Follow-up completed

Hello to all,

A couple weeks ago I had my follow-up with my thyroid surgeon and met my endocrinologist that will be prescribing my levothyroxine medicine that I need to be on for life.  They performed an ultrasound which was clear of any thyroid and any cancer.  They expected this, but I was glad to have it confirmed.  They did a blood test which showed the cancer marker was good for no cancer, and they tested my thyroid level which was a little hyperthyroid, so they adjusted my med and said see you back in 6 months. 

I questioned them on my voice, because I've lost an entire octave above middle C.  For those of you that love to sing, you will understand this is a great detriment.  Singing is a great way to praise the Lord, help my kids learn, and to be encouraged.  I'm really missing it.  Please pray for my voice to come back fully.  Even in my talking voice the "sweetness" is missing, because I can't physically pull those tones out of my vocal chords.  It makes me sound more monotone and kind of depressed (like on the telephone my friends think I'm down any time they call).  Also, the volume is lower at what I can speak.  So, this voice thing is my greatest frustration at this point, but I realize I can be grateful for so many other things so I'm opting to patiently wait to see if it will still return to normal.  We will address it at the next appointment if things haven't improved.  I believe there are procedures to partially fix it at least.

On the home front, I'm pleasantly surprised how well the kids and I can do keeping things maintained (with some help from others).  I feel very blessed to be able to live here where we can have some space, a barn, a few animals, a large home to enjoy and share with others, and the openness of the sky compared to being in town.  Driving down Lake Windermere Road this season, it's getting real pretty about now.  I remember Derek after being diagnosed with brain cancer saying how beautiful the leaves were over and over.  I think he just took time more to enjoy God's creation than he had before.  We miss him incredibly, and yet there is so much joy in our lives at the same time.  It definitely mingles together with the mourning, and I'm grateful God's grace gets us through the loneliness and sadness that comes from time to time.  Last week, I had time to watch a talk Derek did a couple years ago, and his advice was very pertinent to what I needed that day.  He said, "Don't be an island. We need each other."  I hope to follow it. May your days be filled with the love of our Father in heaven.  I know Derek said often that he would be willing to answer any questions anyone would have or help in any way he could.  I just want to say the same.  If anyone reading this doesn't know where they will spend eternity or questions the faithfulness of God, please feel free to ask me anything.  I would be glad to share more of what He has done for me. 

Much love,
Leann

Post op

Doctor removed the large benign nodule, and found 2 smaller papillary cancer nodules behind it.  The entire thyroid was then removed, as well as a parathyroid embedded in muscle.  I'm having some sore throat pain, and I've been very sleepy.  It hurts to talk, swallow, and clear throat.  About a 3 on the scale to 10.

Vacation and now surgery

We had a very nice getaway to the Ozarks last week, and this week are saying good-bye to Doug's family as they are moving back to CA.  God's hand has been in so much of our lives, big and little.  His timing of Derek's death and having family be able to be around during the funeral time has really helped me see the goodness of Derek's passing, even though I grieve.  We enjoyed boating, swimming, Lainey's 2-year birthday, and adults out to dinner overlooking the lake.  Aunt Helen accompanied me, kept me awake when driving, and stayed in during naptime so we could maximize our time together.  I'm so thankful for being surrounded by dear loving family and friends.  I'm overwhelmed by cards, gifts, acts of service, and compassion that each of you share because of Jesus and His love.  Last Sunday morning, I felt Derek's presence, like he was holding my hand, and it was such a gift.  We've proceeded with life as much as possible the same as if Derek had been here.  It seems good to carry out any plan he had made with me.

On my thyroid nodule...  The surgeon was on the fence about removing it, but because I'm having symptoms related to it (coughing, sore throat, discomfort, and anxiety whether it truly is benign), we are going to go ahead with surgical removal of it tomorrow morning.  If things go as expected, I will be in surgery around 8:30a for about 2 hours and in the hospital overnight, arriving home Friday.  Life isn't always as expected though, is it?  So, I trust God's will to be done and am praying for a simple procedure and recovery.  Pray for Lexi, Wesley, Whitley, Lainey, and their caretakers.  The kids have each had their own forms of stress and grief, but I believe are doing well in light of the circumstances.  We finish up swim team with one last meet for Lexi and Wesley on Saturday.  Whitley and Lainey are just happy if they are jumping on the trampoline and dressing up.  Wes prefers to be building his tree house or picking the garden.  Lexi loves organizing a "school" lesson in the living room for her cousins and being near me to lend comfort.

We are thankful for your prayers and lots of love.
Leann

Benign!

I'm tearfully thankful to see my pathology report online say Benign.  I still haven't talked with the doctor, so am not sure of the action from here.  I will probably not have the surgery July 22/23, because that was to be a family vacation with the Sauders, and we will want to go ahead with the vacation now.  I believe I can postpone the surgery with very little risk.  I will also consider non-surgical treatment options at this point.

This relief is a wonderful feeling.  I'm thankful for God's mercy and love.
Leann

Arrived home

Lexi and I are getting unloaded from our Mayo trip with Dad and Mom Stoller. Glad they could drive us.  The doctor's initial report of the ultrasound on my thyroid nodule was he could not tell me it was benign, but he could not tell me it was malignant either.  I think he expected to be able to tell me it was benign, but it was not that clear.  In other words, wait until Monday when the needle biopsy results are finalized.  It is likely I will have surgery with either report, just based on the sheer size of the nodule.  It was 2 cm x 3 cm on the ultrasound today.  The first available surgery date in their department was June 22/23 which I went ahead and scheduled.  I will be trying to move it up, but most people don't cancel surgeries, so it's harder to get in earlier than appointed.  I slept a lot on the way home, and prayed much.  The gist of this is that I "don't get it" that God is doing this to me, my kids, and now, but I do know He is faithful and His ways are worth following.  I appreciate all of the encouraging messages I've received.  God bless you all.

Love,
Leann

thyroid nodule

We've had a grieving week, but have felt overwhelmed with the love of family and friends, and the Lord's faithfulness.  If there can be a perfect passing of a loved one, I feel like we had that.  Derek's place at his desk, the table, at work, on the patio, is vacant here.  We miss him sorely.  With the great expectation of seeing him again and having assurance where he is now and what all he might be enjoying, we get through each day, comforted by the Holy presence of Jesus in our hearts.

On another note, I had a shoulder tendon tear last year which led to months of physical therapy, a cortisone shot, etc, and finally an MRI of my neck to check for disk bulge.  The MRI was the 9th, and it showed no disk bulges.  However, it showed a 2 cm thyroid nodule.  Based on the history with Derek, my inclination with the support of my two sets of parents was to come to Mayo Clinic and get answers fast.  I realize many are benign.  I've just completed the fine needle biopsy, and am waiting on the doctor visit which won't probably have the final results yet, but may indicate if it is concerning or whether surgery will be necessary.  It seems like strange timing to me, but as I laid on the table for the biopsy I had lots of thoughts of Derek thinking of him going through so much of what he did without complaining and with plenty of patience to go around.  It helped me to think of his steadfastness.

So, I will try to update when I learn more.  Prayers are so appreciated for our family.  The kids and their caretakers, my anxiety level, our grieving process, and so much more.  Health if it can be God's plans for us.  Thank you for your love.

Rejoice evermore, pray without ceasing, in every thing give thanks.

Leann

Obituary

Derek A. Sauder, 40, of Tremont, passed away peacefully into eternity at 8:28 am Wednesday, July 2, 2014 at OSF St. Francis Medical Center in Peoria.

He was born April 4, 1974 in Pekin to Steven E. and Mary A. Woerner Sauder.  He married Leann Stoller on March 16, 2003, and she survives.

Also surviving are his parents of Tremont; his children, Lexi, Wesley, Whitley, and Lainey Sauder, all at home; two brothers, Doug (Brooke) Sauder of Washington and Brent (Janelle) Sauder, of Tremont; and his paternal grandparents, Earl and Glenna Sauder of Tremont.

He was preceded in death by his maternal grandparents, Chris and Wilmina Woerner.

Derek graduated from Tremont High School in 1992 and the University of Illinois in 1996.  He worked many years at Precision Planting in Tremont helping farmers across the country improve their operations by innovating new planting equipment.

He was very passionate about serving his Lord, his wife, his children, his employer, and their customers, and his co-workers.

Since May 2011 he battled brain cancer, striving to continue his passions while his health declined.

His funeral will be at 10:00 am Friday, July 4, 2014 at  Apostolic Christian Church in Tremont.  Ministers of the church  will officiate.  His family will receive friends for calling hours  from 1 to 4 and 6 to 8 pm Thursday at  Apostolic Christian Fellowship Hall, 601 S. Chestnut St., Tremont and from 8:30 to 9:30 am Friday at the church.  Burial will be in Apostolic Christian Cemetery in Tremont.  Davis-Oswald Funeral Home in Tremont is handling the arrangements. 

Memorials may be made to the Sauder Children Fund established at Tremont Community Bank.

To  express condolences online visit www.davisoswaldfh.com.

Heaven

Around 8:30am Derek went home to be with the Lord.  He was peaceful, just like we had prayed for.  The family was all able to gather around.  We are very thankful and appreciate your prayers.

Off of ventilator

Derek's blood pressure dropped overnight, and we have decided to stop life saving devices and do comfort measures only.  As always, we need you and your prayers.

Love,
Leann, Lexi, Wesley, Whitley, and Lainey

More aspiration - ventilator

Derek took a turn for the worse around 11pm tonight.  The nurses were turning him, and he vomited once again and inhaled a large amount.  His oxygen dipped to 50, and they promptly inserted the ventilator/intubation.  We opted to go ahead with intubation (if needed) earlier today.  Each time we have come into the ER, Derek has been asked whether he wants to be "full code" (use all measures to fight for his life) or partial or Do Not Resuscitate.  Because he has been so motivated and returns to normal so quickly following hospitalizations, lately he has opted for the "full code" with high hopes of recovery and longer life.  Believe me, we have discussed these issues to the nth degree in the past 3 years.  He's sedated right now.  They are also doing an NG tube to decompress bowel impaction and draining the stomach so there is nothing else to vomit.  This turn of events makes his situation much more bleak, although I'm reminded to have hope and keep trusting Jesus who died for us.  We are so thankful for all of your love and prayers.

Love,
Leann

Back in the hospital

Derek didn't have as much pain over the weekend as I expected him to, and he enjoyed going to church and the Sunday school picnic.  Monday was ok too until around 4p he had nausea and vomited.  Monday through the night his pain skyrocketed though, and he vomited a couple more times causing me to bring him in.  He's very out of it because of all of the pain meds now, and it's not looking real pretty for a possible infection again (since he is prone to aspirating vomit).  I figured this week would be hard, but I didn't think I'd start wondering if he would live through it.  Now, I'm not too sure.  Yet things have often turned around when you have all prayed, so I'm pleading for your love once again in asking of the Father His mercy for Derek, whichever route that means.  

Love,

Leann

Rough Day

Just a quick update.  Yesterday I felt great.  Leann took me to work and I stayed the whole day for a meeting.  Today I finally was able to get up at 11 am.  My pain headache and back wise was intense.  I even had a few drops of fluid in my left ear.  I am doing okay now, I hope that lasts.  I want to work from home as much as possible.  Next week we have a family vacation at the end of the week so hoping that works out.

Thanks for your prayers and encouragement.  We have gotten many cards in the mail and they are encouraging to us.

Derek

Home again

Things went differently this time.  It was easy getting out of the hospital so they let me go this morning and we are now home.  I am moving really slowly and for short distances.  Luckily I am not in pain.  But my right leg is really weak.  I think it will take some time to build up the strength again.  I got out of the van a couple times on the trip home but walking and getting up is not as easy as it was.

Thanks for all the prayers.  It just seems like good times are followed by setbacks over and over.  But we just continue to take one day at a time.  We sure dont know what the future holds but we know Who holds it.

Love,

Derek & Leann

Surgery over

I'm back in my room now.  The surgery went to plan which was a bit different than first described.  They put a rod down the length of my femur so it just doesn't break again below what they fixed.  So there is a long rod, then the screw that goes up towards to hip joint to hold the fracture together, and a couple screws at the bottom to hold the rod in place.  I am not in any real pain but there is a dull aching in my right leg.  Tomorrow Ill start walking with PT who isn't in on the weekends, or they would probably have me up already.

M&D Stoller just left now and Mom Sauder is bringing the two oldest kids up tomorrow. I miss them and cant wait to see them.

Thanks for all the prayers and love we have felt.  For some reason I have been more emotional today.  I listened to Wed nights service early this morning and they sang "Ready to go, ready to stay, ready to do His will"  That should be our attitude all the time, that we are just ready to serve our Lord in any way He wants us to.

Love,

Derek & Leann

Fall

We came to mayos for routine followup and unfortunately I fell last night.  I ended up with a cracked femur right near the hip joint.  So I am in the hospital awaiting surgery.  The plan is to have surgery on Sunday morning where they will put a plate and three screws in my hip.  A long screw will go up towards the ball and hold the fracture together.  Till then I'm supposed to put no weight on my right leg.  Without the surgery they said I would not be able to ever walk again.  With it I should be able to take weight on it right away.  I am not in pain when still but moving causes me pain.  The recovery is not super fast, they said it usually takes 6 weeks to get back to normal.  They said to figure on three nights in the hospital after surgery.

As far as the scans, the tumors have grown slightly.  There is a new spot in my brain near the original tumor site.  The lung tumors have grown slightly as well.  The doctor figures we should stay on the pazoponib and we will decide on the somatostatin shot after all the leg stuff is over.

They did an EEG test to look at my brain function and that was all normal, so that is good.

I was really proud of Leann during the feeding tube replacement.  She helped the nurse so she can do it at home by herself the next time.  The new tube is a different style that is more compact and you can't do it for the first year.  We are still getting used to it cause it works a little differently.

Overall it has been a downer of a day.  The leg is a discouragement as well as the fact the cancer is still growing.  I have been doing well so it's a surprise.  Just pray the surgery is successful and that we can bear the disappointments we have had.  Also, pray for our kiddos and their caretakers.

Love,
Derek&Leann

Home!

In a surprise reversal of fortune, the bacteria was not resistant to anything so I was able to come home on two G tube antibiotics, not the IV like I thought last night.  I just credit the many people I know that prayed last night.  I am very glad to be home, hope to go to church tomorrow and work next week.

I had a visitor yesterday right after I had gotten what I thought at the time to be bad news.  He just encouraged me to use the blog to let the word out.  It lifted up my spirits to be able to talk.  I am just reminded of how much we can help each other along the way.  My life has surely been enriched and helped by many of you.  Thanks for that and your many prayers.

Derek

Discharged!

Now here til Monday

Unfortunately, we are still waiting on final blood cultures to determine what type of antibiotics to go home on.  The doctor doesn't think that will be decided until Monday now.  It could be 2 weeks of iv at home.  Derek is not that excited about spending fathers day weekend in the hospital.  he is feeling pretty good, not 100 percent but pretty good.  Have a nice weekend out there and pray for us that the time doesn't go too slow.

Quick recovery

Derek made a quick recovery this time, but we are still waiting for discharge.  Patience level is ok :)

In hospital

Derek is back in with aspiration, but we caught it early.  He needs oxygen and antibiotics today.  Hopefully, he will recover faster than last time.  Thanks for your prayers!

Eye doing well

Derek's eye stitch went just fine and his vision is nearly back to 100%.  Thank you for your prayers!!

Eye Surgery next week

I was at the eye doctor again this morning for followup.  No change in the size of the abrasion from last week.  My eye is less red and the pain is almost nothing.  I wasn't doing the blood serum tears and erythromycin gel in the right order, so we got better instruction on that.

The long term plan is a permanent (but reversible if for some reason I don't like it) stitch in the lower outside corner of my eye.  This will reduce the surface area and thus the evaporation from my eye.  I will still have to wear either goggles or the bubble to protect my eye from drying out at night, but should be able to wear nothing in the daytime.  So next week on Tuesday I go to Proctor hospital and they will put me out lightly to do this procedure.  We talked about other options with the doctor like eyelid weights, lenses, and such but she really seems to think this stitch will work and help me quite a bit.  She said it will be totally unnoticeable to most people, so there is not the social implications like there is with a patch.  She considers other options to be more aggressive and we can do them later if needed.

I was talking today with the doctor and nurse.  I told them that for the record "I wouldn't trade with anyone".  We just all need that reminder from time to time.  She was commenting about how this person had breast cancer, this person has some family issue, etc.  To us, it often looks like everyone else has it easier.  But in reality, everyone has challenges.  We just don't know the full extent of what others are fighting many times.  I'm reminded of Paul's verse in Philippians 4:11, "..for I have learned, in whatsoever state I am, therewith to be content"

Other than the eye I have been feeling great lately.  I am eating more, which is a huge pleasure.  I still eat very small quantities by everyone else's standards but was able to eat a whole bratwurst over the weekend.  I think it's been almost a year since I could eat that much.  My feeding tube has been working fine since I got out of the hospital.  I don't entirely understand what was wrong then but it is not leaking now.  It still "pops" when I am hungry in the morning but that just serves to get me up and going.

I was kind of reflecting today, the biggest impediment I have is my challenge with speaking and people being able to hear me clearly.  Because of my facial nerve problems, my words don't come out as clear as most people's.  This is tough for me since my personality is so dynamic.

So big picture, I am really thankful for how well things are going.  I give the credit to your prayers and to God being compassionate to me.

Derek & Leann

Right Eye

Please pray that my right eye gets better.  I have a persistent corneal abrasion that is not getting better.  I was at the eye doctor again yesterday afternoon.  It causes me blurry vision and some pain in my right eye.  The left side is really good.  He bandaged up my eye but that didnt help much after one night.  I was not putting enough medicated jelly in it.  So we go till middle of next week putting more drops and jelly in it and wearing more bubbles (clear patches) even during the day.  After Memorial Day the doctor who does the stitching will be back in.  I'm hoping by then that things heal.

I don't know why this has gotten me down so much.  I was emotional and just wanted to cry on the way home.  I know it is not that big of a setback but I think it is just a sign to me that things keep getting worse rather than better.  I also felt a bit sick yesterday evening which was the first time in the last couple weeks.

Overall I've been doing good and had a good week at work.  But yesterday evening was really hard, both on me and Leann.  Just pray that we can keep going on despite the setbacks.

Another really exciting thing to me is our new barn is almost finished.  There are a couple small details like the driveway to finish up.  We got baby chickens yesterday and it has been so exciting to see Wesley take charge of things. He does all the work and all I do is supervise to make sure we aren' making a big mistake. We looked up online taking care of chicks so he knows what to watch for. I think it has surprised even me as to how rewarding small things are like this now.

Derek & Leann

Home

Very thankful that we finally made it home this afternoon.  It takes most of the day to get all the paperwork done at the hospital but by 4 we got home.

Thanks everyone for helping us through this with prayers, visits, and help with the kids.  Many gave rides or came and spent time with the kids so Leann could be with me at the hospital.  It is much appreciated.

Feeding is going okay right now.  I just pray that I can get back on my schedule and the headaches go away.  I made up another spreadsheet this afternoon so I can keep track of everything medicine wise.

Derek & Leann

Sunday, blessed

I want to wish everyone a wonderful and blessed Lord's day.  I'm looking forward to calling in for our church services.  We have received much scripture encouragement from many of you, and we appreciate the daily reminders to keep our focus on things eternal. 

On Friday, we saw a GI doctor who grew up near me, and I so appreciated his insight on Derek's stomach tube.  By 3p that day, we had it tightened up correctly and began to use it.  It has caused no trouble since.  I believe what was happening is that when Derek had an empty stomach last Friday morning (when it first began to tighten/pop and cause trouble), the stomach was trying to process food which wasn't there.  Instead, it tried to "process" the balloon which was there.  So, as the balloon got sucked into the intestines, it would tighten.  Then, because the disk on top of the skin did not allow it to go through, it would "pop" and release it.  So, the answer to this was to put food into the stomach to give it something to process.  Well, instead, he went two days without food as the infection process started.  Then, the slow drip worked well, because it gave food, but we had loosened the disk on the top of the skin thinking it was too tight.  Wrong answer.  By loosening it, when the stomach wasn't full, it had even more give to pull that balloon towards the intestines again.  So, in the end, by tightening the disk correctly and keeping food in Derek's stomach, the tube is working properly, and it did need time to heal up where it had been traumatized by pulling the prior tube out.  Anyhow, that is probably too much detail for some of you, but my nurse friends/sisters appreciate knowing the "reasons" sometimes.

On Thursday this week, Derek had an unusual strong right-sided headache start.  It has increased in pain, so he had to get a fentanyl patch (50 mg/hr) plus additional fentanyl and now dilaudid.  I believe this is from being off of the pazoponib for a week, and the tumors had begun to think they should grow.  It could also be a buildup of fluid around the tumor site.  They give lots of IV fluids to him while here. Thankfully, Derek's counts were all up, the hematologist okayed him to start pazoponib Friday night.  We declined a brain scan knowing that even if they found growing tumors, we didn't want to do any surgery or switch up the chemo right now.  Getting the dexamethasome (to reduce swelling around tumor) at the right dose for Derek is tough.  Too much = hiccups, too little = bad headache.  Right now, he is on 1.5 mg/day which only caused about 5 hiccups last night. 

We've been told he may go home today, and our hopes are high in that direction.  We came in with infection and stomach tube trouble.  Those have been resolved, and I think we can deal with the headache at home.  Please pray the headache lessens either because of dexamethasome, pazoponib, or simply because God wills it to go away.  Sometimes, we never know the causation, and I have to let my little mind rest not knowing. 

The weather has been gorgeous this weekend, and I'm looking forward to seeing if Derek will sit outside a little to enjoy it.  May your day be filled with Holy Spirit abundance.
Leann

And a not-so-good day

Yesterday, Derek had been approved to stop the drip feeding to his tube and wait a few hours and start a bolus feed (which is what he does at home by dumping in a can of food all at once).  Also, his blood counts were all okay to restart the pazoponib.  (Two days earlier when I thought we were going to, I learned we had to watch multiple counts, not just the one they had told me, so now they were all above what they wanted to see.)  So, it was an exciting afternoon for a couple hours.  Then, his head started hurting on just the right side and his right side of his face.  The normal pain med he was ordered did not take it away, just lessened it.  This morning they have upped that med, and hopefully he will have full relief from that pain.  But new pain like that probably isn't a good sign.


Then, just before I was going to bring the chemo over from home last night, the nurse put some regular meds through the stomach tube, and it leaked all over.  Thankfully, that was not the potent chemo drug dripping all down his skin.  The tube had not been leaking much at all.  Also, the contracting/popping he had experienced in the ICU with this tube started up again and was doing that constantly, much worse than earlier in the week.  This causes pain, and he was pretty miserable late last night.  Also discouraged, because of the setbacks.


So, this morning we are supposed to see a GI doctor or surgeon to look at this stomach tube and get it figured out.  It's been a problem from the start, so I hope they just put him to sleep and replace it with the old style tube that he liked, but we will see.  Also, they referred him for an appointment with hematology supposedly to determine "why" the blood counts dropped.  This is somewhat frustrating for me.  They dropped either because of the new chemo or because of infection, but I don't understand how they will know which caused it, and even if they know, what are we supposed to do about it?  He can't reneg on the chemo they gave him (the 2-month dose one), and they can't keep him "infection-free".  The only thing we could possibly do is withhold the chemo that WASN'T causing the counts to drop in the first place, and that doesn't make sense at all.  It was working on the tumors and helping.  So, it seems like an unnecessary delay to me on getting the other chemo going again.  Pray for my patience and understanding.


I'm sorry to have this setback.  Please pray for endurance and love love love. 
Leann

A good day

Derek is doing better still.  Oh, I have my moments when I wonder what's next and when, but he has walked down the hall halfway to the nurse desk and back, they have continued to increased his continuous tube feeding to 75 ml per hr.  I don't know what the goal is for hospital release, but I'll ask in the morning.

He is also still on the IV antibiotic.  Otherwise, he's been working on his laptop, enjoying visitors, and resting.  He's smiling more, asking for me to read the Bible to him, and talking about business opportunities.  These are all signs he is feeling better.  I'm guarding myself from thinking about going home too soon, but he told me his hope is by this weekend.

Again, we can't thank you enough for praying us through this trial.
Love,
Leann

Praising the Lord!!

Out of ICU

We've moved!  The Forest Park Building is our new home, room 3704.  Derek's been continuing to improve.  Thanks be to God!  He went for a short walk, is sitting up for a couple hours at a time, and has had the artery line and other monitors removed.  They are doing his tube feeds as a slow drip which is currently only up to 35 ml / hr.  (not enough to stay alive on)  Hopefully, this can continue to increase as his stomach begins working again as it should.  The leakage is very little at this rate.

Mayo Clinic has okayed him to restart the Pazoponib, and the hospital pharmacy here has okayed us to use the already mixed syringes we had at home, so tonight should be his first trial of that following the sepsis.  I pray it goes well and doesn't drop his white blood cell count again.

God's blessings be poured on all of you who care so much for Derek!
Leann

Improvement

I'm thankful to God that Derek's fever has broke, and his blood pressure continues to improve with less medicine to support it.  He slept a lot today, had some pain, but one of the joys of the day was how alert he was at times and talkative.  I saw some of his personality again, and even though the pain-relief drugs make him sleepy, he could have times of visiting. 

I rejoice with the four young men baptized in our church today, and we listened in to as much of the sermons as we could catch without doctors interrupting.  The main thought I gathered was nothing gets past God.  He knows and plans it all.  This lifted me up.

May you each be blessed for your care for us.
Leann

Saturday update

Hello family and friends,

I wanted to update today after I talked with the resident.  The main doctor team is not here today.  Some positives for Derek's healing are:  the white blood cell count that was less than 1 yesterday is 8 today.  They just want to make sure it doesn't climb too high too fast.  The goal is 11.  He was able to be weaned off one of the meds that raises blood pressure, and the second one was decreased by almost half.  The goal is to get off of these meds as soon as he can hold his blood pressure up on his own.  His fever is still wanting to rage, and we are keeping it in check with tylenol.  He's had discomfort with so many tubes to try to arrange around him and find a good position.  They changed a couple dressings that caused him to yell out in pain.  That's hard to take!  The outputs from his body are working, but he cannot eat by tube or mouth yet.  The tube is still leaking enough, they don't want to risk putting anything in his stomach right now, so all meds are by IV.  At times, he rests comfortably, but he starts to squirm and needs help readjusting.  He's taking pain meds as needed.  There is a lactic acid blood test that shows how bad the infection is.  If it's over 4, that's bad.  It was over 5 yesterday, and now it's 2.  So, I think we are making headway, but as uncomfortable as he is and the fever makes me say we are not out of the woods yet. 

I've appreciated the support and prayers expressed, and I thank each of you for caring so much for us.  I'm overwhelmed and thankful.  I'm heartsick to see him suffer, and I'm blessed to have a front row seat to observe his Walk of Faith.

"Be ye also ready, therefore be ye also ready.  For in such an hour as ye think not, the Son of Man cometh."

Love,
Leann

Please pray for Derek

After we came home from Rochester Tuesday, Derek has had a rough time with the replaced stomach tube.  It had been leaking, causing pain off and on, and some stomach muscle spasms.  In addition to that, we noticed his right face was dropping noticeably more than usual.  We contacted the mayo clinic doctors/nurses. 

Stomach Tube:  We loosened the disk on the stomach tube, and it seemed to check out ok this morning.  It is still leaking and causing him pain.

Increased facial dropping:  We increased his dexamethasome back up to 4 mg/day which he was on back in November.  This helped the facial droop some, BUT it caused the old hiccup problem.  And these hiccups are hideous.  They come at about 40 per minute, and do not let up much at all.  Our only coping method was to decrease the dexamethasome again, because he reacts negatively to the hiccup-stopping meds we tried before.  Hiccups also irritate the stomach tube site.

All this is going on, and this morning about 9a, he says he has the chills.  About an hour later, he vomits, and so I start suspecting aspiration pneumonia or a negative effect from the new chemo which had caused nausea on the test dose (which he took a 2-month dose of it on Tuesday).  He developed a fever over the next couple of hours, and when our mayo doctor heard that, he said get him in to be seen.  We packed the van for a drive to mayo clinic, but when we got Derek off the couch to head to the van, he couldn't walk well at all, and began to vomit.  So, we decided Peoria OSF emergency room was where we needed to go.  Thanks to God for showing us clearly when the time came. 

When we arrived, they said his temperature was 104.9!  Also, his bloodcount was less than 1.  There's lots of you out there that know what that means more than I do.  To this point, we have never watched blood counts and never been concerned about Derek being more susceptible to stuff.  We've never had to.   So, needless to say they began putting lots of needles in and antibiotics, anti-nausea meds, fluids, and the x-rays were taken.  As of now (things change a lot in these situations), he has sepsis and pneumonia.  His blood pressure dropped to 78/50 and so they put a central line in for those type of meds and an artery line in his arm to continuously monitor blood pressure.  This is nerve-wracking to say the least. 

Derek has been ready to go home to heaven for so long, but when I'm actually watching him in a life-threatening situation, I marvel at his peace and long-suffering.  We have many tears for his pain, and prayers for God's mercy.  Please pray for God's will to be done.  I would love to have many more long pleasant days with Derek, but he's been fighting so long and so hard, and he's so worn down.  We love you and thank you for all you do!

Leann

Scan Results

I met with the Dr's today at Mayo's.  Overall the results are pretty good and better than I expected.  There might be growth in the lower skull but that is up for some question.  The spine is the same.  In the lungs, some spots have shrunk in size, some are a bit larger.  So overall the doctor seems pretty happy with how things are going.  We have never been given the expectation that any tumors would shrink, just staying the same and not growing is success.  The doctor before he left said "you are tough".  I replied that might be but I think it has something to do with all the people praying for us.  He said, "don't change anything"  He didn't want to admit what was responsible but the point is, don't quit praying now.

Regardless of the success of the current chemo, we are adding to it another medicine which has a time delayed release so they give it as a shot with time-span to coincide with my visits for MRI scans.  I got a test injection today that made me feel sick to my stomach, which is not a normal side effect.  Some anti-nausea medicine and I was feeling better.  So hopefully I can manage this stuff cause usually the side effects are low and it is really no more hastle for me.  This is the medicine that the ostreoscan said I was a candidate for.

A year has passed since my stomach tube was put in so we met with the nutritionist today.  Tomorrow morning they will swap this out to a balloon style which is more flush with the skin.  There is a little more risk of it coming out but I can replace it myself when it wears out.

They want me to come back in 2 months but this time are doing just the brain and C spine. So that means one MRI session instead of 2 and cuts the time down.

In summary, just keep praying and pray specifically that the new med does not make me too sick.  Keep praying that my pain is not too great.  So far meds have been keeping it under control.

Derek & Leann

40

I turned 40 on Friday.  Above all I am thankful to still be here for my family.  I think when you view every day as a bonus, then it is easier to deal with getting older.  They had a lunch at work and then we had a party in the evening.  It brought back many memories to have my friends and families together.

Health wise, I have been doing fairly good.  Some days are up days, some are down.  In general my pain is somewhat better.  I tried totally going off the painkillers and couldn't totally do it but I am taking less than I was, sometimes just once a day.  My eating has not been as good lately but I am still able to eat some by mouth.  We are going back to Mayos in two weeks for routine scans.  The next medicine was approved by our insurance so I may start on that then, we'll see what the MRI scans show.  The next medicine is something they give by injection once a month,  I might do that alone or in combination with pazoponib which I take every night.  I have been able to go in to work almost full time.  Add that to my time at home thinking and doing email and it exceeds full time.

I heard an account which agrees with my personal experience.  Someone who is dealing with medical issues said he decided to open up and share more about what he was dealing with.  In the last few weeks he has gotten a good report and the doctors don't have an explanation for the improvement.  He credits the prayers of others.  I think I have said this before but we have to be reminded of a simple truth.  Others like to know specifically what they can pray for.  We are rewarded when we have the humility it takes as this is not human nature.  It aligns though with what the Bible teaches us.  It's not always easy to share but we need too.

Please pray that the pain I do have would continue to abate and for wisdom in a couple weeks to make any decisions we need to make.

Derek & Leann

On way home from mayo

Hello to our family, friends, and even some we don't know,

Derek just finished his next trip to Rochester.  This set of appointments was focused on finding out if he qualifies for another class of drugs to fight the cancer.  It turns out that Yes, he does.  This is a positive thing, but we are also cautious because that doesn't mean that class of drugs will work.  We've decided to wait 6 more weeks on the current drug pazoponib.  It has decreased the pain he was having in January, which could indicate it is preventing further tumor growth.  In the meantime, our health care team will begin the approval process for the class of drugs we will pursue next, when needed.

There have been some really difficult times for us in 2014.  In the middle of January, I had a first-time hives outbreak, even calling 911 for help when my face/mouth began to swell.  To this day, I do not know the cause.  According to my doctor, 50% of hives cases are mysteries.  My most likely guess is stress hives, although I didn't feel extreme stress beforehand.  Thankfully, that has resolved.  Then, mid-February, Derek had a short seizure following an increased dose on his chemo.  Another 911 call, but we did not seek evaluation since we were pretty certain of the cause. We lowered his chemo dose again, and that has resolved.  In one way, it's good to know he's taking the upper end of what he can tolerate of pazoponib to fight the cancer.  Our thanks goes out to Tremont rescue 702 for their response and considerate professionalism!

To recap Derek's handicaps, he has leg weakness on both sides, but more on the right.  He uses a walker most of the time, but for greater distance or sometimes ease, he has a powerchair.  He has right facial weakness causing some speech difficulty. Also, some swallow problems, so he uses a feeding tube for the bulk of his nutrition.  His voice is somewhat better since the voice box injection in December, but nothing like it was before cancer.  Some days are better than others with both voice and swallowing.  His right ear is sealed off from a surgery, and he wears a hearing aid in the left.  When speaking with him, it's best to position yourself to his left or in front facing him.  His vision has been good, but we do have to keep the right eye moist since it doesn't close properly.  In spite of all of this, he still enjoys going to work, church, being with family, and playing what he can with the kids.  He also mentions often how good it is just to be with me, which makes me feel so happy.

Our children are doing well at their new school, and I'm loving the schedule we have established.  We have also kept a pretty full social calendar even through the tough times enjoying fellowship and gaining encouragement.  Derek took part in judging the robotics competition in our area last weekend.  He said it was intense, but he enjoyed the opportunity as well.

We will plan another set of MRIs to check tumor size in mid-April.  As always, we covet your prayers for healing, pleasant times together, and Joy in serving our Savior Jesus.  He is so wonderful, beautiful, forgiving, and kind.  He welcomes anyone to Himself for the highest healing, that our sins
may be blotted out.

Love to all,
Leann (& Derek too)

Another mayo visit

We came up to mayos the last couple days since they wanted to followup with my pneumonia and I have had more back pain.  I had a complete set of scans yesterday and this morning.  We met with the doctors this afternoon.  The scans show the upper back tumor has grown a little.  This is consistent with the pain i have had.  Their basic conclusion is that I can increase the pain med if needed.  As for the pazoponib I am on, they were ready to give up on that.  We convinced them that I stay on that for the time being since my symptoms only increased during the time I was off it.  This was the hospitalization and a few days afterwards.  They want me to do an octreoscan to see if i am a candidate for a certain type of drug.  this test looks for somatostatin on the surface of the tumor.  i wasnt able to get that test this same trip but will do it next time i am up.  Dr Buckner is going to look into a couple other drugs in regards to the genetic testing I did last year.

I am not surprised by what the scans showed, but it is discouraging nonetheless.  Thanks for your prayers over the past weeks.  As for future prayers, just pray that the pazoponib can work and my pain is controlled.  Otherwise, I have been feeling good, my brain has been working,eating is going better for the most part.  I have lots of reasons to be thankful.

Love,
Derek and Leann

Back to work

Yesterday, Derek went back to work with vigor.  He's excited about stuff again, which is wonderful to see.  The Hemoglobin was back up to 10 on Monday, so we restarted the chemo.  He was off of the chemo a total of 10 days because of the aspiration pneumonia.  While he was in the hospital, he was put on a "stress-dose" of steroids which was 10x the amount he was on at home.  I'm questioning whether this was needful, as it is VERY hard coming off.  TONS of pain!  He has had to go back on the narcotic pain meds which in turn make other (pee/poo) problems.  It just doesn't seem like it was worth whatever the benefit they expected him to get from it while at the hospital.  Each day is getting a little better though.

Derek doesn't want me to say much about this, but I want to spare any of my friends any difficulty I can.  He plans to go through the proper channels to notify OSF of the mistaken advertising, but I will tell you the bottom line:  OSF is not "working with" Mayo Clinic, even though their billboard, elevator signs, and on-hold voice messages say so.  I have so much trouble getting test results between OSF and Mayo's.  It is probably their goal to make this happen seamlessly in the near future, but as the patient/caregiver, we still have to be the ones to get the results ordered, pick them up ourselves, and mail them at the post office to the right person.  When the doctors say they will be in contact with our Mayo doctors, it doesn't happen for days.  However, I will also emphasize that we greatly appreciate the experience we had at the ER at OSF:  Immediate, efficient help for our needs.

On to the kiddos... we have decided to have them attend a private school about 15 minutes drive south of us.  Today was their second day, and although they were quite nervous the first day, it went well.  I still may have some teaching in the afternoons if there is any catching up to do.  They will be on a half-day schedule for awhile to see how the transition goes, so I drop them off at 8:30am and pick up at noon.  I have some mixed feelings about it, but mostly feel relieved that I have less responsibility in 2014.

On another note, I want to express my heartfelt thanks for all of you who helped out in the many, many ways we needed you in 2013.  Early in the year, we had Derek's lung collapses and many filled in with teaching responsibilities and household chores.  Some drove us to appts or sat with us in hospital rooms.  In July, we had the lung surgery.  We appreciated the many visitors and babysitters.  I even had a few that stayed nights at our house from time to time over the year.  Never knowing what our needs may be, it's often difficult to communicate them, especially in advance.  Our church has been a wonderful and uplifting source of comfort, and finally and most of all, our Jesus and our Father in Heaven who has sustained us and been the lifter up of our heads.  Praise be to Him!  We keep trusting his almighty Presence for each new day and are thankful for His mercy and grace to help us through the suffering we have been called to walk.  Many times, it is joy just turned sideways a little.  I've thoroughly enjoyed many long hours with Derek, at his bedside or sitting in front of the fire, serving him while he encourages me.  It's beautiful.  We love you and pray for the many others who are grieving, broken-hearted, missing loved ones, or enduring hardships.  There are a lot of troubles worse than living with cancer.

Leann & Derek

Home Update

We finally got out of the hospital on New Years Eve.  I think it would have been easier to break out of jail. (I'm exaggerating a little but not too much)  Sorry for not updating then but I never got to it.  New Years Day was spent at M&D Sauders having our Christmas.  The last two days I have slept in and then done some work via laptop from home.  Recovery has not been as fast as I'd like.  I am less winded but still feel some efffects.  I have been waking up with headaches so it is taking me a bit to get going.  No big plans around here for the weekend.

Love,
Derek & Leann