Leslie's Journey.....

Thank you for being a part of the journey.





































Tuesday, April 29, 2008

Whew!!!

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

Monday, April 28, 2008

New Hope

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

Friday, April 25, 2008

Scoped.....

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

Thursday, April 24, 2008

How long can you go?

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

Tuesday, April 22, 2008

Enough is Enough..

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

Friday, April 18, 2008

Progress and pneumonia..

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

Tuesday, April 15, 2008

Whew

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

Monday, April 14, 2008

Another opportunity....

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

Friday, April 4, 2008

Spring IS here!

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