As our friends on our blogspot.com mirror site have noted... we're heading full-steam toward the more serious of the surgeries discussed-- full removal of the cranial plate and "bone flap" in Leslie's forehead. "The sooner the better". As many as 6-9 months before prosthesis "installation". Tissue certain to be removed from her back (muscle, skin and fat), to be used to line in the spot to be vacated by the dead bone pieces. There are the abridged details. Now (in my best Paul Harvey impersonation) the REST-- of the story...So the big-whig pow-wow yesterday was pretty amazing, really. Dr's Prabhu, Vandevender (bork-a-dee-bork), and O'Keefe (head of infectious disease--again, no space suit) all joined us with another resident and head nurse in the small consultation room at Loyola for quite some time. Dr. Prabhu was just trying to take EVERY possible angle to find a way to save Leslie's forehead. Dr. Vandevender was convinced (albeit compassionate and regretful to see the writing on the wall), that there was no other option, but open to debate. And Dr. O'Keefe was just kind of quietly soaking up all the details, reserving his judgment for the closed-door session that was to take place later that night, when they'd join Dr. Zender for the last-man-standing-battle-royale, to make a determination. We left the consultation with a small glimmer of hope that there would be a less-aggressive approach that may at least buy us some time to let the "good" tissue restore itself, but really, we knew what was imminent... the worst news that we'd feared all along. But we somehow left that meeting with a quiet sense of confidence... even peace. We sensed we were getting the best effort from the best minds available. And frankly... were finally starting to feel God's presence and peace. Even if the worst came to be... we'd be okay. It would be difficult... but Leslie will survive, and eventually, be feeling and looking some version of normal again.Apparently, the battle royale didn't take that long. All the 4 participants needed to see was Leslie's blood work, taken earlier that morning, which showed that the infection was no longer "dormant", but was starting to aggressively spread to the more healthy tissue. This explained the increased intensity of headaches, fatigue, and sinus drainage over the past few days. Dr. Prabhu was the one who called late yesterday. "The blood work shows that there IS infection in her body now, not just the bone flap. The entire flap will have to come out. And we'll have to do it soon... maybe even early next week." He sounded pretty matter-of-fact, but almost apologetic-- again, he was the biggest proponent of less-aggressive, more-creative "alternatives", but his dim voice was evidence that his hopes and ideas had proven to be fruitless.To confirm, we'd floated our case through a family/friend connection to another reputable reconstruction specialist down-state. After reviewing the data we had to offer, he acknowledged that there was no alternative he could think of... the bone flap (the entire "plate" of her skull) would have to be removed.So here we are. Awaiting a phone call scheduling this grotesque-- almost surreal science-fictitious-- surgery. We have already made plans for my mom and dad to pick up TJ and take him on a little "vacation" to Ohio, where he will be well distracted with all "Mimi's house" has to offer. Leslie's mom and sister will be on standby here. I'm covered at work with my boss and my salesmen-- just have to wrap up a few loose ends on Monday with a couple customers... Ha! Almost like we've done this before, or something... :)But again, although we're badly beaten and broken over the turn of events, we have a senseless feeling of peace and hope... confidence that "it will all be okay"... which can only be attributed to that "peace that surpasses all understanding", which our God has promised to those of us who decide to put all our eggs in His basket. Crazy how God's promises tend to pan out like that. We give him thanks constantly... mingled in with more pleas for mercy, and groans of grief-- even fear... but all contained in this senseless arena of inexplicable peace. Kind of like the feeling you get when you're having a horrible nightmare, and about to wake up... in that instance between sleep and consciousness, you still feel all the emotion associated with the dream, but you know that any minute you'll wake up... you're going to be okay... And then your eyes pop open, you take a deep breath, and get up to get a drink of water. Just a bad dream.In a perfect display of imagery that best encapsulates what I'm trying to say, we received a beautifully encouraging "sign" straight from our Counselor and Creator this afternoon. I was just returning home from some errands that I had to run during mommy and TJ's nap time. I've been feeling absolutely horribly, with some sort of nasty chest-and-head cold/flu bug. I was tired, achy, and miserable... almost loathing coming home and exerting the effort to even put together the meal that somebody from church was bringing over-- already prepared (again, a thank-you). As I turned into our driveway, here's what I saw in the yard...
(upper left corner)..............
In case it doesn't show up on your screen... somebody had come by in the afternoon and "planted" these wonderful little bouquets of purple and yellow flowers all over our snow-covered yard. In the front door, facing inward, so Leslie would see it next time she stepped out to get the mail or whatever, was a giant poster, finger-painted with all kinds of color and joy... "THINK SPRING!" "We love you and are praying for you!" It was so beautiful. We're leaving the flowers in the snow, for the neighbors to enjoy. :) God is here, among us, "...where two or more are gathered in my name..." And in Him, is this "senseless peace" that I'm trying to somehow put into words...The support-- spiritual, prayer, emotional, physical, etc...-- that we've received from our friends, our "blood" family, and our church family (not to mention new friends and strangers that have joined the party along the way) has been amazing, and again, humbling. We would not be able to "hold it together" if not for you all. And I hope you're not growing tired, because we're closing our eyes now, and barreling toward our next little "nightmare".We'll update with details as we have them. Off to play a little gueetar. I'm in need of a little worshipful musical expression...Tyson
Leslie's Journey.....
Thank you for being a part of the journey.
Friday, February 29, 2008
Surgery
Leslie and Tyson received word late last night that the surgery is needed.
Jeremiah 32:27 - I am the Lord, the God of every person on the earth. Nothing is impossible for me.
Prayer warriors all over the world we are asking you to pray - pray for a miracle - be consistent and persistent in your prayer.
thanks ~ginny
Jeremiah 32:27 - I am the Lord, the God of every person on the earth. Nothing is impossible for me.
Prayer warriors all over the world we are asking you to pray - pray for a miracle - be consistent and persistent in your prayer.
thanks ~ginny
Thursday, February 28, 2008
Many Thanks
Thank you all so much for the prayers and thoughts. We have been humbled to the point of tears today, reading your comments-- from brothers and sisters in Christ, but otherwise strangers, scattered across the country. We have truly felt our spirits lifted today for no explicable reason other than God listening and responding to your chorus of prayers. Thank you doesn't encapsulate how our hearts go out to you all... but what else to say...? THANK YOU. We will truly need you-- family and strangers alike-- in the coming weeks... Tyson
Update
There is not really too much new news to report. It was very good to meet with several of our doctors together to hear all of their different views and opinions. Prabhu is just sick about the whole thing. He is trying to find any alternatives other than this drastic surgery. O'Keefe (Infectious Disease Dr.) was fairly quiet through the whole conference. At first he said he didn't see any urgency. Vandevender felt the same way as Monday. The bone is dead and it needs to come out.SO, they are going to do more talking, with Zender as well. But, most likely they will open me up with the intention of doing as little as possible, starting with taking out the metal plate on my left side. If my bone shows any signs of blood and life, then they will try to treat me with more antibiotics. But, if the bone shows infection throughout with no blood supply, then I will wake up without it and will be on a new road of "recovery".If they do take out the bone, they assured us that they will put as much muscle and tissue behind my skin so that it won't be too concave. It may be 3 to 9 months before they put in a prosthetic. That will just depend on how long it takes my infection to heal. Vandevender told me that within a month of the surgery I should feel better than I do now, very close to "normal". Whatever normal is, that sounded pretty nice. He thinks that the infection is just draining through my nose right now which is keeping me from getting really sick. But the headaches, drainage, and tenderness I have been experiencing for weeks is definitely not normal, which I had just assumed before. (I've never had brain surgery before!! How was I supposed to know?!) All I know is I feel really crappy at this moment!OK, that was more than I intended to write. I will say that we are feeling more hopeful today than we were on Monday. God is protecting us. We will still be praying for a miracle, but we are also praying for God to prepare us for another hard road to travel. Please be encouraged that God is hearing your prayers!!! I am brought to tears with every comment, so many of which are from people we don't know. How humbling it is that God is waking people up at night just to pray for us! I can't express enough how grateful we are. Your prayers are carrying us through. THANK YOU! THANK YOU!! THANK YOU!!! leslie
Wednesday, February 27, 2008
The Plot Thickens
Dr. Prabhu called a little bit ago. If you recall, he is the neurosurgeon who tag-teamed with Dr. Zender for Leslie's last 2 surgeries. He is a very kind, gentle, and compassionate man who has been an angel of sorts throughout the process-- showing up at just the right time when we most needed to see the peace and encouragement his mere presence brings to a room. And he's always good for a kind word.Apparently, he has been in quite a bit of conversation with Dr. Zender, and Dr. Vandevender (the reconstruction specialist, pronounced van DEE ven derr-- all I can think is The Swedish Surgeon-- cousin to the Swedish Chef from the Muppets... "Bork-a-dee-bork... Furrst ya taken the scalpel...") It was a late night phone conversation I had with Dr. Zender on Monday night that triggered the collective brain-storm sessions...The news still fresh in our minds, we left a message with Dr. Zender on Monday, basically stating that he had some 'splainin' to do, in regards to this next step in the process-- forehead removal and what-not. Did he see this coming? Is this common? Is THIS going to be successful? And at this point, what does "successful" look like? And so on... Dr. Zender called back late that night and we had a "come to Jesus" talk. He could sense my fear and frustration, I'm sure, but I did my best to keep my cool and stick to the point-- reiterating our appreciation and comfort we felt with he and his staff... but basically asking that he refer us to someone outside of the Loyola network for a 2nd opinion. "Isn't there another alternative here???" We'd followed every bit of their advice and had been the model "patient" up to now... but what they were asking us to embark on now seemed overwhelming to say the least. The conversation went very well. It was like we were two old friends with a mutual respect and understanding-- neither offended by what questions or thoughts the other raised-- just wanting to get some resolution. "Chad" as he acknowledged himself in our conversation helped me realize again that, really, we were successful-- Leslie is alive and cancer-free. And we need to keep reminding ourselves of that. And then he went on to acknowledge that the "next step" we're talking about is unbelievably difficult, especially psychologically. "You've got a beautiful young wife, Tyson... This is going to be hard..." I knew what he was saying. It didn't make the thought of it any easier, but it was good to be reminded that, "hey, at least she's ALIVE." (And for that I have given thanks constantly over the 2 days since.) Anyway, Dr. Zender committed to giving it some more thought and research, and referring us to some good sources for a 2nd opinion, saying he would do everything in his power to make this all turn out "alright" for us. Good group of men these doctors are turning out to be.Anyway, after Zender hung up with me, he picked up the phone and began conferencing with Prabhu and Vandevender (bork-a-dee-bork), discussing creative alternatives and ideas, etc... for Leslie's case. Fast forward to tonight, when Dr. Prabhu called me to inform me of all of this deliberation. "Leslie is our 1 objective-- Drs. Zender, Vandevender, and mine." "I've been spending a lot of time thinking about Leslie's case, thinking about what we should do for the best results..." Apparently, my conversation with Zender stirred the pot a little, so to speak. And apparently, Leslie as a person causes everyone she meets to fall in love with her... even her cancer doctors to whom she might otherwise be another face (albeit a pretty face) in the crowd. They're doubling back and doubling their efforts. I'll take that as a little ray of hope and answered prayer, so thank you, God... perhaps you haven't turned your back after all. (I'm half-joking.)As you may recall, we have a 9:30 appointment with Vandevender tomorrow morning, to discuss the scheduling and logistics of 'the next step'. Dr. Prabhu will now be joining us in the consultation. And Dr. Prabhu wants to see some updated bloodwork, so we're going in early tomorrow so that they can look at current results before the 9:30 consultation.Bottom line is, while the aforementioned devastating forehead removal procedure is still on the table, and would in any other circumstance be the inevitable "next step", the doc's are digging deeper, now, looking for some more answers... and alternatives. I post this tonight to ask you all to pray. Pray for wisdom and insight. Pray that God reveals a clue-- in the CT scans, the blood work, the consultations... anywhere-- which might lead these brilliant minds to come up with an idea that will again make Leslie whole and healthy, with minimal "intrusion".I keep telling her, "I'm just so thankful to have you. And I'll take you any way I can get you... even without a forehead." "Easy for YOU to say," is her response. "It would be easier for ME to be in Heaven." She's right. But, we'd both rather just have her healthy, whole, original-forehead-and-all, here and now. Thus is our prayer tonight. Tyson
Tuesday, February 26, 2008
and after winter comes...MORE WINTER????!!!!
For those of you who know me well, you know how much I despise winter and LIVE for spring and summer. How appropriate that this has all been happening through a very long, cold, and never ending winter. However, for my family it doesn't seem like the winter will ever be over, in the aspect of this horrific ordeal. As I look outside I feel like my heart is very much like the ground. Hard, cold, and snow-covered. As many of you said, there are no words to describe how we feel in this moment. I couldn't even tell you what we need to hear to feel encouraged. I am begging God to make Himself known. To feel His presence. Peace. Explanation?! My tears will not stop flowing. My heart and my spirit are so broken to the point of needing to remind myself continually of my child and dear husband, my reasons to keep going through all of these surgeries and battling through each day. Don't worry, I won't go driving off a cliff or anything!!Again, my mind has not forgotten what is true, but my heart is struggling to believe it. God is still here. He still loves me. He has not left me in this mess to do it all alone. This is why I need the prayers of all of you. Your prayers will carry us. When my faith is too weak to believe, I need you to believe for me. Yes, God can still do miracles in any way He chooses. The doctor could be wrong in thinking that this infection has spread. But, whatever the case, I need you to pray when I am unable. And as Dr. Zender encouraged us to do last night, we will try to keep focusing on what has gone right through all of this. What could have easily taken my life, the cancer, is GONE! If God did that, He will surely do this. Won't He?!
Monday, February 25, 2008
Uncle
So when I was a kid, I was usually the "big brother", pulling and twisting the arm of the littler brother... "Say UNCLE!" I'd demand, until he conceded...And today, with a final gasp for strength, our prayer is "UNCLE!"Today we received the worst news since the "C" word was first uttered by our doctors. We are on our way now for an "emergency" CT scan to confirm what the doctors are almost certain to be... A bone infection that is spreading across, basically, Leslie's entire forehead.To summarize, the radiation seems to have destroyed the "good" tissue's ability to restore itself properly, and the blood vessels have not re-formed in the part of her cranium they had to open during her "brain surgery". And all the antibiotics in the world will do no good if they cannot reach their target via the circulatory system, through healed tissues. So the infection grows and spreads.Should the scans tonight read as they are expected to, we will be planning a surgery that compares in magnitude to her November brain surgery. They plan to basically remove all of the skin, bone, and other tissue from between her eyebrows and hairline (the entirety of the area affected by the radiation), and re-graft some skin and muscle that they plan on taking from her back. You'll note that I didn't mention bone. Medically, they cannot fit her with a "prosthetic" skull bone until the grafted tissue completely "takes" in its proper place, infection free, for around 3 months. Then, assuming all goes to plan (don't get me started on things going to plan), sometime this summer she could be fitted with a new forehead. All in all, we can hope and pray for a nice quick 6-month process until Leslie looks or feels anything close to what we can call "normal".We pray for healing... The miraculous kind that doctors won't be able to explain. But we admit our faith has grown weak. In its place, anger and fear. And fatigue. It's hard to admit this to a bunch of people that continue to compliment us for our "strength" and "faith" through the past few months. But as Leslie said, as she was crying herself to sleep a couple hours ago, "My strength is gone."So... if before we were being "lifted up in prayer"... now it's time you start dragging us along in some more of it. We're off to get that scan now...Tyson
Asking for Your Prayers
Tyson and Leslie met with the Dr this morning. I am sure they will give a detailed updated, but I am asking for you to pray for them. Pray for the infection to leave Leslie's body. Pray for healing and wisdom. Pray for
strength. Pray, pray, pray
Thank you
ginny
strength. Pray, pray, pray
Thank you
ginny
Consultation
I just wanted to make sure people knew that we will be meeting with the Reconstruction Specialist Monday (tomorrow) morning at 10:30. Please be praying for wisdom for all of us. My headaches are getting worse again so if getting these plates out will help that then the sooner the better. But, a healing touch from God with NO surgery would sure be great with us! We will give an update after our appointment tomorrow.Trying to not be discouraged. Leslie
Wednesday, February 20, 2008
"it ain't over....."
Those were Leslie's words to me about 2 hours ago, as we were putting on our coats, getting ready to leave the consultation room at the cancer center where we met Dr. Zender today. She was forcing a half-smile and fighting back tears.The good news is that all her stitches are out now. They were just about driving her crazy these past few days, so we're glad for that. And the doctors say her open wound on top of her head is healing beautifully, to the point where she doesn't have to wear the stretch gauze around her head anymore-- another huge blessing, as this was the source of much discomfort and perhaps even the headaches over the past few days.You might have guessed from my foreshadowing, but there is some bad news today. Dr. Zender's not altogether happy with how the bone is healing. He's not sure if it's more infection, some other kind of irritation, or the body rejecting the plates. But apparently, the damage the radiation caused her body is preventing proper healing in the areas most affected by her past two surgeries-- around where the plates are. Now, the 2 plates that they left in after this last surgery, (she originally had 4 after the "big" surgery), seem to be developing some problems with the bone in which they're embedded. And we're still not 100% sure things are right with the areas they removed the other plates from a few weeks ago.Dr. Zender's not yet saying there is another surgery in our near future. "Let's not go there just yet..." he says, when I inquire as to the possibilities. But we are setting an appointment early next week with ANOTHER specialist, Dr. Van Der Veeter (or something like that), who is a "reconstruction specialist", to see if HE has any recommendations... do we "wait and see" or "nip and tuck" a little more-- start removing and reconstructing the affected portions of her cranium.All that to say, it's been a very difficult day. We both feel angry... but we're not sure at what, or who. I think it's just "angst" in general. And quite emotional. Kind of beaten-down, maybe. We were really hoping and praying for some good news today-- "infection clearing up, back to life as usual any day now," etc... No such news. And now our prayers are kind of loaded with statements of our momentary displeasure with God's sovereignty and where it's leading us. Again, in Leslie's own words... this just ain't over yet. And again to quote her, we're "just not okay with that."much to pray for, eh? Thanks in advance.Tyson
Wednesday, February 13, 2008
Just some facts.
After a ton of sleeping and taking it easy, I am beginning to get some energy back. I had several good days in a row with very little pain and a fairly positive outlook, until sometime yesterday when I got a terrible headache that didn't seem to want to go away until just a few hours ago. I don't know why it came. Don't know why it left. But, I'll take what I can get! We met with both doctors this week for follow-ups from surgery. Both of them wanted us to know how very serious bone infections are and how difficult they can be to get rid of. They were optimistic, but they did say that there may be more steps to resolving this issue (MORE SURGERIES) IF the antibiotics don't work. PLEASE BE PRAYING FOR THIS SPECIFICALLY!!! The thought of more surgeries and dragging this out for months to come is unbearable at this point. I am feeling better about things tonight as I realize there is nothing more I can do than seek the Lord and take care of myself. It's time to start living again regardless of what lies ahead.Emotions are all over the place these days. "Excitement" as I see my "self" starting to emerge. "Fear" at the thought of this not being over. Anger, grief, frustration, and even somehow joy creeps in as well. It has been a crazy ride.Please be praying especially in the next week for healing of my incision and some extremely sore places in my head. (These are where the other plates are located, where they drilled holes in my head, and for some reason they don't seem to be healing.) Dr. Zender said the best way to tell if the infection is dying is if there is healing because "Healing can't occur where there is chronic infection." He will be seeing me again next Wednesday to assess things. Also keep praying for increased energy. My sweet boy is home, and he is VERY excited to be here! My mom went home today, so tomorrow I am going to attempt things on my own. I've got back-ups, just in case, but I am really wanting to see if we can get back into the swing of things.Pray for the return of my sense of smell. We were told yesterday that there is a "slim chance" this will ever return. It may be years or never! This was very sad for me to hear as I have realized over the last few months how much I enjoy smelling, my son and husband being at the top of the list, but food, flowers, etc. too!!! Thank God for continued healing from my radiation. My eyes are no longer tearing. My skin is looking much more healthy. My energy is increasing. MY CONGESTION IS DECREASING!!!!! The main "major" side effects, internal damage to my blood vessels and skin, is still needing to improve. This is what will also help the rest of the healing occur.As we try to accept where we are at this moment, we will continue to trust that there are brighter days ahead for us. Leslie
Thursday, February 7, 2008
Winter Storm
So this week has been a perfect match with the weather. Like a fine merlot with a great steak. Outside it's a slushy mix of snow, rain, and sleet. Not a drop of sunshine. But pretty quiet, and unusually comfortable, temperature-wise, considering... And it's not like I'm having to drive in it or anything (I called my boss and told him I'm basically staying in the "bunker" for the week). The rain hasn't melted all of the foot + of snow that we had late last week, so it's a pleasant view of the neighborhood outside Leslie's bedside window.Is it good weather? By no means. Pretty miserable really, according to popular opinion... but we're enjoying what we can of it. Hot coffee, warm socks, some peace and quiet, a nice view... And sleep... Leslie's sleeping close to 20 hours a day. Only getting up once or twice to eat some cereal, or to have me wash her hair and change her dressing. Last night we played cards in bed for an hour. Compared to "last time", she's really pretty comfortable. Just extremely exhausted. She's breathing better every day, the swelling leaving her face and sinuses. It's occurred to us in several conversations over the past few days that this surgery, and the details thereof, are a bit of a mystery to many of you. So, here's where we are, and how it happened (the weak-stomached among you may want to skip the rest of this paragraph.) The wound, as it turns out, is significantly worse than after the last surgery-- she basically has a 3" by 1" swatch right on the top of her head where here skull is exposed, which we're keeping dressed with an extravagant multi-layered rig as the doc's had instructed. The skin they removed in surgery that was damaged by the radiation was actually right along her hairline (a 3" x 1" swatch)... they basically then cut a circle of shaved scalp about the diameter of a softball, rotated it a bit, and pulled it down to cover the exposed and infected bone on her hairline... which of course left the bare spot of exposed bone further back, on top of her head, where the skin and bone are much healthier, will heal faster, and where there is much less chance of additional infection-- especially with the doses of antibiotics she's pumped full of. What pain she feels is more of the "surgical", deep pain, and the wound itself is not really bothering her... except the itchiness of the couple-dozen stitches holding the "circle" of scalp they cut in place.So, to paraphrase (and censor) my dear wife... "This is NOT 'just an outpatient thing'", as Dr. Zender made it out to be. We know now he was just trying to downplay it, to keep our spirits up... that this would definitely NOT be as bad as the last surgery. He was right. But we find ourselves struggling between enjoying the relative comfort and restful week, and battling frustration and discouragement. The wound will takes weeks if not months to heal. And the hair, years to grow back. She's lost 15 lbs since the beginning of all this, and she was rather petite to begin with. She's weak, and she's tired... Oh yeah... and bone infections are pretty serious things (please continue to pray for complete healing and the success of her antibiotics.) But again, she's relatively comfortable... and herself. Thank God I have my wife back! But you can see, it's a mixed bag. Kind of like this crazy weather. Tyson
Monday, February 4, 2008
God flexes his muscles
So. Prayer works. Things were starting to get very discouraging, and our spirits were just starting to buckle under the heaviness of what seemed imminent. And then, God "showed up" (we know he never disappears, but you know what I mean). First, in little ways, like when Leslie was praying for a little "relief" with some "potty" issues, which are pretty typical when it comes to bed-ridden and narcotic-laced hospital stays. He granted her request for mercy wonderfully. He came through by giving Leslie a great roommate this time. And tolerable amounts of pain and discomfort. And so-on. Turns out He was just getting warmed up... I admit my faith was small and my spirit was battered about this whole bone infection and PICC line thing. While blogging last night, I almost left out even mentioning the remote possibility of there being an oral treatment that would negate the need for the PICC, if the tests came back just right. But Leslie made me add it before posting, suggesting we had some pretty solid "prayer warriors" in the audience who would be happy to know a specific request, regardless of the unlikely chances of a positive outcome. Thank God for His grace and active presence, even when my faith is weak. Leslie will be coming home today-- without a PICC line. Turns out the infection IS the one strain on the ID Docs' list of possilities for which there is an acceptable treatment in pill form. I feel like it's Christmas all over again. This is better than Christmas. My heart is still thudding, leaping with joy, almost to the point of tears, and we got the news almost an hour ago. Thank you, Father. You are good. All the time. But thanks for the powerful reminders in times like these. And forgive me for needing reminding. Tyson
Sunday, February 3, 2008
...discouraging news....
Rough morning. Leslie officially has some sort of infection and will be here "at least through tomorrow". She doesn't really feel all that different today. A little more congested. And a lot more discouraged. They're saying that most likely when she does come home, it will be with something called a PICC line, which is a catheter into her heart that is inserted through the skin in her upper arm. She'll need to be given an IV antibiotic through the PICC daily, maybe for the next month or two, as it appears as though the infection is in her bone in the area around where the exposed plate was. She should be able to care for TJ and get around like she normally would, as the tube and IV will only be connected to this PICC for about an hour a day while the medication is being administered. Adding insult to injury, they removed part of the dressing today, exposing the clean shaven front half of her head. And her wound. She was first taken aback by the incision, but really it looks much better than it did after the last surgery. But the harder thing to adjust to will be the new "do". Kind of Sinead O'Connor meets Kung Fu. Oh well, it will grow back ("easy for YOU to say" she tells me) and in the meantime she has all kinds of new scarves and hats to try out. And she looks so beautiful in spite of it all. Her face and eyes look more like "herself" than during radiation. I keep telling her how great she looks and she thinks it's just sympathy. I assure her that I would not lie to her about such a thing, although if I had a different opinion I may just keep it to myself. But in this case, I speak the honest truth. Now, there is a very slim chance that the kind of infection that she has is the one strain that can be treated orally with a pill. But we've been told not to get our hopes up. But we WILL be sending the prayers up that this is indeed the case.So yeah, we're quite a bit discouraged right now. The Picc doesn't sound like fun, and it looks like we'll be postponing the April trip to Florida we had planned. But we're very thankful that they're finding this now instead of months down the road when it would be a much worse situation.Needing your prayers,Tyson
*yawn*...
A quiet day in room 2343. Leslie's feeling pretty well, sleeping quite a bit. The infectious disease space men didn't even stop by today... probably waiting to see if the tissue culture is going to grow in the petri dish or whatever. We're hoping to see them in the morning, when they come bearing good news of her imminent release from the hospital. She had a little more swelling when I left her this evening, but her pain and discomfort has been manageable. An uneventful day, really. Praise God! :)We're hoping to bring her home tomorrow-- but that's up to the aforementioned infectious disease team. TJ (who still doesn't know that Mommy's in the hospital) will be coming home from my parents' place in Ohio on Tuesday... hopefully then fully recovered from the ear infection that we sent him there with. The poor kid. I find myself wondering if he'll remember any of this. Or if maybe he'll have this unexplainable subconscious fear of hospitals, doctors, and bandages when he grows up. Leslie will be wearing quite the head-dress when he returns, and he's been quite sensitive about "band-aids" on Mommy lately, so that should be interesting... Recently he's telling us that he will be a doctor when he grows up, and he will "take care of Mommy and Daddy's ouchies"... maybe even "drive us in the ambulance to the hospital". We're encouraging him in the endeavor. Sounds like a great retirement plan for us!Anyway... no real updates beyond that. Hopefully tomorrow is more exciting in a positive way-- with a homecoming and great news of big steps toward full recovery. She's doing well. Thanks all for the prayers. Tyson
Friday, February 1, 2008
The Game Plan....
The game plan
So it looks like we may be in the hospital for a couple of days. They're wanting to monitor her because of her currently high risk of infection. We're lobbying for a quick release-- like an early parole for good behavior. She's just feeling so much better. Better now than she did a couple weeks after the last surgery. It's hard to imagine trying to pass the day and stay sane for the next 48 hours in a cramped and not-so-private hospital room. I just want to get her home.
The infectious disease team stopped by for a while this afternoon. I was kind of expecting some space-men-looking folks with gas masks and big air-tight HazMat suits... kind of like from the movie Outbreak. But they were just normal-looking doc's. (And I was just a little disappointed.) They played 20 questions with Leslie, and then returned after a while with their "game plan". They're going to pump her full of their specially selected antibiotic cocktail, and do some more tests on some of the tissue they removed in surgery today, just to make sure there's no infection before sending her home.
Oh yeah... that reminds me... Dr. Prabhu was a "little concerned" about some of the tissue around one of the plates, and they did a biopsy during the surgery. All came back "clean" and "negative" as far as cancer goes... but now they're taking the same tissue and testing it for different kinds of infection.
Leslie's still feeling quite a bit better than we had expected. Very tired and a little nauseous. But still very alert and very much "herself".
Here's the lovely lady a mere hour after her surgery, earlier today... I was absolutely shocked about how well she was doing so quickly. So was she. Tyson
So it looks like we may be in the hospital for a couple of days. They're wanting to monitor her because of her currently high risk of infection. We're lobbying for a quick release-- like an early parole for good behavior. She's just feeling so much better. Better now than she did a couple weeks after the last surgery. It's hard to imagine trying to pass the day and stay sane for the next 48 hours in a cramped and not-so-private hospital room. I just want to get her home.
The infectious disease team stopped by for a while this afternoon. I was kind of expecting some space-men-looking folks with gas masks and big air-tight HazMat suits... kind of like from the movie Outbreak. But they were just normal-looking doc's. (And I was just a little disappointed.) They played 20 questions with Leslie, and then returned after a while with their "game plan". They're going to pump her full of their specially selected antibiotic cocktail, and do some more tests on some of the tissue they removed in surgery today, just to make sure there's no infection before sending her home.
Oh yeah... that reminds me... Dr. Prabhu was a "little concerned" about some of the tissue around one of the plates, and they did a biopsy during the surgery. All came back "clean" and "negative" as far as cancer goes... but now they're taking the same tissue and testing it for different kinds of infection.
Leslie's still feeling quite a bit better than we had expected. Very tired and a little nauseous. But still very alert and very much "herself".
Here's the lovely lady a mere hour after her surgery, earlier today... I was absolutely shocked about how well she was doing so quickly. So was she. Tyson
Quick & Easy........
Quick and easy!
We're already in a temporary holding room, awaiting placement into our "home" for the next couple of days. The surgery went perfectly. We probably won't be able to talk to Dr. Zender until later this afternoon, as he's currently in other surgeries, but Dr. Prabhu stepped out between Leslie and his next "case" to say it all went very well. They removed 2 of the plates (that her tissue was rejecting), "cleaned up" the affected area, and patched up the skin nicely. It went so well, in fact, that we'll be skipping the neuro-ICU unit altogether this trip! Leslie is a bit drugged, but very alert, converational, and very happy to be done and feeling so well... so well in fact that she just had a few tears of joy-- scared me for a minute-- I thought something was wrong. She can tell that they "cleaned her out" well, because she's breathing easier now than she has in weeks.
Praise God for his continued faithfulness, another "clean" surgery (no infection, everything as the Dr's had planned, etc...), and a relatively comfortable and recovering Leslie! In Leslie's own words: "...Easiest surgery I've ever done!"
Soon Leslie will be heading down to have an MRI, to confirm the Dr.'s assessment that they were as successful as they'd hoped.
Thank you all for your intercessions, thoughts and prayers!
We're already in a temporary holding room, awaiting placement into our "home" for the next couple of days. The surgery went perfectly. We probably won't be able to talk to Dr. Zender until later this afternoon, as he's currently in other surgeries, but Dr. Prabhu stepped out between Leslie and his next "case" to say it all went very well. They removed 2 of the plates (that her tissue was rejecting), "cleaned up" the affected area, and patched up the skin nicely. It went so well, in fact, that we'll be skipping the neuro-ICU unit altogether this trip! Leslie is a bit drugged, but very alert, converational, and very happy to be done and feeling so well... so well in fact that she just had a few tears of joy-- scared me for a minute-- I thought something was wrong. She can tell that they "cleaned her out" well, because she's breathing easier now than she has in weeks.
Praise God for his continued faithfulness, another "clean" surgery (no infection, everything as the Dr's had planned, etc...), and a relatively comfortable and recovering Leslie! In Leslie's own words: "...Easiest surgery I've ever done!"
Soon Leslie will be heading down to have an MRI, to confirm the Dr.'s assessment that they were as successful as they'd hoped.
Thank you all for your intercessions, thoughts and prayers!
Familiar Place........
Leslie was wheeled away about a half-hour ago. Probably being stuck with a needle full of her happy-juice right about now. This time, the pre-op, registration, and wheeling-away process was a completely different experience. We're tired, yes, and perhaps a little aprehensive, but there was a certain calmness this morning. There was this "Ah, this is nothing!" kind of attitude. She wasn't thrilled to be taken to the OR, by any means, but she was at peace and had a very calm and confident look about her. "See you in a few hours! Love you!" she said with a tired smile.
There's something almost nostalgic about being back in the neurosurgery waiting room. I feel like a seasoned veteran of sorts. Mildly annoyed that they haven't made the coffee yet this morning. Know right where the outlets are to plug in my laptop. Know where the bathroom is. Where to get a Coke if I want one... Thinking and wondering about Leslie-- how she's feeling, if she's asleep yet, what the doctors are doing at this moment... But with dry eyes and without the twisted knots in my stomach and throat this time. The surgery should take about 3 hours. We learned they'll have to shave quite a bit more hair than they did last time... so thanks in advance (again) for all the scarves, headbands, and hats that were sent over the past few months. After surgery, she'll most likely be admitted to ICU for a day, then a "floor" room for another day.
The weather is horrible, with about 8" of new snow on the roads this morning, so Leslie's mom may not make the trek up from Peoria today... and if she does it will be much later, after surgery, most likely. So no "entourage" or "cheering section" this time... we take up a lot less space... her bag of clothes, coat, and me.
We appreciate the real-time prayer support. I'll update as there is info to share. Most likely not until she heads to recovery... most likely around Noon CST. Until then...Tyson
There's something almost nostalgic about being back in the neurosurgery waiting room. I feel like a seasoned veteran of sorts. Mildly annoyed that they haven't made the coffee yet this morning. Know right where the outlets are to plug in my laptop. Know where the bathroom is. Where to get a Coke if I want one... Thinking and wondering about Leslie-- how she's feeling, if she's asleep yet, what the doctors are doing at this moment... But with dry eyes and without the twisted knots in my stomach and throat this time. The surgery should take about 3 hours. We learned they'll have to shave quite a bit more hair than they did last time... so thanks in advance (again) for all the scarves, headbands, and hats that were sent over the past few months. After surgery, she'll most likely be admitted to ICU for a day, then a "floor" room for another day.
The weather is horrible, with about 8" of new snow on the roads this morning, so Leslie's mom may not make the trek up from Peoria today... and if she does it will be much later, after surgery, most likely. So no "entourage" or "cheering section" this time... we take up a lot less space... her bag of clothes, coat, and me.
We appreciate the real-time prayer support. I'll update as there is info to share. Most likely not until she heads to recovery... most likely around Noon CST. Until then...Tyson
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