Wednesday, June 29, 2011

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

Tuesday, June 28, 2011

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

Friday, June 24, 2011

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

Wednesday, June 22, 2011


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.

Derek & Leann

Monday, June 20, 2011

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

Sunday, June 19, 2011

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

Saturday, June 18, 2011

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.

Friday, June 17, 2011

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.


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.

Thursday, June 16, 2011

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,

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.


Wednesday, June 15, 2011

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.


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.


Tuesday, June 14, 2011

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

Monday, June 13, 2011

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

Saturday, June 11, 2011

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.


Friday, June 10, 2011

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.


Thursday, June 9, 2011

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.

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.


Wednesday, June 8, 2011

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.

Tuesday, June 7, 2011

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.

Thursday, June 2, 2011


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

Wednesday, June 1, 2011

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.

Derek & Leann, Lexi, Wesley, and Whitley