Leslie's Journey.....

Thank you for being a part of the journey.





































Friday, November 30, 2007

"...keeping things consistent..."

My struggle lately is trying to find what "consistent" is... consistent with what? The way it was? The way it's going to be? For the next 3 months? For forever?
"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." The words of Jesus in Matthew 6:34. How true. And how difficult sometimes. I can't keep a single hair on my own head from falling out, let alone one of Leslie's. Or the mood of a 2-year-old. Or the results 3 months from now of a radiation process that hasn't even started yet.
I just want so badly to FIX it all. That's the man in me, I guess. We tend to be fixers. Which if we're not careful can make us very bad listeners. It can come across as having a lack of heart-felt compassion. That's why they say we're not "nurturers". I'm not using that as a crutch, or even letting out a Tool-Time Tim caveman grunt of pride. Rather... it's a day-to-day challenge to overcome. The solution?
It may lie in the verse directly before the "do not worry verse" in Matthew. "But seek first His kingdom and His righteousness..." A daily laying down of my agenda, my pride, my LIFE... at the foot of the cross. The line can seem very cloudy at times, though, between laying down my "agenda and pride", and letting go of my responsibilities and retreating, waiting for the day to pass. Burying myself in work or the ballgame or whatever. It is difficult (at home, at work, at play) to "consistently" do the things I need to do to get us through the day, without expecting, coveting-- even demanding-- some sort of noted progress at the end of the day. To see Leslie feeling better. To hear her laugh. To hear the doctors say the words, "you are healed". For TJ to go to bed easily and sleep through the night. To get the car paid off.
I find it odd. Because I'm a "process" person-- not a results-oriented guy... or so I thought. I don't set goals, but take pride and joy in the process of making myself or things better. Maybe my weakness is one of "perseverence"... which is basically, in the running world, continuing to put one foot in front of the other-- in the right direction, keeping pace-- when you can't see the finish line.
I'm not sure it's consistency that I need prayer for. It's perseverence. And that can be a very scary thing to pray for... it might just be granted... through a long, long struggle, with no end in sight. Tyson

Tuesday, November 27, 2007

a new day......

So my pity party is over. I woke up today feeling much better, physically and emotionally. I don't look like the Elephant Woman anymore. Just a little swollen under my eyes. Tyson went back to work, and TJ has been perfect so far. Mommy feels better so TJ feels better. Amazing. I'm trying not to go too crazy cleaning and getting myself all worn out. I am waiting for my mom to get here so I can put her to work! Thanks for all of your offers to help. One of these days our moms will get tired of the drive, although I love having them around, and we will need to call for some backup. I struggle with wanting to keep things semi-consistent for TJ but needing to admit that we simply can't do it all right now. Poor Tyson needs a break. My goal for the next few days is that he won't have to do one thing that he doesn't want to do when he gets home from work. (Except fix the VCR) (And maybe hang a couple pictures) No really. Unless he WANTS to do those things, he doesn't have to. Until Saturday. So rest up, my dear. Leslie

Monday, November 26, 2007

realization......

If Tyson isn't feeling discouraged about my "low-grade infection" I have to say that I am feeling it for the both of us. That is definitely the word. DISCOURAGED. I feel like I just went at least one week back in my recovery. In my energy and in my pain and discomfort. And definitely my attitude has taken a hit. I'm mostly discouraged about how it is affecting my family dynamics. TJ is frustrated with me again, and Tyson is back to doing it all. I hate it. I hate knowing that I am the reason for the unsettledness in the house, and I can't do one blasted thing about it. I have no energy to fight through the 2 year old mood swings. I have to ask Tyson to do about everything I need to have done because I simply can't do it. I am cringing as I hear TJ demanding that Tyson play with him while Tyson is just trying to get time to himself. (I was supposed to be playing with TJ, but after about 10 minutes he insisted on Daddy and went to find him.) This is going to be a longer road than I thought.I've never been a very patient person. (I can hear my family laugh as they read this.) I hate being needy, and I hate that our lives are revolving around me. I always feel better when the focus isn't on me. As I write this I am realizing how much my focus isn't on God right now. I have sunken to the level of "feeling sorry for myself". My mom used to always say "Things could always be worse. When you are feeling down just think of others who are worse off than you are." As much as that annoyed me, it kind of worked. (don't tell her that though) I do realize that things could be much much worse. So, why can I give God control when I am being wheeled into an operating room to have my head opened up, but I can't seem to give Him control over my speed of recovery? Or my family's well being? Hmmmm. I'll have to think about that.Psalm 34:18-19 The Lord is near to the brokenhearted, and saves those who are crushed in spirit. Many are the afflictions of the righteous; but the Lord delivers him out of them all.Well, time to go deal with a tantrum so Tyson can go do some grocery shopping.
Leslie

Sunday, November 25, 2007

"low grade infection"

The severe swelling, as it turns out, seems to be the symptom of a "low-grade" infection. Much like a cold, I guess. But her poor body can't figure out how to drain and clear itself with all the rearranging and reconstruction that's been going on over the past few weeks. So the fluid just gathers and swells, and gives her a headache. And when it does drain, it goes into her stomach, which causes horrible nausea.She threw up in the ER. They gave her some zophran for the nausea, and drew a lot of blood for some more lab's. Those, along with the CAT scan, all came back pretty clear-- except for the high white-cell count, which basically just confirms she's fighting some infection. We've got her on some high-voltage antibiotics now... so hopefully it's just a matter of a couple of days until she's back along her path of improvement.Whew... that was a scare. I didn't know how to take coming home today and seeing her looking like she was looking back in the hospital. That seems like so long ago... It's been a stark reminder that we need to continue to take it slow and steady. She needs much rest. I'm taking the day at home tomorrow to take care of her and TJ and to take her to see Dr. Zender, who-- upon receiving news of today's events-- now wants to see Leslie tomorrow for another "scope" and check-up.I'd be discouraged... but really, I'm just too relieved that everything seems to be alright to be down about the whole incident. We have come to a conclusion, now that we are becoming hospital connoisseurs... The ER sucks. Not nearly as glamorous as it is on those TV shows. We much prefer the comforts and service of the ICU. Although... we'll take an in-and-out visit to the ER over a 5-day stint in ICU any day (or week), if we had to choose-- but here's to hoping we don't have to.Well... I've just put TJ to bed, and I'm off to tuck in Leslie for an early bed-time. Thank you for your prayers today. We could feel ourselves on the brink of panic and severe frustration... but we were sustained yet again. Thank you. And thank God.Tyson

Holiday hangover.......

We're on our way to Loyola, momentarily. Leslie didn't make it to church. I came home to find she was very swollen and very fatigued. She left a message with Dr. Zender this morning, who called back right when I got home around 12:30. He wants her to go the ER for an emergency CAT scan. It could just be fluid from all the "action" over the past few days. I'm hoping we didn't over-do it, making the rounds for the holiday. Dr. Zender is concerned about some potential "air leakage", which would mean she'd have to stay in ICU tonight. The CAT scan will tell us more. Please be praying... this is a little scary... I'll update when we return. It may be several hours... hopefully.Tyson

Thursday, November 22, 2007

Plenty of thanks to give.....

We're in Ohio with my family today. It was a quiet and rainy drive yesterday afternoon. Leslie and TJ slept. I just listened to the rain and watched the miles pass. This is truly the most wonderful Thanksgiving ever. I mentioned that to Leslie when she woke up. She gave me a hyper-sentimental, fake-holiday-cheery look and asked with a forced lisp, "So... what are YOU most thankful for this holiday season?!" We both laughed pretty hard, and then I kind of teared up.
I can say I didn't take much "for granted" in life, prior to the cancer bit... but I will say that this season had lost a bit of its meaning. It had grown into more of a "time off of work"... veg' time with the fam'... very fun time of the year, but not truly a season of "thanksgiving" and worship of our flesh-born Savior. But this year I'm very much into the "spirit" of the occasion. With every breath, I seem to be exhaling the words "Thank you..." in silent prayer.
Thank you for another year... another day... with my beautiful wife. Thank you for our beautiful little boy, and that I can watch them loving each other with laughter and kisses for another holiday. Thank you that Leslie gets to watch TJ open his presents, and that she can tell him the story of Baby Jesus in a manger, with his eyes wide with delight and intense interest. Thank you for improving health... for the scoreboard reading in our favor in this competition against cancer. Thank you for the marvelous quality and quantity of food that I'm about to consume... and thank you that at least Leslie can enjoy the sight and nourishment thereof... if not the taste and smell. Thank you for our wonderful families... for parents who support us and who still love each other so well after all these years. For brothers and sisters and in-laws, and aunts, uncles, cousins, etc... who are so enjoyable to be with, and who love us well. Thank you for Your provision... for a job that I enjoy, for good people to work with, and a boss who is understanding and supportive in times such as what we've gone through over the past few weeks. Thanks for your grace, peace, patience, hope, and perseverence, healing, and salvation-- all which have taken on new and profound meaning these days. Thank you for life. And again, the opportunity to share it for another Thanksgiving with my best friend... my "better half"... my Leslie.
Amen. Tyson

Sunday, November 18, 2007

What a difference a day makes.

Where do I even begin? Besides waiting for the energy to write, I have been waiting for some kind of profound thought to enter my mind. So far I haven't been able to clear out all the clutter. My mind is still back at the words, "You have cancer." That hasn't even sunken in yet! All of this has been one big dream, and I am just doing what I am told and showing up where I am supposed to be at whatever time "they" tell me to be there. Quite frankly, I am tired of being told what to do!At least my little boy is back. The hardest thing for me this past week has been to see him keep his distance from me like he is afraid of me or angry with me or something. I have a psych degree. I know what is "normal" and what to expect. But that doesn't make it any less painful when it is happening to me. He is the one thing I have been "good at" for the last 2 years. I have felt pretty useless as I watch Tyson have to do it all.And my emotions? Surprisingly, there are none. Well, not regarding my whole experience. Once I got past the fear of the upcoming surgery, the "emotion well" has been dry as a bone. I wish I could say I have been leaping for joy that the surgery went so well. Maybe that will come when I am actually physically capable of leaping. This all has happened so fast that I can't seem to get my mind and heart caught up to the present. I feel like i have been through one nasty fight, and my body still can't believe that I won! I sure feel like I got the crap beat out of me. I went in swinging like mad, but I woke up face down, in pain, with no memory of the fight whatsoever. I will say that it has been remarkable to feel my body heal so rapidly. Every morning and after every nap I feel a little bit better. I have a little bit more energy. And I am able to do a little bit more. My headaches are more tolerable every day. My bruises are fading. My incision is a little less red. My hair is growing back. I wish I could say that my "smeller" is coming back. I didn't think that would bother me much, but I didn't realize all the things I enjoyed smelling every day, TJ after bath time being at the top of the list. I can't even say that I can smell the tiniest bit. I can't smell a lick! Speaking of lick, I can't taste a thing either. It really makes eating quite boring. I can't figure out why I still have ice cream every night when I can't enjoy the flavor. We are creatures of habit. Well, I feel like I am babbling about not much of anything. Please continue to pray for energy as I am getting ready for 6 longs weeks of radiation. I have been told that the radiation itself won't cause fatigue, but the 5 visits a week will! Please pray for the success of radiation. There is no way to know if it "works" but only to trust that this cancer is taken care of and to pray like crazy that it will NEVER return. The thought of that is unbearable at this point. And pray that I can sort out my thoughts and emotions when the time is right. I think right now my mind is in "protection mode" not letting me process things too quickly. As Tyson said, you all must be righteous people, for God has heard your prayers. I am amazed at how He has taken care of us so far. I can only trust that He will carry us through the rest of the journey.Leslie

Trying to reach equililbrium....

Progress is slower but still... well... progressing, day-to-day. As Leslie's physical state becomes more and more steady, and we start to get our "feet beneath us", new challenges are starting to present themselves, now that we're trying to function as a family again-- no Grams, no Mimi, no helpers-- just us (except for the meals that are still coming to our door every other day-- this helps so much, so thank you, those who are involved with that).As an example of such a "challenge"... It seems that TJ has become quite the Daddy's Boy over the past few weeks. He was always Mommy's boy for the most part when it came to bed-time, kissing ouchies, and a need for nurturing and comforting... That tends to be the way things work in most families, I'm guessing. But with Mommy on the "disabled list", things have been different. I think he just doesn't know how to handle being away, then coming back to a "different" mommy-- the scar, the lack of energy, her basic "state of recovery". It's easy for me to see the progress, but for TJ, she's been a very different Mommy. Last night, it kind of came crashing down. TJ's sleep schedule was all messed up. He didn't get an afternoon nap (usually 3-4 hours) (I know, count your blessings!). And by the time dinner rolled around, he was going all haywire. He wouldn't listen to Leslie. He wouldn't even let her hold him. He wouldn't even say "sorry" for being mean to her. It broke our hearts. He'd just grown used to me playing some of the "mommy" role, and I imagine he's just having a hard time coping, not knowing what to make of mommy being different right now.So we're having to adjust. This morning, he actually woke up and called for Mommy around 7-- that's earlier than Leslie wanted to get up, but it was a bit more manageable hearing his sweet little voice asking for her-- he'd been asking for Daddy since he came back home last week. She got him up, fed him breakfast (which allowed me to sleep in- WOO HOO!!). And it was beautiful to hear him laughing and to hear them interacting a little more "normally" downstairs, as I layed in bed. By 9:30, Leslie needed to go back to bed-- it took all she had in her-- but it was such a good morning. And this morning-- at least for now-- we have our sweet little guy back.That's just one story of many I could tell over the past few days... trying to find our "roles" again. Trying to figure out "balance". With work, with household duties, with parenting... It's hard for us both to know what I should just do, or what she should wrestle through... where I should encourage her, and where I should take over.Anyway... that's our struggle these hours and days. All part of "healing" I assume.By the way, Leslie had her "radiation mask" made yesterday. TJ and I drove her to the Loyola Radiology/Oncology department-- her new home away from home. She had a CAT scan, and they created this weird mesh "mask". This is what her face will fit into during her radiation treatments, to make sure she is immobilized, and to help the machine "aim" properly. Radiation will start in a couple of weeks. Tyson

Wednesday, November 14, 2007

Dawn

We met with Dr. Zender today. He scoped and cleaned out Leslie's nose (very gross and cool process, and I got to watch on the screen...). And he went over the pathology reports in great detail with us. He reiterated that "Things could not have gone any better than this." There is no detectable trace of cancer left in Leslie! Praise God.There is still a possibility of some undetected microscopic traces of tumor/ carcinoma remaining up there... sooo... On with radiation... We met with Dr. Emami, the radiologist who will be in charge of her follow up radiation regimen. 5 days a week for 6 weeks, starting the week after Thanksgiving. The good news is that there will be no need for chemo! Again, praise God! She may experience some hair loss (funny enough-- in the BACK of her head, and only in small hide-able patches-- where the radiation beams will actually be LEAVING her body after passing through their target). Other short-term side effects will/ may also include "sunburn" type symptoms on her forehead, nose, and cheeks, and some congestion and tearing of the eyes. But he said it really shouldn't fatigue or nauseate her at all... at least, the radiation won't... the daily commute to Maywood might, though.After that, we'll need more follow-up MRI's as well, and they'll know then what our outlook is moving forward. We have follow-up appointments already scheduled with Drs. Prabhu and Zender. But everyone seems to say Leslie is in the very top percentile, when it comes to likelihood of avoiding a recurrence. Things I've read online (the Doctors won't come out and conjecture "percentages" in her case), suggest that, given this successful of a surgery, she is 85-95% "in the clear". If there had been remnant "negative ratios" in the tissue following surgery, that percentage would be down around 45-65%... so again, we're prayerfully thankful for such a successful surgery. (Please understand that the last few sentences have been me piecing together what I've read over the past three weeks with what the doctors in Leslie's case are telling us, specifically.) All that being said... due to the success of the surgery, while the rest of Leslie's life will include periodic "cancer check-ups" and close monitoring of her sinuses and head, we have renewed hope to never have to go through this surgery process again. For that we are thankful, and rather giddy this evening. NOW! Back to recovering!Her nausea was much better today. So was her headache. She is still very weak and sleepy, and her vision is still pretty messed up. She lost 15 pounds through this, but with her loss of taste and smell (and the aforementioned nausea), it's hard to build up the appetite to eat as much as she should.Overall, though, our mood around the house tonight is very upbeat. A great day today. Another answer to prayer... Please, if you've been praying for Leslie, be sure to give Him glory and thanks for these blessings. We did our best to turn to him in the darkest hour of this thing, and we will do the same in the light and joy of this "sunrise". Tyson

Tuesday, November 13, 2007

Mid Day lull.....

All is quiet. Both of my babies are asleep for what I hope to be long afternoon naps.
Marked progress for Leslie today. Not as much nausea, a little less splitting of headache. She remained in pretty good spirits all through the 2 1/2 hour excursion to see Dr. Prabhu and back. She just hit the wall when she got home, but I was so proud of her. Conversation was almost normal in the car on the way home... we were laughing at each other and telling TJ stories. It was wonderful. Hopefully her pillow will be a little more comfortable this afternoon-- they removed the stitches today. So now she can shower and wash her hair and everything all by herself. She's all grown up!
The big visit will be tomorrow. We go back to talk to Dr. Zender, and the Radiation specialist we'll be working with in the next "phase". There will be quite a bit more to update on then. As far as Dr. Prabhu is concerned, he says everything looks wonderful... the vision and sensation problems Leslie has been having are to be expected and will self-correct, most likely. The MRI looks great. Sometimes it's hard to differenciate between fresh scar tissue/ "healing" and remnant tumor cells... but he feels that the weird readings they're getting are "the good stuff". She'll have to have another MRI during or after her initial radiation program to confirm. That should start right around Thanksgiving. Happy holidays! :) tyson

Monday, November 12, 2007

Praises to our Father.....

Praise and thanks to our Father for the gift of a family, tonight. TJ came home and was so hyper with joy when he saw Mommy. He was rather intrigued with Mommy's ouchie, but did not seemed to be very traumatized by her state. To be honest, she's looking so good. Almost back to normal completely. She feels much to the contrary, though, and there were tears getting ready to go the the MRI this morning. It was her first time "getting ready" to go anywhere in the past 2 weeks. To you and me, lying there on the couch, she'd appear (as I described a minute ago) "almost normal". But to herself, while she's trying to do her hair-- even just casually to go to a doctor's appointment-- things are so different. Everything feels different, looks different. That was a hard moment. And it probably didn't help that she was feeling so crappy this morning. Nausea was not so bad, but the head was really hurting her. She went with the large dark sunglasses, opting away from the pirate patch for the trip. Wore a really cute headband that covered up the scar. She looked so good to me. I looked at her as I was helping her walk into the MRI clinic, giggled and told her she looked like a rock star. She wasn't amused. I think she's doing much better tonight, though. That probably has a lot to do with the little angel who is now fast asleep in his bed. He had so much fun with Mimi and Papa, but it's so good to have him home. We rocked and read and sang songs tonight. He asked for mommy, but settled for me when I explained mommy's ouchies wouldn't allow her to do the bedtime routine just yet. I had to fight back sobs of joy as we were rocking and singing "I'm in the Lord's Army" (he shouts "YES SIR!"), and "Twinkle Little Star". After we prayed and rocked a little longer in silence, I stood up with him and my arms, gave him one more kiss and put him in bed. I patted his back lightly and whispered, "It's so good to have you home, buddy. You make me happy." He answered, half asleep already, "You're welcome."Thank you, Lord, for the gift of this little family. And for the gift of more time to be together wholly as such-- to your glory and honor.Off to Dr. Prabhu's in the morning for the neurology recap of the surgery and review of the post-op MRI's. If there's anything negative there now, I'm praying it's been miraculously expunged by the time we sit down with the doctor. There will be most likely much to update on following that visit. If not tomorrow, certainly after Wednesday's visit with Dr. Zender. We should have our "game plan" in place by then... schedule of radiation, etc... I guess they call it a "prognosis". It's still so hard to bring myself to use "cancer" vocabulary. At times we both look at each other and say something along the lines of... "is this really happening?", half-expecting to wake up from a beautifully weird and rather bad dream... any minute now...

Sunday in a Nutshell

Today was a much better day. She was still very nautious in the morning. But as the day progressed, so did she. We took a big break from any kind of physical activity. (She stayed in bed until 11:57 this morning... hey, it was still morning.) Maybe tomorrow we'll take another walk.
I'm working from home this week. And TJ is coming home with my mom tomorrow afternoon. It will be a joyous homecoming, for sure. In the darkest place of our minds, there was this fear that... well... I'll just restate... it will be so good to have TJ home with his mommy tomorrow.
I talked to him on the phone today. He asked where mommy was, and I said she was home from the hospital. "She want to talk to me on the phone?" He asked in his beautiful little two-year-old intonation. He talked to mommy for about 10 minutes... a TJ record, I believe. You only usualy get a second or two before he says "Bye-bye". He misses his mommy. And we miss him.
As she's eating more, she's confirmed the loss of her smell and taste. And the feeling in the left side of the inside of her mouth. (and unrelated, the feeling on the top of her head.) Weird. It sounds so trivial, considering what dangers she's faced over the past week... but I really hope she gets her sense of taste back. One of our favorite things to do together is go out to eat. We're big fans of food-- and a perfect date night to us includes fine dining out and an early bed-time. Or at least, that's the way it was. Again... trivial, really, all things considered. Oh yeah, her left eye is still screwy. She donned the patch most of the day. She's being a good sport about it and kind of laughed when I sang the Captain Feathersword's Pirate Dance song.
We talked and laughed and just hung out this evening. It was wonderful to have my best friend back.
I'm still nudging her toward starting to pick up with her blog. I really don't like speaking (or typing) for her. But it is still so hard for her to read, due to the eyesight. She is trying to adjust to focusing with just one eye.
Anyway, that's today in a nutshell... Tyson

Sunday, November 11, 2007

Lazy Saturday

This is going to be a long stretch of days. Leslie slept more than half the day-- that's what she needs most. I'm in charge of dispensing the prescriptions, meals, and making sure she's comfortable... but it's really an easy task. But she really needs someone here 24/7 right now. When she's not sleeping, she's half-sitting-half-lying propped up in bed or on the couch. She's trying to watch TV out of her "good eye"-- that passes some time. She tried doing some email catch-up... only read 3-4 messages, and didn't get any typing in before it became too much. I'd hoped she could give you a all a "shout out" on the blog today, but my encouragement to do so was bordering on pestering, so I'm letting that drop for now.This morning, we did 3 laps around the inside of the main floor of the house. And we just got back from a walk outside-- we made it down the driveway, and over 3 houses on the sidewalk! And back! :) She's in quite a bit of pain now-- every time she so much as sits up, her head starts throbbing. The progress is measurable, to be sure. Unfortunately, the distance we have to go is less measurable. Who knows... Maybe tomorrow she'll make it all the way to the stop sign...The nausea was very bad this morning. She threw up quite a bit-- perhaps a side effect of the narcotic pain killer. She's going to try to get through tonight just with strong Tylenol, to try to avoid the nausea in the morning.Three main prayers of petition: 1. continued healing and physical progress 2. easing of pain and nausea, and 3. overall outlook/ attitude. The last week was a "sprint" of sorts. The weeks leading up to it were a blur of the intense preparation thereof. Now, we're into the "marathon" portion of the journey... and it's hard to see an end in sight... I'm hoping the Dr.'s appointments on Mon, Tues, and Wed. this week will go a long way to paint more detail picture of what we're working toward. It's so much easier to endure when you can see the horizon. Cue, my favorite Jason Harrod song:When you go out on your boat, and the wind is ripping you,And you feel the water rising,See the line of blue on blue? It was given as a gift to you.Keep your eyes on that horizon.'Cause what have we not been given?What have we not been shown?Lord, allow us to rest-- content and at peace in our spirits-- in the shelter of your almighty arms... beneath the shadow of your wings. May this time be a time of peace and not of frustration. Of encouragement and not discouragement. At time for us to enjoy together, and not to count the minutes until the "next big thing". Tyson

Saturday, November 10, 2007

Back in her own bed......

Many prayers of thanksgiving and peace tonight. She at a good dinner-- soup that some friends dropped off tonight. We took a quiet walk under all 12 stars the Bolingbrook sky has to offer-- all the way to the end of the driveway and back. She took a bubble bath. We taped up her open wounds/ stitches/ etc... really well. I washed her hair. Conditioner and everything. I had to get a comb out to get through it all-- carefully working through tangles and dried blood and dead tissue, keeping her 40+ stitches dry, and not pulling on the skin as little as possible. It's refreshing on so many levels for her to have clean hair. A "ceremonial cleansing" of sorts. Symbolic, but just plain hygienic, all at the same time. She has such beautiful hair, and it was a beautiful precious moment. She's asleep for the night (at least I hope she sleeps through the night). For bed-time reading, I read through some of all of our reflections on the blog over the past week. She remembers some-- but not all-- of the events recorded. And was again so thankful to have friends and family who have been praying for and supporting and encouraging her through this.Tomorrow, I will encourage her to give a little blog shout-out. I may have to do the typing. The light sensitivity and double vision play havoc when looking at a computer screen. Maybe the eye patch will help. Arrrrrrrrrrrgh. :)Good night. Tyson

Friday, November 9, 2007

Home Sweet Home

Just got home about a half-hour ago. Leslie's already asleep in her bed. She hardly slept at all last night, and the drive here took everything she had left in her. She's battling bouts of nausea and headaches (understandable). As I was helping her up the stairs to bed, she started whimpering a little. I asked her if her head hurt. She shook her head. "Nausea?" I asked. She shook her head a gain, now sobbing. I asked what was wrong. "It's just good so to be home."It is indeed.We're not ready for visitors yet. Perhaps over the weekend. You can call me on my cell if you're local and wanting to stop by. Right now, she just needs to rest. Monday, Tuesday, and Wednesday are all booked with more MRIs and doctor's appointments... you know... on with the next step in the lifelong task of beating cancer. A little ironic, isn't it?My house feels like home again... just missing the joy (and noise) of a two-year-old, now... but we'll have plenty of that soon enough. Tyson

!!!!!!!!!

I can't find the words that paint and adequate picture of my joy, thanksgiving, and excitement this morning.
LESLIE IS COMING HOME THIS MORNING! We just took a short walk together, under the assessment of the PT-- a "final exam" of sorts... we passed with flying colors! In about a half-hour, they'll be bringing her discharge papers and meds to take home. On a hunch this morning, I turned up the thermostat at the house and packed some clothers for her. (And yes, I made the bed.) :)
Praise be to God the Father for his provision and healing. Check off another on the long list of prayers being answered this week!!!

Saying goodnight....

I'll be leaving soon... no more VIP/ ICU treatment, where the nurses and tech's turn a blind eye to visiting hours & rules, where they are quickly at your service on request, etc... We're just one of the "common folk" tonight. :) So it's night-night at nine sharp. We haven't taken that walk yet... Not sure we'll get it in. Her head's hurting pretty badly. She did walk a bit earlier with the PT, though... so huge strides today. It's harder to leave, again tonight, because of my lower level of confidence in her general comfort overnight. God has provided with brain settling, tumor removal, pathology readings, and other huge stuff this week... I'm sure he can grant her a little peace and rest tonight. "Come to me, you who are weary..." Tomorrow, I'll have her blog you all a little something. She can't see tonight well enough to read/ type, and again, we can't have a conversation without the roommate "joining in" the discussion. So we'll wait for a better moment for her to put two thoughts together. Good night! Sleep tight... and perhaps with ear plugs, if necessary. :) Tyson

Thursday, November 8, 2007

Home Saturday!

Leslie woke up to the sound of Dr. Zender's voice coming down the hallway. I didn't even hear him coming. She's grown to listen for certain voices with her eyes swolen shut over the past week. She said, "hi, Dr. Zender". I thought she was dreaming. Then I looked up from my computer, and there he was, coming in the door.
They removed her feeding tube!!! YES! What a wonderful and horrible experience, all at the same time. I could draw some analogies, but... again... there are kids reading this, I hear...
Dr. Zender did confirm she's experiencing some double-vision, due to the work they did around her left eye. He had prepared us for this, and says it is most likely just temporary and/or correctable. He said they may give her an eye patch for a while, until the muscles heal properly. (TJ will think she's Captain Feathersword.) The doctor's orders for this evening: a long romantic walk down the hospital hallway. Seriously, it's as good as the beach, as far as I'm concerned right now. Except... being in New Smyrna Beach with TJ right now sounds pretty nice.
Dr. Zender says we'll most likely be home on Saturday. Deep breath. Sigh of relief. Respiration all around. And another big HALLELUJAH! Tyson

Out of ICU...

Not to be a grouch... but I liked it better in ICU. Let's just say that there is now extra motivation for Leslie to advance with her eating and exercises. We have a very talkative "roommate". And the roommate has a very grouchy guest. I wish we could hang a do-not-disturb sign on the other side of the curtain between us-- I thought the pulled curain kind of implied, "seriously... we don't want to talk to you right now." And I wish the roommate had headphones for the TV. I just don't care to be listening to "Inside Edition" right now. Leslie doesn't seem to mind... she's sleeping through it.
Leslie progressed very well with her eating and exercising at lunch. She ate about 1/3 of what they served her. She really can't taste a thing (although it's hospital food-- I thought maybe that not tasting it would be a good thing... and then I tried it and realized I couldn't taste it either.) But she choked it down, in hopes to convince the doctors that she's ready to have the feeding tube removed. Exercise time was a huge success. She didn't "hit the wall" until 50 paces very slowly, back-and-forth beside her bed. And I didn't help much either-- she just needed my hand for balance. That wore her out. She started to lie back down, and then they came in and said it was time to move! Now she's sleeping in her new not-so-private digs. Pray for a fast discharge. :) And give thanks to God for her progress!
Tyson

New regimen

So here's how it's going to go for the next day or so... Get up and out of bed for meal times. Each time get up and do a little more, a little longer. We're slowly training her body to be alive again, out of bed, off the drugs. The tone of the nurses is definitely changing from that of sympathetic caregiving, to more of an aerobics instructor/ drill sergeant feel. They just want her to get better, for her to get out of here and get home.
This is going to be so hard for her. And hard for me to know how to balance being a compassionate protector and a motivational cheerleader. Too much compassion, and she won't be motivated to get better. Too much encouragement/ pushing and she'll "pop". But she needs both. My poor girl. My heart hears her whimpers and just wants to tell the nurses to back off and let her rest. My head tells me this is necessary for her to get stronger.
She's back asleep. She was up in a chair for 55 minutes at breakfast. Ate a whole bowl of Cheerios, and a few bites of bacon and English muffin. And she's drinking a lot of water. But all of this took everything she had in her. She was sweating and crying when they helped her back into bed.
At lunch time, we're shooting for 2 hours, and a walk around the bed. The nurse is making it sound like they're expecting her to be out of ICU later today. A couple days ago, that was something to look forward to. In the grand scheme, I know it is. In the moment, though... I'm not so sure. Tyson

Here we go.....

Here we go...
Any minute, now the nurse will be coming in to get Leslie up. Our mission today: Out of ICU! Requires all kinds of movement, work, eating, etc... It's going to be a rough one, and Leslie is miserable. Please pray. Nurse is here, now... got to go. I'll update when she next rests...
Tyson

Resting easy tonight.....

I'm home for the night. Tonight, this empty house isn't as lonely as it was last night.Leslie's sister came in to relieve me, and she'll be with Les until the sleep meds kick in-- around 10-11. She said she was out pretty soundly until around 5 this morning, with the help of the Ambien. She was the most conversational she's been since November 1 (the day before the surgery), just before I left this evening. She made me laugh pretty hard a couple times. Dana had brought along a book to read to pass the time, should Leslie have been asleep or whatever. It's Ortberg's "The Life You've Always Wanted." Leslie mentioned that she had read it and really liked it. Dana asked, "Did it help you 'live life to it's fullest'?" Leslie responded. "Sure. Just look at me now." (her swollen eyes and 40+ stitches buried in her hospital bed pillow) Her spunk is back tonight. After a little bit of nice "together time", she argued with me whether today was a good or a bad day. I'll let you determine who was arguing which side. :) I tried to tell her that, from where I sat, she had made some huge strides today... and how good it was to just have her "back" with me... and how hard the last few days (and nights) have been. She just replied from behind her closed eyelids, "Maybe... but I was in such a happier place then." (referring to the fact that she was nearly in a drug-induced coma then, and now all she is on for pain is basically IV-administered Tylenol.)She knows today was positive. But it was so hard for her. And she knows tomorrow will be even harder. The feeding tube is still in, but Dr. Zender promises it will come out tomorrow. He asked Leslie if she "forgives" him yet (for doing this to her). (That goes back to a couple of comments she made yesterday, in her half-conscious wit.) Her PT goal is to walk tomorrow-- maybe even make it out of the room. All of this requires a good night's rest and a whole lot of effort tomorrow (and prayer). I'm off to get a head start (at least on the rest and prayer part). Tyson

Wednesday, November 7, 2007

this is hard work.....

half a piece of chicken. A good portion of Edy's soft-serve ice cream. Marching in place for 15 (baby-) steps, with a little assistance of a PT and a walker... and now lying back down with a splitting headache. Whew! That was a lot of hard work!
My poor girl. She's working so hard. Everything is in slow motion. Her left eye is swolen shut again today. Every time she changes positions, the shifting just dizzies her and hurts her head so badly she can't even move or even respond. Each foot lifted off the ground no more than an inch as she was "marching"... and it was like she was leg-lifting 100-lb dumbells strapped to her toes. She basically choked down the little bites of chicken because she wants the feeding tube out of her nose... the ice cream tasted pretty good to her, though... we'll be having some more of that later. :)
Dr. Prabhu came by earlier. Everything's looking great. She will probably be staying here in ICU for at least another full day- if not two. But that's okay. Again, you can't beat the care she's getting here. She's got "homework" again tonight-- trying to sit up in a chair for another 10 minutes. She'll need to rest between now and then, though... almost in her post-op veggetative state again for now.
She asked me to read some of your replies and emails to her earlier. I read to her for about a half-hour. She was moved and encouraged. It is truly good to be loved and supported in your most difficult hours. Thank you. I have a newfound compassion for Christ's body, community, and this "agape" love. Brings new meaning to the words of Christ when he spoke about "The Kingdom of Heaven is like..." He wasn't just speaking about heaven. He was instructing us how to live with one another here... "...Blessed are the poor in spirit, for theirs is the kingdom of heaven." We have truly been blessed by our Father through you all over the past 3 weeks. Thank you for being vessels. Tyson

Is It Wednesday Already?

We had hoped she'd be out of ICU by now. This morning's progress: They removed her lumbar drain and her nasal packing this morning. Rather anti-climactic really. I asked her if she feels any better right now. She answered, "oh yeah... I feel like I can go run a marathon". She's still pretty miserable. And she's off the narcotics, so now she's more aware of the misery. I know that this is all good, and is necessary to progress her into a non-ICU bed, and eventually get her home... but again, it's so hard to watch her suffer. She needs to lie back below the 20-degree barrier again for the next 3 hours, (4 hours after removing the lumbar drain). Looking at the clock, I'm having a hard time thinking how she's going to get out of ICU today.
We have a very good nurse today. It's interesting... the "more experienced" nurses seem to be a little less concerned with what we have to say, or really, how she's feeling (at least that's how it seems to Leslie and me). We have a "less experienced" nurse again today... thank goodness. Leslie was feeling pretty nautious earlier. Her feeding tube is still in and running (according to the order), which made me ask the nurse the question: If Dr. Zender needs her to eat in order to remove the feeding tube, but the feeding tube is constantly running, keeping her stomach full... how is she ever supposed to eat? Isn't the whole thing kind of self-defeating? Stephanie the nurse said she was kind of wondering the same thing. She made a call, and now the feeding tube is shut off. The tube is still in, but we're going to see if we can get her hungry enough to eat some lunch. That would be a huge step. Get her insides moving, get that tube out of her nose, and so-on.
I'll check back in after lunch time with the update.Tyson

Negative News (that's a good thing) !

Pathology reports are in... ALL NEGATIVE!! Dr. Zender just stopped by to check in on Leslie. He gave us the good news. In surgery, they extracted some of the native tissue from around where the tumor was, to see how much of the cancer has spread. (You may recall my mentioning this a few days ago.) Well, the results all came back that the bone/tissue was cancer-free! HALLELJUAH! This basically means that she now has a much better chance of fully "beating" this, and decreases the odds of this thing coming back-- still a real fear, but now a smaller likelihood than before... Again I say, HALLELUJAH! Unfortunately for Leslie, she was not so much "conversational" when Dr. Zender came in to give us the good news-- only half-conscious and fighting off a wave of nausia... so I rejoiced for the both of us. we're still not out of the woods-- she's awfully nautious tonight. And pathology also confirmed quite a bit of cancer in the tumor they removed... confirming the need for follow-up therapy (radiation, perhaps with chemo). But for now, I'll let the good news simmer for awhile...
Tomorrow's goal: eat more food, so they can remove that horrible feeding tube up her nose/ in the back of her throat. And more PT progress. Somebody remind me to start making the bed when I leave for the hospital each morning. My baby's coming home soon! (easy there, tiger... one day at a time.) (But seriously, I can't ignore that distant-- at least now it's visible-- glimmer of the proverbial light at the end of the tunnel.)
You all are righteous people. Answered prayers abound today! Please keep it up. Good night! Tyson

Tuesday, November 6, 2007

PT Hour

Things are happening so quickly today! The physical therapist just left, and I'm helping Leslie with her homework: staying awake in the chair. She just got out of bed and sat in a chair (almost) by herself! (okay, we basically had to lift and place her, but I'm sure she felt like it was quite the work out.) Her sense of humor is back with her personality! She called the therapist "mean", and then smiled. She asked me if she thought she should keep her "dread locks" (she can obviously feel her nappy messed up hair) and get a nose ring when this is all done.
In an effort to keep her awake, and upright in her chair as the PT's orders, I'm going to dictate a message from her... here goes... (her comments in bold, mine in italics)
-------------
"I accomplished a huge feat today... I sat up. *sigh*" (can you feel the sarcasm?)
"I feel like ..." oops... stop transmission-- we're keeping this a family-friendly blog...
--------------
Okay that didn't go so well... Her head just started hurting really badly and we had to get her back into bed. We'll try again tomorrow. So she didn't make it an hour as they had hoped... more like 10 minutes. Baby steps. She's back asleep now. Whew... that was an adventure!
But, while she was with us, we had a really good conversation (her eyes were closed, and she was speaking so quietly and slowly it was almost inaudible... but I could definitely hear my girl in there. Man, I missed her!) She called the Colts "those morons" when I told her about the game, and added, "I hate Tom Brady". Maybe that's what made her head start hurting. I gave her the re-re-recap of the surgery and the success thereof. I showed her a picture of TJ playing on the beach, which my dad emailed me this morning-- and that made her smile and nod slowly. And she's drinking small sips of water and juice.
All in all, I'd say we've just turned the corner. I'm off to go eat some lunch. Who knows... maybe she'll be walking across the ICU with only the aid of a walker by tomorrow's morning blogging?
Glory to the Father!
Tyson

Breath Deep

Not just for me. A lot easier to breathe now that Leslie has some of the packing and the "trumpet" out. I arrived this morning to discover they removed some of her "gear." And I was pleased to find her raised up beyond the "20 degree ceiling" she had imposed on her since coming out of recovery. That means they clamped her lumbar drain... which means they'll prop her up more and more today, little by little, until they can do a swallow test, get her eating, remove the lumbar drain and feeding tube altogether, and then discharge her from ICU. Sigh. Progress. After two days of waiting and watching nothing happen (and very slowly, at that), it made my heart leap with joy to see so much had happened overnight. The nurse said it all went down around 7 this morning. I wish I could have been here for it. I know removing tubes and packing and what-not is a miserably uncomfortable process. I hope she was well sedated for that. Speaking of which-- she's still out cold. Doesn't even know I'm here... or at least hasn't acknowledged it. I'm trying not to take it personally. :) (just kidding...) Other than that, the most noticeable "progression" is that she's extremely swolen. She doesn't even look like her. But I was prepared for that. As she begins to sit up more and more, some of that will begin to drain.
So, she looks much more comfortable now... fewer hoses to get tangled up in. Sitting up at about a 30-degree angle. I smile as I hear her snoring ever so quietly. That's a beautiful sound.
Thank you, God, for again making it easier to see you working here. You know I never doubted... but it's nice to see the glaring evidence once again. You are faithful and full of grace and mercy. Thank you. Tyson

Monday, November 5, 2007

Long Day

No updates. More vomitting, increased swelling around her eye-- left eye actually swolen shut, and bruising starting to show. She has been basically non-responsive all day. Again-- I'm thankful that she is not conscious for the day she's having. I meanwhile am constantly dancing that fine line between silently wading through my frustration and basking in that all-surpassing peace.
The highlight of the day was when Dr. Zender came in for 5 minutes late this afternoon. He assured us that all was going according to plan.Tomorrow they will start to sit her up, clamp the lumbar drain, and start feeding her orally. These days are all starting to bleed together into the same shade of gray. And still another long night awaits my poor girl. For prayer requests, just read last night's blog. I wish I had more to report. I just don't.
I probably won't have much to add before I head home later tonight. So I guess I'll just say good night for now. Halleluja-- a joyful noise I will make... quieter perhaps tonight... but a joyful noise none the less. I'm glad to be sitting in silence with my sleeping wife. For the moment, there's no other place in the world I'd rather be. (Although that's probably easier for me to say than it is for her.)
-Tyson

Monday Morning Update.....

Good news is that she is sleeping (I'm not sure if she even knows I came in yet this morning), and her heart rate is down in the 80's, so that's a "praise". However, the nurse this morning said she threw up a couple of times since I left her. That kind of freaked me out, but they say it's normal. Leslie hates throwing up. Maybe it was the sleep drugs? It may help that they're planning on feeding her actual food today (not through a straw up her nose). I just hate that I couldn't be here all night to comfort her when she got sick. I haven't been able to talk to her this morning-- she's out cold (and that's a good thing). So maybe she won't even remember.
Her "head covering" is off (our AC brothers and sisters should get a chuckle out of that). :) Surprisingly, they didn't have to shave much of her hair back at all. If you didn't know her hair before the surgery, you might not even recognize the higher hairline. The scar is almost ear-to-ear, but healing nicely. Once the hair grows back, it should be fairly well-hidden, although she might have to find a new style-- but she's got a knack for that. :) Her friend Beth went out and bought her a bunch of stylish scarves that I'm sure will be a staple in her wardrobe for the next several months until everything grows back. We have such good friends.
Mimi and Papa called from Florida. They took TJ on a little "vacation", just the three of them. We've been building up the event for a week or so, and he was very excited to "go on de airplane and go to da beetz." (beach) He's very happy, and only has cried a couple of times-- once when Papa pinched his finger in the airplane armrest, and once when he "bonked" into an open car door. Otherwise, he's having a blast... I'm not sure whether I need to pray for Mom and Dad to be able to survive the week with TJ, or vice versa. (Just kidding, Mom and Dad. Thank you so much for this.) His little get-away will give us some time to get back home and for Leslie to recover a bit before TJ sees her. We're trying to be sensitive to what effect this whole thing could have on his little psyche. When he gets back, he heads right to "Gram's and Gramps' house" near Peoria for another week. He loves it there. He thinks this whole thing is a great treat. By the time he gets back home, Leslie will be a little more looking, feeling and acting herself, and that will be much better for TJ to take than seeing her in her current state.
I'll give updates today as there are some to give... hopefully more than yesterday, to the good, of course. Potentially she will start to eat, drink (which she is most looking forward to-- her dry mouth is almost unbearable), and maybe even start to sit up. We'll see...
Thank you all for your love and prayers.
Tyson

Bedtime Prayers

They have all the drains out of her now, except for her lumbar. Her head is now tube-less, except for the feeding tube and trumpet in her left nostril, and her oxygen mask. The doctors will be keeping her here in ICU until they can safely remove the lumbar drain-- Tuesday at the earliest. They did not begin the gradual inclining today. We missed the game. We were having it recorded to watch tomorrow, but I caught wind of the results in the form of condolences from emailer/bloggers. I don't have the heart to tell her the Colt's lost in a close one. I guess I was expecting a better day today... and to be honest, I couldn't care less about the results of the game.
Because she had such a bad night last night, she doesn't want me to leave. They're going to let me hang around until the ambien-morphine coctail knock her out. They're bringing in the "good stuff" for tonight. Hopefully she'll sleep deeply through the night as a result.
They're concerned about the heart rate still. The fluid draining/ retention seems to be right on course, but clotting in her legs and lungs is what they're watching out for now-- especially with the weird heart rate. Dr. Zender stopped by, and we were both very happy to see him. He gives us such assurance. He didn't tell us anything the other doctors hadn't already... but it somehow means more coming from him, since he's the one who "did this to her". :)
I guess we're right on track. As tough as it is.
I don't know what to pray tonight. I guess I'll close my eyes and wait for the Spirit to intercede. Here's where I count on you all to come up with the right words. Good night. Tyson

Sunday, November 4, 2007

Asking YOU to Pray

I know you are all praying and right now I am asking for specific prayers.

Pray that the anxiety and discomfort that Leslie is feeling will end and she will be able to rest peacefully.
Pray for Tyson - asking God to give him strength, patience, and rest for his body.

Rough Day.....

Leslie's heart rate is still up. They came in to take 2 drains out, which is good-- that's progress...
But her discomfort and anxiety are still fighting against her ability and desire to rest easy and sleep. They've upped her drugs but they say they won't give her the really strong stuff until tonight. I'm frustrated. Colts game doesn't look likely. And I forgot to set the DVR. I've got to go eat something. Her mom is here, now, too. We've just been sitting here in silence for the last hour or so...
Hey doc... can you give me some of what she's having...?
Tyson

and Music in the morning......

update: She didn't sleep well last night. Apparently, she sat up, or stirred a little too aggressively trying to get comfortable, and lost about 25 cc's of fluid through her lumbar drain, which is too much, too fast. She's okay, but her heartrate is a little high-- in the 80's when I left last night, and in the 120's when I got here this morning. She was sleeping when I arrived, but when she woke up, she told me she had a horrible night. She was just so anxious, couldn't sleep, and there's just no way for her to "vent"... even if she was "allowed", she just doesn't have the strength. So all of that anxiety is just building up, and her heart is going into overdrive. I can just see her poor mind spinning in circles when she looks at me. The doctors just came in to consult- and there's really no reason other than anxiety. All of her vitals look good (except for the fluid she lost last night, but she is doing fine replenishing that), her body is taking the "food" through her feeding tube at the targetted rate. Blood pressure is fine. She's just anxious. They just administered some anti-anxiety medication, and the doctors gave her a little peace of mind. She's hovering around 110 now, but that's still pretty "revved up". Please pray for her mind. Pray for peace in her heart. Pray that the confidence and reassurance that the doctors and nurses are giving her sinks in. And pray that she rests. She needs to sleep. I'm watching the heart monitor, so I'll know if you're "slacking"! :)
This morning I decided I'd throw on a CD for the drive to the hospital. Glen Phillips "Mr. Lemons". (He's the guy from the 90's alternative band, Toad the Wet Sprocket.) I cranked it. I'd been driving in silence this week, just letting my mind breathe, pray, etc... There was enough noise there already, so silence was the ambiance of choice. This morning, though, it was a beautiful day for a coffee and some tunes, as I drove toward the downtown skyline against a sapphire sky on I-55.
I'd fallen in love with this CD several months before we even knew what the words "papilloma" and "craniotomy" meant. And I know now God was preparing me for these commutes. The artist has put together a beautiful folk-rock album that first explores the joy of life, and how we sometimes bore or medicate ourselves to the point that we forget how deeply that joy truly runs. Then, he explores the depths of sadness and pain-- even death. And then he choses, rather than dwelling on the morbidity of that suffering, to again awaken the joy that the blessings of this life have to offer-- to make the most of every moment, in humble thanksgiving, and passionate expression. He cries out, "I will make a joyful noise", because, as he says in another song, "you never know, it might be the last sunset we ever see..." Every song has a deeper meaning now. And I feel that the Holy Spirit has given me these songs to cry out where my voice and strength alone cannot. In the past week, Leslie's and my favorite song from this album has helped us through some very difficult drives (to doctor visits, MRI's, and what-not). It's called "Thank You". I imagined her sitting there in that passenger seat again, our sunroof open to the beautiful fall sunrise, singing this song with me.
You made this world... Thank you...
You gave me life... Thank you...
You brought this peace...
You sow these seeds... Thank you...
Your love is everywhere... Open me! Open me!
You kept me warm... Thank you...
When I was in the wasteland, when I was in the wars, when I was all alone. Thank you... Thank you!
Your love is everywhere... Open me! Open me!
Let it come through me, now. Let it come...
Your love, Lord! Everywhere! Your love is everywhere! You're everywhere!
Open me, open me!
(just typing the words doesn't do the song justice. I strongly suggest you check it out on iTunes, or something. "Thank You" from Glen Philips' "Mr. Lemons" album.) Tyson

Silent Night...

And that's a good thing, to be sure. No adventure, no surprises, no action all day. Praise God! I got a lot of work done on the laptop. It was more like recreation, really-- number-fiddling kind of stuff I'd never take the time to do if I was actually "working". The bedside chair is suprisingly comfortable (why do we pronounce that word "comftorble"?). Every 10 minutes or so I'd get up to swab her mouth with some water, squeeze her hand, ask if she needs anything, etc... And then back down to fiddle some more. Maybe a sudoku puzzle this time...
Leslie continues to progress wonderfully. They are now feeding her through her nose, which is a huge step-- and her stomach is taking it relatively well, and while they monitor the situation closely, there has been absolutely no spinal fluid drainage into her stomach in the process-- again, I give praise to God for this. Her face, now fortified with the 2 units of blood they gave her today, is a glowing red-- a good sign, they say. Her brain and spinal fluid continue to drain (and replenish) according to the Drs.' plan. Like I said... a wonderfully eventless day. It is just so hard to sit there and watch her have to lie virtually immobilized, hooked up to all those tubes and machines and monitors. I've never seen so many tubes and wires coming out of a person-- even in those overly dramatic medical dramas on network TV (I hate them, Leslie loves them, let's see if either opinion is swayed when she gets back home). And the bandage on her head and her oxygen mask make it impossible to kiss her anywhere but on the back of her hand (and that must be done very carefully, because of the IV tubes and what-not). I want just to hold her. Actually, I want to jump into bed with her, lie beside her, put my arm underneath her head, and somehow take some of the monotony and discomfort from her. I can't sleep an hour without tossing and turning every which way, and she's been lying on her back hooked up to those machines for the past day and a half, wrestling bouts with nausea, headaches, back pain, and dramatic temperature shifts.
The good news: tomorrow, the doctors hope to start removing drains (tubes)-- certainly the one below her belly button where they extracted the fatty tissue they used to re-line the brain, which is almost completely "dry" now; perhaps one of the 2 drains/ tubes that is hooked into her temple under her dressing as well. And they say they'll gradually start to sit her upright-- inches at a time, with much care and time between movements. The ultimate goal here is to prepare to remove the lumbar drain-- this is a crucial part of her recovery, due to how it could affect that ever-important brain and spinal fluid retention (and the subsequent risk of swelling). She can't leave the Neuro-ICU until the lumbar drain is out. That's the Docs' ultimate goal. Leslie's and my goal is to have her sitting up enough to be able to watch the Colts vs. Patriots tomorrow at 3:30 CST. (Not CDT) (Don't forget to set your clocks back tonight!) Believe it or not, she actually brought that whole thing up before her surgery. She's making me set the DVR tonight, just in case she can't make it through the whole game.
Yes, your (our) prayers are being answered every minute. I'm not the least bit tempted to "slack" now, though. My focus in prayer is gradually progressing from matters of life and death, and on to the minute-by-minute (and eventual long-term) comfort, emotional, and physicall wellness of my wife... for whom I can't do another single thing right now. UGH! I can't wait to be back in there first thing in the morning just to watch her get better again.
To continue to say thank you again to you all for your prayers and support doesn't do justice to the swelling of love I have for all of you right now... but what else can I say? Thank you. I am truly humbled and grateful. And-- excuse my greed-- please keep praying.
Good night. (indeed!)
-Tyson

Saturday, November 3, 2007

Beautiful Day in ICU

I got a call from Dr. Zender from his cell phone this morning, as I was approaching the hospital parking garage. Leslie had a great night, all things considered. They're monitoring the swelling around her brain continually, and trying to keep all air out of the action. From what he told me, some swelling and fluid retention is actually necessary for things to settle back into place properly. So, both fluid loss and excessive swelling are both dangers, but so far, she's draining wonderfully. No seizures, no fever, no air in her head (no one ever accused her of that-- except maybe for the first few months after giving birth to TJ), and no surprises. They just started administering the first of 2 units of blood, which they say will help her feel a little better. She has very little pain (thank you narcotics), but is very uncomfortable. Periodically, I get to swab her mouth with water and put lip balm on her-- she can't drink or have ice chips yet, due to the risk of air getting to her brain when she swallows.
The care here is phenomenal. Her nurses, Suzie and Maria, are wonderful and kind and are quick to fill the slightest request. I got a laugh from Leslie when I suggested I'd really have to "step it up" when we got back home, or we just may have to take a couple of these people home with us.
Leslie remembers almost all of our conversation last night, which goes against all of what the doctors had suggested. Although she asked to hear all the details of the surgery again, I think just for reassurance. She's even more responsive this morning than she was last night. Praise God! She can't really open her eyes much due to the swelling, all the tubes and drains and dressings, etc.. but when she does, I definitely see our Leslie in there. And when she musters up the strength to talk, she's full of life, and this is encouraging. In fact, she sends the following message to you all:
"I don't recommend this to anyone. There are better ways to get a face lift." Tyson

On My Mind......

I was awake at 2:00 a.m. with thoughts and prayers once more for Leslie & Jessie (another young lady going through a very similar journey) and their husbands Tyson and Mike.
Michael Buble has a CD that I love to listen to. They mainly are older songs redone by a younger man. Although, it is not a Christian song nor is the whole song one of importance, but the chorus I keep hearing over and over in my head.

The words go like this.....Cuz, you are not alone....I am always there with you...and we'll get lost together......till the light comes pouring through....

At 2:15 a.m. I wrote in the blog then changed my mind deleted and went back to bed. It is 11:00 a.m. the words are still here and I keep thinking of the love that Tyson and Leslie have for each other and how they have opened their hearts for all of us to read and feel. They have abundantly shared their love for God and faith in him.

I know many of you have shared with me how Tyson and Leslie's writings have made you think more about God, relationships, prayer, and life. Please continue to pray for them. Your support means so much. For those who have asked for their address - it is located in the lower left column on the blog site.

Don't miss an opportunity.....tell someone how much you love them!
vm

Tyson's Goodnight

It has indeed been a good night. I just spent a little while with Leslie. While she looks like she's just been through... well... brain surgery, she is actually quite responsive, even showing glimpses of her sense of humor- smiling and chuckling a little, cracking a joke at my expense. I spent a while telling her how well everything went, and how good of shape she's in and how much the doctors love her... and then I stop to ask if she wanted to hear all this. She nodded and smiled and said, "I'm just not sure what I'll remember in the morning". I told her I'd be elated to give her the run-down all over again then. After a few moments of silence, she told me that her head hurt. I told her that was pretty understandable considering... she didn't laugh at that one. So I got the nurse and they administered a little more morphine.
The ICU nurse is willing to "flex" a little with the visiting rules. They really don't want me sleeping in the bedside chair, and they insist that the best thing for her is a good night's rest, but they grant us that family support is important to her recovery and are sensititve to the fact it's been a very long day. That said, they're willing to turn a bit of a blind eye to the clock, curfews, time limits, etc...
I talked about all that with Leslie, trying to encourage her to sleep, and she suggested I eventually go home and get some sleep, and that she'd be okay (with the help of a little more morphine) if I'd just come back in the morning. Her mom and dad are in with her right now. I'll go back in after a while to say good night. I wonder if she'll remember any of our conversations in the morning-- or even into the night. I will pray against loneliness and fear all night, even as I sleep-- or half-sleep.
I look forward to sharing her progress with you all in the morning. Until then... sweet morphine-laced dreams, baby doll. And to you all, as well (except for the morphine part). Tyson

Friday, November 2, 2007

Out of OR...Into ICU

Both doctors have come by in the last hour to "recap" the surgery. And Leslie is now in recovery. I'll be able to see her in about an hour, but as Dr. Zender said, she may not remember anything I have to say in the morning. (If Leslie were coherent enough and present for that conversation, she'd have made some comment about the tables now being turned.) :)
You may tell from my slap-happy tone that we've just concluded receiving a series of good bits of news concerning the surgery over the past hour or so.
First Dr. Prabhu came in again when he had finished "closing her up". And then Dr. Zender called me over to the area outside of Recovery to confirm the good news. In the words of Dr. Zender, "The surgery could not have possibly gone any better than it did." The tumor (in all, the size of 3 walnuts) that they extracted did have the same cancer as what the ENT removed a couple weeks ago. HOWEVER, there were "negative" (no-cancer) readings from all the tissue which they removed from around the tumor. The point of biggest concern was/ still is the area behind/above her left eye. Dr. Zender did remove the thin bone (or what the tumor hadn't already worn away) behind her eye-- I believe the bone is called a "pareorbital", or something along those lines. The bone did not APPEAR to have the cancer in it, but they are sending it in for more testing, since it was such a point of concern, initially. But the Doctor was quick to add that he saw no real signs of cancer in what he removed. To re-state what Dr. Prabhu told us during my last entry, things are "clean". And again, (just because I LOVE to read these words roll off my keyboard...), "things could not have gone any better than they did".
What now: She has a post-op CAT scan shortly, (she is still in recovery for the moment) to confirm the success of the surgery. I'll most likely be able to see her once-- maybe twice, in 15 minute segments, with an hour between "visits". She will most likely not be very coherent. They're telling me that ICU (where she will be transported following the CAT scan), closes at 8 or 9, so she may be alone overnight. I need to fight/ confirm this, but that's as it stands for now.
She has a few tiny "plates" which are more like "screws"-- the size of a watchband screw-- which are fusing her cranium back together, where they had opened her up for surgery. She has a "trumpet" (to prevent air getting to her brain) and a feeding tube both in her nostrils, and a "lumbar drain", which they had prepared us for, in her back. This drain is to allow excess cranial/ spinal fluid to leave her body without build-up or brain damage-- which are collectively one of the largest concerns moving forward.
So, it appears to have been a success. The "unknowns" are now fewer, and much more "manageable", but some danger is still lying in the days and nights that await Leslie. We are praying against build-up of this spinal fluid, or improper "settling" of the brain into its proper place, which could both cause brain damage. We are praying against blood clots, which are always a possibility in recovery, especially with this kind of surgery. Praying against fever, air leaking into the cranium/brain, or other similar recovery-relate complications. While these things are all risks, the hospital's best will be monitoring her 24/7 in ICU for the next 4 days, taking all precautions (and swiftly responding if necessary) against these risks. And I'm increasingly confident that God will be faithful to complete this "good work" he started at 6am this morning... complete healing of Leslie from cancer.
I'm tired. I'm wired. I can't wait to go in and see my wife. Thank you all for your prayers which have sustained us over the past week(s) and day(s). As a side note- I hear a word from church that there was a group of people meeting in the church office between 11 and 1 today to pray for the surgery... coincidentally (or more likely, providencially), this was the precise period of time in which the most complicated/ dangerous portion of the surgery was taking place. (And you just read how successful that part of the surgery was.) Another testiment to the power of prayer. "Smarter" people than I may be able to explain such things away as the "laws of nature", "luck", "modern medicine" (which itself is a miracle, in my opinion), and "self-fulfilling prophecy", but we "fools" know better. Please, keep praying! :) And I'll keep the updates coming, as I have anything to offer.
-Tyson
p.s. Dr. Prabhu's summary of how Leslie did/ is doing in/ post-surgery was priceless-- but not surprising to those who know her. His quote: "She did wonderfully. She is an angel."

1:00 pm....no news

Everything is progressing according to plan. They're calling me every hour or so. The conversation has been consistently brief and positive. "Just calling to let you know she's doing great!" I ask them to rephrase about 2 or 3 times... I just can't hear those words enough... "She's doing wonderfully," "everything according to plan," etc..., the OR nurse will rephrase, give a reassuring and understanding laugh, and then we'll hang up. So that's the news, for the most part.

--NEWS FLASH--

Following a 5-mintue pause... and another minute to let out some tears of joy and relief and other mixed emotions... Dr. Prabhu, the Neurosurgeon assisting Dr. Zender, just stopped in to talk to us. The craniotomy and tumor removal have been very "successful". He was just getting ready to "scrub back in to close her up", and re-stated that everything looked very "clean". That (along with his demeanor/ body language) calls for a huge HALLELUJAH! Back in the pre-op consultations, the doctors had often mentioned that things like follow-up treatment and chances of "recurrance" of the cancer were highly reliant upon how "cleanly" the surgery went (that is, how completely it could be removed, how embedded the tumor is into the bone tissue, how much tissue they would have to leave behind due to proximity to critical structures, etc...). SO... to see Dr. Prabhu smile with his eyes half-closed, nod lightly and say softly, "she looks very clean", and then repeat, "it is very clean in there".... again, I say, HALLELUJAH! He's now probably back in "closing her back up" as I finish typing this.

Next update will most likely be when she gets to recovery-- perhaps in another couple of hours...

Thank you all, and praise be to God for his sovereignty and mercy, goodness, and grace displayed in that OR. I'm humbled to consider how easy it is to praise Him upon hearing the good news. I can only hope that our faith will prove equally as strong in the midst of what may face us in the coming hours, days, weeks, and so-on...

10:00 a.m.

10:00 am

We're in the waiting room. (Leslie's mom and sister, and 2 of my "boyz" from church), I got a call an hour ago saying they had "begun", that Leslie was "doing great", and that they would call with hourly updates. I'm not the least bit "freaked" about not having heard from them right on the hour, here... I'm sure if there was something worth updating me on that they would. They hope to be wrapping up the main "surgery" portion of the day around 2 this afternoon-- revovery, etc... to follow.

They wrestled us apart at about 6:30 this morning. We were here a bit before 5:30 for registration. We were quite disappointed to learn that I could not accompany her to her initial anaesthesia. The plan was that I would basically be by her side until she was drugged beyond the point of caring. Didn't quite work that way, so that was an emotional revelation. But we made it through, and she had a determined and peaceful smile on her face by the time we finally parted. I'm holding on to that image of her until I see the same smile on her face in her hospital bed.

Thank you all for your prayer today. I will most likely not post hourly, unless there is "breking news"... so as it is said, in the meantime... "no news is good news". If it is such, I will simply give the "recap" when she comes out of surgery. Tyson

Surgery Update

As I type, Leslie is in surgery. The surgeons are in the brain and they have not seen anything unexpected at this point. The surgeon for the sinuses is taking over and they presently expect to be done around 2 pm. At 5 pm they hope she will be in the recovery room.
Tyson said that Leslie was very strong and in good spirits when he had to leave her. Please
continue to pray and we will keep you updated as soon as we get calls.
ginny

Thursday, November 1, 2007

final countdown.......

The seconds are ticking away. They cannot be stopped. Yet, I have joy today. I have read more books with TJ than I can count, and we had a great breakfast at the airport restaurant.We just found out that we are to be at the hospital at 5:30 AM tomorrow. At least if we can't sleep we can get a move on early. I figured as much. I'm nervous, but I am ready to get on with my life. I have a boy to raise, a husband to love, and a God to praise. I have a house that still needs painted and decorated. I have a scar that will need healing, hair that will need to grow back, and a body to nurse back to health. Let's get on with life already!My prayer is for no surprises tomorrow, unless they are good! I pray that the clock will tick more quickly than usual for the sake of my family who waits. I love you all and thank God for His provision and strength through you.Leslie

and again...peace

Thank you, Father for your Body, your church, our brothers and sisters. Not that I need reminding, but in them, again you reveal your goodness and love. You are truly good. In all things, your love endures. My prayer tonight is for Leslie to be drawn into that perfect love, which drives out fear.----A group of friends from our church just left. They came over to pray with us. We laughed and cried and prayed and just hung out for a while. God is good. Those words keep ringing through my ears. Each time, drawing a little more meaning into my heart and mind. In ALL things, He is good. And He is love. It is not hard to see His goodness, even in the midst of what seems to be the greatest hardship we've ever had to face. Even tonight, I am nearly overcome with joy and my heart yearns to sing of His mercy and love.Thank God for His peace (and truth and love and grace and so-on) that surpasses all understanding.Thank you all for your prayers. Tonight (and so many times over the past 2 weeks), we have physically FELT your prayers-- blessings from God as a response to the chorus of requests from His children. I am truly humbled by your love (or God's love in you) and support. Pardon my weakness and audacity to ask for-- even rely on-- even more of the same over the next 48 hours... and maybe 48 days. Every hour and every day, that "song" ringing deeper... God is good. And He is love. (or as the David Crowder Band more poetically puts it in a song we had played at our wedding...)This is the place I've knownHere in the arms of the One who lovesDeeper than anyoneHis are the hands I've grown to trust.This is the place I've knownHere in the arms of the One who lovesFarther than I could runHis are the hands I've grown to trust.And I believe...His are the hands that spread the skyHis is the love that gives me lifeHis are the broken, the needy onesHe is the love He is the love! Tyson

WE CAN DO THIS.....

Okay, I just needed to write a little while I am feeling strong. I have hope today, at least at this moment, that I will get through this. People get through trials like this all the time. That doesn't make it easier in the moment, but it gives me hope. We will laugh again. I won't always feel this anxious. Tyson will be back to his goofy self. TJ will stop asking if the ambulance is coming to our house and if I am all better. Our house will have peace once again. Tyson is taking good care of me, and my friends and family are making sure I am not alone. The phone has been ringing, and TJ and I were out all morning playing with good friends. Now it's time for the long afternoon nap. Time to check out for a bit. Leslie