Mayo Followup

We met yesterday with the doctors at Mayo.  There is really no additional news to report, but in general their attitude is a little more subdued I would say.  They are pleased with my progress in recovery overall.  They see nothing on the scans at this point that is a problem.  There is an area on the scan where everyone is unsure whether it is tumor that was missed or scar tissue or exactly what.  The one thing that every single doctor has said is that with meningioma, there is no way to know a tumor is growing other than to see an area increasing in size from scan to scan.  At this point nothing is different in size than the June pre-radiation scan.  I suspect the overall reason they are more subdued in attitude is that the typical behavior of grade 3 meningiomas is not good. They have a respect for them and how serious they are.  Dr Driscoll said he has seen it before where by the first post-surgery scan the tumor has exploded and grown back enormously.

They would like me to come back in 4 months and have the next MRI done there at Mayo.  They want to tweak a little bit the way it is run to suppress the coloring of the fat packing put in during surgery.  The other thing we realized is that the surgeons are really the best ones to read the MRI, not the radiologists.  The reason is that the surgeons know what was in those areas during surgery and have pictures from surgery they can compare to.

So overall we are thankful for the progress so far.  And it is good to be reminded that we still need to trust God for each day rather than ourselves.  Thanks to everyone for your prayers and support through this year.  We appreciate it very much.

Derek & Leann, Lexi, Wesley, & Whitley

We met Friday with Dr McDonald at the Proton center for my first follow up exam.  He his happy with everything at this point.  We were a bit worried the last few days after we read the Peoria radiologist’s written report of the MRI I had taken here on Monday.  He noted “probable residual meningioma” which had us a little scared.  Dr McDonald had the following explanation.  First, whether or not the area of concern is tumor or not is not easily discernable.  It is an area in the MRI which is slightly lighter in color, which could be caused by the radiation itself.  This area was radiated during my treatments, so it is not tumor that was missed.  Meningioma tumors are different than many other types of tumors, in that they do not shrink or disappear during treatment.  If this area was tumor, it would still show up on the MRI even if it is now “dead”.  The only diagnostic with meningiomas is by comparing their relative size to see whether the tumor is growing or not.  The Peoria radiologist did not have the pre-treatment MRI taken in Indy to compare with.  When comparing the current MRI with the pre-treatment MRI (late June), this area looks the same.  Dr McDonald has a weekly review of his cases with the radiologist in Indianapolis who would have done my June MRI and he is going to review this further with him next week.  At this point Dr McDonald feels really happy with my progress and is not concerned.  He said the next MRI from his standpoint could be done in 6 months, which is good news to us.  Previously they had said every 3 or 4 months for a year, so we take this as a good sign.

There is a little area at the very back of my head where my hair has started growing back.  He said this is normal that some of it will come back but there will still be a big area around and closest to my ear where it will never come back.  This normally happens 3 months after treatments stop, and mine started about 2 months after treatment.

Mom & Dad Sauder went along with us, so we had a really nice time catching up with them.  It turned out there was so little snow that the roads were not an issue at all.  The kids stayed with Mom & Dad Stoller and had a great time there.  Next Tuesday Mom  & Leann & I are headed to Mayo’s for Wednesday morning appointments with the surgeons and neuro-oncologist there.  We are thankful for the good report so far and prayerful that the good news will continue next week.  Thanks everyone for your prayers for us this past week.

December MRI and doctor visits

Greetings all,

Derek had his MRI yesterday, the first since July.  We will get the official report from our radiation Dr. McDonald this Friday the 9th.  Then, we plan to meet the Mayo surgeons Dr. Link and Dr. Driscoll and oncologist Dr. Hammock on Dec 14 to follow up with them.  We are praying for a clear report so our lives may go on uninterrupted from this check, yet we know God's Grace is available for whatever we may face.  We thank you for praying for us and keeping us in your thoughts this week and next.

Most of Derek's days he feels about 95% at what he was a year ago before brain cancer symptoms.  However, when he has a more physical day like moving furniture, planting trees, or things like that, he feels at about 40% of what he used to be able to do.  This is frustrating to him, and we will ask the doctors if this is to be expected or if we can change something to help it.

Other than that, our lives have returned to a happy normal enjoying our kids, our home, our church, our friends and family, our work, and each other.  With Christmas around the corner, we wish you all the blessings of knowing our Lord and Saviour who was born in the manger, lived sinless on this earth, and sacrificed His life for our redemption from sin.  To be with Him forever is our ultimate goal.

With Love,
Derek & Leann
Lexi, Wesley, & Whitley

HOME!

We are very thankful to be home. We found everything to be in very good order here. A few people had snuck in and left little notes and flower arrangements around the house,so it was very welcoming. Thanks also to all those who helped clean this week.

I had to think about what it will be like for Christ to return. Will he find us watching and ready? We left our home in the care of others and when we returned we found that they were faithful to take care of it for us. Christ has left us work to do for Him. Hearts to keep. Children to love and train. Souls to pray for. I pray we will give Him our ALL.

Derek & Leann

DONE!

I had my last treatment this morning and we are in the van on the way home now. I cried with joy to be done. Leann cried because she will miss the simple life we had here. The kids are excited to see their friends again.

Thanks for all your prayers and support through this journey. Pray now that we can adjust to normal life again.

Derek & Leann

Treatment proceeding!

We just saw the doctor and my skin is good enough to proceed with treatments this week! Thanks for all your prayers! I was supposed to get my treatment this morning but the beam is down right now so sometime later today they will call and let me know when to come in. I still have some rash on my neck and arms but it isnt bothering me too much.

Derek & Leann

Wound Clinic update

Great news this morning!  My skin is healing, and although it is not completely healed yet, it is improving rapidly.  The nurse practitioner at the wound clinic said I am a “fast healer”.  Probably more like “greatly prayed for”  She thinks I will be able to start treatments again on Monday.  We then stopped and saw the radiation doctor, Dr McDonald.   He likes the progress and is hopeful it will be well enough by Monday, so he gave me a treatment schedule for next week.   So Leann will keep up the good job with the dressings this weekend and we’ll pray the skin is healed by Monday so that we can get this over!

Derek & Leann

Allergic Reaction on way out!

While it wasn't a huge sudden change, I can tell now that the swelling in my other ear is down, and my eye is not looking so puffy.  There are still some signs of the rash, but it is definitely improving.  Thanks for all your prayers.

Leann did a good job cleaning and changing the dressings.  It's not a real pleasant task but she does a good job of taking care of me.  It's hard to tell since I'm not an expert in skin & wounds, but it seems better than before.  It's sure nice when I'm not trying to use a kleenex every minute to catch a drip from my ear.

The rainy and coldish weather has been tough on everyone here.  We are really looking forward to getting home.  Pray that we can all hang on until I get done with the treatments.

Derek & Leann

Wound Clinic visit

Our radiation doctor referred us to the local wound clinic, and the ear area was seen by a nurse practitioner and dressed by her nurse with Biafine directly on the radiation area, Solosite sandwiched between two sheets of Cuticerin (non-stick gauze), some dry gauze on top, and an elastic mummy looking cap to hold it all on.  We are also to apply Hydrocortizone cream on the extending rash/inflamed area which now has spread to the other ear, Derek's neck, right cheek/eye, and arms.  The general consensus at this meeting was that Derek is probably experiencing an allergic reaction to the silver sulfadiazine topical ointment which we applied from last Thursday until Monday morning when we began to suspect something wasn't right.

My responsibility is to re-dress this twice a day.  We report back on Friday at 9am to see how things are faring and hopefully get some prediction at that point when radiation treatments can resume.  We have 5 left.  So close, but so far away!  We have met a wonderful Bloomington, IN babysitter through some references which we used during the doctor visit today.  I'm so thankful for God providing this...she lives very close to the wound clinic.  Having our three children in that wound clinic treatment room at exactly nap time today would have been a site to behold.

Please keep praying for the wound to heal enough to continue the radiation treatments.  We love you all.

Leann

Pause in Treatments

So, bad news this afternoon in meeting with Dr McDonald.  He wasn't really convinced that it is an infection, and thinks it might rather be an allergic reaction.  Either way, he wants to put my treatments on hold till my skin can heal.  He's hoping that a week will do it and then we can continue.  I have an appointment at the wound center here in Bloomington tomorrow afternoon at 2.  If they can get this to heal, then perhaps I could do my 5 last treatments next week.  Originally next Tuesday was to be the last day, so if I can really start again on Monday, I could still be homme by the end of next week. At this point I am starting to loose confidence in the doctors at the therapy center.  I'm hopeful that the wound center can explain better what is happening with the rash, swelling, oozing, etc.

So, pray that we can get some clear direction tomorrow at the wound center and that my ear could heal so the treatments could continue.  I really want to just get them over with so we can come home!

Thanks everyone for the cards, prayers, & support.

Love,
Derek & Leann

Skin Infection

Quite a weekend!  We had a lot of social plans, and my ear continued to get worse.  Friday night we were at Bollier's for dinner and stayed overnight.  Saturday we had Wagenbach's coming out to see us and we were staying at a motel in Indy.  We ended up scrapping the hiking plans because Saturday was hot and sunny, which were both really bad for my ear.  I was putting silver creme on it regularly but it kept getting worse.  The side of my face started swelling and a rash was spreading.  By Sunday I realized I couldn't go to church with it looking that bad so I stayed at the motel.  After church Leann got me some non-stick gauze and a bunch of supplies so we could wrap my head up like a mummy.  With it bandaged up, it kept me from having to daub the drips every couple minutes and kept everyone else from having to look at it.  So we were able to go to Schroeder's on Sunday night, the children's museum on Monday, and Ackerman's on Monday night.  It was a lot of activity, but way better than sitting around our apartment the whole time.

This morning when I got up, the side of my face was swollen worse, and my eye was starting to swell shut.  Plus my left ear (the good one) had a rash and was starting to swell up.  Luckily my treatment appointment was early this morning so I've already been there and saw one of the other doctors.  He prescribed an anti-biotic and thinks I have a skin infection.  I'm supposed to go back this afternoon and see my regular doctor at the therapy center.  With my face swollen, it was pretty tough for them to get the mask on and strapped down, but they finally got it.  So, now I'm down to only 5! more treatments!!.  If you can't tell, I am ready to be done with this and the whole family is counting down the days now.

This could be a whole lot worse though, at least I'm still able to be active to some extent and the pain is not more than I can bear.  Thanks for continuing to pray for us, and specifically that this skin issue would heal.

Love,
Derek & Leann

A Better Day

Today was definitely a better day than yesterday.  Yesterday I pretty much spent the day laying in bed not feeling like doing anything.  Today I was up and about more.  We met with Dr McDonald today before my treatment.  He did say that my ear is looking worse than they normally see, but that we are doing all the right things.  Keep putting the silver ointment stuff on it.  My ear is really raw, and oozes quite a bit at times.  It's painful sometimes too, but nothing I can't live with.  He said not to expect too much improvement until the treatment is over.  Only 6 more treatments!  Four next week, and then two the week following.

We can feel everyone's extra prayers the last couple days for us, and really appreciate it.  Just pray that my ear would not get any worse, and that I can endure it with a good attitude!

Thanks for your love and support,
Derek & Leann

Ready to be done!

It's been a good week since I last wrote in many ways.  We've had lots going on and been to McCormick's Creek State Park a couple times.  But I'm feeling a lot worse physically.  The naseau has been a lot worse this week.  Monday and Tuesday night I felt pretty sick and didn't feel like eating.  Wednesday was a little better but now my ear is getting so sunburned it is really starting to hurt.  Behind my ear in the crease where my ear meets my head it got really dry and the skin flaked off and now it's pretty painful.  I'm ready now for all this to be over so my body can start to heal from the radiation.  Only 8 more treatments after this morning (I go at 8 am today).

Tuesday night we drove back to Illinois and then yesterday we were able to go to the Farm Progress show in Decatur.  I wore my fishing cap and sunglasses and got along pretty good.  It was great to see a lot of my co-workers again and get my mind off of my treatments and think about work for a while.

My treatment last night started some different radiation fields.  They had been treating 3 fields previously and now it is just 2 which are coming at different directions.  One is straight down from the top of my head, and the other straight in the back.  I'm hoping that maybe my ear will take a little less direct hit from now on.  This also means my schedule will change again, and now it won't be supper time treatments but rather earlier in the day again.  I'm looking forward to a 3 day weekend to recuperate a little more.

Please pray that my nauseau would subside, and that my ear can heal.

Derek & Leann

Two weeks flew by!

Sorry it's been two weeks since I last wrote.  I guess I now know what the retired people mean when they say they are busier than ever once they aren't going to work every day!

The weekend in Eureka was really nice, but it was also really hard to come back to Indiana.  We caught up with a few people while home, and I went into work for 1/2 a day.  It was a really emotional time for me for some reason. Saturday night as we were singing with the Stoller family, I just started bawling again like I did the first few weeks.  Not sure why it hit me again, but I have been more emotional the last couple weeks.  Sunday night as we drove back it was sort of sad to think about spending 5 more weeks out here.  Once we got back though, things have been going fine.

Last weekend Doug & Brooke and their family was here.  We spend Saturday on a pontoon boat on Lake Monroe and the kids had a really fun time riding the tube behind the boat.  This week has been more busy again.  We had a visitor Monday, another is coming tonight/Friday, and then another family on Fri/Sat.  It's been really nice too since the weather cooled down and it's easier to go on a walk or bike ride.  I've riden my bike a few mornings now so that's another new achievement.

Two weeks ago it was a really rough week as far as my nausea goes.  Now this week has been much better.  My schedule has change to where I am going for treatments around supper time.  The college students moved back yesterday so the 15 min trip turned into 35 to get to my treatment.

We appreciate your continued prayers.  Pray that the nausea doesn't get me too down.  There have been days where I've been somewhat discouraged.  I'm also worried about the adjustment to life back home, but that's 3 weeks away and I haven't found the verse saying to pray 3 weeks ahead, so you can save those prayers for later.

Derek & Leann

Half Done!

With today’s treatment, I have 18 out of 35 treatments completed, so now I’m halfway done!  We are looking forward to a long weekend in Eureka as the treatment center is closed Friday for maintenance.  So I had my treatment at 10 this morning and now we are driving home.

In general I am feeling pretty good.  I had a little more nausea this week but I was only taking one pill a day, so I’ll up it to 2 a day next week.  I have had very few headaches the last week so that helps a bunch.  I think my hair is finished falling out.  It only took a few days for it to come out and then it stopped.  I was surprised by how large the area is.  It’s not very visible from the front but on the right side it covers the lower side of my head behind my ear.  There were a few days where I was kind of discouraged about it, but I’m getting used to it now.  When I see someone in public with a more serious handicap, I’m reminded that looking a little funny with some missing hair is really not anything to complain about.

We were blessed with quite a few visitors since last week’s update.  We are keeping busy so the time is really flying by quickly.  I’ve been worrying some about trying to adjust back to “normal” life when we get home.  I know everyone will be patient with me, but I’m finding that multi-tasking doesn’t work at all.  When things are panicked around the house, it really gets to me quickly and I immediately get a headache and have to lay down.  I’m hoping this is only temporary as my normal work and home routines are ones that can be hectic.

Thanks again for your prayers and support.  We continued to be overwhelmed by the cards and the love shown us by the Indy congregation during our stay here.

Derek & Leann, Lexi, Wesley, & Whitley

Hair falling out

I’m in a lot better mood this time than I was when I wrote the last update.  The anti-nausea medicine seems to be working.  I’m not perfect, but it’s a lot better than it was late last week.  The headaches have been much better in the last week and I’ve quit taking ibuprofen/Tylenol every morning.  Now I take it just when I get a headache.  So overall I’m feeling a lot better this week.  I just noticed yesterday when rubbing my head that I had loose hair on my fingers.  Now you can see that below and in front of the incision my hair is very thin and almost gone.  It should be just a small area around and behind my ear, but it will be permanent.

The treatments have not been going as smooth schedule-wise as they were at the beginning.  On Monday the machine broke down 2/3 of the way through my treatment, so I had to wait around, go eat supper and come back, etc.  They finally got it fixed 5 hours later.  They are typically running about ½ hour behind now, where at first they were usually early.  But it’s not a big deal.  I just got to listen to every pundit under the sun explain what they thought would happen with the debt ceiling deal in congress.

The kids have been in Illinois since last Friday and came back Wednesday.  They got to spend some time with each set of grandparents and cousins.  Leann and I had more “date” time than we’ve had in years, and enjoyed the break.  Whitley was not feeling well while in Illinois and is getting her 2 year molars.  Plus she has a bunch of cancer sores in her mouth.  She’s started eating again the last couple days so that’s a good thing.

We’ve been pleasantly surprised by the number of visitors while we are here.  We appreciate the continued prayers and support we have been feeling even while out here in Indiana.

Derek & Leann 

Week 2

This week has been better in many ways, especially the cooler weather.  Monday night we got to play baseball with Wesley at a nearby park.  Tuesday was "field trip" day to the Monroe County Fair.  Lexi wanted to see the horse show so she could pick out which color horse she wants to get.  I was explaining everything that goes into showing animals at a fair, but then I realized she has no interest in showing, and was just there to pick one out.  We watched a bit of the dairy show and then the kids got to hold chickens in the poultry barn.  After my treatment we went back in the evening for the kids to go on the rides.  Wesley loved the bumper cars, Whitley's worst part was when the ride ended (major fit).  Wednesday was packing day as we have to switch apartments this weekend and be out totally till Monday.  Nancy, the concierge at the treatment center, has been very helpful and let us put our stuff in the garage at the house she uses for her office.

My headaches have not been as bad this week.  The Mayo's nurse had followed up with me and suggested that I could be getting "rebound" headaches from taking Tylenol long term.  She suggested a few days of tylenol, then a few of Ibuprofen.  I think that has helped as they have generally been better.

Late last week I noticed a hint of nausea and wondered if it was from the radiation.  By Sunday/Monday it was pretty much gone, then was back a little and growing each day after Tuesday.  Nausea is one of the possible side effects, but I thought it would come later or maybe not at all.  I got some medication for it today which seems to be helping tonight, but guess what the side effect is:  headaches - now I have one again.  So my spirits have not been as great this week, although in the scheme of things this is a minor trial.  The main thing is that no food really looks that great to me and I could go a long time without eating except I know I need to.

The Indianapolis church has overwhelmed us (like everyone back home) with love and support.  They have a meal list going to give us a couple frozen meals each Sunday.  We've been invited over to homes on Sunday afternoons.  So we are thankful to have a new church family here to make us feel at home and to pray.

Love,

Derek & Leann

first week down

Well, the first week of radiation is almost over.  The treatments have been going fine, and yesterday’s was down to 25 minutes, less than 1 hour from time I left till time I got back home.  I come out with a mesh imprint in my face from the mask that last 5 or 10 minutes.  It scared Leann the first time she saw it.  The treatment center is on time or early usually.  Sometimes they call and say to come in sooner.  I walk into the room, lay down on the table and they strap me down.  Then the table which is on a robotic arm moves up into position in the gantry.  Then an xray machine takes a shot of my head so they can cofirm my exact location.  After that I feel the table move a little as they correct my location.  Then all the techs leave the room and I hear a doorbell dinging sound.  I can tell when the beam is coming because something in the lens contraption makes a clicking noise.  Once that stops they come back in and switch the lens & aperture around and move the snout to the next angle.  Between the second and third shot they take another xray.  I almost feel like I am about to fall asleep during these treatments, but I don’t think I really have yet.  If you are claustrophobic you would not be able to survive these things.  The mask feels pretty snug and you can’t move much.

As for the treatment schedule, mine will always be in the afternoon.  There are two sizes of snout, a 10 cm and 20 cm.  They group them together so they don’t have to switch it as often and do the 20 cm in the afternoon.  I was hoping for early morning treatments but that isn’t going to be the case.  Right now we are sleeping in (I don’t get up till 7 usually) and then we are trying to do school right after breakfast.

As for the family, things are going better the last few days.  The first couple days there were lots of little things bothering everyone, but they are getting used to it now.  We are not looking forward to the college kids coming back because with the construction, roads are pretty much jammed already.  The last few days it has been too hot for the pool during the day.  Yesterday we went fishing and had a couple bass on the line but failed to get them landed.  There are quite a few turtles in this pond here and Wesley is aiming to catch one.  One is a huge guy, I think he’s a snapper.

School is going good.  Wesley is starting to sound out words in his reader.  Lexi is keeping her nose in books.  We went to the library.  Wesley’s picks were either about killer whales, moose, construction, or airplanes.  Mommy picked the books for Lexi off of a list of “good character building” books.  She hasn’t been as excited about reading them, but last night we started reading one as a family and then I caught her in bed with her own bookmark in it.

Whitley has been learning to go in the big girl potty.  We are just on our second day but making progress already.

Wesley and Daddy played catch last night with the new softball and glove we got for Wesley.  When it cools down we’ll find a park and let him use his new aluminum bat.  It’s too crowded around the apartment to be hitting balls around.

We are thankful for air conditioning, our vehicle, a safe place to stay, and being together as a family.

 Have a blessed weekend!  Thank you for keeping us lifted up to our Heavenly Father.  He loves and cares for us. 

Derek, Leann, Lexi, Wesley, and Whitley

Different address

1333 S. Fenbrook Ln.
Bloomington, IN  47401

Because of the switcharoo on our condo, this address is the best to use for us in Indiana.

New Home

We are thankful to be somewhat "settled" with a place to stay.  Yesterday morning we got a call that there was a "maintenance emergency" in our apartment and we wouldn't be able to get in until mid August!  They decided to redo some wallpaper, which ruined the drywall, and then they found mold, etc.  So after a few phone calls they figured out we could take a different unit (in the same complex) for a couple weeks and then we may have to move again to a different unit.  At least we are not in a motel, and the setup is the same as far as the room layout.  We arrived today and no additional surprises.  Mom & Dad Stoller came out with us (we couldn't fit everything in our van) to help us unload (since I still can't lift anything over 10 lbs).

I think getting up at 5 so we could leave early was rougher on the kids than we thought it would be.  Lot's of grumbling today, too hot, too long a bike ride, not enough floaties for the pool, wish we didn't have to come here, wrong restaurant, etc.  I think everyone will feel better tomorrow when we have more sleep.

This afternoon was rough for me headache wise.  I took an hour or two nap and woke up with a headache, a lot like happens in the morning.  It will be interesting to see if taking it more easy here helps them to go away, or if this is something that continues to happen when I first get up from sleeping or napping.  Other than the headaches, I really feel good.  No other pain, and my facial paralysis is 95% recovered.

Monday we go to the Proton Therapy center at 11am to meet with the doctor, then sometime later in the day I'll have the "dry run" that verifies all the equipment is working out properly.  Tuesday will be the first actual radiation treatment.

Thanks again for all your prayers and support,
Derek & Leann (and family)

Packing Up!

Just 2 more days till we head for Indiana on Saturday morning.  Today we plan to start packing some things up.  The apartment is furnished, so we are just taking clothes, school books, fishing and activity things, and office things like the computer and printer.

I continue to notice improvement each week in my abilities to move around and in my facial movement.  It's almost entirely back to normal now.  The past week has been a bit discouraging though as the headaches are not really improving yet.  It seems related to motion of my head, and somewhat how much activity I've been up to in the past day.

We continue to be overwhelmed by the love shown to us and everyone who has helped us in some way. I made the comment yesterday that we could do something every day for someone else and we'll never be able in our lifetimes to repay what has been done for us.  I was told that we don't have to, but we just do what we can for others.  I had the thought of how similar this is to salvation.  We can never repay our Lord for what he has done for us.  But we desire to, so we just do everything we can to show love to those around us and help others along the way, knowing that we will never do as much for them as has been done for us.

Some have asked, so our address in Indiana will be 1321 S Fenbrook Lane, Bloomington IN 47401.

Thanks again for your prayers.  My primary request at this time is that my headaches would subside.
Derek & Leann

Answered Prayers

Sorry it's been a while since a post, but we had a busy Fourth of July weekend camping with the Sauder family and going to the Rassi reunion.

I'm very excited to report that many prayers have been answered in the last week as the paralysis of my face is improving greatly.  It was a sudden improvement the second half of last week.  I can now close my right eye, and can chew on the right side of my mouth.  If I make small smiles, you can't tell the difference between right and left side, but if I smile real big or laugh, you can still tell.  I'm thankful to not have to use the eye tent at night anymore.  It's been a very exciting week.

I'm able to get around better this week than last.  Walking is going a lot better, but I found out camping that it is a lot harder at night on rough ground.  The main thing holding me back now is headaches.  If I move fast, bend over, stand up fast, then they hit me.  It's not unbearable, and probably a good thing to keep me moving slower and keep me from over-exerting myself.

This week and next we are focused on getting ready to head to Indiana, and I"m working a few hours each day.  We are finding that as life starts to return to normal, we have the same challenges we had before.  It seems the kids are feeling the effects of being away from us in the last few weeks.  Leann and I need patience as we work through details of finishing the house.

As you pray for us, please pray that I would continue to heal and the headaches would subside.  Please also say a prayer that we can work well together as a couple and we can have wisdom in training and rebuilding our relationship with our children.

Thanks again for all your prayers and support,
Derek & Leann

Home from Indiana

Things went well the last two days.  The MRI last night only took an hour and a half instead of the 3 hours they predicted.  Then this morning I was fitted for the treatment.  The first item was a plastic bag they filled with expanding foam and I laid in it while it cured.  This will hold my shoulders, neck, head, etc in the right position.  Then they made this plastic mask that is a hard plastic mesh.  They heated it up in hot water, then draped it over my head as I laid on the table.  It felt like hot wet noodles until it cured.  I can breath through it, but the way it is strapped down to the table, it is hard to move at all, which is a good thing.

Then we went and got the lease all set up for our apartment.  It is in town, about 10 minutes from the treatment center.  Two bedrooms, 2 bath, living room, kitchen, and a deck.  It will be more than sufficient for 7 weeks, but I'm sure we'll be glad to get back home when it is finished.  The complex has a swimming pool not far away, and a couple fishing ponds that I'm sure Wesley will try to empty before the summer is out.

We are really thankful for the improvement in the last couple of days.  My walking has sped up quite a bit, and I even ate my lunch in the same time as Leann today.  My face still has a ways to go but I'm noticing improvement in my eyebrow and eye the last couple days, and swallowing is going significantly better.  Thanks everyone for your prayers.  Went to the mailbox when we got home this afternoon and once again we were overwhelmed by the support and generosity we have been shown.

One thought Leann and I have had many times over the last weeks I will share with you.  My situation is not necessarily an easy one, and there may be very difficult times ahead.  But yet when we read God's word, and when we hear of the situations many others are in, we realize that we have it pretty well.  David had enemies.  Many here in life have real enemies and are in tribulation that is more than just their health.  I have no enemies.  All of you are supporting us in prayer, and we don't face true physical affliction.  I count it a true blessing that we feel nothing but support and love from our church family and all those around us.

Thanks again,
Derek & Leann

Headed to Indiana today

We got a call this morning to come for the pre-radiation stuff today and tomorrow.  So we are driving now to Indy to have the high resolution MRI taken tonight.  6:30-9:30 tonight.  3 hours of no movement laying in the MRI machine :) 

Tomorrow morning I get fitted with the "mask" to hold my head during radiation treatments and have a CT scan at IU.  Then we can hopefully finalize the housing decision and have those arrangements made.

The current schedule for my treatments is July 18 - September 13.

Each day continues to get better for me.  I was able to go in to work for 3 hours yesterday and today.  For right now, that's the perfect amount and I can keep up on what is happening and keep my mind active.  Walking is getting easier each day, but I still feel like I'm walking on a boat and the floor is shifting around.  Others who go a few days between seeing me say that my face is improving, but it's hard for me to tell a difference from day to day.  Eating is a little better, but I tried eating a salad for lunch and bit my lip about 30 times.

Thanks again for your prayers & support.  We really can feel them and appreciate them very much.

Derek & Leann

Indiana University Health Proton Therapy Center

Today, we traveled to Bloomington Indiana to visit the IU Proton Therapy Center.  The purpose was to try and determine if we should use traditional (photon) radiation or the newer type (Proton) radiation.  We were impressed by the facility.  Everyone was friendly.  Dr McDonald was extremely enlightening and explained things well.

Overall it was a pretty hard day.  Getting up early and driving out was not real fun, and our moods were not the best as we arrived.  There was tons of construction everywhere, so getting around town was not real easy.  We spent the afternoon looking for places to stay, which we ran into a lot of less than ideal options, and nothing quite as ideal as Rochester.  Then we found out the pre surgery MRI did not make it down there, so our doctor was short a little of the info he would have liked.

But we are thankful for what seemed like a relatively easy decision to make, and that is to proceed with proton radiation at Indiana University.

For  those interested in all the technical details(things like definition of cancer, technical details of the radiation, life expectancy, etc),  you can keep reading.  I don’t want to bore everyone if you aren’t as interested.

Dr McDonald explained some more details about meningiomas that helped quite a bit.  He said meningiomas are classified into grade 1, 2, or 3.  The grade 1 is what most people call benign, and has a pretty decent cure rate.  Grade 2 is called “atypical” and is aggressive.  Grade 3 (my diagnosis) is called “anaplastic” and are the most aggressive type of meningioma.  They determine this by looking at certain details of the pathology, which indicates to them how aggressive it will be.  So to answer the question everyone asks, “Is it cancer”, let me try to explain in more accurate terminology.  “Cancer” means that it spreads throughout the body.  These tumors are not very likely to spread, so technically it’s not cancer.  The term “benign” would apply only to grade 1, which are not likely to recur.  The proper description for grade 2 or 3 is “malignant” meaning that it is aggressive and could come back.  So you won’t hurt my feelings if you call it malignant or cancer, as that’s what most people think of.  It’s definitely not benign.

 He shared with us the details of several research studies that focused on these more aggressive grade 2 & 3 tumors.  The success rate with this tumor is very dependent upon the dose of radiation given.  In patients given less than 60 Gray of radiation, there was an 80% recurrence rate, near zero survival at 5 years.  In patients given up to 70 Gray of radiation, all survived 5 years, 33% 8 years.  Recurrence has a very poor survival rate with additional surgery & radiation, typically 1-2 years until death at that point.  The basic conclusion is that the best chance is a very aggressive surgery (which we feel was accomplished) followed by very aggressive radiation (which we feel I will receive at IU). 

All of the statistics aside, we know that God answers prayers and He is in control.  How many years I am granted is not bound by statistics.  I must live each day as if it is my last and serve Him with all my heart.

Another of our goals was to determine IU’s experience with head/neck, meningiomas, etc.  40% of the tumors treated at IU are head/neck and that is all that our Dr works with.  He has treated a fair number of grade 2 & 3 meningiomas.  So we are comfortable that the experience level here is high.  This facility was one of the first facilities in the US to do Proton therapy.

As for side effects, he expects that I will have some permanent hair loss around my right ear and probably some salivary gland damage, although 3 of the 4 glands will be spared.  Towards the end of treatments, I will have skin irritation (sunburn) and fatigue.  The long term side-effects otherwise are very low risk.  With Protons, he can deliver a high dose of radiation without getting right up to the brain stem.  With traditional radiation (photons), in order to deliver the same dose to the tumor, the brain stem and lower parts of the brain (controlling motor skills) would have a higher risk of damage.  We concluded that a small amount of hair loss is preferable to brain damage.

The next step is to return next week for fitting of a mask that will hold my head in position during the treatments.  Once the mask is made, they will take CT and MRI scans to define the tumor location relative to the mask.  Then it takes a week or so for their machine shop to machine brass apertures and Lucite lenses that are specific to the exact shape of the field they are radiating.  They will come from several angles in order to fully get at where the tumor was.  The advantage of the proton radiation is that the intensity remains high, and then at a very accurate depth drops to near zero in a matter of a couple millimeters.  In some areas, they will radiate almost a centimeter further than where the tumor was visible on the scans.  Some areas such as the brain they go less deep, knowing that these tumors don’t tend to grow into the brain as quickly as things like the lining, bone, etc.

Once all the equipment is prepared, then they will do a dry-run session where they test everything and verify radiation is going where planned.  Then I start 5 day-a-week treatments that will last for 7 weeks.  Each session will be about 30 minutes long or so.

Thanks for your prayers so far.  Please continue to pray for us in the coming weeks. 

Love, Derek & Leann

Home!

We are thankful to be back at home as of 9pm tonight.  The kids had smiles all over to be back in their own rooms again.  The trip went pretty smoothly, it wasn't too bad for me riding.  Leann's parents drove with us and the kids jumped back and forth between the two vans.

We met with Dr Hammock today, who is the neuro-oncologist who will follow me long term.  She said the greatest likelihood with these types of tumors is that they come back in the same location rather than elsewhere.  So there won't be any other types of scans or tests to do other than brain MRIs.  They will do every 4 months, then every 6, then every year.  These should be able to be done in Peoria and keep the travel down somewhat.

As for radiation, we have two options we need to decide between.  The first is x-ray(photon) radiation at Mayo.  The second is proton radiation, which is less common, but better in some cases.  We plan to meet with the proton radiation doctor at IU on Friday and learn whether my case would benefit from it or not.  If we end up at Mayo's, we were able to learn a little more about housing options there today and it could work out pretty nicely to find a house for 6 weeks for our family.

The progress feels slow to me but yet I can tell each day I'm moving more easily.  I'm still pretty stiff, and walk kind of slow and shaky but I'm brave enough to walk in the open now if needs be.  Eating is getting better, but it's still not easy to chew.  The Subway sandwich took a lot of work to get the bread down.  When your lip gets caught between your teeth and the sandwich, you have to take small bites :)

Our stack of encouraging cards/gifts welcomed us home, Wow!  Blessings to you all.

Love,
Derek & Leann

Out of the Hospital

We are glad to be out of the hospital as of this afternoon.  The dizziness has been a little worse today actually though and I feel really tired.  Pretty much just sat/layed around all afternoon at the guest house.  Went and watched the kids swim at the pool for a while tonight.  I can tell that this recovery will be a patience-building excercise for me as I was warned.

Tomorrow morning we have a meeting with the oncologist here at Mayo's and then we hope to head home early in the afternoon.

Thanks again for your prayers,
Derek & Leann

A Good Day

We had a really good day here.  It started off kind of rough as I was waiting for Leann to get here with the kids so I called Dad and Grandpa before church.  It was kind of hard to be here on Father's Day.  We couldn't get the computer connection to work this morning so listened to a CD sermon which was really encouraging.  Then caught the afternoon Tremont service.  It was just really encouraging and lifted my spirits.

I had a bit of headache this morning so it started out a bit rough but then took some tylenol.  I was able to get out and walk around a bunch more, and overall had more energy today and feeling better.  After church Duane & Bonnie Rocke and their kids came down to visit, which was really nice.  As I told Duane, everyone who comes or emails or sends a card lifts my spirits.  It doesn't take great words, just the simple act of caring means so much to each of us.  And Leann read me some of the emails we've been getting.  It touches me so much.

They've stopped draining my lumbar drain now so I should be able to sleep longer tonigh without having to wake up every two hours.  Leann is going to spend the night here in the room with me for the first time.  Thanks again for all your prayers.

Our encouraging phrase from the day is:  Face each day with courage knowing God is in charge.

Derek & Leann

Derek's first typing

Not really much new information to report but just wanted to share a few thoughts and once again thank everyone for your prayers.

Well this the first attempt I'm making to run the computer and type.  It's slow going but each day gets a little better.  The thoughts running through my mind since surgery have been many.  We appreciate so much all the encouragements from everyone.  I think my biggest challenge will be just to take one day at a time and not look too far ahead.  When we come face to face with the truth that none of us really know the length of our days, it is not always easy.  I have to say that I have some really hard moments, but also some really great moments.  My first desire and thoughts after the reality of the situation sunk in to me is that I want to be sure to spend every moment God gives me doing just what He wants.  And it's natural for me to think about doing all the best things I can for my family.  I want to be the best Dad I can be.  I want to help others in any way I can.  Yet then I realized this is just more of Derek trying to figure out his own plan.  So I think the task is just to trust in God to lead me each day and help me take one day at a time.  It's been great to have visitors here and in general there is enough going on to keep me busy enough.

From a medical standpoint, they reduced the amount they are draining from my lumbar drain today.  Then hopefully tomorrow sometime they can stop it and then watch me for another day.  They are thinking they'll let me out on Monday sometime if things continue at the current rate.  I won't be moving very fast yet then I'll say.  For the next 3 months, no lifting anything over 10 lbs.  That's hard for the Sauder DNA to absorb.  It will probably be easier to be away from home for radiation where there is less work staring at me.  It will be good to take it easy physically,  hopefully be able to have the kids with us so we can spend time together.

For future treatment, it sounds like there will be an oncologist to monitor for signs of recurrence.  And then radiologist to adminster radiation treatment.  Not sure if we will get any of those meetings set up for next week or it may be a few weeks out when we come back for that.

Correction to surgery re-cap / Radiation schedule

In my surgery day re-cap post, I said the doctors left residual tumor on the facial nerve to preserve it.  In follow-up questioning, my understanding is that they did not knowingly leave any that could be seen.  In fact, they said they did a very aggressive surgery.  The doctors said they got 100% of what they saw of the tumor.  They believe there are still some tumor cells in there, nonetheless, that they could not see.  That is why they recommend radiation.  It will be fractionated radiation.  We are not certain where we will travel to receive this treatment yet, but we are leaning towards treatment in a place other than the Peoria area.  The radiation will start in approximately 4 weeks and continue for about 6 weeks with a daily treatment M-F.

Derek's face is quite affected by the surgery.  He has trouble chewing, swallowing, and smiling.  Also, his right eye does not close on its own, so there are re-wetting drops, a nighttime bubble to wear over the eye, and purposely closing the eye with his hand that need to be done until God heals this.  These seem like small inconveniences in the grand scheme of things, but I am still praying for each little improvement.  The doctors are hopeful this will improve, but it may take months.

Today is my birthday, and it is Father's Day weekend. What a great gift to Derek & I to have the kids arrive and my dad and mom.  So thankful to be re-united for the weekend.  God bless you all for continuing to keep us in your prayers.  We are humbled by all the expressions of love.

Love,
Leann

Friday morning

Derek took his first walk to the hall and back.  The only tube left in is the spinal drain which they have to remove 10cc every 2 hours to keep pressure off his brain.  He's sitting in the chair this morning, ate yogurt and scrambled eggs.  Swallowing is difficult with toast.  His abdomen hurts if he coughs, as there was some fat removed from there and used as a patch in the area in his head where tumor was removed.

The bandage is off of his head, and his incision has no drainage or swelling.  It's in a C shape around his right ear, maybe 4 inches long or so.  They shaved the area right around it.

Three sweet stories

Lexi, our 7-year-old was sorting some of her Aunt Connie's cards that had things to remember from sermons written on them.  She asked Aunt Cindy if she knew why she had 2 stacks.  The one stack had a lot of things related to prayer in the subject, and Lexi said that those were the ones that helped her since Daddy was in the hospital.

Wesley, our 5 1/2-year-old was talking to me on the phone Tuesday night before the day of surgery, and he asked if he could talk to Daddy.  When Derek got on, he said, "I love you, Daddy.  I'll be praying for you during the surgery."

Whitley will be 2 on the 27th.  She saw the picture we sent of Derek after surgery with all the tubes hooked up, and she just kept saying, "Daddy, Daddy...more Daddy"  Today, she's carrying his picture around.

I'm thrilled to think of seeing and holding them tomorrow.  My parents are bringing them.  Thank you, Dad and Mom Stoller, for your love and all the hard work you're doing on the homefront.

Thank you, Dad and Mom Sauder, for being with me in multiple waiting rooms, crying with me, and helping me think straight to form the question lists for the doctors.

Love you all,
Leann

Out of ICU

Derek was moved out of ICU around 10am to a private room where there is a nice space for 3 chairs next to the bed.  Each step back to "normal" is welcome.  One line on the right hand came out and his oxygen is now off.

This morning

It's about 9am, and Dad, Mom, and I had a restful night at the Mennonite guesthouse after a looong day in the waiting rooms.  Derek is still sleepy, but he seems in good spirits and is hungry for breakfast.  His greatest pain right now is when the blood pressure cuff starts up each time.  He saw the resident doctor before we got here, but he doesn't remember much of what he said.  We hope to see the surgeon later today to get more details on how surgery went and a realistic outlook and answer some questions we have about further treatment.

Here are some popular questions in everyone's minds:

1.  Is it cancer?
2.  What are the treatment options?
3.  How long is the life expectancy?
4.  Is it curable?

We really don't know these answers definitively.  Some research suggests that certain doctors would call this quite malignant because of its aggressiveness, but our doctor did not answer us straight up with a yes or no to question #1.  We have not discussed all of the treatment options yet, but we know they plan to do radiation in about 1 month or once he is recovered from this surgery.  If you google the papillary meningioma, you will not find a very positive outlook for #3 and #4.  This is considered a grade III tumor. 

We continue to trust in our Almighty Healer.  He has our best in mind.  Col. 1

We love you all, and please keep us in your prayers.  I'm a little more emotional last night and today, seeing Derek in this state.  However, we have been thankful for low pain, rest, and caring staff.

Love,
Leann

Surgery Day recap

We checked in at 5:45am and last saw Derek around 6:30 I think.  The actual incision was made around 9:30am.  About 4:30p is when they told us they were closing up Derek and putting in the spinal drain, and around 5p he went to recovery.  Then, we saw him at 7p once he was brought up to ICU.  He talked with us, moved his limbs for the nurse, and even brushed his teeth.  We left him in good care there which makes me feel good.

The doctors said surgery went as expected.  They closed off the right ear, as they found the tumor quite infiltrated in that area.  This did not surprise us.  Then, they got as close as they thought they should to the facial nerve, but left some residual tumor there so not to disturb it.  They will recommend radiation to hopefully irradicate the residual tumor beginning in about a month, but we do not have the details yet.

We read Psalm 91, and continue to pray for the Lord's compassion and trust in His promises.
Thank you for your encouragement and for praying for us during this time.  How overwhelming it is to be the recipient of all of your love.

Leann

Closing up

We just got the call that they are closing Derek up, and he will likely be in recovery 2 hours.  We hope to meet with the doctor soon.  Leann

In Operating Room

The nurse communicator just told us that Derek is asleep for surgery now.  They are putting in the lines needed, and the incision will be made around 9am.  We are really feeling carried by the Lord.  The song that awoke me early this morning was "some through the waters, some through the floods, some through the fire, but all through the blood.....God gives a song, in the night season and all the day long."  Then, Dad Sauder came into our room and read to us out of Isaiah 43 "When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee."  Because of God's great might and His holiness and His caring, we are held up.  All of the prayers you are offering are such a blessing to us. 

Jesus, hold my hand.

Leann

Pathology Curve Ball

We arrived safely at Mayo's today and I was feeling a lot better in general, no dizziness today and my face back to normal for the most part.  As we have learned before in personal experience with pathology, you never can count on things to stay the same for long.

The final pathology results showed that it is NOT thyroid cancer spread to my ear, but rather is a "papillary meningioma".  This tumor originates in the lining around the brain, but can spread to adjacent areas such as bone.  As every theory has been, this is a very rare type of tumor.  Dr Driscoll said these are generally considered benign, but they have a high chance of recurrence.  I think benign basically means that the chance of it spreading to other parts of the body is not very high.  This type of tumor is very aggressive and there will be a high chance of it coming back in the same place again.  The next step is to operate and get as much of the tumor out as possible.  He does think there is a good chance that they will be able to separate it out, these type don't cling real tight to everything around them.

After surgery they will determine the plan for radiation, but most likely there will be some sort of radiation followed by frequent MRI tests to monitor for recurrence.

We are reminded that we don't know the future.  We will count every year we have together as a bonus.  I guess after we thought it was thyroid cancer, we thought "Oh, that's an easy one" and were relieved.  Now we are back again to simply trusting in God for the future.  I'm not discounting the power of each one of your prayers.

We are to report to the hospital at 5:45am.  It will probably take a couple hours for pre-op stuff, they don't give an exact time to start.

Thanks again for your prayers and support.  We appreciate each one of you so much.

Derek & Leann

Leaving in the morning

Thanks all for your prayers and support over the last days.  It was really humbling to be in church Sunday and meet everyone.  We can truly feel the prayers and support and appreciate it very much.

I felt better today than I have in recent days.  I was still dizzy a few times this morning but as the day went on I am feeling more normal and my face is a lot closer to normal now.  I still have the ringing in my ear and a little pain to remind me that the tumor is still there.

The kids are with Mom & Dad Stoller.  They will bring them up later in the week, hopefully Friday.

Leann and I as well as Mom & Dad Sauder are leaving first thing in the morning.  I have blood work at 12:30, then meet with Dr Driscoll one last time late in the day.  We'll know the exact surgery time for Wednesday as of 8:15 Tuesday night.  We'll try to post an update then.

Thanks again,
Derek & Leann

Rest at home

We had a nice drive back late last night.  Derek sleeps a lot (in the van, all night in bed, all morning on the couch).  I'm thankful he has no pain, and it is so nice to be with the kids again.

We won't know the exact time of surgery on Wednesday until the night before.  Thank you all for keeping us in your prayers and for the generous offers to help.

Love,
Leann

Surgery Scheduled

Quick update as we are trying to get on the road.

Surgery is scheduled for next Wednesday.  We will meet with Dr Driscoll next Tuesday afternoon.  They'll have final pathology at that point but surgery is the next step regardless of results.  They are still pretty sure that it is a spread of the thyroid cancer.

Good news from today is that the CT scan of my chest and ultrasound of my neck showed no spread of cancer in those areas, which are the likely areas thyroid cancer would spread to.

We are heading home for a late arrival back in Tremont so we can have a few days to regroup before coming back for surgery.

Thanks all for your prayers, we really continue to feel them.

Derek (& Leann)

Initial pathology report

Greetings!  I can't believe it's Friday already.  We have been so impressed with the efficiency of Mayo Clinic.

The initial pathology report is leaning towards calling this a spread of thyroid cancer which Derek had in 2007.  This never occurs, we are the befuddling case.  Dr. Driscoll has never seen it.  We are still waiting for the "final" pathology report.  In other words, they are still consulting with other pathologists and making sure everyone agrees on what to call this process.

This morning already, we have had blood work drawn and met with the endocrinologist Dr. Gharib.  Now, Derek is getting a  chest CT scan to check lungs and at 2p he is scheduled for an ultrasound of his neck to check lymph nodes.  We are so thankful to be here and be in an environment where things happen fast.  The secretary had his Peoria records from '07 faxed up here already.

We will meet one more time with Dr. Driscoll this afternoon to see if the pathology report is "finalized" and to check the clear drainage that is coming from Derek's ear (not lots).   We do not know a surgery date yet, but we expect next week.

It is so encouraging to have your prayers.  God is meeting our needs.  Derek has very little pain today and has not taken vicadin this morning.  He has been dizzy a little.  He's definitely in "research" mode trying to help the doctors remember all the different tests to run that might help.  Once an engineer, always an engineer!  :)

We love you all and I'm really missing the kids, so if at all possible we are going home tonight to regroup, repack, and get some hugs and kisses from them.  If they deem Derek's drainage a concern, we will stay the weekend, Mom Sauder could take our van home.  We have an excellent comfortable place to stay and the host gives us rides.

Leann

Out of biopsy

We brought Derek back to the Mennonite Guesthouse where we are staying another night.  He was through recovery around 8:30-9, but we had the job of finding him a Culver's snack pack after that.  They even had his favorite flavor of the day, Caramel Cashew.

The doctor said he would be collaborating with his colleagues tomorrow and will get us some answers on how they plan to proceed.  We plan to wait here until we know if there will be further tests or if a surgery will be scheduled, what date it will be.

Derek appears to have better balance today and his facial paralysis seems less severe.  We're not sure why, but glory to God!!

After a long day, I want to thank you for lifting us up in prayer.
Leann

In biopsy procedure

Loved ones,

We were scheduled to check-in at 11:30am, but it must have been on an already full schedule.  We are thankful they were able to take us today.  Derek went back at 4:45 for pre-op and is now in the surgery room for the biopsy.  He was very restful today waiting.  We'll let you know when he is out.

Leann

Mayo Visit

Leann and I and Mom Sauder left for Mayo's this morning.  Shortly after leaving, I noticed my face feeling funny.  One of the possible symptoms which hadn't shown up yet was facial paralysis.  It was also a possible consequence of surgery.  Assuming that the tumor was pressing more on the facial nerve, it was a hard drive up, but we were glad to be on the way.  It's hard for me to chew (although I did get  most of Mom Stoller's popcorn down) without biting my lip.  It's also hard to close my right eye now.

We arrived early and were actually seen by Dr Olsen and Dr Driscoll, both ENT specialists.  As we walked to the room, it was the hardest time I have had walking yet.  Since then it's been a bit better but it takes a lot of concentration and helps to have Leann holding my hand.  The tumor has definitely grown, as it is now visible in the ear canal, which was not on Monday (at least Dr Klemens never mentioned it).

Dr Driscoll agrees that this tumor has originated in the ear, but feels it is very fast growing.  He does a lot of surgeries in this area of the ear to remove tumors, but most of them are rare and there are many different types he sees.  At this point he has not ruled out infection, lymphoma, benign, or cancerous processes.  Because the various possibilities could lead to totally different treatments, and because it is progressing rapidly, he is going to take a biopsy tomorrow by going into the mastoid bone behind my ear.  This will be enough tissue that they can do adequate pathology to determine what it is.  This biopsy will be an outpatient procedure if it goes as planned.

If we end up with surgery, they would try to schedule it in the next 1-2 weeks.

I'm having a fair amount of pain in my right ear now, so hopefully the vicodin will lessen it enough for me to sleep tonight.  I'm really thankful for Leann being with me.  Those of you who know her will appreciate that she is good at scheduling, logistics, details, etc.  I'm appreciating it immensely now.

Thank you for praying for us.

2nd opinion

Leann here.  We had no new news from the Peoria ENT Dr. Klemens who we met with yesterday.  He will be working with Dr. Klopfenstein as a specialist in the area of the facial nerve.

We are headed to Mayo Clinic tomorrow for a 2nd opinion.  Thank you for continuing to pray for us.  Derek is starting to have some dizziness when lying down for the night, and we think this could be a symptom related to the tumor.

We're thankful for...

1.  A bike ride with the kids last night.
2.  Mayo's getting us in quickly.
3.  Plenty of babysitting offers.
4.  Both Peoria doctors are "available" to do surgery June 24 if we opt for this route.

We love you all and are overwhelmed by God's goodness.

Reflections

No real additional health information to post today, so I thought I would take a few minutes to share some of the thoughts, emotions, and scriptures that we have been experiencing.

First, we have been extremely overwhelmed and humbled by the prayers and support we have felt from our church family and friends.  We were touched four years ago when I had thyroid cancer but this has touched us to a new level.  Thanks and please continue to pray for us, as we know you will.

Those of you who are around me have seen me crying at times I'm sure.  It has been hard but God is working in me and I am taking courage from many things.  The times I'm crying are not because I"m scared.  It's either when we are singing in church and the words of a hymn mean so much to me, or one of you are encouraging me and I'm touched by the love I feel, or I"m thinking about my wife and children and saddened to think of the things  they might have to go through.

This morning I decided to start purposely looking for the verses of promise in God's Word.  I opened in the chain reference to the "Promises of ..." and my eyes fell on protection, which led to II Chronicles 16:9  The eyes of the Lord run to and fro throughout the whole earth, to shew himself strong in the behalf of them whose heart is perfect toward him...    As I read the surrounding verses, I learned of the context of this verse which I did not remember.  King Asa had trusted God initially and God gave him victory over his enemies.  Then he turned to the King of Syria for help, and God was displeased, and thus he began to lose his battles.  God sent Hanani the seer to tell him this.  This gave me much encouragement, that God is interested in helping us and showing his strength.  And taught me that my trust needs to be in Him alone, not in various men or my own strength.

I've had to come to realize that I must trust God for everything.  To heal me, to take away my fears, and to provide for my wife and children in the event I don't have a "normal" life.  To try and worry about all these things is foolish and just a lack of faith in God.

Thanks again for your prayers and support,
Derek & Leann, Lexi, Wesley, & Whitley

From Dr. Klopfenstein appt today

We met with Dr Klopfenstein this morning and he explained more of the anatomical details regarding the tumor and how he would approach the surgery.  He said the tumor could possibly have been there for some time, perhaps years.  He wants us to meet with Dr. Klemons (an Ear, Nose, Throat specialist) to explore the possibility of his involvement during surgery.  That appt is not scheduled yet, but hopefully early next week.

We had been leaning towards the more aggressive surgery option, but after he explained more of the details, we wanted more time to consider it.  There is a possibility of it affecting eye movement, speech, eating and requiring significant rehab.

He gave us more expectations regarding surgery.  The day before surgery would be the embolization (where they block off the blood vessels to the tumor).  The surgery is a 6-12 hour procedure, he said basically it's the most involved surgery you can have.  Then 3-7 days in the hospital (first part in ICU), followed by at least a month of recovery at home.  Depending upon how the surgery goes, there could be significant additional rehab required.

As far as any post-surgery radiation, those plans will be made once we are past the surgery.  There is a local tumor board that would review the case and decide the plans for that stage.  If it turned out to be cancerous, then an oncologist would become involved.

Surgery will probably be later this month.  Thanks for your prayers so far, and please continue to pray that we can have direction and peace regarding treatment decisions.  God has been speaking to us and working in our hearts through this time.  It has drawn us closer together, and we are realizing more than ever what FAITH really is.

Love,
Derek & Leann, Lexi, Wesley, and Whitley

Angiogram results

The angiogram showed that the tumor was most likely not a glomus tumor as first expected.  Dr. Klopfenstein thinks it is an endolymphatic sac tumor which is extremely rare, only 100 or so reported cases.  Because the tumor has not yet been biopsied or tested by a pathologist, it is still uncertain which type of tumor it is for sure.

The next step is a meeting with Dr. Klopfenstein tomorrow morning to discuss the next steps.  He has asked us to pray about how aggressive we want him to be in removal of the tumor.  Being more aggressive decreases recurrence, but increases the risk of damage to the facial nerve.

Please keep us in your thoughts and prayers.

Love,
Derek & Leann, Lexi, Wesley, & Whitley

Angiogram completed

Derek's procedure went as planned, and he is resting/recovering without pain.  Planning to be home for supper.  Thanks for keeping us in your prayers.

Angiogram scheduled

On Tues, May 31, Derek is scheduled for his angiogram.  We check in at 8am, and will probably be there most of the day at OSF.  We appreciated the love and support we felt at church today.  God bless you!

Prayer request

Dear Friends and Family,

Some of you are already aware of what has been happening with Derek's health, but we wanted to update you all after our meeting with the neurosurgeon Dr Klopfenstein this morning.

Derek has had pressure in his ears and ringing noise since the winter, and after a couple of what we thought were ear infections in March/April, went for further diagnosis by his ENT doctor.  That examination revealed a mass with blood vessels underneath the eardrum.  A CT scan revealed bone loss, and an MRI was done to show more detail of the size of the tumor.

Dr Klopfenstein suspects that this is a benign glomus tumor, but he will not know for sure until surgery.  The tumor is approximately 1 ½ inches in size.  It has already destroyed much of the bone tissue in the area around his ear.  It is growing in against the brain and putting pressure there as well. He does not expect that Derek will recover hearing in his right ear.  Surgery in this area is difficult because running through the same area is the nerve that controls facial motion on the right side.

The next step is an angiogram, hopefully early next week.  This will determine the extent of the blood vessels in the tumor and help him to decide the next steps.  One possible next step would be to embolize the tumor, which consists of placing glue in the vessels supplying the tumor.  This would result in less bleeding during surgery.

Surgery will likely then be done to remove some of the tumor and determine whether it is cancerous or benign.  How aggressive he is with the surgery will depend upon what type it is.  If it did turn out to be cancerous, he would remove as much as possible but there would be a high risk of facial nerve damage in that case.  There may then be radiation treatment of some sort.  It is too early to know the prognosis.

Please pray for us and Dr Klopfenstein, that the right steps are taken and that we can have trust in God above all else.  It has been a hard week.  We appreciate and can feel your prayers and support.

Derek and Leann, Lexi, Wesley, and Whitley