Leslie's Journey.....

Thank you for being a part of the journey.

Friday, March 28, 2008

No news is good noews...

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!

Tuesday, March 25, 2008

Tuesday Check-Up

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

Sunday, March 23, 2008


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

Saturday, March 22, 2008

(Leslie's praises)

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

Tuesday, March 18, 2008

Birthday Home!!!!

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...)

Monday, March 17, 2008

One more night...

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...

Sunday, March 16, 2008

Day of Rest

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.

Saturday, March 15, 2008

Leslie Speaks...

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.


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

Friday, March 14, 2008

Off to new digs....

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


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...

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

Thursday, March 13, 2008


"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

Wednesday, March 12, 2008

Aches and pains

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.....

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

Tuesday, March 11, 2008

Vomit-free afternoon

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

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.


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...

Monday, March 10, 2008

Infected Bone is Out

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...


Late Start

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.

Sunday, March 9, 2008

Bedtime Stories.....

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

Saturday, March 8, 2008

Not this again....

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

Tuesday, March 4, 2008

Surgery Scheduled....Pray without ceasing

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

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