Monday Update

Update from OSF, I am breathing better and off of oxygen most of the day.  I've made a few walks in the hall.  There is something weird going on with my hemoglobin since I've been in the hospital that they haven't figured out yet.  So one step to accomplish tonight is to make it through the night without oxygen. The second thing is to figure out why the hemoglobin is down.  I'm not sure yet how long Ill be here but feeling a lot better.  My talking is finally starting to come back.  Last night was better and today has been better yet so I am really thankful for that.  I still cant talk on the phone but can have a conversation at least.

Thanks for your prayers,
Derek & Leann

Room Transfer

Good Morning,

I'm thankful it's Sunday.  Derek was moved to an intermediate room, and we are expecting Derek's brother, Brent, and Lexi this morning to listen to services together.  We haven't seen a doctor yet today.  During the night, the nurse encouraged Derek to go back on the mask oxygen for a few hours while he slept, and it may have been what helped his heart rate slow down to a normal range.  I'm thankful for that.  Still no word on the estimated length of our stay.  I would love to get Derek home.  I feel like he's out of the woods, but it still takes two to transfer him.  He's also on the nostril oxygen, but lots of people do that from home.  There's just small fears in me that he'll contract something else while here.  I keep praying about it. 

I hope you all have a blessed day of worship and praise.  God who created heaven and earth is very worthy of our amazement of Him.

Love,
Leann

Derek's doing better

Today, Derek was moved from the mask oxygen to just the nostril type.  He maintained his numbers well, and has had visitors and been a little spunky.  Wesley came over to see us and other visitors, all a joy.  Although I'm replaying yesterday afternoon in my mind and wondering if I should have done anything differently, I think he is in the best shape possible after having aspirated like that.  The CT of the chest diagnosed it as pneumonia or pneumotitis.

Now, we just have some regular hospital policies to live through...the pretest for eating (x-ray to make sure g-tube is in right place), getting correct food cans for the tube, getting a walker (must go through complete PT eval first), etc.

Thanks for your prayers and we'll keep you posted.  We may be here a couple days.

Thankful to God for his provision.
Leann

ER visit

Derek woke from a nap around 1:30pm today vomiting.  He then coughed incessantly and became chilled and breathing was labored.  Dad Sauder and I brought him in to the ER and he has fluid in both lungs and is getting started on an IV antibiotic.  Please pray for us.  Thank you, Leann

Voicebox procedure

We got home tonight after having the voicebox procedure this afternoon.  We were looking at the weather forecast and decided to drive up Saturday instead of driving up Sunday afternoon.  The other complexity was not knowing my report time until Sunday after 8:15 pm.  That is just part of Mayos procedures.  Dad Sauder also decided to go with us when we knew the weather was going to be bad.  The good thing was that the roads were only bad for a few miles till we got through Peoria, then they were dry.  Lots of people where in the ditch on I-155 which is our first 10 miles.

Yesterday was a long day as we waited for bedtime to roll around.  I played a few games of chess with Wesley.  He is just learning to play.  After we listened to church we went to Applebee's for lunch/supper.  We took all the kids along and they did pretty good.

The voicebox procedure went fine without complications.  After the swallow study on the last trip, the surgeon could see that all he needed to do was the injection, not the dilation.  I checked in a little before 11, and we were on the road by 4 this afternoon.  This was a simple enough procedure there is more time spent in preop than in the actual procedure.  So he used a needle to inject collagen into the right vocal cord.  The goal is to make it larger so it closes against the left side better.  I'm not supposed to talk for the first day.  Then I will have a weaker and hoarse voice for 2-4 weeks.  Then it should be better for 3-6 months.  After that it is unknown whether the improvement will continue or fade away.  Dr Ekbom hopes it helps my swallowing too.  The voice he fully expects to be better.

Thanks for everyone's prayers.  I was surprised when the surgeon mentioned that he prays for his surgeries each morning.  It shouldn't surprise me but I guess it is just that I appreciate it so much.

We hope everyone has a good Christmas week spending time with families and remembering what Christ did for us.  It must have been humbling to leave the splendor of heaven and coming to earth knowing he would end up dying for us.

Derek & Leann

Voicebox Consult

We met with Dr Ekbom today.  His nurse used a scope to look at my voicebox so they could see what was happening there.  The right side only moves the slightest amount.  The left side is doing all the work when I talk.  This was what we expected since we had seen that before.  He recommended two things.  The vocal cord injection and a dilation of the airway.  Or I could do a permanent surgery but it is more invasive and I would have to stop the chemo for longer so we are going to do the less invasive route.  In some patients it lasts 3-6 months, in some it lasts much longer.  Tomorrow I need to do another swallow study as Dr Ekbom wants that to see where things are getting stuck before he does the procedure.  That is after lunch, and we couldn't get it soon enough to do the procedure tomorrow.  So we will have to come back up, probably the week of Christmas.  The procedure will be outpatient but they will put me under general anesthesia so I don't have to worry about my gag reflex.

Derek & Leann

Chemo is working

Good news at this checkup.  The scans show that the tumors haven't grown in the last couple months.  The tumors are less enhancing by the contrast as well which means that they aren't as active.  So the doctors seemed pretty happy.  And of course we were as well.  The doctors agreed to try getting off the steroid over the next couple weeks as well.  The doctors want to have the next scans in 3 months.

We actually are going back up next week for the vocal cord procedure.  This should hopefully help my voice be stronger and the swallowing better.  We couldn't get this done on this visit. They will inject the paralyzed vocal cord to make it close more against the left side which functions like normal.

We talked about the mental slowness and think that is due to one of the medications I was trying for the hiccups.  I feel that getting better so I tend to agree it is not the chemo.  I don't feel 100% yet but feel like I have more drive and ambition than I did a few weeks ago.

The stomach tube checked out ok as well.  I spent a fair amount of time talking with the nutritionist and she is going to change my prescription to 4 cans that I had been taking plus 2 cans of real food that are 300 calories each.  The hope is that twice a day I can do 1 of each (plus 1 each the other two times) and not feel as full and tired as the 2 cans (500 each, 1000 cal total) were making me.  I don't remember her suggesting these before but these new cans have chicken and vegetables and fruits in them instead of just sugary stuff.  I have lost some more weight and am trying to put it back on.

Thanks for all the prayers and support.  Just pray I continue to talk more and my brain continues to function better.  And thank the Lord that the chemo is working!

Derek & Leann

Eye better

Thanks for everyone praying for me over the last couple weeks.  I think it has really made a difference.  Things are going a lot better.

My eye was stitched shut for five days.  The dr had seen a missing chunk of cornea and suggested a stitch to keep it shut to help healing.  I didn't have any pain but it was very annoying to see out of one eye.  Plus I looked like quite the sight with one eye stitched shut.  Thankfully when I went back Tuesday it had healed and they could remove the stitch.  Since then I've been able to see clearly and that has helped my spirits quite a bit.

I can't explain why but I've been able to eat more as well.  I still eat small amounts and slowly but I have been able to eat more and that helps.  For some reason I lost some weight so I've upped the feeding tube regimen to five cans per day.  I am still figuring out the best way to get this down.  I feel pretty full.  I didn't realize I was losing weight till I started getting sores on my legs.  I have used the power chair some more even though I can still walk.  It has a good air filled pad that I can sit on without getting sore.

The hiccups have been gone this week and I'm enjoying that too.  I might get a couple an hour, which is nothing when they were coming 10-20 a minute.

I think my brain function has returned somewhat but it is not back to what it used to be.  I still feel like my personality is different but I can talk some.

We are headed to mayo on Tuesday for the next set of scans.  This should give an indication if the current chemo is working.

Thanks for all the support and prayers we feel.
Derek and Leann
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