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
D

Update

Just a general update to keep everyone informed.  The last couple weeks has been harder for me.  i have struggled more with a few things.  I think the steroid gave me a horrible case of the hiccups.  I was originally on 4 mg twice a day but cutting the rate slowly to 2 mg seems to have helped somewhat.  I was also taking a medicine and tried to eliminate that a few days ago and they seem to be worse.  So I think the answer is going to be the medicine plus 2 mg dose of the steroid.  Sometimes changing positions helps, eating and talking are worse.  It could be 10-20 times per minute.  It's not painful but very annoying.  My stomach tube has been leaking worse and I think the hiccups are not helping it.

The biggest change I notice is in my thinking.  I feel like my brain is really slowing down quite a bit.  It makes me much more quiet.  I used to be more of a talker, I was always thinking and speaking.  It's been harder to go to church or work when I don't have as much to say.  And around home is the worst.  Leann is used to me talking for a couple hours each night and now I feel like I have nothing to say.

My talking is hard as well.  I think it's due to the facial nerve not working as well.  It's affected my tongue as well and I can't speak as clearly as I used to.  The volume is less which I think people would get used to but it's hard to slow down enough that people can make out what I am saying.

Then there is the sight.  Because my right eye doesn't close as well, the cornea is more irritated and dry.  This causes blurry vision unless I hold my right eye shut.  I've been sleeping with a bubble over my eye to keep it moist at night.  Im thankful I'm not actually losing my vision though. I've got appt later this week with a doctor, they might do some temporary weights to help my eyelid close.  The last couple days have been a little bit better, if anything this is improving.

The hope is that the chemo can work on the tumor particularly around the facial nerve and I can get some function back over time.  It's hard to know though what is causing what.  Is the chemo itself causing the brain symptoms?  If so, is it worth it?  The next scans the 3rd and 4th of Dec at Mayos will tell us if the chemo is stopping tumor growth or not.

I guess that is the medical summary.  From a spiritual standpoint, it's been harder as well.  I don't feel like my life is nearing it's end.  The symptoms have been harder to bear and some days are harder to endure through.  There are times when I feel like I just want to go home.  Leann is caught in a weird spot where she doesn't want to see me suffer but doesn't want to be without me either.  So sometimes we can find ourselves thinking if I just slipped away some night in my sleep, that would be good.  I have found that things of earth seem to fade away in importance.  I opened one morning to John 14 and that gave me lots of hope.  It speaks of Jesus going to prepare mansions for us.  It's hard to think of earth when you have this on your mind.

What to pray for?  A couple things that are most important.  The first is that I can find a purpose and usefulness to those around me as I see my function decrease.  The second is that I can be more talkative and my brain can have thoughts to share.  Thanks for all those who have sent cards or come to visit.   Sometimes I just lay down but have enjoyed the singing and visits of those who have come.

Derek & Leann

Mayo visit

We are on our way home after meeting with the oncologist and surgeon here.  The main new symptom I have been having is weakness in the right side of my face affecting my vision.  Things are blurry, particularly later in the day.  From the scans, they can see tumor along the nerve were it goes through a small hole at the skull base.  This area is not a candidate for surgery as the nerves are small and fragile.  The best hope is that the chemo works to stop the tumor from growing and the nerve could regenerate somewhat or entirely on its own.  There is an area of tumor around the brainstem but the surgeon said even that is risky and there appears to be no symptoms from that.

I've also started on a steroid late last week.  The headaches and pain are gone now so I'm thankful for that.  The steroid will reduce any swelling from the tumors.

My voice has been weak and sounds hoarse lately.  I had a sore throat last week but the surgeon thinks its more a function of tumor growth.

Next MRI will be early December.  We should know then if the pazoponib is working or not.  I've been on that about three weeks now.

It's been harder lately to keep my attitude as good.  I've been more discouraged as I feel my body decline.  Being harder to talk, I'm more likely to be quiet which isn't me so much.  The last couple days my sight is probably weighing me down too.  I don't want to discourage you, just be as open as I can so people know what to pray for.  Just pray my sight gets better and I can keep a good attitude.

Love,
Derek & Leann

Received Powerchair

Today, our family was excited to see Derek fitted into his new powerchair.  This chair is quite the amazing chair!  Some features include tilt, elevate, seat cushion adjustment, and tight turns.  We are very pleased with the service of National Seating and Mobility in Bartonville, IL, as well as our therapist Joann from Hopedale Medical Complex, and our insurance company Blue Cross Blue Shield of Alabama.

On the downside, Derek's facial nerve is being affected by the cancer now, and visually I can tell his right side of the face does not repond like the left.  He has also noticed some difficulty again in swallowing and talking.

We appreciate your continued prayers for us.

Love,
Leann

Started Votrient

On Wednesday we got word that based on my blood work, I would not qualify for the Phase II trail at the NIH in Maryland.  We were placing hope in that treatment, since it is new and if I could get in, quite a bit earlier than we will see it publicly.  The trial was based on the body's immune system attacking the tumors and involved a couple hospitalizations.  So that was quite a letdown to not have that option.  I think we just have to view it as God knowing it wouldn't work and sparing us the travel or for some reason he didn't want it.  Otherwise it's too hard to figure it all out.

I started then on Votrient, which is oral every day, 4 little pills.  I've taken it two days now and i'm thankful I can swallow them.  Crushing results in different and higher absorption, which can be done but they prefer not.  It's easier to swallow them than mix suspensions all the time.

As far as how I am doing, I still have headaches and neck/shoulder pain and stiffness.  Pain killers are usually controlling it.  There have been a few times where Leann has to help me get dressed because I cant bend over enough but that is rare.  I've been going to work still and Tues night was able to ride in the combine with the kids for an hour or two.  I'm still eating some, not always, and for sure not a lot.  But enough that it cures my desire for good tasting food.

Thanks for your prayers.  Please pray that I can endure whatever pain I have, and that God would take away whatever pain and headaches I do have.

Derek & Leann

Increased pain

Hello to all,

As always, we sure do appreciate your prayers!

Derek has had increased pain in the last couple of weeks.  He is on a tylenol / ibuprofen regimen with maybe one daily dose of a narcotic.  Of course, this has to be timed so that he doesn't drive 6 hours after taking it.  The pain is generally in his head and shoulder area, but many times is taken away by the medicine.  I'm so thankful for pain meds!  His legs have become weaker, causing him to move a lot slower.  This, however, does not slow down his desire for fellowship including us visiting others and others visiting us.  We are so encouraged by being with others.

We've received the Votrient (the next chemo drug prescribed) in the mail, and it is covered by insurance (big plus).  He has not started taking this drug, because in the mean time we heard of a clinical trial he may qualify for in Maryland.  This is run by the National Cancer Institute and is trial #08C0121.  It is specific to cancers which have spread beyond their original site and are not responding to treatment.  The first steps here are to see if Derek is positive for the HLA blood test marker A0201.  If he is, we can proceed to see if his tumor presents with the NY-ESO-1 protein.  If it does, then we can proceed to a 2 week initial screening visit to Bethesda, MD.  We are awaiting these first steps.  In order for him to be entered into the clinical trial, he has to be OFF of chemo drugs for 1 month prior to starting the study.  This is why he has not taken Votrient yet. The clinical study is ran by Dr. Rosenberg.  Here is a link detailing the study:  http://bethesdatrials.cancer.gov/clinical-research/cts.aspx?ProtocolID=NCI-08-C-0121

Also, part of my time has been devoted to obtaining a van (equipping it with a lift), powerchair, and discussing ramp options for our house.  My goal is to keep Derek as independent as possible.  He still loves his job, and is able to work at least half days.  He claims he can't remember as well and processes things slower, but in reality he still does just fine.  He keeps me in line!

We've enjoyed a couple weekend trips, church, finishing up the gardens, watching the pipeline come through the fields to the north of us, wiener roasts, and teaching our kids.  Lexi is still loving to read.  She's really improved on piano this year, and makes a few dollars "babysitting" Lainey while I get other things done.  She and Wesley have joined a choir this year, and I love hearing them practice singing in the van.  Wesley is using his slingshot to hunt, playing more baseball for fun, and he turned 8 last week!  Whitley is in preschool, and she can't get enough letters and numbers right now.  Lainey isn't quite walking yet, but she makes her requests known.  Her newest thing is climbing up on tables.  I'm thankful we are all sleeping quite well.

My Jesus I Love Thee, I know Thou Art Mine.  I'm so thankful for His shed blood that by believing we have eternal life.

Leann

September Update

The good news first.  I don't know how to explain it than your prayers.  My eating is getting better.  During August I was down to a couple bites once or twice a week.  I would go several days without eating or drinking.  Now I am drinking about 6-10 oz per day and eating dry salty snacks, spicy meats, soft fruits & veggies.  It's fun again.  The amounts are still small and I get my nutrition and fluids through the feeding tube still.  But it is good to eat a brat or part of a turkey burger and clean my mouth a bit.

The bad news is on a couple fronts.  I am having a harder time walking.  I am still using a walker but it's harder and I depend on it more.  The other thing is that the last week or so I have had almost constant headaches.  Ibuprofen and tylenol with a little narcotics is taking care of it but its more often than just weird occasions like it was in August.  My neck hurts more often too.

Overall, just pray for the headaches first and walking second.  I can do without eating if I have to but I credit your prayers.  I know that there is great power in the prayers of so many.  Because I feel more symptoms, I more often have down days.  I'm still smiling as much as I can, but it's getting harder.

Love,
Derek & Leann

Mayo scans

Praise The Lord, we are almost home.  The good news is that the lungs are fine as far as the pneumothorax ( lung collapse) is concerned.  The X-ray showed everything is fine.  We had a scare when the doctor got the dates confused but that was sorted out quickly.

As far as the tumors, there was some growth over the last couple months.  I am guessing it was 10-20 percent growth on bath brain, spine,and lung.  It is enough that the doctors say I should stop the current chemo and start a new drug.  They are going to work with insurance to try and get pazopanib covered.  This doesn't surprise me too much since I had noticed things like swallowing that got worse while taking this.  We asked about keeping on the current drug but sounds like their is a fair risk of reactions when drugs are mixed so that doesn't work well.

Overall we are really thankful.  It probably seems like a short term thing to worry about more lung collapse but I was lacking faith and strength to be away from the kids again.  So thanks for your prayers.  Just pray that I continue to have the strength to smile and serve God each day He gives me.

Derek & Leann

Hawaii

We are home!  We got home Tuesday night at 12:30.  Things have been busy getting back in the swing at work, hence a few day delay in updating the blog.  It's been easy for me to adjust to the time zones, hard for Leann.  There are 5 hours difference, so it's not trivial.  We had a great trip.  We did a lot, spent a few days doing nothing.  It took a while to learn how to relax again.  We were on the island of Kauai only, I think we saw it all either by car, helicopter, or boat.  The plants, mountains, and oceans are truly amazing.  Beaches were sometimes hard/sometimes easy depending on how wild the ocean was, how far to walk, how steep, etc.  I was able to snorkel a few times, the easiest was off of the boat.  The hardest thing was getting out of the ocean while waves crashed.  Thanks for all the prayers that we could have a good trip.

Next week is another round of routine scans at Mayo's, on Tues/Wed.  Hopefully it really ends up being routine.  We thought that the last two times and ended up in the hospital both times.  The chemo is going well, no side effects that I've noticed.  We'll find out from the scans if it's working or not.

Thanks for your continued prayers.  We appreciate them much.
Derek & Leann

Tube out

I finally got the chest tube out today.  We ended up running to mayos as it was taking lots of time and going to take multiple visits to get it done in peoria.  We are about an hour from home now.  It's nice not to have that valve hanging beside me all the time.

People ask me how I'm doing.  I'm still going to work when I don't have doctor appointments.  I wasn't supposed to be driving as long as I was taking pain meds.  I had been sporadic on that, I think the pain I had with this tube was low.  Overall it's been a little harder for me lately.  Swallowing is not going very good.  Some nights I try eating a bite or two but it usually makes me cough a bunch.  So some days consist of nothing by mouth.  We've figured out how to do all my meds through the tube which makes life easier.   I feel like my spirits are staying decent but Leann and I would say we are starting to get weary of the fight.  Lainey has brought a lot of joy to our lives.  Almost every time she sees me she says "daddy". We went to south bend this last weekend and she was the best traveler of all our kids.

We are looking forward to Hawaii next week.  It was our 10 year anniversary trip that we had to reschedule from march due to being in the hospital.  The doctor says no problem with flying.

Thanks for all your prayers and help many have given us.  We appreciate it very much.
Love,
Derek and leann

Re-adjusting at home

It's always an adjustment coming home.  I was released Tuesday at noon.  We made it home Tues night.  Wed was full just getting organized and Dr visits.  I came home with one tube still in place and a Heimlich valve on it.  The plan is to call back up to Mayo's once I have 3 consecutive days with no air leak.  They will probably refer me locally for removal.  So far we have 2, so we are almost there.  It's not hurting me too bad so I will probably error on the side of caution.  I'm taking a small amount of narcotic pain killers but the pain is low most of the time.  Today I'm actually working some from home again.

The sadder news is on the swallowing front.  I had them do the swallow test again to see why I am coughing after swallowing water or almost anything.  Turns out there is some aspiration and then I cough it back up in response.  There is debate about how much of this is due to disease progression and how much is because I swallowed less once the tube was put in.  I'm crushing my pills and working to figure out how to get the chemo into liquid form so I can use the tube.  Things like yogurt I can still eat, they are thicker than water and will go down easily.  This is hard for us as eating is such a social element of our culture.  The tube is working fine for me and I'm thankful for that.

Thanks for your prayers.  Just pray that we can accept and deal with the eating challenges.

Derek & Leann

Sunday Morning

Yesterday was a pretty good day.  The leak continued on one tube but not the other. So they took that tube out and I am down to a single chest tube.  It's still on suction but they will take the suction off sometime today or tomorrow.  Then if I can do no suction for a while, they will put the Heimlich valve on.  They will watch that for a little while before they release me.  Dr.Wigle said yesterday that he thinks Tuesday is probably the day I will be released.  We spent some time in the court yard yesterday.  It was hot to the locals but to us the humidity and temp are not that high.

Thanks for all your prayers.  Have a good day worshipping our Great God!

Derek & Lean

Friday update

Figured everyone wants to know what is going on and realized I hadn't said much since the surgery.  This time has not been as painful.  Not sure if it's due to the fact of only one side, or just luck of where they located the tubes.

During surgery they put two chest tubes in the left side.  Today they split the tubing out so they were each running to their own box so they could see which one the air leak was coming from.  So far we are only seeing the leak on one tube so if tomorrow is the same, they will remove the one without the leak.  The goal is to send me home with the other tube still in place and put a "heimlich valve" on it.  It is basically a check valve to prevent air pressure from building inside the chest cavity.  That would be removed eventually but I'm not sure when.

The doctor has said I will probably get out of the hospital this weekend or early next week.  Thanks for all the prayers for us this week.

Derek & Leann

Talked to surgeon

Dr. Wigle was in and said everything went well.  They did see some cancer on the pleura that was new since 3 months ago, but he said the burden of disease was not that great.  They did not remove any cancer this time, since they know what it is (no need to biopsy) and they know they cannot get it all.  He said it is a big possibility that we go home with a chest tube still in Derek to give the lung more time to stay adhered before pulling the tube out.  We are glad for that option, because it means we might not have to be up here as long.  The cancer saddens us.  Thanks for keeping us in your thoughts and prayers.

Just got in room 139A

I got to see Derek and he feels very little pain, just sleepy. He looks good, and has quite a few "attachments" right
now. The surgeon told him most of the time was spent clearing scar tissue since the lung appears to have collapsed 2 weeks ago. Then, he reapplied talc to adhere the lung again. Derek forgot to ask about if he removed any cancer this time. Thanks for praying. I love him so much!

Sent from my iPhone

In surgery

Derek entered the operating room at 8:16am according to the screen I follow in the waiting room.  Please keep him in your prayers.  I'll let you know when he is out.  The kids are at Dad and Mom Sauder's this time, and I am accompanied by Beth Wagenbach.  Thank you for all the help over the years we have been battling cancer.  God is faithful.  Love, Leann

Surgery tomorrow

I had a chest X-ray taken this morning and sent it to dr Wigle. He called to say the pneumothorax has gotten worse and he recommends doing surgery again.  He was open tomorrow and we couldn't see any benefit to waiting.  We were able to get things squared away around home and are leaving now for Rochester.

Sunday and today was the first I've felt any symptoms, just slight shortness of breath as I was talking or walking.  But I would say effects are still mild.

Obviously we are sad to be going back in the hospital again.  It's hard on us to miss so many things this week.  But we just take one day at a time.  It's good Leann is a spontaneous person.

Derek & Leann

On our way home tonight yet

We got out of ER in time to get to our appt with Dr Buckner.  He showed us the MRIs and the cancer spots have grown.  There is a spot on the lung that is 3/4" in size which is alittle larger than april.  The brainstem and spine also show growth of cancer in a few areas.  Nothing that warrants immediate attention but its not good news either.  His plan is to see what changes from today forward 6-8 weeks.  The reality is that a large portion of this time I was on nothing as have only been on Zolinza for 2 weeks.  I haven't felt any side effects to the Zolinza as of yet.

Thanks for your prayers.  I would just summarize this visit by saying its a reminder to take one day at a time.

Derek & Leann

Released from ER

Dr. Wigle (thoracic surgeon) released us from the ER.  He is saying that because Derek is not having symptoms like shortness of breath or chest pain, he would not do anything at this time with the pneumothorax.  He didn't know if the pneumothorax was getting better or getting worse with just a one-time snapshot.  The upper lobe is still fully inflated, but the partial collapse of the lower lobe is what showed up on the CT.  Derek's case is unique, because most people don't walk around with a pneumothorax of this size.  Dr. Wigle doesn't want to jump into a surgery or another chest tube without Derek showing obvious signs of distress because of everything he has been through with his lungs.

We are to follow-up with a chest x-ray on Monday, July 1, at home.  Thanks for all of your prayers!  We'll keep you posted.  Right now, we are in the waiting room of Dr. Buckner (medical oncologist) awaiting results of yesterday and today's MRIs of brain and spine.

Pray... Pneumothorax is back, we are in mayo ER

Starting Zolinza

Lot's been going on in the last couple weeks.  I finally started on a new chemo drug on Thursday.  It took a while to sort things out and I had some blood work to do before I could start.  So far I have not gotten sick from it but I did not feel as energetic today.  The last couple weeks I have been feeling a little better and getting up earlier in the morning.  We hope that continues and this new med doesn't change that.

Last weekend we went to Indiana for the visitation and funeral of a friend who had cancer and two young kids.  We were both glad we went, as it was overall encouraging to us.  You probably think I'm nuts but it seemed more like a celebration of victory than a sad observance of death.  I think when it's a believer and we have had time to say our goodbyes, we can look at it more that way.  We met a number of people who we had never met before but knew of us because they had been praying for us.

This weekend we are in Kansas visiting friends.  The week after next we go to mayos again for routine scans and followup.

Thanks for your continued prayers.
Derek and Leann

May update

The month of May went pretty good and flew by.  The feeding tube is working well and I've gained some weight.  People around me say I continue to look better.  I am feeling a little bit more energetic, and don't nap as much.  The next challenge is to get out of bed sooner.  I have continued going in to work in the afternoons.

We just got back from a week on the east coast.  We took the train out to Connecticut for my cousin's wedding on Memorial Day.  The train was a good experience for the kids.  We were in a family sleeper from   Chicago to D.C.  They had lots of fun playing on the bunks up high.  Leann compared it to camping.  We took the train because I wasn't comfortable flying yet.  My lungs have been doing good the last  month or two.  We also spent the weekend in Rockville and left the kids with Leann's cousin while we went to the wedding.  It was good to have a couple nights just as a couple.  I'm glad we made the trip.

On the medical front, the genetic testing that Mayo's did showed some genetic mutation and leads them to a certain drug as the next step.  They are currently fighting this out with insurance and we are just waiting.  I'm not too anxious to start another drug as I'm enjoying the chance to recuperate.  So for the moment I am not doing any chemo.

Thanks to all who have helped us in various ways.  Thanks for all your love and prayers!
Derek & Leann

What I'm Learning From Cancer #14
Appreciate your wife & children more – It’s amazing how when it looks like you are coming to the end of your life, it’s much easier to forgive minor faults and be thankful for the big things.

I know this one is short but it really doesn't require a lot of explanation.   Just be forgiving and kind to those around you and you'll surprised how well things go.

Back to "Normal"

So we are getting used to a new normal I think.  I started driving to work this week, so that means it will be easier to do the same schedule all the time.  Last week Leann took me in or I got rides, and that meant a lot more randomness.  It still seems like there are enough Dr. appts but at least at work things feel pretty normal.      We've got a lot of help around home since I can do little to help with the chores.  I pretty much sit in my chair, do PT exercises, or take a nap.  The feeding tube is helping out a lot.  As we expected it has taken the pressure off of meal times.  I can basically feed myself any way I want.  If a meal looks good, I can eat as much as I want by mouth.  Then I feed myself a can of formula through the tube.  My sister in law is working on some formulas for more healthy home made stuff that I can put through the tube.  I've noticed that it doesn't leave me as groggy and over full as the Rx formula.

No word yet on the start of chemo.  We'll call Mayo's next week and see what they've learned.  I think in the next week or so the chest tube sites will be more healed.  Right now they are still a little sore.  The stomach tube has healed enough it doesn't hurt to laugh or cough anymore.

Thanks so much to those of you who have helped us out in any way, even if it is daily prayer.  I'm  continuously amazed by how many people tell me they pray for us every day.

Love,
Derek & Leann

What I'm Learning From Cancer #13 (written originally last year when I still could do more physically)
Know what’s important, then do it – It makes you think about what is important and what is not.  The hard part is then doing it.  Laying in a hospital bed and realizing that you will most likely not see your kids grow up has a way of changing your perspective.  For me it helped me to think about what are the most important things to be spending my time on.  I realized that I had to make the most of every opportunity to spend time with my children.  I want to teach them as much about character and life skills as possible while I’m here.  I realize that I cannot ensure they “turn out”, I have to leave that to God, but while I have time I want to make as much difference in their lives as possible.  It’s still hard though some times as things like work and taking care of the house can pull at our time.  But I just try to focus on involving the kids in as much as possible, and try to spend time reading to them from the Bible or good books that hopefully they will learn from.  So the first step is deciding what is important to us, and then the second is actually doing it.  The second step is harder than the first I think.  Every few weeks it seems like Leann is asking me – are you doing what you wanted to with your time?  It’s good she asks me that.  There are times when I kind of have to make adjustments again.  But overall this effort is what makes life more enjoyable anyway!  If we’ve decided something is important to do, it’s rewarding when we actually get it done.  So I encourage each of you to think about what’s most important to you and then how you will actually get it done.

Feeding Tube

This visit to Mayo's has gone pretty much to plan.  We hope to head home tomorrow.  Yesterday we had meetings with a nutritionist to discuss the feeding tube plan.  I'll be getting enough calories to maintain weight through the tube.  Then I'm free to eat through the mouth as much as I want and free to mix our own types of food to put down the tube for nutrition without worring about the calories.  We'll follow that plan till I put 10 or 15 lbs on and then we can readjust as necessary.  The tube was installed today.  I was not under general anethesia but the versed sort where you don't remember a thing.  I'm taking some painkillers now and they figure that will last a week or so and then it will get to normal where I don't have to take anything.

We also had some meetings with PT and they tried some ankle braces for helping my feet when I walk long distances or do stairs.  It's the type of thing I can experiment with to find when they help and when they don't.  They just velcro around my calf and fit inside my shoe.

I'm hoping to go back to work next week.  I've been keeping up via email but it's not the same.  As far as prayers, pray that I can feel more energetic and engaged not just in work but also the family.  It is harder for me to get around these days. We don't know how much is being in the hospital for 4 weeks vs tumor progression.  It's tempting to just sit around but I need to do as much as possible to get my strength back.  We have lots of people helping us and that's great, but if I can do just a little for Leann and the family, I will feel better.

Thanks to everyone for all the cards and emails we have received.  When we were home late last week it took me quite a while to get through the mail.

Love,
Derek & Leann

Mayo results

We are glad to finally be on the way home.  We generally had a good day.  the doctors can't explain everything, but are not surprised by my tumor anymore.  The MRIs show stability and no tumor growth in the spine.  In the head, there is nothing distinct but the area around the brain stem is slightly larger.  This is the area they aren't really sure what is going on.  The PET scan showed no additional tumors other than the little nodules in the lungs.  We were also seen by a doctor  Buckner who deals more with brain tumors that have spread to organs like the lungs.  I had an ENT evaluation which didn't really reveal any solutions but at least we have more explanation.  My right vocal cord is paralyzed which explains some of my voice changes.  The soft palette is also paralyzed on the right side which contributes to the speaking difficulty.  The only answer they have is microscopic or invisible disease that has caused my symptoms to worsen but the scans to look relatively good.
As has been the case all along, there is no well defined protocol to follow.  Dr Buckner has had some success with an oral chemo that I would probably start on.  The main side effect of this is fatigue.  It's a daily pill versus the IV injection.  He's going to wait to decide exactly what we do for another week or two till we have the results of genetic testing on the tumors they removed from my lungs.  There is always a chance the results will point him to a specific drug.  In the meantime he will get started on the insurance for the more common drug.
Next week we are planning to come back for some discussion surrounding a feeding tube and some preliminary scans and blood work for the chemo.  They also want to fit me for some ankle braces to help my walking stability.
The main thing now is just the difficulty eating.  My appetite is getting a tad better each day.  But I still don't look forward to meal time since its so much work.  My spirits are generally good, but I cry every time I think of the kids.  I miss them so much.  We finally said we were coming home today no matter what and we'd go back up again for more.
Thanks for all your prayers and cards over the last couple weeks.  Mom brought a bunch of our mail up and I just cried as I opened it.
Love,
Derek & Leann

Sunday

So I got out of the hospital on Saturday afternoon.  We had some friends come up for the weekend that we spent the evening with.  On Sunday, Leann and her went to our church services at the Apostolic guest house.  The husband spent the day with me and we called in to Tremont.  After church we went to Culver's with one of the couples from a potluck from my childhood days.  I just had to think how much we are blessed now by connections we made when we were kids.  Just one of the many of the blessings of our church congregations.

Pray for my swallowing and apetite.  It's been a real challenge when I am hardly ever hungry.  It seems like an often occurence any more that something gets stuck a little bit in my throat.  It's not like I'm choking, but I start coughing and it's hard to stop.

I miss the kids too.  It was hard to see them go yesterday and even now it brings tears to my eyes just to think of them.

Love,
Derek & Leann

The kids are on their way!

I'm rejoicing that I get to hold Lexi, Wesley, Whitley, and Lainey soon.  We've seens pictures, skyped, and emailed, but that just isn't the same.

Yesterday, they pulled out the left lung chest tube, and there is a small pneumothorax that occurred since then, but they appeared unworried because it was small enough.  As for the right side, they took the suction off at 6:30 this morning and will clamp it later today and take an x-ray Saturday morning.  If everything looks fine at that x-ray, they will discharge us from the hospital in the afternoon. Please pray the lungs stay inflated.

I know I should be excited to get out of here, but then that poses the reality that I will be more in charge of Derek.  Pray I can be up for the challenge.

I hope you all have a wonderful weekend.  The weather is beautiful here!
Love,
Leann

39th Birthday

Today is my 39th B'day.  Leann sent me a video that I have to share.  She got brave and had happy birthday sung to me from the grand piano in Gonda bldg (main hub of mayo's).  Overall I feel pretty good, I've got a decent amount of energy.  Leann had me to the courtyard downstairs this morning so I could feel the outside air.  The left side is clamped off since this morning and then I'm supposed to get an xray at 3:30 this afternoon.  The right side has a few bubbles now and then so we'll have to see what the drs say about that.

Love,
Derek & Leann

Tuesday Night

Just filling you in since the weekend.  We were expecting Monday to be uneventful but then the group of residents came in and said they would remove one tube in the morning, one in the afternoon, and I'd be out today.  When the PA came in to remove the tube, we convinced him to clamp it shut for a while instead of pulling it out.  This would do the same thing to my lung but in the case it was going to collapse again they would not have to reinstall it.  I went to get an xray around noon and felt fine, but thought I saw a little pneumo starting.  As I ate lunch I felt the same pain in my right lung, pain at the end of the breath.  So from these two things we concluded that the lung was collapsing again so we just put the tube back on suction again.  The Dr is out of town.  He had indicated that due to my history, we would take a slow and conservative approach.  Evidently that didn't get through to the residents before he left.  I think it's through today.  So today I pretty much sat around on suction both sides.  I'm notsure if much will happen tomorrow or not.

Lexi headed back home with Leann's folks.  We did skype the kids at home a couple times.  We are getting ready just to be with them and not have to be apart so much.

My attitude has been good.  I've had a fair amount of energy and been up working a fair amount today.

Thanks everyone for your prayers.  It's been a big boost this week.

Love,
Derek & Leann

Easter Morning

I have to share a verse I read this morning from John 20:31  But these are written, that ye might believe that Jesus is the Christ, the Son of God; and that believing ye might have life through his name.  He's speaking of the things that were written about Christ in the Bible and that not everything he did was recorded, but there is still enough to believe.  And the best part, how do we have eternal life?  through his name!

Yesterday my brothers and Dad came up to visit and take Mom home with them.  Lexi is staying a few days.    I got 2 of the tubes out so now I have one tube in each lung.  We need to see if these lungs will seal off.

The swallow test went ok.  Basically it showed the same to a little improvement from January.  No penetration by any consistency of the wrong pipe.  But it definitely continues to make a difference if I tuck my chin down and to the right as I swallow.  For some reason I just don't feel that hungry most of the time and I feel like I get full fast.

I don't think there is much else to say.  Enjoy your Easter plans and time with families.  Above all rejoice that Christ was willing to give his life and then was victorious over death that we might be able to reign with him.

Love,
Derek & Leann

Thurs night and Good Friday

Derek had a better night.  The oxygen came off and his pain pump is gone.  He is now relying on oral pain meds oxycodone and tylenol.  He's walked three times today and had a visitor from work.  The complication today was the swallow test that Occupational Therapy did bedside showed he needs a more thorough swallow study done in radiology which is still supposed to happen today according to the nurse, but I'm starting to wonder.  He cannot eat or drink anything until they get that done according to the hospitalist in order to be "safe".  He has been coughing after each swallow which can be a sign of aspiration.  I'm praying they don't mention a feeding tube.  I believe if given time, he will be able to eat enough again.  Coming out of surgery I don't know if the swallowing isn't working as well because of shortness of breath and pain or if he's a little nervous when trying to swallow, but pray for this to improve please.

Thank you and may the Lord and His suffering, death, and resurrection be remembered by each one of you this precious season.

Leann

Details of Wed night and Thurs

Wednesday night Derek slept pretty good, but woke to push the pain pump a few times.  I arrived a little after 7a today (Thursday) and he was battling pain, but soon was "caught up" again.  He ate oatmeal and chopped pears and some juices.  He walked for the first time around 10am and did probably 30 feet with a walker thing called a podium which he could lean on for support and have all the tubes connected to the appropriate things on it (suction, oxygen, catheter). He felt good after that walk, pain-free for a time, and read a magazine.  He walked again an hour later about double the distance and wanted to work on the laptop, but by the time mom went and got it at the guesthouse and got back he never did get to working.  By the time we ordered lunch, he was showing signs of being really worn out and after the food arrived he didn't end up eating it.  The respiratory therapist had come in and seen him take a drink and cough right after the drink.  This concerned her that he might be aspirating which they don't want any of that. So, a swallow test is ordered for Friday morning and he was told not to eat or drink until that test.

The catheter came out, but he's not able to void, so it might be going back in.  They've upped IV fluids to see if that helps.  His mouth is really dry and we have to swab and sip water.  His third walk was shorter and he was in pain on the right side where the tube is.  He took an afternoon nap.  This evening, they were able to get us moved to a private room which I really like, so I'm staying the night.  He did want to check email around 8p...it's always a good sign that he's feeling ok when he wants to work a little.

Mom and I went for a long walk and ate pannekoeken for dinner while they walked Derek a 4th time and moved him.  He was able to talk on the phone to the kids today and to Doug.  It's about 9:30pm here and he's not quite ready for lights out.  It sounds like we might have a visitor tomorrow and more on Saturday which will be nice.  My parents are bringing Lexi up with them this weekend, and I'm really looking forward to hugging her.

Derek had Mennonite singers come by Wednesday evening and he requested When All Of God's Singers Get Home.  It's a beautiful song.

Have a good night everyone,
Leann

Derek's awake

We've been visiting with Derek, and he is still a little sleepy but doing well coming out of the anesthesia from the surgery.  He is in his room with lots of tubes:  catheter, chest tubes on either side, oxygen in his nose, oxygen monitor on his finger, and blood pressure cuff.  Plus 2 IV sites that are not receiving anything right now.  His pain is a ZERO right now (thankful for that!), and they will soon hook him up to a pain pump so he can run that when he does start to feel the pain.  They are sure he will have some, but he's still under the surgery pain relief right now.  Not eating/drinking yet until they release him to.  Just wanted to give another update for the kids at Grandma Stoller's if nothing else.  They are fine "doctors/nurses" and will want to know these details.

Sorry to report

Derek is through with the lung pleurodesis procedures and biopsies.  The surgeon informed us that there is cancer on the lungs which has most likely contributed to the lungs collapsing.  I don't want to believe that the cancer has metasticized (moved to another location).  The surgeon felt that the procedure went well.

There will be a pathology report in a couple of days confirming the type of cancer.  At that time, they will suggest chemo treatment options.  Radiation on the lung is not an option, because there are so many tumor spots. 

We have agreed to have Derek's tumor/blood entered in a targeted gene testing program which is fairly new here at Mayo Clinic.  It is in the Individualized Medicine division.  This could help determine which chemo drugs to try.  There are three different tests...one taking as long as 2 weeks, and another taking 3 weeks, and the third taking 15 weeks.  We are only patient #12 here to go through this process, so there are not many statistics and certainly no promises. 

We haven't seen Derek yet or received our room assignment, but we will be located on the Francis floor 5 at St. Mary's hospital, Mayo Clinic, for the next 5 days at least and probably more.

I trust in God Almighty who knows and sees all things, and He LOVES us more than I could ever love Derek, and that's a lot.

Love to all of you who are praying and helping,
Leann

Mayo - now Right Lung

We made it up to Rochester without incident.  It was slow going for an hour or so with solid ice on I-74 but once it cleared up, the roads were dry the rest of way.  Thanks to Dad Sauder for driving us up.  I had one MRI last night and the other ones this morning.  I was supposed to have a PET scan this afternoon but at a Dr mtg in-between, he could tell my right lung had the weaker sounds.  I had a little pain on the way up that made me wonder, but it's been really hard to tell what short of breath is.  So I wasn't surprised when a chest xray showed that the right lung had collapsed.  (Chest tube is currently in the left side)  So I'm scheduled for tomorrow morning to have the pleuridysis done again to both sides.  This time they'll make 3 incisions or so per side and stick a scope in so they can really look around.  The surgeon will do physical abrations in addition to the talc.  I'll be put out for all this.  He also plans to biopsy one of the nodules that the lung xrays have been showing.  So we'll finally know what that is all about.

Overall this is not a good step.  But we are glad to be at Mayo where stuff just happens so fast.  This doctor seems to know what is going on.  He said 4-6 days in the hospital, but hard to say exactly for sure.

Thanks for all the prayers that have already been offered on our behalf.  God is in control and we are not going to stop trusting in Him now.  We'll keep you posted once we know more.

Love,
Derek & Leann

Home update

Things are going pretty well at home. It's good to have the kids home with us for a couple days before we head to Mayo for MRI scans.  Lainey grew up so much in the last 3 weeks.  She's sitting up a bunch more and almost ready to crawl.  We hope to go to church tomorrow at least in the morning and make it to Stoller Easter in the evening.  Monday - Wednesday we plan to go back to Mayo's for regular followup scans and meeting with the oncologist there.  Our plan is to drive up Monday morning and back Wed night.

We've got a home health nurse coming to check on me every couple days while the chest tube is in.  It has sounded quieter (less air leaking) but Leann thought she heard a lotof air moving when I coughed this morning.  I go back to the lung doctor on April 1, and have an xray to take a couple days before that.  The air leak needs to totally stop before they pull the tube.

Love,
Derek & Leann

A couple pics from last week's anniversary celebration:

Home again

We finally got home tonight.  I still have the chest tube and a pneumostat valve on it to vent any air that leaks.  I have a number of restrictions on me for the next week or two.  I'm not supposed to drive, go to work, or lift more than ten lbs.  but it's still good to be home.  Pray for Leann, we got so accustomed to having help in the hospital it looks a little overwhelming tonight.  The kids are still gone so I hope that will be short lived.  Well try to update everyone later once we have all the next weeks schedule sorted out.  Thanks for your prayers and continue to pray my lung can heal and we can put this chapter behind us.

Love,
Derek and Leann

Taking chest tube home?

We might get to go home tomorrow with the chest tube in to give the lung more time to heal and do our waiting at home.  Another x-ray in the morning will say for sure.

Today was Whitley's turn to visit Daddy.  The kids love it when it's their turn.  They've been taking some "spring break" days from their schoolwork.

I had a conversation with the Mayo Clinic nurse today.  Our trip Monday is in question whether the tests can be run with a chest tube in.  We're hoping it still works to go.

I'm staying the night since we have a private room now.  It's pleasant here, and things could be a lot worse.  I appreciate all of your forms of help, including prayers.  God bless you.

Love to all,
Leann

Not going home yet

Things were going well yesterday.  They pulled the tube after lunch.  This morning I was supposed to get out of the hospital but the X-ray showed a little bit of air.  So they ordered another X-ray for early afternoon which showed its continued to progress and the lung collapse is getting worse.  So I'm staying and going back to the lab for another chest tube.  They will then turn me on to heavier suction and give it some more time to stick.  She said if they get this soon they shouldn't have to do the talc again.

Just pray for my lung and attitude.  Thanks for all the cards, visits, and prayers.  We feel them and appreciate it so much.

Derek &leann

10th Anniversary

We had quite a day.  Our wedding party came at 4 this afternoon for a couple hours.  Almost everyone made it.  The same lady that did our wedding cake did a couple cakes.  Mom Stoller made candies the same color.  Leann and Cheryl were in their dresses.  It was quite a time.  Leann and I both thought this was maybe more special than going to Hawaii would have been.  We sang together some of the special songs from our wedding.

Then Leann and a few of her friends went out for supper while I stayed at the hospital and grabbed a nap.

I woke up this morning at 3:30 with intense pain but they got it under control a little after breakfast.  Most of the day I felt pretty good.

Overall, I feel really blessed and today was the best anniversary I can imagine.

Thanks for your prayers,
Derek & Leann

Talc is in

The talc slurry was placed in the chest tube at 10:40a this morning.  Derek felt some achy pain, so he was given fentanyl through his IV for that.  He is resting comfortably now on his back. The schedule that follows goes like this...

11:10a. Move to left side
11:40a. Move to right side
12:10p. Up to chair, receive Motrin and norco for pain
12:40p. Take a short walk and then hook up suction for next 24 hrs.

Saturday at 12:45p unhook suction

Get 2 chest x-rays at different points to see how it's working.  If it looks good, pull tube out and monitor for a few hours.  Then, go home.  I expect we might get home Sunday if everything goes well.  A little 10th anniversary party is planned for us here at the hospital at 4p Saturday which we are looking forward to.  We hope you all have a nice weekend!  Our children sing in the church Easter program Sunday night, so they are looking forward to that.

Love to all,
Leann

Better spirits

I'm feeling better today.  Leann and I talked this morning and I realized what had happened over the last couple days.  I think I had given up in my mind and lost my positive outlook.  It wasn't helped when before the tube insertion procedure the dr asked about a DNR order.  It was something Leann and I had talked about before which wasn't hard then but telling someone else was hard.  So Leann kind of set me straight this morning that I can't give up.  Even though there are things I can't do, there are still things I can do.  My mind is still working.  I am not in any constant pain.  I have many reasons to be thankful.  I'm on a different floor this time but once again the cleaning lady has been an inspiration too.  It's kind of amazing how someone doing the lowest job from mans perspective can be fully persuaded that God is in control.  You couldn't have talked these ladies out of their faith if you had all day.

And then I've had a few visitors this morning and that always helps to get me thinking more about the future and less about my current challenges.

So thanks to all of you who haved prayed for us in recent days.  May God bless you and just continue to pray that God will direct our attitudes and hearts through any difficulties that lie ahead.

Derek & Leann

Pneumothorax reoccurred

Dear loved ones,

We are back in OSF and another chest tube is in, larger this time with plans to have a pleurodesis procedure using talc to "stick" the lung to the chest wall.  They are estimating we will be here until the weekend.  Derek is down.  Hard to find another way to say it.  Please pray for his attitude.  He doesn't want to be here, but God is faithful.

They tell him the goal for the inspirometer is 1,000 and he can only get it to 100....then 2 hrs later (on the suction), he can do 250.

Our biggest question is where his dry cough is coming from that seems to have set off this string of pneumothorax episodes.  Still no answer for that.  He has had a cough from New Years on.  It became congested the end of January.  The mucus cleared up with prescription cough medicines, but the cough continued and was really often and wearing him out this weekend while we were home.  The cough completely stops while the chest tube is in.  We believe the hyperbaric oxygen treatments could have made his lung susceptible to a pneumothorax, too.

We have mayo clinic appointments in 2 weeks (MRIs, PET scan, hearing test, 2 different oncologists- neuro and medical).  Hopefully, we will get that answered.  I feel like a detective these days.

Thank you for your love and prayers and advice.
Love,
Leann

Home

We got home Saturday afternoon. The Fri afternoon and Sat morning xrays looked good, so they let me go. We are just praying now that I can recover my strength and nothing with the lung goes backwards.

Today the kids went to church without Leann and I.  Thanks to everyone who watched them today.  We are hoping for a relaxing evening together as a family.  I think we will have a few visitors tonight.

Thanks everyone for your prayers through all of this.  It really helped.  I could tell I was not as discouraged as I would have been otherwise.

Derek & Leann

Chest tube is out

Dr verma, pulmonologist, just pulled the chest tube out with 2 residents observing.  It only took a second, and now we wait until around 430p to get another X-ray.  We may get to go home tomorrow...depending.  We appreciate continued prayers for Derek's lungs.

Leann

Thurs morning

We are still at OSF.  This morning the X-ray of the lung looked good.  It looks fully inflated.  They have turned the suction off, water seal on.  Tomorrow, we will have another X-ray.  Thanks for your thoughts and prayers.

We sleep pretty good here.  We are looking forward to singers tonight at 7.  Derek's spirits have been up, and he has been walking with the walker a few times.

Love to all,
Leann

Wednesday update

My left lung did not totally reinflate but it's pretty close, say about 90%.  So Dr Verma decided to give it another day to try and inflate on its own before deciding to do surgery.  My pain is a lot better today, we finally got on a regimen and that is helping.  I made two short walks in the hall so that is a big milestone.

Thanks for everyone who has come to visit.  In general I am feeling up to it.  It does help my spirits to have plenty of people to talk with and Leann doesn't feel as bad leaving for a bit.

Wesley & Lainey came for a while this afternoon.  It was good to see them.

Thanks for your prayers,

Derek & Leann

Tuesday Update

As we prepare for bed, psalm 43, and verse 5 says "why art thou cast down, O my soul? And why art thou disquieted within me?  Hope in God: for I shall yet praise Him, who is the health of my countenance, and my God."

Today's report was that the lung did not stay inflated but collapsed again (pneumothorax) when the suction was removed from the chest tube.  So, the suction was turned back on and we wait...the progression we are hoping for is:

1.  24 hours must go by on the suction before retrying
2.  Chest X-ray to see lung looks good.
3.  Suction is turned off and wet seal turned on.
4.  24 hours of wet seal to see lung hold to chest wall.
5.  Another chest X-ray to see lung stayed inflated.
6.  clamp the tube to simulate removing it.
7.  Wait a few hours to see lung hold.
8.  remove tube.
9.  Monitor after tube is removed.

If at any point the lung does not inflate/stay inflated, this will have been the second trial, and we would proceed to meet with surgeon to discuss talc being used to "stick" the lung to the chest wall.  This surgery is considered fairly small and is done using a scope.

So, I think that brings you up to speed.  Thank you again and again for your prayers and love.

Leann

Monday update from Osf

Thanks everyone for holding us up in prayer.  I'm sitting up in the chair right now but it wasn't easy getting here.  I still have a lot of pain when I try to hold any weight on my left arm.  I've spent mostofmytime here laying in bed and trying to sleep between all the drs and visitors.  It sometimes hurts to talk so I'm not always real talkative but enjoy visitors anyway.

The pulmonologist is the main dr in charge of my care.  At least we found out today the Hawaii trip is off for now.  She said I have to wait 6 weeks before flying.  Leann and I are doing pretty good with this news since we are realizing this will be a bit of recovery and we didn't want to take a chance and end up in the hospital there.  They have been taking X-rays every day and my lung is expanded like it should be.  There is still though some air coming out of my lung which needs to seal off.  Sounds like the earliest the tube would come out is tomorrow morning.  I have to wait 24 hrs at least after the tube is out before i can come home.  Right now I feel pretty patient, just hoping my lung will seal up on its own.

The last week has been harder on me.  When you feel your body getting weaker, it's just hard.  The thing I'm learning is how hard it is to write or admit this during the struggle.  I want to wait till I've had a couple good days to update the blog.  It seems like its human nature to have a certain amount of pride and good news is easier to report than bad.

Even before being in the hospital, I've felt my left leg getting weaker.  I finished the oxygen therapy on tuesday this past week. It's hard to say if it helped.  At least the swallowing did not get any worse, and maybe improved a little on liquids.  My walking has been harder and I'm using the walker more.

But even with these challenges, I'm still trusting God.  It would never do any good to get bitter.  I just trust that God has some reason for letting all this happen.  He is still in control.  He knows the future. I can rest in that.  My cousin reminded me that the Bible says that the Son intercedes for us and also that the Spirit intercedes to the father for us.  So two parts of the three are pleading to the other on my (and your) behalf.  I don't know that I really thought directly about that much before,  but it is comforting.

As for prayer requests, please pray that my lung can seal up, that Leann and the kids can handle the extra stress, and that my attitude can be right and positive.

Thanks so much for all the help, love,and prayers.
Derek and Leann

ER and admission to OSF

It's morning Derek had a coughing spell and his left lung partially collapsed.  He had shortness of breath, and we came to OSF ER where we've had exceptional treatment including a procedure to put in a chest tube to get the air out and the lung has re-inflated.  The leak appears to have sealed again.  He is at risk for this happening again, and the real problem come Monday will be determining why he has had this persistent cough for a month. The lungs show some nodules, very small, but new in the last year.  We have a PET scan coming up at Mayo the end of March.  it may have to be made earlier.  Our Hawaii trip, I would say, is in limbo... We were supposed to fly the 10th for 10 nights.  Pray for healing, no more lung collapsing, and calm for Derek.  Love you all.  Leann

Some Improvements

Sorry it's been so long since an update.  I realized that time has been flying by and I meant to update last week but didn't have the energy.  I'm not sure why but I've been really tired lately.  It seems like the last round of temodar wore me out and I haven't recovered since.

Late last week I started noticing improvements in what I can do.  Making it up the stairs at work is easier than it used to be.  I think the swallowing is easier, particularly for liquids.  I still have to use a lot of applesauce but it's easier to drink water anyway.  Early last week I went to the doctor for my cough and it's not perfect yet but I'm coughing a lot less and sleeping through the night again.  Last Friday I had a re-evaluation with my physical therapy at Hopedale.  I improved in what I could do on that exam also, and they now rate me a 40% fall risk instead of 80%.  My PT has changed to where I am just doing water therapy and doing it with Leann so we have more flexibility in what time of day we go, which helps a lot.  The only downside is that Leann is a bit tougher of an instructor than the real ones were so I am a bit more worn out.  But if feels really good to be in the therapy pool and it's a lot easier for me to try things when I don't have to worry about hitting the floor if I fall.

This week I have not felt many improvements, and I feel like things are pretty static as far as my abilities.  For whatever reason I have felt more tired and spend most evenings napping in the chair.  This weekend looks pretty slow as the kids have come down with pink eye and runny noses so I think we are pretty much home for the weekend.

We were really blessed with everyone's cooking for me the month of January.  I think this was the first week that Leann had a chance to cook at all.   Lots of good stuff for me to eat has been dropped off and we appreciate it.

This week I heard of a couple families who lost children to accidents of one sort or another.  My heart goes out to them.  I've said many times that it "appears I have less time" than others.  It's only an appearance.  None of us knows when our time on earth will end.  Any of us could be taken in a moment of time.  It's just a reminder to spend each day that God gives us here serving Him.

As far as prayer requests, please thank God with us that it has been somewhat easier walking and swallowing and pray that the improvements can continue.  Thanks everyone for all the prayers & support we feel.

Love,
Derek & Leann

What I'm Learning from Cancer #12
        Don’t have any buckets – you are probably wondering what I mean by “buckets”.  It’s easier if I could draw, but let me try to illustrate in writing.  What I mean is that we put the different facets of our life into buckets.  We have a “work” bucket, a “family” bucket, a “spouse” bucket, a “spiritual” bucket.  We try to separate and segment our life.  I think it’s because it can be easier to analyze ourselves that way or something.  And maybe this is just a problem for analytical people like engineers, but I don’t think so.  An example: how many times at church do we hear “forget about the things of the week”?   To some extent it is true, I should not be trying to complete a mechanical design in my head during church.  But if my week was a struggle with a co-worker, a supplier or customer, or my wife, then I better not forget about my week as I come to church.  I should be remembering my struggle and allowing God to work on my heart as it relates to my struggle.  At work, how focused are we at getting the job done vs being attentive to the personal needs of our co-workers?  We have gotten so busy that we don’t feel like we have the time to stop and talk with others.

      So what I mean here is that we should not isolate our spiritual life into it’s own bucket.  Our spiritual life should run across all facets of our life, and be intertwined with our work life, our family life, our marriage.  If we put our spiritual life in a bucket, then we don’t focus on how we can help others.  We tend to fall into the ditch on either side.  Our “spiritual life” becomes arguments of deep theological questions, or agonizing over details of church tradition and custom.  When we have our spiritual life threaded through the real lives of our family and friends, we are too busy helping others understand the reality of Christ’s instructions for our lives to waste time in trivial discussions.

     Just for my own accountability, I want you all to know that if you see me being too busy, or selfish, or un-interested in others – you can stop me and tell me so.  I really want to be more in tune to the needs of my family and others around me.  I want to remember that the Bible applies to all situations, not just the ½ hour in the morning when I read it at my desk.

HyperBaric Oxygen Therapy

So we have now crossed over to where more than half of each day is spent at someone's doctor visit!  I'm joking a little but not too much.  Dr McDonald talked to Dr Hammack over the weekend and got agreement that it would be good for me to start hyperbaric oxygen treatment (HBO).  So this morning we had an appointment to discuss this with the HBO doctor at OSF.  And I actually got the first treatment in today.  Here's the schedule: 5 days/week for 6 weeks.  8:30 am appts and the treatment takes about 2 hours.  With a 40 min drive each way, this will take most of the morning every day.  The good news is that we don't have to move anywhere to do it.  It's the same basic treatment that they do for wounds.  The goal is simply to supply more oxygen to the brain to help reduce swelling and radiation damage.

I'm doing physical therapy twice a week, once in the pool, once on land.  I've still got the avastin treatments every 2 weeks, and I just started the second round of temodar last night.  This time I knew to take my nausea medicine before hand and they had me take it just before bedtime.  That's supposedly better for sleeping through any ill-effects of the medicine.

Monday I had the swallow study.  Basically the right side of my throat is not working and food just sticks at the top.  The left side is working ok.  So if I turn my head to the right and down, then food will go down the left side.  As far as liquids, they are working if I only take one swallow at a time, no continuous gulping.  Now that I understand all this it is going ok.  It still takes me a long time to eat and I am still eating something soft with everything.

I got a handicapped parking card yesterday.  That will help the trips where I would have a long walk through an icy parking lot.  Once I'm pushing a shopping cart, I do fine.  Hopefully the HBO helps this improve and I won't need to renew it in 6 months.

Now you know the latest.  Seems like the schedule is intense with medical visits these days but we finally have something that makes sense as far as symptoms and we have some hope that this HBO will help alleviate them.  Just pray that this therapy will work as intended and my swallowing and walking will improve.

Thanks to all who have helped with babysitting and made soft meals for me.  It's really appreciated.  We've really felt everyone's prayers and support as things have gotten more challenging for me.

Love,
Derek & Leann

Symptom Theory

We received a call from Dr McDonald at IU this evening.  He's the one that oversaw my radiation treatment.  He says in looking at the head MRI, he sees signs of swelling in the area of the brainstem that would be potentially affecting the right side of my head and my right leg.  He said the timing would also be right for this sort of swelling to be due to radiation.  He says the fact that tumors in the spine are barely visible anymore leads him to think this is not tumor growth.  He is going to call Dr Hammack on Monday to discuss with her.
As for treatment, he says that either hyperbaric oxygen therapy or some medicine (or both) can help the body get more oxygen to the affected area and have less damage/more healing.  He said it's hard to know at what point this swelling will stabilize on its own, but these treatments will help.  We are elated to finally have an answer that seems to make more sense.  We'll post more next week but had to share the exciting news now.

Eating has been going better the last few days as I've learned how to eat the right foods and am learning to mix applesauce with everything.  And several have brought soups and other soft stuff that has been great.  Thanks for praying for us, and just pray that we have wisdom next week as we decide which treatments to continue/start.

Love,
Derek & Leann

Over the flu

The good news is that I am finally over the flu I think.  After spending all day Tues & Wed pretty much lying in bed or the living room chair, I finally spent today up and about.  I was able to get my Avastin treatment this afternoon.  I go back in on the 14th for them to check blood work prior to starting the next round of temodar.  The first round went fine after the first day and once I started taking the nausea medicine.  It did drag me down more though, and it was really hard to get out of bed in the mornings.  This morning we went for physical therapy to try and get help with my walking.  I'll go twice a week, once in the pool, once for normal therapy.  There is hope with some muscle training that will improve.  As I have started to get weaker in my right leg, then I'm favoring it more, which is contributing some to the problems.

I don't know how else to write other than to be totally open.  It's tempting to act like everything is great because then I know you'll all be happy.  I don't want to be overly pessimistic and discourage anyone.  I'll try to be as truthful as possible.  It's been a really hard last couple weeks.  It seems like every couple of days there is some new handicap.  The latest is difficulty swallowing.  Thankfully my tongue has improved a little bit and I'm hardly biting it anymore.  So the chewing is not the issue now.  Now the problem is that food gets stuck in my throat.  Eating has become very difficult.  We are trying to figure out what foods I can eat and this afternoon I was looking for a baby food grinder to see if that helps.

So I definitely feel like my body is on the decline.  I'm right at the cusp of needing to use a walker (I used it a bit today, but not all the time), we are working on putting in a stairlift at home, and now I'm eating soft foods like a 6 month old.  I've had some down times with it all, but I'm keeping my spirits up as much as I can.

And then there was the clincher tonight.  We are trying to encourage Lexi and Wesley to be in the homeschool spelling bee.  Leann got a movie from the library about a girl from the ghetto who goes to the national spelling bee and wins it.  I saw a picture she looked at a couple times that I was guessing was her father.  There was no Dad around to be seen.  At the very end it was confirmed that he was killed when she was 6 years old.  Needless to say, I cried a lot.  So afterwards we just spent a lot of time on the couch crying together.  And then Whitley brought untold joy to my heart.  We were talking about the soul going to heaven and being happy in heaven but sad to not be together on earth.  And then she said "Daddy will die, and then Lexi die, and Mommy die, and Whitley die, and Lainey die, and he die (speaking of Wesley), and then we all be together in heaven and Daddy be happy"  She's 3.  This has to be the most amazing thing she has said to me.  And obviously the kids don't understand, and I'm not sure we do entirely either.  But's it's amazing at what young age they can know about heaven and hell.

Please don't be discouraged or give up praying.  We still appreciate it so much and it gives us the strength to make it through when times are hard.

Derek & Leann

What I'm Learning from Cancer #11
It’s about the simple things.  Last January, as I lay in the hospital bed contemplating the doctors’ prognosis, I was brought back to thinking about simple things.  How much love had I shown my wife?  Had I spent enough time with my kids?  Had I talked to the unbeliever about his soul?  I did not worry about what the explanation was of some tough theological question.  Some theology matters, but I came to the conclusion 95% of our discussion of theology could be skipped and we could spend that time just putting into action the simple-to-understand commandments of Jesus about loving God first and then loving our neighbor as our-self.  Jesus was questioned by a lawyer trying to trip him up.  Matthew 22:36-39  “Master, which is the great commandment in the law? Jesus said unto him, Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind.  This is the first and great commandment. And the second is like unto it, Thou shalt love thy neighbor as thyself.”