in a wheelchair since she was physically unable to do so herself. Perhaps the timing of this symptomatic turn of events was simply coincidental with the new drugs. We just don't know. Regardless, the doc's feel they have "waited this out" long enough and now it's time to get more proactive in getting her diagnosed and treated. She's getting worse, not better.So here we are. There was this strange mix of discouragement and relief as we drove here today. She is obviously bummed about being back in the hospital. But her anxiety has been relieved a little. At least we're DOING something about this now. And the on-site availability of the doc's, nurses, and "drug buffet" to keep her comfortable in the meantime has a calming effect as well. Tonight they will do a CT scan and some blood work to see what they can find. Likely they will need to do something called a "rigid bronchoscopy" which is a more involved version of the outpatient procedure she had last week, which will involve full/general anaesthesia. Anyway. We're here until Thursday at minimum. Doing better, emotionally, feeling that we're taking a step toward some sort of "closure", trying to "get comfortable". We'll keep you updated as we hear any results or get some hard data worth sharing. We appreciate the ongoing persistence of your prayers and encouragement against the anxiety and emotion of all this. Those prayers have been answered today. Thank you, loving Father. Tyson

Spread the Word - Asking for Prayer

2008-05-05T17:14:00.005-04:00

Prayer Warriors.... Thank you for following this journey and being faithful in your prayers.
Leslie was admitted into the hospital today. The pneumonia has left her body very weak and is taking its toll on her physically, emotionally and spiritually.
We are asking the you spread the word and lift her up in prayer - ask for healing, direction for the medical team, peace, and comfort for her, Tyson and family.
Blessings to you ~ginny

Calling all prayer warriors...

2008-05-05T09:46:00.000-04:00

Not that any of you have slacked in the least. But we had (or are having) a very rough night, starting late yesterday afternoon. The meds the ID doc's have prescribed turn out to have some pretty crazy side effects, expanding across both physical and psychological/emotional gamuts. We're calling Loyola as soon as the doors open in the morning to see how necessary this is... I'm really hoping we don't have to do this for another 30 hours before our next appointments.Leslie just needs prayer for peace and comfort. Physically, emotionally, spiritually. We're both feeling like our prayers are getting lost in a giant void right now. Falling on deaf ears. Feeling that way, at least. We "KNOW" otherwise. But we could still use the strength of your collective prayers.Tyson

Antibiotic Darts

2008-05-04T17:46:00.000-04:00

The ID doc's called today. The Head Honcho this time... Dr. Balmares. He's gone ahead and prescribed 2 oral antibiotics. He was quick to admit that they still really don't know what's causing the pneumonia, as the cultures and biopsies are still turning up clear. So they're making an educated guess as to which antibiotics will work-- incidentally, both are drugs she's taken at some point over the past 2-3 months. They're basically just throwing darts at a dart board at this point, hoping to hit a bulls-eye. Leslie's cough has persisted. She's not coughing up blood, and there is still no fever. But she is losing much sleep and it is taking its toll on her body, mind, and spirit. She's basically bed-ridden. It's all she can do to go down the stairs from our room and back up again.Tuesday we have appointments with Neurosurgery (Prabhu) and the Pulmonology (Dilling). Basically, they're to the point now that if these antibiotics don't start working, and if she doesn't start improving soon, they'll have to start talking about re-admitting her into the hospital... A surgical lung scope, more tests, etc... and just trying to get her well one way or another, because she's not appearing to "just beat this on her own", the way they had expected.That's all today. I'm going to go work out and blow off some steam. Or punch a hole in a wall. Or something.-Tyson

Whew!!!

2008-04-29T19:36:00.002-04:00

**UPDATE-TUESDAY MORNING** Dr. Zender's office just called to say the biopsies from the bronchoscopy all came back "negative" (non-cancerous). Still not totally conclusive, to be fair, as they could not get all the way to the bottom of one of the lungs, but VERY encouraging, nonetheless. Even more likely that this is NOT cancer. (And as a side-note, Leslie had one of the best nights of sleep she's had in a week last night. Only one or two bad coughing "spells". WHEW!!! Peace is coming much more easily today. Thanks for your prayers. Tyson

New Hope

2008-04-28T21:27:00.001-04:00

The basic report after today's appointment is that there isn't much to report. So far nothing has shown up in the culture's from Friday. No tests have come back positive. Because this is something that came on relatively quickly, Dr. Dilling is still hoping that it is some kind of infection. He is really hoping that I will be able to fight it off on my own, or maybe need another antibiotic to help me if it doesn't resolve.Once again we will be watching it play out for the next week. I will get another chest x-ray next week to see if there are any changes. Today Dr. Dilling said my lungs sounded a little better. As long as I don't get any worse, fevers or major changes, then we will see if my body can fight it off. I am encouraged tonight that possibly my body isn't completely falling apart. My coughing hasn't been quite as violent today. The nights have been really rough so I find myself exhausted all day long. But my spirits have been somewhat lifted. Thank you for your continued support and encouragement. We are worn out and are feeling as helpless as the rest of you! Please know that your prayers are more needed right now than anything else. If we think of anything we need we will let you know Leslie

Scoped.....

2008-04-25T21:03:00.001-04:00

We've received a lot of inquiries today, so I thought I'd give a quick update.Leslie is sleeping off the sedatives. I'm guessing she'll be out for the night. The bronchoscopy (as we learned it is called) was an unpleasant experience. A bit of info we learned upon arrival is that part of the process includes the full flushing of the lungs with water. That along with the general irritation of being poked and probed in the lining of her air passages will have her coughing even more for the next day or so, say the doc's. Dr. Dilling didn't encounter any "surprises" in the procedure, other than noting how badly inflamed the lining of her air passages were. They weren't able to go all the way "down" into the depths of one lung, (her right one seems to be the bigger problem) as they had hoped. So they had to "take what they could get". He's hoping to have some sort of results back by our appointment with him Monday afternoon. If he does not, and if she still isn't getting better by the end of next week, we'll be introduced to yet ANOTHER doctor, who will have to do a DIFFERENT scoping surgical procedure, which will most likely not be an out-patient thing. They're just that "stumped"... It's not growing bacterial cultures. It doesn't look like it's viral on the scans. It's not acting like it's cancer. And it's not likely to be fungal. But until they figure out WHAT the &!&*^! it is (pardon my frustration), they can't rule anything out. Pray that what they got today gives them the information they need to make my girl all better. Hopefully some light will be shed on the topic on Monday.In the meantime, I'm praying for miraculous healing (again), that she gets over this thing before they can even really determine what it is. tyson

How long can you go?

2008-04-24T22:39:00.000-04:00

I'm taking Leslie in for a "bronchioscan" or something like that tomorrow. They sedate her and stick a camera and other probing devices down her throat and into her lungs. The just haven't been able to figure out WHAT this is. That's scary to us. They called again today to tell us all tests have been inconclusive. It's never a good thing when a doctor says, "...so your other 4 doctors and I are all kind of scratching our heads here. We don't know WHAT this could be..." Meanwhile, her violent cough produces more blood and reduces much sleep. It's taking its toll on her. She's not looking well again.They removed her PICC, replaced it with an IV, as you know. And yesterday they removed her IV as well, as it was causing her problems. So she's basically off all her antibiotics, by default, a few days ahead of schedule... not that the Doc's are saying it's a good thing in these circumstances. Nonetheless, it was a nice quiet little celebration last night, when she looked at me and realized, as I was getting ready to put TJ to bed, "I don't have to go get hooked up to anything! I feel so... FREE!"Anyway. We need your prayer tonight. The fear and anxiety are strong. We're refusing to let our minds play the "what-if" game while the doctors go on scratching their proverbial heads... And tomorrow-- for wisdom and even revelation for the doctors-- that they can finally get this diagnosed, treated, and CURED. (That is, that GOD uses them to do His work.) :)That's all we've got for now. We'll let you know when there are hard facts. In the meantime, we're struggling to find peace between coughing spells, here in this still frame, beneath the Limbo stick. Tyson

Enough is Enough..

2008-04-22T21:10:00.001-04:00

Today I added another doctor to my list of specialists. I went to see Dr. Dilling, Pulmonologist. This makes 6 if you count the 2 Infectious Disease doctors who have been dealing with my case. Anyway, Dr. Dilling is another compassionate, very personable, and knowledgeable doc who went out of his way to see me on very short notice. Dr. Zender spoke with him yesterday, and after looking at my CT of my lungs he wanted to see me this week. He really thinks that I am dealing with a new infection that may or may not have been caused by the PICC line. He showed me the CT scan results, and there were many "areas of concern" in both lungs, but primarily in my right lung. After speaking with ID (Infectious Disease), they decided to take out my PICC today and replace it with an IV to finish out my week of antibiotics. This will be much more of a pain, physically and figuratively. Fortunately it will only be through Saturday......hopefully. (I've learned to hope for the best but expect the worst.) They took more blood cultures today, in addition to the ones I had taken yesterday. I am supposed to see Dr. Dilling again next Monday for a follow up (on a day that he only sees lung transplant patients, he is working me into the schedule again!). I may have to get a scope done of my lungs if the cultures are inconclusive. Dr. Dilling reassured me several times today that he really doesn't think this is cancer. He doesn't want us worrying about that. Of course they can't rule anything out completely until they can put their fingers on what I have for sure. It may be an infection in my bloodstream as well. In the meantime I am continuing to try home remedies/natural concoctions and over the counter meds to try to relieve my symptoms. My body is so sore and tired from all the coughing, and I still am not breathing well.To be really honest, I am ticked. Tired. Really, really tired. More emotionally than even physically, and believe me, physically I am tired. I'm crawling back into that oh-too-familiar cave to either hide or experience some kind of mental vacation. My brain is in a fog, and I'm just going through the motions right now not even trying to figure out where all this might take me. At the end of every surgery and treatment there seems to be another curve. I'm putting the car on auto pilot while I check out for a while. God, You work this one out and let me know when it's over. leslie

Progress and pneumonia..

2008-04-18T13:10:00.000-04:00

So we're pretty sure that the scary stuff that showed up on Leslie's lung scans is some type of pneumonia. Most likely viral. Or perhaps something even caused by some freaky fungus that can occur with someone who's been pumped full with as many antibiotics as she has been. The doctors are still trying to put their collective finger on it. In the meantime, they seem to be expecting this thing just to go away... (which would prove after the fact that it was viral)
The PROGRESS is that Leslie met with the Infectious Disease doc's yesterday, regarding her bone infection, PICC line, antibiotics, etc... And they said that as long as her blood work continues this week and next the way they have been progressing so far, she should be done with her IV med's at the end of next week! WOO HOO! She'll be able to take the PICC line out, and we'll take one step closer to "moving on" with life. PRAISE GOD!
This good news (and the whole "the cancer isn't spreading to your lungs" thing), have been a much needed lift to her spirits, as she continues to hack and cough her way through these days. She's just miserable. This morning she almost felt like her lungs were feeling better, but she ached all over and her head hurt-- much like normal side effects of a nasty virus. She's just trying to learn what "being sick" feels like, now that she doesn't have any sinus to get stuffy or drip or whatever. Everything's different. And a different kind of uncomfortable, at that.
Anyway, not to be such a downer, but in the short-term, she's feeling pretty miserable, so we appreciate prayers for the healing of this virus or fungus or whatever it is. In the bigger picture, however, it has been a good week-- with good news of hope and healing. So send along your thanks with those prayers for comfort, please!
If it is viral, Leslie should be feeling better very soon-- a couple days maybe. If she's still this bad on Monday, she'll have to go back in to see the doc's. We'll keep you updated. Thanks so much for your support and prayers!Tyson

Whew

2008-04-15T22:46:00.000-04:00

After an almost 8 hour visit I am finally home from the ER. I am exhausted, still coughing my brains out, and having trouble breathing.....BUT I DO NOT HAVE CANCER!!!!!!!!! OR BLOOD CLOTS!!!!!!!!!The ER Dr.'s explanation of my CT scan results was as "hazy" as he said my lungs looked. He said that it didn't appear to be pneumonia. There could be some infection or it could be a virus. Hmmm. So why would I have more infection when I'm already on very high doses of antibiotics?! Hmmm. "Just keep using your inhaler for your cough." But, it's not working AT ALL! Hmmm. "Call Dr. Zender tomorrow to follow up." Thanks, you bet I will! Sorry, I just can't stand the ER! Thank God for good friends who keep you company and help those long hours to pass a little more quickly.Thank you to all who were praying today. It's still a little scary to not be able to breathe well, but to say we feel relieved tonight would be the understatement of the century! We just had a very intense review of how quickly life can change and how little control we have. You would think we would not have needed the reminder quite this soon. Tyson always was a little slow....I'm KIDDING, honey! God apparently needs to hit ME over the head daily, preferably not in the forehead area, to remind me of how I need to rely on Him daily. Regardless of how I feel, sick or healthy.I need to go and collapse onto the couch. I'm not sure I am making much sense. I'm just way too tired to be trying to write. We will keep you updated as we talk with Zender (hopefully tomorrow) and the Infectious Disease doctors on Thursday. Please be praying that whatever is in my lungs will go away soon. And pray that I can stop these meds by the end of next week when my 6 weeks is over. And pray that we will maintain trust in our God no matter what happens from one day to the next.We love and appreciate you all!!!! leslie

Another opportunity....

2008-04-14T22:02:00.001-04:00

We'd just been struggling with the thought that-- since God has increased Leslie's (our) strength over the past few weeks-- we seem to be "standing by our own strength" lately... like a baby wandering from the safe strength of her daddy's arms as she learns to walk. But not exactly like that. You see, it had been our desire to STAY right there-- even as we anticipated Leslie's complete healing and increased strength-- in our Father's grasp, relying on him on a day-by-day basis, as He's taught us over the past 6+ months. And it's been a struggle to keep ourselves "there", as we grow physically stronger, day by day. It's not easy to rely on Him when we feel we can keep it together all by "mineself" as TJ would say.
Well, tonight, it's easier.
Over the past week or so, Leslie has developed a cough. It started as a mild cough-- just a bit of the virus that has been going around, we were certain-- you know, changing of the seasons... But the tightness in her chest has grown more and more uncomfortable, the cough more severe. Probably still just a virus, right?
Almost on a whim, after discussing it with Dr. Zender and Dr. Millar (our primary care/ family physician), Leslie went in for a chest X-ray today. Tonight, upon reviewing the results, the doctors are in agreement that Leslie needs to go in for a CT scan tomorrow or Wednesday. The X-ray today showed some troubling areas in her lungs... "areas of concern"... (You know where our minds are going with those words.)
"...probably just a virus..." "...swollen lymph node in your chest..." "...maybe even pneumonia or something..." Leslie only remembers fragments of the conversation. (I wasn't there-- I'm in Arkansas on business through Wednesday this week. Great time to "get back into the work mode".) But basically, yes, they're having her come into Loyola for CT scan of her lungs, on the outside chance this is something more. The kind of cancer Leslie had in her sinuses has been known commonly to spread to the lungs. We remember that from before.(They didn't remind us tonight. They didn't have to.)
We're hoping we wake up 3 weeks from now and look back on this entry and laugh at our hypersensitivity and foolishness, and our newly acquired knack for "assuming the worst" when it comes to Leslie's health issues (as "justifiable" as such nonsense may be, considering...). We're hoping this is just her body's new interpretation of the common cold-- sinus drainage-free. (indeed, SINUS-free.)
But tonight, we're almost paralyzed with fear. Numb is perhaps the better word. I'm staring at the screen right now (Leslie requested I do the typing tonight as we ask you all for prayer, if you're all still out there...), not knowing what else to add. It would just make so much more sense tonight, I'm sure, if I was there, back at home with her. I'd know just what to say. Just what to pray. Just how to make her laugh and so-on. Just so we could get through the night and maybe the next day or so until we hear the relieving news that all is well. But tonight... the miles and nervous anticipation seem to be too much through which to hear that calming and familiar Voice of Peace. Still... all we can do, with this distance and fear between us, is to throw our arms out in desperation (as viable or foolish as it may turn out to be) to be saved again by our Father's gracious and capable arms.
We covet your prayers tonight. tyson

Spring IS here!

2008-04-04T22:52:00.000-04:00

How appropriate that as the weather is finally changing to more sunshine and a little more warmth, our household is beginning to jump back to life as well. It occurred to me today that we are actually living and not merely surviving! It feels good. God is certainly good. This week was our first week trying to get back to "real life". Tyson worked full time. No grandmas came to bail me out of my duties. They would have if I would not have insisted that "I want to do it mine self" (in TJ’s words). Now I would not say our life is exactly "normal" as of yet, whatever that really means anyway. I still am hooked up to an IV bag about 3 hours a day. A home nurse comes in once a week to do a check up and take labs. I still can’t get through a day without napping, although the naps are getting shorter. And we still haven’t had to cook for ourselves. However, we are doing more living in between all of those things than we have done in a very long time.By midweek I began to get really worn out with this full time mom thing. I am way out of shape! Tyson was gone morning until night for the first three days of the week, actually gone overnight for one of those nights. (Maybe a bad week to start doing it on my own again.) Wednesday was one of those days when all I could see was everything I wanted to clean and organize. My closets and every piece of dirt was screaming at me as I walked by, but TJ seemed to be screaming even louder that day. He was like a tornado the entire day, dumping out his toys and then not playing with them. The sun was shining, but instead of taking him outside, I tried to clean around him and make him clean up after himself. I think I apologized to him at least twice for losing my patience. The day was a complete failure. I didn’t like myself at the end of the day for who I was being. And TJ didn’t have that much fun either.I share that because at the end of the day I was struck by this thought. How quickly we can go back to old habits when we have even the slightest bit of our own strength. For months I have had no choice but to turn to God daily, sometimes several times a day, for strength to get through each moment. And even in the darkest and roughest of times I was amazed at the peace that I had. I kept my eyes looking up. But give me a little strength of my own, and already I forget to rely on Him! I don’t have the patience I need on my own. I certainly don’t want to focus more on my house than on my child and husband!! The rest of the week I realized that for the first time in weeks or even months I found myself struggling with thoughts of fear and worry!! Something is wrong with this picture.Isaiah 26: 3-4 You will keep in perfect peace him whose mind is steadfast, because he trusts in You. Trust in the Lord forever, for the Lord, the Lord, is the Rock eternal.I have not had a steadfast mind this week, I will admit. It is sad to realize what a slow learner I am, but I am thankful that God has way more patience with me than I have with my own child. I guess I will have a lifetime to grow mine, thanks to His healing power. I will have a lifetime to learn to keep my eyes looking up in the good times as well as the bad. And when I find my mind letting worrisome thoughts creep in, I will take them captive and look to my Lord for truth. Matthew 6:27 "Who of you by worrying can add a single hour to his life?" Leslie

No news is good noews...

2008-03-28T21:06:00.001-04:00

There really isn’t anything to report about the check up yesterday with Vandevender. He hadn’t looked at the blood work. He and Prabhu are going more by looks than anything else apparently. I got my stitches out, thank God. He said I am looking great. In fact, he said he is afraid my forehead will be more slanted or a bit concave than he had hoped once the swelling goes down. I think that would be easier to hide than a big goose egg on the side of my head, but I don’t know. He is really hoping that with just some minor "tweeking" in the months to come (a little lift here and some smoothing there), maybe we could get by with not getting a prosthetic. The percentage of my body accepting it goes down because of the radiation. I can’t imagine not ever having a forehead again, but we shall see. Right now I am just trying to let healing take its course and focus on other things. Easier said than done!I am sure I have more to say, but I need to go take more meds and take a nap before TJ gets too far into his and wakes up before I am ready!
Leslie

Tuesday Check-Up

2008-03-25T21:18:00.000-04:00

Quick update today is all positive. We were concerned about some bleeding that Leslie had been experiencing along her incision(s). As well as some sore spots on the bridge of her nose and temples, where she still has bone, where the infection had started to spread before this last surgery.Dr. Prabhu put our minds at ease, though. The bleeding is relatively normal, and he is not at all concerned, especially after seeing how well she’s doing. The incisions are healing wonderfully. She’s starting to gain some of her strength and weight back, her color’s coming back to her face (and life to her eyes), her appetite is returning, her energy’s coming back, and so-on. As I type, she’s taking a long nap, which she still requires every afternoon. And it’s still quite a chore to get ready to go out, trying to look as "normal" as possible-- something she’ll struggle with for the next several months no doubt. But, this is the best she’s felt in months, and the incisions are finally healing the way they should. And every day seems to get a little bit better. We won’t be leaving for any vacations or road-trips for a couple months (Prabhu says he’d like to "keep her close" for a bit, yet, and her medication schedule makes it difficult to consider anything to the contrary), but-- while this is far from our ideal lifestyle-- this is manageable. Understatement. This is wonderful, just to be enjoying life again-- and just in time for spring!They’re not coming to take her blood work until tomorrow, now. So Dr. Vandevender will review that stuff with us on Thursday. But so far so good! Thanks for the continued prayers! Tyson

Easter

2008-03-23T15:24:00.000-04:00

I’m kind of still buzzing from Easter service this morning. Leslie and TJ are asleep-- afternoon nap time. She made it to church today, with her mom and dad here this weekend to help her get TJ around this morning. It was a beautiful sight to look into the congregation to see her and TJ there as we began to worship. As if I needed more adrenaline pouring through my veins, in reflection of what this day represents to our faith. It was all I could do to stay in my shoes. Praise God! It was an awesome morning.We recognize that we’ve been "quieter" this week, as far as the blogging goes. (Sorry to make some of you "worry") :) It’s been a wonderful little daily adventure... learning the routine. The administration of her drugs, the scheduling, keeping TJ occupied (and trying to keep up with him), just getting around and "doing the day". And RESTING. Much catching up of sleep was needed, and the tag-team efforts of our mothers staying with us was exactly what we needed to enable us to do just that. Anyway, all that to say, neither of us felt "up to" the reflection, nor did either of us have the energy to concentrate on a computer keyboard for long enough to give the frequent updates. Thank you all for all your offers to pick up groceries, watch TJ, etc... For your prayers, notes, and thoughtful messages. We’re just trying to learn how to be a "family again", (as if the events of the past months could stop us!) and we’d might as well get back to finding that "equilibrium" of managing the daily adventures of life sooner, rather than later.We have 2 doc’s appointments next week. Tuesday with Dr. Prabhu, when Leslie should have the majority of her stitches removed, and we get to hear the results of the blood scan(s) since her surgery-- to get the official word of how successful they were, and to determine the effectiveness of her new antibiotic regimen. And on Thursday we see Vandevender, so he can reflect on this masterpiece that is Leslie’s forehead-- give us the 2-week review on how he see things going, how they went, and "where we go from here" (rough time frame on when we can think about a prosthesis, for instance?)... Other than that, I’m going to try to get back into a quasi-normal work schedule, having tested the depth of my boss’s grace and "patience" far enough, by now. (The joke around the office is that he has so much patience-- he’s just saving it up, never choosing to use it.) (But seriously, he’s been wonderful through this whole thing, not even allowing me to feel guilty for missing so much work. And what’s more... not firing me.) :)Leslie’s mom will be back in the middle of the week to help her with TJ as she gets back on her feet, getting her legs beneath her to again fully tackle the daily marathon of being a full-time mommy. We appreciate your prayers for the aforementioned hurdles, for the hope of wonderful news next week regarding blood tests, and psychologically for Leslie. Each day will be full of burdens... to A) get up the courage and strength to get up and do the day-- even perhaps leave the house, and to B) just get READY to leave the house, do the day, etc... in consideration of the preparation all that takes, with scheduling around medication infusions, dealing with doing her hair, getting "dressed", etc... (Getting dressed involves way more than deciding whether her jeans go with those shoes, as you can imagine.) As Dr. Zender said, the most difficult part of the next 3-6 months will be dealing with what she has to deal with psychologically. And this week, it begins. She said she felt great at church this morning, so PRAISE GOD for that. I’m hoping He will sustain her with that same strength and energy through the coming months, as she starts to think about getting outside with TJ-- maybe to the zoo or to the mall, and --(gasps)-- swimsuit season.Anyway, I’m off to the gym to try to run off some of this adrenaline on the basketball floor. Thanks so much for your prayers and support this month. And HAPPY EASTER Tyson

(Leslie's praises)

2008-03-22T19:39:00.000-04:00

Psalm 103: 1-5 "Bless the Lord, O my soul; and all that is within me, bless His holy name. Bless the Lord, O my soul, and forget none of His benefits; Who pardons all your iniquities; Who heals all your diseases; Who redeems your life from the pit; Who crowns you with lovingkindness and compassion; Who satisfies your years with good things, so that your youth is renewed like the eagle."There is so much to talk about, but I must begin with praising my God for His goodness and for more answered prayer. First and foremost on this Easter weekend I want to thank my Heavenly Father for sacrificing His Son for my sins. As a mother, I have NO idea how He was able to follow through with His perfect plan. I couldn’t have done it! I can’t wait to praise Him tomorrow for His awesome power of raising Jesus from the grave. It is that power that gives me life and strength to overcome all that life is throwing at me.Praise God for sweet reunions!!!! TJ came home on Wednesday, and I couldn’t have asked for a better response from him. Thanks for all of those praying for this specifically! He was a little shy at first, but within 5 minutes he wanted me to read him a book. And by evening he was voluntarily giving my "ouchies" kisses to make them better. God knew I couldn’t have taken rejection from him!!! Of course, he was full of questions, especially when we were administering my IV meds for the first time in front of him. But, by the next day he had already gotten used to seeing it, and it’s almost "normal" for him already. He has been such a joy in this home. He comes up with some great one liners quite regularly. Last night he was sitting on the edge of his overflowing toy box leaning slightly into it and said, "Look, Daddy. I’m put away!" He’s a clever little guy, and I thank God for him everyday!Praise God for continued healing. I can actually breathe through this "million dollar nose"!!! My voice finally sounds like me again. I can count on one hand the amount of tissue I use each day as opposed to almost one box every day!! (Yes, you should have all bought stock in Puffs about 6 months ago!) I haven’t taken pain meds in almost one week. I have more energy than I have had in months!!!!! I haven’t been nauseous since I have been home! My swelling continues to go down a little bit every day. It still is not acceptable to me, but I am trying to remind myself that my surgery was less than 2 weeks ago. My incision is healing well, the best it has looked after any previous surgery.Praise God for faithful and extremely generous friends and family! I cannot thank you all enough for the birthday wishes and welcome home gifts!!!!! Where do I begin? I am continually amazed by the generosity and creativity of your gifts. Thank you for the endless cards, balloons, floral arrangements, fruit bouquets, cookie bouquets, books, Scripture cards, prayer blankets, money gifts, gift cards, more delicious meals, gifts for TJ, and pampering items. Forgive me if I left anything out!!! Thank you especially for your continued love and prayers. They are keeping me strong in the midst of some very emotionally draining times!Please continue to pray for my swelling to go down. Some days I don’t seem to care about what other people think about the way I look. Other days I really struggle and consider becoming a hermit until I look more like myself. It’s an ongoing battle. As I continue to feel so much more like myself than I have in months, I find my heart screaming, "It’s ME underneath all this swelling! I’m the same person I was, I just don’t look like it!" Not that I didn’t have compassion before, but it sure gives me a greater appreciation for others who live their whole lives with abnormalities and have to endure the looks and ignorant comments. What does not kill us will make us stronger.....so "they" say. Tyson and I do feel stronger than ever. Praise God.I am finally feeling like we could be on our final path to healing. After every other surgery or treatment I never felt completely settled like things were going to be over. However, after this surgery I feel differently. I still find myself fighting the questions of "What if the infection won’t go away?" and "What if the prosthesis doesn’t take?!" We will continue to do as we have been doing. Praying, keeping our eyes fixed on Jesus, finding joy in the present, and taking one day at a time. Psalm 27: 13-14 "I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; Be strong, and let your heart take courage; Yes, wait for the Lord." Leslie

Birthday Home!!!!

2008-03-18T15:41:00.001-04:00

We’re at home. Leslie is just settling in to her old bed, her own clothes, etc... having enjoyed lunch with me in our own kitchen, then taking a real-life shower (not out of a basin with waterless shampoo and baby soap). Now it’s nap-time.Some friends "broke into" our house (they know our garage door combination) and decorated with streamers, balloons, and flowers and a big "Happy Birthday" banner. Her sister apparently came by sometime today before we got home to fold some laundry and change the sheets on the bed, and leave a birthday present for Leslie. All wonderful birthday gestures for the lady of the hour. A happy birthday, indeed.The home care nurse comes by late this afternoon to teach us how to use the PICC. Leslie will self-administer a total of 5 doses of antibiotics through her "permanent IV" every day for the next 6 weeks. (2 drugs, 3 and 2 times per day, respectively.) I’m off to fill some prescriptions. I had no idea that Walgreens and CVS stock IV dosages of drugs. Nor do I have any idea of how I’m going to fit 74 doses of an antibiotic (and that’s just one of them) in my fridge. (I’m assuming it’s a "keep refrigerated" thing...?)Ah, on to the next adventure.Rest will come much easier now that she’s home. I’m praying that her body can make the most of the opportunity to heal completely. And quickly. (I’m getting greedy, now...)

One more night...

2008-03-17T19:12:00.000-04:00

So Leslie won’t be coming home until her birthday. Although we got a doctor to PROMISE (and even shake on it) that she’ll be in her own bedroom before noon tomorrow. The final drain came out this morning, and her swelling is gradually easing. She is now reading a magazing with BOTH eyes! (or at least one-and-a-half... the left eye is just barely open enough to help her right eye out a little...)
Basically, at this point, we’re waiting on the Infectious Disease staff to get us all set up with our at-home care-- dosage, specific drug therapy, etc...-- regarding her antibiotics. It’s a bit tricky, because the one med they feel that is very crucial that they proceed with is causing much of the nausea she is still experiencing. So, they’re trying to get that all sorted out, and they won’t be ready to get her set up with at-home care until tomorrow evening. So they’ll release her tomorrow morning.
Leslie’s spirits are up, and she’s talking and sounding more and more like herself. The "looking like herself" part will take some time. By her own description, she kind of looks like a scene from the recent romantic comedy, "Hitch"-- the part where Will Smith’s character has an allergic reaction to some seafood on a date, and the side of his face kind of blows up like a balloon, and is all irregularly shaped. If you saw the movie, you now have a visual. If you haven’t, you still have no idea... but suffice it to say, she will not be looking "normal" for another several weeks-- even months. The swelling on the left side WILL come down... just not overnight.
Again, this is harder for her than anyone, as she starts to think of seeing TJ for the first time-- his possible reaction, etc... As she starts seeing friends for the first time, trying not to make anything of their reactions... already feeling guilty for them trying to figure out "the right thing to say", etc... Going grocery shopping, ignoring the "second looks" of curiosity, etc... All that will be hard to deal with.
(By the way-- for those of you already planning what to say the first time you see her out and about... the best thing you can say, and the easiest thing to hear that I can come up with is... "It’s SO good to see you doing so well! We’ve missed you! and We Love You!" Anything else will border on dishonesty, or at least raise Leslie’s suspicion thereof.)
So we’re camping out here for one more day. Her spirits are up. Missing TJ horribly, and just ready to be home and get some semblance of her life back.
Hopefully our next blog will be from our home desktop computer... unless Leslie gets inspired (or bored) in the meantime...
-Tyson

Day of Rest

2008-03-16T19:04:00.001-04:00

A quiet "Sabbath" day in 2333 bed 1. (By the way, you know the "Sabbath" is actually Saturday, right?) (Just checkin’.)
Leslie got a roommate yesterday, but she’s very sweet. And quiet. And doesn’t speak English, so we can talk about whatever we want and have virtual privacy. Although, wouldn’t it be a wonderful trick for a recent immigrant to play, pretending he/she doesn’t know a lick of English... But I digress...
Leslie has battled nausea again today, especially this morning. But really, today was quite better than yesterday. It’s the drainage and all the oral medication that do that to her. At least this time, the worst was BEFORE breakfast. (for obvious reasons) But after that, we’ve had a pretty good day, in the relative sense. We’ve had some very good laughs together-- I can’t seem to remember the subject matter off the top of my head-- just making each other laugh like we tend to do. I’ve been here all day, and there has been much more silence than conversation, but those of you who have been married for 6 (or more) years know that there’s something beautiful about sitting in silence (no movie, no real engaging distraction) with somebody you know so well, and just not feeling like either needs to say anything. It’s better than being in silence apart. I’ve been fiddling on my laptop. She’s been dozing off and on. We watched pieces of a college basketball game. (She turned it there, not me... although she probably turned it there FOR me.) (She’s such a good woman!) :) It was just a good day.
The swelling is down a little bit. The left eye is just starting to peek open. Overall, progress has resumed today.
Highlight of the day: Dr. Porter, one of Dr. Zender’s residents, came by to chat and pray with us today. His wife is a friend of one of Leslie’s friends from back home. . . if I said that right. You get the idea. One of those "friend-of-a-friend" deals. Anyway, his wife made him... errrr... I mean, he "had it on his heart" to stop by today, just to chat. He’s a very cool guy. We learned quite a bit about Leslie’s process, actually. He and his wife learned of our story through the friend connection, and knew of our "spiritual common ground". We talked church, talked life, talked medicine, even a little politics, and then we prayed. It was pretty cool.
I asked him if he thought he’d get in trouble for that. (Doctors don’t ASK GOD for their patients’ healing, do they??) (re-read that with an obnoxiously facetious tone, if you didn’t the first time). He said there are things that are just more important in life...
I told Dr. Porter that whether he knew it or not, he was a walking talking answer to prayer. He "stood in" on Leslie’s first surgery, before he knew her from Adam. . . or Eve, I guess. Anyway, there were a couple of people that said they would be praying for a Christian "influence" to be present in the surgery. Pretty cool, eh? And here (at least one of these "influences") turns out to be a friend we didn’t even know prior!
Anyway, we’re here for tomorrow for sure, and now they’re talking maybe Tuesday as well. We’ll see... Good day today,though. Praying for another tomorrow. And a peaceful night in between.
-Tyson

Leslie Speaks...

2008-03-15T21:13:00.000-04:00

I will make an attempt at writing with only one eye opened and my nails too long to type quickly. I hate to write on such a "downer day", but I am just feeling the need to get things OUT!
Of course I told the docs today that I am ready to go home today. Who wants to be in here?! Who wouldn’t want their own bed, own bathroom, own spouse as your nurse instead of strangers, and no more poking and prodding?! But, in all honesty, I know I am not ready. I am trying to gear myself up for 2 more days. I am feeling less down tonight than I was this morning, thanks to lots of sleeping and my sweet hubby sitting by my side giving me his "pep talks".
It’s been a very teary day. I really miss TJ but am dreading his reaction when he sees me. I am praying to God that this swelling goes down so I can get this other eye open. I think he really might be scared. I am scared when I see me. I feel completely ugly and not like myself at all. This is not me. I am embarrased to even admit all of this. It could be worse. I don’t have cancer. I am alive and "well". But, this is going to be more difficult than I thought. Living with this defect for "who knows how long?". I still have a hard time believing that this is all happening to us!!! What is the point?!
That’s all for now. I am tired of focusing on the screen. Time for more snoozing.

SCREEEEEEEACH!!!!

2008-03-15T16:56:00.001-04:00

That’s the sound of the brakes this morning on the express train to recovery Leslie’s been on.
Her roommate was released early last evening, and they haven’t filled the bed yet. I’m kind of wondering who’s pulling the strings to make that happen for us. I got in to her [temporarily] "private" room this morning, 10 after 9 (they’re tougher with visiting hours on "the floor"), JUST in time to see my dearest expressing herself and her sudden nausea with the utmost intensity-- right into one of the pink buckets. They’re trying to transition her to oral antibiotics (not sure if this means she won’t going home with the PICC line???? I’ll keep you updated...) And all the pills this morning were just too much for the tummy. She’s not good with medications in the morning when she’s healthy, so I’m not too alarmed at this. But I’m not too happy about it, either. I’m immediately reminded we’re no longer in ICU. She had pressed the call button a few minutes before I got there. I ran to flag down a nurse when I saw her reaching for the pink bucket. And still, it was 10 minutes after the incident before a nurse showed finally up. The nurse was very kind and compassionate... but the patient-to-nurse ratio is no longer 2:1, as it was in ICU.
She has a little more congestion this morning than she did when I left her, (it comes and goes-- still not as bad as before surgery) and she’s on strict orders not to blow her nose. This just adds to the nausea. The exertion into the pink bucket only adds to the pressure in her head. Which adds to her congestion. And so-on. The marked improvement that we’d been seeing, even hour-to-hour, in her swelling and appearance over the last two days seem to have been thrown out of gear. She’s not looking worse... okay, maybe just a little. But again, it’s probably all due to the stomach issues this morning, changing medications, etc... all associated with just going through the first night away from our friends in ICU. "Home sickness", we’ll call it, for now.
Dr. Prabhu is heading home, having completed his night shift. He stopped in on his way out, just to check on her. "Do you really want to go home already?" He asked softly with a smile on his face. Leslie said she feels like she could (she’s a warrior... the pink bucket still had not been emptied at that point). And Dr. Prabhu said he’d really like to keep her here for a couple more days.
"My birthday is Tuesday," Leslie said. "You’ve gotta let me go home before then."
"Unless you’re gonna throw her a giant party." I added.
"Maybe we’ll have the nurses all come in and sing for you." Dr. Prabhu said. The nurse, still tending to Leslie, witnessing this whole conversation kind of laughed, but shot Dr. Prabhu a concerned look, as if to say, "You’re NOT serious , right?" Maybe word of the personal ice cream delivery yesterday is getting around...
"We’ll have you home for your birthday. Maybe Monday?" he said... almost soundling like he was bargaining with her. Leslie, eyes still closed, kind of shrugged and raised her bald little eyebrows and half-nodded. What choice does she have, really?
That about sums up the morning. Still this weird mix of being encouraged and being in misery. Crazy ride, this express train to recovery. I guess you have to put up with a few stops along the way. Praying we keep it on the tracks... Tyson

Off to new digs....

2008-03-14T21:24:00.000-04:00

Okay, we’re still in the ICU, but just because I think somebody forgot to send for the transport. They’re packing her up for the move now. But Leslie’s feeling so well, honestly, she could walk herself there if they’d let her.
They removed 2 drains-- the one in her head and one in her back. Boy was that an experience... I may get queezy myself just explaining it, so I’ll spare the details for now... let’s just say I had completely fogotten how LONG those things were.
All 3 surgeons stopped in to see her at various times through the day, and they all give the same feedback: "WOW! You look great! Even better than we had expected, and you may heal more quickly than we had projected." Tuesday they changed her antibiotics, and that seems to be a) partly why Tuesday was so horrible, due to her initial reaction, and b) why she looks so much better now, and is improving so quickly. The cultures from the ID Doc’s confirmed that the infection had grown resistant to the Ciprofloxacin (her previous antibiotic), which is why she was getting sicker toward the end, just before surgery.
Leslie’s becoming a bit of a rock star around here. Everyone knows and loves her. Dr. Prabhu bought her a bowl of mint chocolate chip Edy’s ice cream from the cafeteria, and called her "his favorite person". Don’t worry, I’m cool with it... he’s just a very compassionate man... odd for a brain surgeon, I hear. All the nurses want to see pictures of her from when she was "healthy", and they ask how she’s doing when I pass them in the hallway or whatever. And the cool part is (in a weird twisted way), we’ll be back for more of the rock-star treatment, here in the neuro-ICU, when they put the implant in a few months from now. In all seriousness, it makes the process so much more bearable when you don’t feel like only a "bed number" and a wristband barcode.
So we’re off to her new digs. Not private. Not a window seat. We’re joyful all the same. Happy to see another homecoming on the horizon. (Maybe only a day or two.) Happy to have her being "herself". Happy to be healing ahead of schedule, to have her forehead not looking "concave", etc... (She sees me typing this, by the way, and is making fun of me for saying how "happy" we are. But she acknowledges she IS, at least, "happily grumpy".)
Much to be thankful for tonight. Send the thanks up, please, if you happen to think to pray for her tonight. Love you all. Tyson

Unplugged

2008-03-14T16:32:00.000-04:00

The morning nurse came in and unhooked Leslie from most of her tubes and wires. Just one IV and the 3 drains left now (and the PICC of course, but Leslie’s already used to that one-- and we’re taking it home with us). She’ll be moving to the beloved floor today. Pray for a good roommate.
We’re going to try to catch some basketball games today, get her distracted and entertained a bit. She felt a little more uncomfortable when I got in this morning, but is sitting up in a chair, eating breakfast (feeding herself) and feeling a little better now.
She’s starting to talk and sound more like herself-- a very worn-out version of herself, but her voice is stronger and the lesser amount of narcotics in her bloodstream is evident in the clarity of her thoughts and responsiveness. Her left eye is still swollen shut, but the swelling overall is down a little this morning. Grafts and bloodvessels all looking and sounding better and "on track".
I’m finding that I’m driving us both crazy, wanting to do something to help her along. Today my focus is to sit here and shut up and speak when spoken to, and respond when a request is made. The exercise was good for me yesterday. It’s just hard when I’m healthy and not narcotic-laced, and just sitting here, not being able to do anything (as I’ve mentioned countless times before). And I’ve been a little too eager to talk, to help, to cheer her up, I think. Anyway...
Thanks for all the prayers, comments, emails, and thoughts. I got Leslie "caught up" with all her messages today, at her request-- the blogs, email, etc... "So, you’re all caught up with how you’re doing now!" I joked. But seriously, she was very encouraged by all the support. So thank you.
Next update will be from our side of the curtain, in a "normal" room. Hoping for a window seat! (less traffic, more of an illusion of "privacy".)Tyson

Silver Lining...

2008-03-14T06:44:00.000-04:00

Today was the silver lining that we needed. Completely unexpected, especially with the darkness of the cloud that was yesterday.I just said good-night to Leslie. On the phone. Her mom came up from Peoria to relieve me early today. Leslie is still improving wonderfully. Doing about as well as somebody can, with all those stitches and tubes attached. She felt a bit of the nausea and pain creeping back a little while ago, but they caught it early enough and got her medicated, and now she’s drifting off to lah-lah-land, with merely manageable pain and hardly any nausea. Thank you God for heeding our cries. For a full day of awesome relief (relatively speaking, of course.)The catheter is out, hallelujah! But Dr. Vandevender was in today to inform us that the drains would stay in for another couple of days. I’m assuming that means ICU for a couple more days, but I could be mistaken. But as we learned last time, if we’ve gotta be in the hospital, we’d rather be in ICU than on "the floor". Better nurses, better attention, private rooms, better med’s, etc... Another bit of thanksgiving that I overlooked blogging, which Aunt Gayle was inquiring about... You’ll recall that right after the surgery, I mentioned that one of the crucial things they’d be monitoring was the blood vessel work they did in her temple and forehead-- this re-built network of arteries, veins, and capillaries that are feeding this new "muscle flap". I’m thrilled to report that everything looks excellent. They come in and check her with this little Doppler device-- much like a pencil-sized ultra-sound machine, for those of you who have endured the adventure of child bearing in recent years. They gunk it up with this gel stuff and "listen" to her forehead every couple of hours or so. And every time, the response is, "ooooh, that’s nice", or "that’s what we like to hear". So all is well with her new frontal cranial circulatory system. :)I’m almost giddy tonight. Funny I’m so happy with my wife’s health, given her current condition. But all indications are (tonight at least) that we’re on the road to recovery.I’ve been fantasizing lately... maybe fantasizing isn’t the correct word. I’ve been hoping for... looking forward to... (that doesn’t adequately describe it either)... anyway, I’ve been daydreaming about a time this coming fall, or winter maybe, when our family is together and healthy again... walking on the beach, or taking a Saturday morning trip to the zoo or a train ride downtown. Seeing and hearing Leslie laugh like she does-- throwing her head back and squinting her eyes. Having enough energy to do the silly little dances she does... just having the energy to be her full physical self again. This whole thing-- these past several months-- have been an unbelievable experience. We’ve been strengthened in our faith, our marriage, our wisdom, and our life has become fuller and richer than ever before. Just THINK how amazing it will be when Leslie is healthy again. When TJ isn’t apprehensive about how Mommy looks or feels. When instead of planning the next CT scan or Dr’s appointment, we’re planning a "date night" or weekend get-away with TJ, or a trip to Florida or whatever. My heart is just bursting at the seems longing for that, especially now with the hope that Leslie’s progress today had to offer. I know, I know... we’ve got a long way to go. "...do not worry about tomorrow, for tomorrow will take care of itself. Each day has enough trouble of its own..." My theme verse. But here’s hoping... Tyson

Hallelujah

2008-03-13T13:03:00.000-04:00

"A joyful noise" this morning... Deep, comfortable sleeping breaths from Leslie. She woke up briefly when I arrived a little bit ago. Shortly after I left last night, things calmed down a little... She got comfortable and slept well. (Dana’s magic touch I mentioned, I guess.) :)
They took her dressing off her head. I was actually very excited to see how good her forehead looked. It’s just so weird to know that there’s no bone there. If anything, it looks rounder and "bulkier" than before... but so does the rest of her head, due to the swelling. So there’s still no way to know how it will "settle" as her overall swelling starts to subside, but it definitely will be much better than we had prepared ourselves for... perhaps even as good as we were hoping for.
Her overall swelling is down substantially today. Still VERY puffy all over, with a giant goose egg on her left temple (where they did the bulk of the blood vessel construction in surgery). But she can open both of her eyes now. And they gave her a bath, so the yellow stains she had on her upper arms, chest, shoulders, and neck (from the betadine they use for sterilization in surgery) and the darker brown blood stains that were spotted all about her are completely cleaned up now. She just looks BETTER. Thank you, Jehovah Rophe, Our Healer God.
Feeling better, too. Almost snoring right now. She feels up to eating (nausea manageable right now), but prefers to sleep for the time being. Her breakfast is here, but we’ll reheat it when she wakes up.
The most significant evidence of her surgery that exists, other than the overall swelling, is the very obvious skin grafts that are now exposed, with the head dressing off. They’re large, a palish-yellow hue, and lined with dark blood-stained stitches... kind of resembling a patchwork quilt, not matching at all the skin that’s supposed to be there. The graft over the "goose egg" on her temple is about the size of 2 nickles side-by-side. The larger one is up on her (former) hairline, about 3 or 4 inches left-to right, and an inch or two top-to bottom. This graft covers the other area where she had been having so many problems-- the spot where she "broke open" right at the end of radiation. That’s where the "joint" between the boneflap and the rest of her skull was. Even after they removed the problem plate last surgery, it never healed right, and appeared to be breaking back open just before this surgery, so I’m not at all surprised--almost relieved-- that they decided to do a graft here. Radiation sucks. Not much else to say about that, understatement that it is.
So I’m so encouraged this morning. The adventure today will be keeping her this comfortable, while getting her to eat... all the while avoiding another bout of severe nausea. I’m going to talk to the Doc’s when they come by about the dosage and timing of her pain meds- even see if there is an alternative drug/ drugs. Leslie’s pretty convinced it’s the Lortab that is turning her stomach (the oral, longer lasting pain med, that they’re administering in conjunction with the morphine). So we’ll see. By the way, the funky new nausea medication (for those MD and RN wannabe’s in the bunch) (and for my mom, who happens to be an RN and likes to know this kind of thing) is called Droparidol (not sure if I spelled that right, but that’s how it sounds). So I can stop calling it Drapawhatever.
Pray for continued improvement, and give thanks, for He has again proven Himself merciful and good. Tyson

Aches and pains

2008-03-12T20:25:00.001-04:00

My heart and head ache this evening. She is just in so much pain. Her back now hurts almost as bad as her head, which makes it very difficult to get comfortable to ease the discomfort. Then there’s the nausea. She’s had the "puke bucket" about 3 inches from her chin all afternoon. Only thrown up once today, but she seems like she’s about to again. I’ve been fighting tears all day. She just whimpers every once in a while. And there’s not a thing I can do about it. ^%$!!! She doesn’t want her neck rubbed. Can’t go back to sleep. Can’t eat. I’m just praying with her, that she can go to sleep and wake up tomorrow feeling any kind of better.
The PICC is officially in and operational. They take Xrays of the chest area after they insert it, to make sure it’s in its proper place. The benefit now is that she doesn’t need to be stuck with needles for new IV’s (which wear out every couple of days), to have blood drawn, etc... They can just draw and inject right there at her little "outlet", in her upper/inner arm.
She’ll be in ICU for at least 2 more full days, says Dr. Vandevender. They gave her 2 more pints of blood today, because her hemoglobin is so low. But everything else seems to be progressing as it should.
I don’t know what else to type now, I guess. I’m so frustrated, and just eager for her to have some reliefe. But what can be done if her Morphine-Lortab-Zofran-Drapawhatever cocktail just doesn’t work???
Groaning prayers tonight. Sorry to leave on such a downer. Her sister is coming in to relieve her... I hope she has "the magic touch" tonight. Tyson

Nice morning outside.....

2008-03-12T12:49:00.000-04:00

40’s and Sunny. Walking Jack (our chocolate Lab) at sunrise, I felt the slightest hint of spring in the air for the first time this year. It was wonderful.
Here in room 2400, things are not so cheery. I came in late-- it took me nearly two hours to make the 20 mile commute because of bonehead drivers rear ending each other (2 accidents in a 10-mile strip of I-55, one of the worst commuting corridors in Chicagoland). And when I got here, Leslie was just miserable. She forced her right eye open just a slit and looked at me. "What TOOK you so long?!" she whimpered. The pain and nausea weren’t that bad, but she was the most alert I’ve seen her since she went into surgery on Monday. And she was just very aware of how uncomfortable she was. She is just now really noticing all the tubes and hoses. (A quick inventory: 2 drains in her back, one in her head, and IV in each arm, an oxygen level monitor on her left index finger, a catheter, heartrate and bloodpressure monitors on her chest and arm, and 2 air hoses for the circulators that are cuffed to her legs, which prevent blood clots.) (I’d be pretty cranky too if I woke up to that.) Plus, the swelling is "progressing". Her eyes are still basically swollen shut, but they look much better (not like she has golf balls under her eyelids like she did yesterday). But everything else looks the same or worse-- only rather than "goose eggs" here and there, she is just puffy everywhere... kind of "evened out". She just can’t get comfortable.
She was holding out, not letting the nurses feed her breakfast, saying that I’d be there soon, but due to the aforementioned traffic situation this morning, the food was cold by the time I got there. Not that she would have eaten it anyway... they completely messed up her "order" she placed yesterday. So cold hospital eggs and ham just weren’t appetizing. I went down and got her some yogurt, and she ate that. And the nurse brought her a "Boost" which is like a Carnation instant breakfast, or those "Gatorade Nutrition Shakes" she’s been drinking at home. (Thanks for those, Beth Shep!) And after that, a bit of a bed readjustment, and a nice little foot massage, she was settling down, back to sleep, feeling a little better.
The PICC nurse just came in. Leslie’s doc’s have ordered a PICC line, that she’ll probably have in her for the next several months. PICC stands for "Peripherally Inserted Central Catheter". This is what we were praying against last time, when they were diagnosing the infection. Now, we’re feeling a bit better about it, although there were a few tears upon hearing the news. We’ve had a few friends who were familiar-- had loved ones with them-- and they actually recommended the PICC for convenience (saves daily trips to the hospital) and effectiveness ("injects" the antibiotic directly into the heart, through the arm, so the medicine is powerful and immediately circulated).
Signing off now, because they’re inserting the PICC now. Pray for comfort! and HEALING! (I mean, please... and thank you) :) tyson

Vomit-free afternoon

2008-03-11T19:46:00.000-04:00

Woo-hoo! Following a very rough morning after which she had nothing in her system left to throw up, Leslie has been sleeping quite well for about 5 or 6 hours-- off and on, of course, between the steady ebb and flow of lab coats and scrubs through her doors. One of the residents on ICU rotation this week is in the anaesthesiology track here at Loyola, and he recommended a new anti-nausea drug for Leslie... Drapa-something-or-other. They use it in surgery so unconscious patients don't heave on the operating table or otherwise adversely react to the heavy anaesthesia. The Zofran (normal anti-nausea drug) just wasn't cutting it this time, as the high levels of morphine they've been giving her almost guarantee a side-effect of very bad nausea. They special ordered the Drapa-whatever for her, and now, as I mentioned, she's been sleeping wonderfully. She needs it. Dr. Zender stopped in and says everything looks as it should-- she just needs rest and a chance to heal a bit.
Her eyes are still swollen shut. From her nose upward, she looks nothing like herself right now. But she will soon, the doctors are confident. A newer nurse that didn't know us from before actually asked if we had a picture of her, just curious what she looked like, pre-surgery. The way she asked it, we (her mom and I) were happy to oblige-- it was kind of sweet really. Even in her current state, though, I'm amazed at how beautiful she looks.
Hang in there, Baby... it'll start feeling better soon. Tyson

Dust Settling

2008-03-11T13:03:00.001-04:00

Leslie is very nauseous this morning... almost worse than her pain. She feels almost no pain in her back, which is a nice surprise, because the doctors said the pain would actually be worse than her head. Her head, on the other hand, is extremely swollen (worse than Surgery 2/ brain surgery), and hurts every time she moves. She needs the maximum amount of morphine her body can take, and that just makes her more nauseous.
Blessings so far: No lumbar drain (which means there was no brain/spinal fluid leakage during surgery). No feeding tube in her nose-- she's been ordered a "normal" diet. She's finally sleeping (all the pain and throwing up made it hard to sleep this morning). The nurses are wonderful-- they remember her from the last time and take extra good care of her, or so is our perception. She only has two "tubes" (drains)-- one in her upper back, where they removed the tissue and one in her temple-- which are fewer than anticipated. And again, she really does have good "bulk" in her forehead where they removed the bone. So much better than what I had anticipated. It's hard to say how it will look a few weeks from now, partly because things will "settle in" up there a bit, and partly because she's so swollen now it's really hard to tell HOW it looks... but we're pleased nonetheless.
Anyway, that's the update. Pray for her nausea and pain. And lots of rest. Thanks so much, again, for your interest, compassion, prayers, and support.
-Tyson

Finished

2008-03-11T06:14:00.000-04:00

12:30 local time. Dr. Vandevender just stopped in to "check out" for the evening. They're all done. Leslie is in recovery, responsive, slightly mobile... and quite the piece of work, from what they're telling us. The bone was significantly worse than they were expecting, apparently. (Dr. Prabhu was just being polite earlier, I guess.) Because the bone was so deteriorated with the infection, the skin was significantly tighter on her forhead, so they needed to get a little creative with how everything was sewn back up. (The process required a couple of unexpected skin grafts from her back, which may end up being removed down the road, after she heals up.)
The surgery took a bit longer than expected, just due to the intricacies of what they were trying to do. The most amazing part was the description of how they tediously connected this new "muscle flap" in her forehead (her make-shift forehead bone constructed of tissue from her back), with its own new little network of arteries and veins, so fresh, healthy blood can get to the tissue, allowing it to grow radiation free-- as if it belongs right where it is. Amazing.
Herein lies one of our prayer requests moving foreward: They're monitoring the stabilization and development of this network of blood vessels in her "new" forehead, making sure that she heals up and everything starts acting as it should. If it doesn't, they'll have to take her back into the OR to correct it. We're praying against this possibility.
And for the rest of Leslie's recovery as well... her swelling, (her eyes are swollen shut), scarring, "bulk" in her new forehead (not too much, not too little, once healed... Dr. V says they may actually have to take tissue OUT when they go back in 6 months to fit her with a prosthetic...) But in my shortsightedness that comes with the chaos of these moments, perhaps my loudest prayer tonight is for Leslie's comfort. I just want her to have peace of mind... that "senseless peace" we keep talking about. I want her to have no pain. I want her to be able to sleep. To not be afraid if she wakes up alone in the middle of the night. And so-on.
I'm off to see my girl now... see if she's up for talking. Kiss her goodnight, at least. We'll have more in the morning, as the dust settles. Needing your prayers tonight...
Tyson

Infected Bone is Out

2008-03-10T17:29:00.000-04:00

Dr. Prabhu just stopped in. When they opened her up, the infection in the "flap" was as bad as they had assumed, and the bone had to be immediately removed. This is no surprise. We were praying for a miracle, and the answer, as it turns out, was "no". We've been teaching our 2-year-old not to whine and "be okay with no". So we will do just the same. (How much we learn about our own faith and relationship with our Father through day-to-day adventures in parenthood, eh?) Besides, there is so much more to pray for today and in the months that are in front of us. I'm not going to get hung up on "missing a long-shot". They're working on her neck now-- an important part of the surgery where they basically build a "tunnel" from her carotid artery to her forehead... the passageway through which the bloodflow will eventually reach and nourish the new tissue in her forehead. Next step after that will be to take that tissue from her back and place it in its new "home". Speaking of miracles... isn't modern medicine amazing? Don't think for a minute that we haven't seen God working real-time "miracles" throughout the past 5 months. It's a shame to think how much we write off as "common science". I can't even begin to think about where we would be right now if we'd have lived just 20 years ago...

-Tyson

Late Start

2008-03-10T17:28:00.000-04:00

The blog site was down earlier today, so I couldn't give any update. And there were none to give. We got to the hospital 10 minutes late this morning (at 7:40), which turned out to be just fine. Due to logistical problems in the neurosurgery OR, Leslie's surgery didn't even start until about 15 minutes ago (2:30 CDT). They wheeled her away from me at around 9 this morning, only to call me back into the holding area a bit later to sit with her a little while longer, informing us they were "a little behind". It was after noon before they kicked me back out and wheeled her toward the OR. And now, they're underway.
Leslie's spirits were up when I left her to the doctors. Our original farewell earlier this morning was a bit emotional, but when they brought me back to be with her in holding, it was a lot more light-hearted. Her overall outlook is that she's ready to get this over with. Ready to wake up without a forehead. Ready for the recovery to get going. Ready to get on with life, even in full consideration of all the difficulties that it will entail. She feels totally encouraged, physically lifted up in prayer, and confident. So thank you all, and again, Praise God.
The surgery should take at least 7 hours, so we're hoping to have her in bed in ICU by midnight. I'll update as I get news-- probably not for a couple hours at least.
-Tyson

Bedtime Stories.....

2008-03-09T22:23:00.002-04:00

Bedtime Prayers
As this night has approached, over the past week, I have found myself growing basically mute. My heart and mind have run out of words... even run out of inaudible groans. Periodically, I've been waking up from a wakeful trance of sorts, staring out the windshield or at the TV screen or into oblivion, hearing the words echo through my ears that my voice had apparently been uttering, ever so quietly-- almost whispers. "Please God. Just heal her. Please God. Just heal her..." over and over and over again. I don't know what else to pray.Thank God the Holy Spirit intercedes on my behalf... apparently through the prayers and songs of brothers and sisters. We looked outside our bedroom window tonight at about 7, and here's what we saw:
More than 50 people from our church, in our yard, just to pray for Leslie, praying for the surgery tomorrow, singing songs of worship. All I could utter were tears and a 30-minute embrace with Leslie as we watched. We couldn't hear any words, unless they were set to a beautiful acappella chorus of a melody we could recognize through the paned glass. But we could hear the murmur of sound... prayers being lifted up. Leslie being lifted up. Leslie has done all her crying over the past 3 weeks, and the tears are about dried up... she was just in awe-- almost giddy. "These people are here to PRAY for ME!!!" I bawled my eyes out. We were both humbled once again by God's "Amazing Grace" and presence, exemplified in His body. We just handled it in different ways. If earlier this evening we were teetering, on the verge of readiness, but still a tad fainthearted about tomorrow, now I can say we're READY. What a send-off, eh? Thanks to all who showed up. We love you. And Praise God! You were His light to us tonight, blazing that trail toward the morning.So yes, we're READY!!! Ready, for a 7:30 a.m. registration at the hospital tomorrow. They called to say they'd have an OR cleared for Leslie by 10, and since they're projecting a 7-8 hour surgery, they'd like to get her started earlier rather than later. So, we'll be heading out around 6:30, allowing for twice the commute, given the Monday morning rush. I will give updates as I have any to give. I'm expecting that it will all be finished, and she'll be admitted to ICU by 10ish tomorrow night, giving some time for recovery, etc... I've never looked forward to seeing so many tubes, gauzes, and gadgets in my life. I'm so ready for her to be off of that OR table. And it hasn't even started yet.Anyway, we're going to the basement to watch a mindless movie, to pass a couple of hours together on the couch. Perfect evening, really. Good night. Tyson

Not this again....

2008-03-08T21:07:00.000-05:00

Our hearts are heavy tonight at the thought of saying goodbye to our precious TJ once again tomorrow. As my headaches and fatigue continue to worsen by the day, it is definitely time to get this surgery done, but we are not ready for more time in the hospital, more recovery, and more time away from our little boy. My heart has been protected this week with all the prayer cover. I have had moments of anxiety at the thought of this surgery and my time in the Neuro ICU once again. I have had times of "what if" questions and "would haves, could haves, and should haves". But God has been quick to remind me that "I am where I am" and "It is what it is". It does no good to question the past. Worrying and fear will not change the outcome of this surgery or the need to have it done.We are scheduled to be at the hospital Monday at noon. They may call us tomorrow to move it up to first thing in the morning. We will let you know if that happens. It is estimated to be a 7 hour surgery. Please be praying for my family as they wait those long hours in the waiting room. I definitely have the easy part there! Of course there are many other things to pray for as I am sure you know. Right now I am tired and I am going to go spend some last minutes with TJ before he goes to bed. (He just blew me a kiss while going upstairs and said, "See you after my bath, Mommy!") He is such a gift. leslie

Surgery Scheduled....Pray without ceasing

2008-03-04T15:09:00.008-05:00

Surgery has been scheduled for Monday morning. Please pour on the prayers. Attach the blog address to every e-mail you send. Let's spread the word to every state and country asking all to pray.

Thanks so much for your support -we have only seven states to go! Alaska, Rhode Island, North & South Dakota, Maine, Utah, & West Virginia. Connections have even gone world wide.....

I am updating this posting as I get info - Thanks SO much all of you - ginny

Quick Update

2008-03-04T11:57:00.001-05:00

I'm a bit frustrated tonight. We got a call today (finally) to schedule Leslie's surgery... and the Doc's can't all get together to do this thing until next week. We're booked for Monday-- if they can get an open ER spot for 8 hours (the projected length of the surgery). Otherwise, it could be as late as Thursday the 13th. Quite a change from when Dr. Prabhu called late last week and said they'd need to operate early this week. I guess this is what you get when you get 3 different surgeons' offices trying to interact.The spots of "concern" are developing (in a bad way) on Leslie's temple and, now a new one is developing along her incision (along her hairline). It's a new hole, basically, almost exactly where the plate was exposed before the last surgery. We're going in to see Dr. Prabhu tomorrow morning-- a routine appointment that was booked long ago, which we meant to cancel last week but neglected to. We're going to have him look at the spots of concern, just to make sure that this can wait for another 7-10 days.We're just wanting to get on with this. She's feeling worse every day (although today was pretty good-- I stayed home to watch TJ, and she rested well most of the day). You can actually see the outline on her forehead now of the "dead" bone that they're going to remove, when the light catches her just right, when she's not wearing her headband. I'm just tired of her feeling this way. I want her to be better. Quickly. This state of "limbo" or this waiting game, or whatever, is not doing us any good. We're prepared. Let's just get on with it already.Anyway sorry to be such a downer tonight... we'll let you know what we hear from the doctor(s) tomorrow.Tyson

Senseless Peace

2008-02-29T21:20:00.003-05:00

As our friends on our blogspot.com mirror site have noted... we're heading full-steam toward the more serious of the surgeries discussed-- full removal of the cranial plate and "bone flap" in Leslie's forehead. "The sooner the better". As many as 6-9 months before prosthesis "installation". Tissue certain to be removed from her back (muscle, skin and fat), to be used to line in the spot to be vacated by the dead bone pieces. There are the abridged details. Now (in my best Paul Harvey impersonation) the REST-- of the story...So the big-whig pow-wow yesterday was pretty amazing, really. Dr's Prabhu, Vandevender (bork-a-dee-bork), and O'Keefe (head of infectious disease--again, no space suit) all joined us with another resident and head nurse in the small consultation room at Loyola for quite some time. Dr. Prabhu was just trying to take EVERY possible angle to find a way to save Leslie's forehead. Dr. Vandevender was convinced (albeit compassionate and regretful to see the writing on the wall), that there was no other option, but open to debate. And Dr. O'Keefe was just kind of quietly soaking up all the details, reserving his judgment for the closed-door session that was to take place later that night, when they'd join Dr. Zender for the last-man-standing-battle-royale, to make a determination. We left the consultation with a small glimmer of hope that there would be a less-aggressive approach that may at least buy us some time to let the "good" tissue restore itself, but really, we knew what was imminent... the worst news that we'd feared all along. But we somehow left that meeting with a quiet sense of confidence... even peace. We sensed we were getting the best effort from the best minds available. And frankly... were finally starting to feel God's presence and peace. Even if the worst came to be... we'd be okay. It would be difficult... but Leslie will survive, and eventually, be feeling and looking some version of normal again.Apparently, the battle royale didn't take that long. All the 4 participants needed to see was Leslie's blood work, taken earlier that morning, which showed that the infection was no longer "dormant", but was starting to aggressively spread to the more healthy tissue. This explained the increased intensity of headaches, fatigue, and sinus drainage over the past few days. Dr. Prabhu was the one who called late yesterday. "The blood work shows that there IS infection in her body now, not just the bone flap. The entire flap will have to come out. And we'll have to do it soon... maybe even early next week." He sounded pretty matter-of-fact, but almost apologetic-- again, he was the biggest proponent of less-aggressive, more-creative "alternatives", but his dim voice was evidence that his hopes and ideas had proven to be fruitless.To confirm, we'd floated our case through a family/friend connection to another reputable reconstruction specialist down-state. After reviewing the data we had to offer, he acknowledged that there was no alternative he could think of... the bone flap (the entire "plate" of her skull) would have to be removed.So here we are. Awaiting a phone call scheduling this grotesque-- almost surreal science-fictitious-- surgery. We have already made plans for my mom and dad to pick up TJ and take him on a little "vacation" to Ohio, where he will be well distracted with all "Mimi's house" has to offer. Leslie's mom and sister will be on standby here. I'm covered at work with my boss and my salesmen-- just have to wrap up a few loose ends on Monday with a couple customers... Ha! Almost like we've done this before, or something... :)But again, although we're badly beaten and broken over the turn of events, we have a senseless feeling of peace and hope... confidence that "it will all be okay"... which can only be attributed to that "peace that surpasses all understanding", which our God has promised to those of us who decide to put all our eggs in His basket. Crazy how God's promises tend to pan out like that. We give him thanks constantly... mingled in with more pleas for mercy, and groans of grief-- even fear... but all contained in this senseless arena of inexplicable peace. Kind of like the feeling you get when you're having a horrible nightmare, and about to wake up... in that instance between sleep and consciousness, you still feel all the emotion associated with the dream, but you know that any minute you'll wake up... you're going to be okay... And then your eyes pop open, you take a deep breath, and get up to get a drink of water. Just a bad dream.In a perfect display of imagery that best encapsulates what I'm trying to say, we received a beautifully encouraging "sign" straight from our Counselor and Creator this afternoon. I was just returning home from some errands that I had to run during mommy and TJ's nap time. I've been feeling absolutely horribly, with some sort of nasty chest-and-head cold/flu bug. I was tired, achy, and miserable... almost loathing coming home and exerting the effort to even put together the meal that somebody from church was bringing over-- already prepared (again, a thank-you). As I turned into our driveway, here's what I saw in the yard...
(upper left corner)..............
In case it doesn't show up on your screen... somebody had come by in the afternoon and "planted" these wonderful little bouquets of purple and yellow flowers all over our snow-covered yard. In the front door, facing inward, so Leslie would see it next time she stepped out to get the mail or whatever, was a giant poster, finger-painted with all kinds of color and joy... "THINK SPRING!" "We love you and are praying for you!" It was so beautiful. We're leaving the flowers in the snow, for the neighbors to enjoy. :) God is here, among us, "...where two or more are gathered in my name..." And in Him, is this "senseless peace" that I'm trying to somehow put into words...The support-- spiritual, prayer, emotional, physical, etc...-- that we've received from our friends, our "blood" family, and our church family (not to mention new friends and strangers that have joined the party along the way) has been amazing, and again, humbling. We would not be able to "hold it together" if not for you all. And I hope you're not growing tired, because we're closing our eyes now, and barreling toward our next little "nightmare".We'll update with details as we have them. Off to play a little gueetar. I'm in need of a little worshipful musical expression...Tyson

Surgery

2008-02-29T07:45:00.004-05:00

Leslie and Tyson received word late last night that the surgery is needed.

Jeremiah 32:27 - I am the Lord, the God of every person on the earth. Nothing is impossible for me.

Prayer warriors all over the world we are asking you to pray - pray for a miracle - be consistent and persistent in your prayer.

thanks ~ginny

Many Thanks

2008-02-28T19:06:00.001-05:00

Thank you all so much for the prayers and thoughts. We have been humbled to the point of tears today, reading your comments-- from brothers and sisters in Christ, but otherwise strangers, scattered across the country. We have truly felt our spirits lifted today for no explicable reason other than God listening and responding to your chorus of prayers. Thank you doesn't encapsulate how our hearts go out to you all... but what else to say...? THANK YOU. We will truly need you-- family and strangers alike-- in the coming weeks... Tyson

Update

2008-02-28T14:17:00.002-05:00

There is not really too much new news to report. It was very good to meet with several of our doctors together to hear all of their different views and opinions. Prabhu is just sick about the whole thing. He is trying to find any alternatives other than this drastic surgery. O'Keefe (Infectious Disease Dr.) was fairly quiet through the whole conference. At first he said he didn't see any urgency. Vandevender felt the same way as Monday. The bone is dead and it needs to come out.SO, they are going to do more talking, with Zender as well. But, most likely they will open me up with the intention of doing as little as possible, starting with taking out the metal plate on my left side. If my bone shows any signs of blood and life, then they will try to treat me with more antibiotics. But, if the bone shows infection throughout with no blood supply, then I will wake up without it and will be on a new road of "recovery".If they do take out the bone, they assured us that they will put as much muscle and tissue behind my skin so that it won't be too concave. It may be 3 to 9 months before they put in a prosthetic. That will just depend on how long it takes my infection to heal. Vandevender told me that within a month of the surgery I should feel better than I do now, very close to "normal". Whatever normal is, that sounded pretty nice. He thinks that the infection is just draining through my nose right now which is keeping me from getting really sick. But the headaches, drainage, and tenderness I have been experiencing for weeks is definitely not normal, which I had just assumed before. (I've never had brain surgery before!! How was I supposed to know?!) All I know is I feel really crappy at this moment!OK, that was more than I intended to write. I will say that we are feeling more hopeful today than we were on Monday. God is protecting us. We will still be praying for a miracle, but we are also praying for God to prepare us for another hard road to travel. Please be encouraged that God is hearing your prayers!!! I am brought to tears with every comment, so many of which are from people we don't know. How humbling it is that God is waking people up at night just to pray for us! I can't express enough how grateful we are. Your prayers are carrying us through. THANK YOU! THANK YOU!! THANK YOU!!! leslie

The Plot Thickens

2008-02-27T20:01:00.002-05:00

Dr. Prabhu called a little bit ago. If you recall, he is the neurosurgeon who tag-teamed with Dr. Zender for Leslie's last 2 surgeries. He is a very kind, gentle, and compassionate man who has been an angel of sorts throughout the process-- showing up at just the right time when we most needed to see the peace and encouragement his mere presence brings to a room. And he's always good for a kind word.Apparently, he has been in quite a bit of conversation with Dr. Zender, and Dr. Vandevender (the reconstruction specialist, pronounced van DEE ven derr-- all I can think is The Swedish Surgeon-- cousin to the Swedish Chef from the Muppets... "Bork-a-dee-bork... Furrst ya taken the scalpel...") It was a late night phone conversation I had with Dr. Zender on Monday night that triggered the collective brain-storm sessions...The news still fresh in our minds, we left a message with Dr. Zender on Monday, basically stating that he had some 'splainin' to do, in regards to this next step in the process-- forehead removal and what-not. Did he see this coming? Is this common? Is THIS going to be successful? And at this point, what does "successful" look like? And so on... Dr. Zender called back late that night and we had a "come to Jesus" talk. He could sense my fear and frustration, I'm sure, but I did my best to keep my cool and stick to the point-- reiterating our appreciation and comfort we felt with he and his staff... but basically asking that he refer us to someone outside of the Loyola network for a 2nd opinion. "Isn't there another alternative here???" We'd followed every bit of their advice and had been the model "patient" up to now... but what they were asking us to embark on now seemed overwhelming to say the least. The conversation went very well. It was like we were two old friends with a mutual respect and understanding-- neither offended by what questions or thoughts the other raised-- just wanting to get some resolution. "Chad" as he acknowledged himself in our conversation helped me realize again that, really, we were successful-- Leslie is alive and cancer-free. And we need to keep reminding ourselves of that. And then he went on to acknowledge that the "next step" we're talking about is unbelievably difficult, especially psychologically. "You've got a beautiful young wife, Tyson... This is going to be hard..." I knew what he was saying. It didn't make the thought of it any easier, but it was good to be reminded that, "hey, at least she's ALIVE." (And for that I have given thanks constantly over the 2 days since.) Anyway, Dr. Zender committed to giving it some more thought and research, and referring us to some good sources for a 2nd opinion, saying he would do everything in his power to make this all turn out "alright" for us. Good group of men these doctors are turning out to be.Anyway, after Zender hung up with me, he picked up the phone and began conferencing with Prabhu and Vandevender (bork-a-dee-bork), discussing creative alternatives and ideas, etc... for Leslie's case. Fast forward to tonight, when Dr. Prabhu called me to inform me of all of this deliberation. "Leslie is our 1 objective-- Drs. Zender, Vandevender, and mine." "I've been spending a lot of time thinking about Leslie's case, thinking about what we should do for the best results..." Apparently, my conversation with Zender stirred the pot a little, so to speak. And apparently, Leslie as a person causes everyone she meets to fall in love with her... even her cancer doctors to whom she might otherwise be another face (albeit a pretty face) in the crowd. They're doubling back and doubling their efforts. I'll take that as a little ray of hope and answered prayer, so thank you, God... perhaps you haven't turned your back after all. (I'm half-joking.)As you may recall, we have a 9:30 appointment with Vandevender tomorrow morning, to discuss the scheduling and logistics of 'the next step'. Dr. Prabhu will now be joining us in the consultation. And Dr. Prabhu wants to see some updated bloodwork, so we're going in early tomorrow so that they can look at current results before the 9:30 consultation.Bottom line is, while the aforementioned devastating forehead removal procedure is still on the table, and would in any other circumstance be the inevitable "next step", the doc's are digging deeper, now, looking for some more answers... and alternatives. I post this tonight to ask you all to pray. Pray for wisdom and insight. Pray that God reveals a clue-- in the CT scans, the blood work, the consultations... anywhere-- which might lead these brilliant minds to come up with an idea that will again make Leslie whole and healthy, with minimal "intrusion".I keep telling her, "I'm just so thankful to have you. And I'll take you any way I can get you... even without a forehead." "Easy for YOU to say," is her response. "It would be easier for ME to be in Heaven." She's right. But, we'd both rather just have her healthy, whole, original-forehead-and-all, here and now. Thus is our prayer tonight. Tyson

and after winter comes...MORE WINTER????!!!!

2008-02-26T18:50:00.000-05:00

For those of you who know me well, you know how much I despise winter and LIVE for spring and summer. How appropriate that this has all been happening through a very long, cold, and never ending winter. However, for my family it doesn't seem like the winter will ever be over, in the aspect of this horrific ordeal. As I look outside I feel like my heart is very much like the ground. Hard, cold, and snow-covered. As many of you said, there are no words to describe how we feel in this moment. I couldn't even tell you what we need to hear to feel encouraged. I am begging God to make Himself known. To feel His presence. Peace. Explanation?! My tears will not stop flowing. My heart and my spirit are so broken to the point of needing to remind myself continually of my child and dear husband, my reasons to keep going through all of these surgeries and battling through each day. Don't worry, I won't go driving off a cliff or anything!!Again, my mind has not forgotten what is true, but my heart is struggling to believe it. God is still here. He still loves me. He has not left me in this mess to do it all alone. This is why I need the prayers of all of you. Your prayers will carry us. When my faith is too weak to believe, I need you to believe for me. Yes, God can still do miracles in any way He chooses. The doctor could be wrong in thinking that this infection has spread. But, whatever the case, I need you to pray when I am unable. And as Dr. Zender encouraged us to do last night, we will try to keep focusing on what has gone right through all of this. What could have easily taken my life, the cancer, is GONE! If God did that, He will surely do this. Won't He?!

Uncle

2008-02-25T17:41:00.001-05:00

So when I was a kid, I was usually the "big brother", pulling and twisting the arm of the littler brother... "Say UNCLE!" I'd demand, until he conceded...And today, with a final gasp for strength, our prayer is "UNCLE!"Today we received the worst news since the "C" word was first uttered by our doctors. We are on our way now for an "emergency" CT scan to confirm what the doctors are almost certain to be... A bone infection that is spreading across, basically, Leslie's entire forehead.To summarize, the radiation seems to have destroyed the "good" tissue's ability to restore itself properly, and the blood vessels have not re-formed in the part of her cranium they had to open during her "brain surgery". And all the antibiotics in the world will do no good if they cannot reach their target via the circulatory system, through healed tissues. So the infection grows and spreads.Should the scans tonight read as they are expected to, we will be planning a surgery that compares in magnitude to her November brain surgery. They plan to basically remove all of the skin, bone, and other tissue from between her eyebrows and hairline (the entirety of the area affected by the radiation), and re-graft some skin and muscle that they plan on taking from her back. You'll note that I didn't mention bone. Medically, they cannot fit her with a "prosthetic" skull bone until the grafted tissue completely "takes" in its proper place, infection free, for around 3 months. Then, assuming all goes to plan (don't get me started on things going to plan), sometime this summer she could be fitted with a new forehead. All in all, we can hope and pray for a nice quick 6-month process until Leslie looks or feels anything close to what we can call "normal".We pray for healing... The miraculous kind that doctors won't be able to explain. But we admit our faith has grown weak. In its place, anger and fear. And fatigue. It's hard to admit this to a bunch of people that continue to compliment us for our "strength" and "faith" through the past few months. But as Leslie said, as she was crying herself to sleep a couple hours ago, "My strength is gone."So... if before we were being "lifted up in prayer"... now it's time you start dragging us along in some more of it. We're off to get that scan now...Tyson

Asking for Your Prayers

2008-02-25T15:38:00.002-05:00

Tyson and Leslie met with the Dr this morning. I am sure they will give a detailed updated, but I am asking for you to pray for them. Pray for the infection to leave Leslie's body. Pray for healing and wisdom. Pray for
strength. Pray, pray, pray
Thank you
ginny

Consultation

2008-02-25T07:05:00.000-05:00

I just wanted to make sure people knew that we will be meeting with the Reconstruction Specialist Monday (tomorrow) morning at 10:30. Please be praying for wisdom for all of us. My headaches are getting worse again so if getting these plates out will help that then the sooner the better. But, a healing touch from God with NO surgery would sure be great with us! We will give an update after our appointment tomorrow.Trying to not be discouraged. Leslie

"it ain't over....."

2008-02-20T17:41:00.001-05:00

Those were Leslie's words to me about 2 hours ago, as we were putting on our coats, getting ready to leave the consultation room at the cancer center where we met Dr. Zender today. She was forcing a half-smile and fighting back tears.The good news is that all her stitches are out now. They were just about driving her crazy these past few days, so we're glad for that. And the doctors say her open wound on top of her head is healing beautifully, to the point where she doesn't have to wear the stretch gauze around her head anymore-- another huge blessing, as this was the source of much discomfort and perhaps even the headaches over the past few days.You might have guessed from my foreshadowing, but there is some bad news today. Dr. Zender's not altogether happy with how the bone is healing. He's not sure if it's more infection, some other kind of irritation, or the body rejecting the plates. But apparently, the damage the radiation caused her body is preventing proper healing in the areas most affected by her past two surgeries-- around where the plates are. Now, the 2 plates that they left in after this last surgery, (she originally had 4 after the "big" surgery), seem to be developing some problems with the bone in which they're embedded. And we're still not 100% sure things are right with the areas they removed the other plates from a few weeks ago.Dr. Zender's not yet saying there is another surgery in our near future. "Let's not go there just yet..." he says, when I inquire as to the possibilities. But we are setting an appointment early next week with ANOTHER specialist, Dr. Van Der Veeter (or something like that), who is a "reconstruction specialist", to see if HE has any recommendations... do we "wait and see" or "nip and tuck" a little more-- start removing and reconstructing the affected portions of her cranium.All that to say, it's been a very difficult day. We both feel angry... but we're not sure at what, or who. I think it's just "angst" in general. And quite emotional. Kind of beaten-down, maybe. We were really hoping and praying for some good news today-- "infection clearing up, back to life as usual any day now," etc... No such news. And now our prayers are kind of loaded with statements of our momentary displeasure with God's sovereignty and where it's leading us. Again, in Leslie's own words... this just ain't over yet. And again to quote her, we're "just not okay with that."much to pray for, eh? Thanks in advance.Tyson