Monday, February 27, 2012

Overwhelmed (good way)

I don't know what to say tonight other than that I am overwhelmed by the love and prayers we feel. We just got done opening the pile of cards we received again today. So many from people that I have never met or hardly know. I lay here in bed just sobbing as I try to comprehend it all. I'm really blessed. I guess maybe its just starting to sink in to me how God has intended that we bear each other's burdens as brothers and sisters in Him. Even though this doesn't seem sufficient, we say thanks.

We enjoyed another good Sunday in indy and were blessed with a family watching the kids while Leann and I had a supper date.

Today was pretty quiet, we have a visitor tomorrow and then my parents this weekend. Today I felt a bit better strength-wise and am really thankful for how the treatments are going. Leann talked to the mom of a patient also getting whole brain radiation who lost her hair at treatment 12 so we are expecting this weekend is when it will fall out.

Derek & Leann, Lexi, Wesley, & Whitley

Friday, February 24, 2012

The week flew by

For those who are counting (I am!), I now have 7 of 30 treatments behind me. I'm really thankful that I'm still feeling pretty good. At times I have slight feelings of naseau but so far it's been less than I expected. The main challenge has been the pain in my back as I work off the steroids. Today is the first day completely off and the pain is worse.

Doug's came last night and left around noon today. The kids had a lot of fun playing together. Doug and I even got in a couple hours of strategic brainstorming on some future Precision products. That was a lot of fun for me.

Whitley's "My Cindy & My Connie" (aunts) are here tonight and then tomorrow afternoon Brent's are coming. It's been great to have so many visitors. We aren't wearing out yet and it's keeping us busy.

Thanks again for your prayers, we appreciate them so much,
Derek & Leann

Wednesday, February 22, 2012

Settling In

Well another week is flying by.  In general it seems like we are getting pretty settled now.  We've had so many visitors already that we have really kept pretty busy and the time is going by pretty quickly.

Sunday was a really nice day.  We were really blessed as we could hear the word and it just seemed to come so alive to me.  Sunday morning's service we read Ezekiel 3 and I guess it really convicted me.  God was speaking to Ezekiel that he needed to speak and warn the people, and if he did not, God would lay it to his charge.  But if he would warn the people to turn from their wicked ways, then he would be innocent.  I've just been thinking about this since, why have I always been so slow to speak the truth?  When we see evil around us, we need to be quick to warn souls of the danger and speak the truth.  So if you happen to be one who has not yet found your salvation in Jesus Christ, know that today salvation is available and God is calling to you to seek Him in repentance.

I've really enjoyed being able to do school with Wesley the last few days.  He's progressed a lot since I last did school with him during the fall.  We've been able to get done in about an hour each day.  I've been taking naps in the afternoon, which is a new thing for me.  Treatments have typically been around supper time, and so far are running right about an hour long.  I'm pretty comfortable during the treatments, and thankful for that.  I'm trying to get totally off the steroids that I had been on since before surgery, and that is making things a bit more painful for me.  I think they were helping quite a bit.  This morning was actually a bit easier than the past few mornings have been but in general I'm in a bit more pain.  The Dr doesn't want me on steroids for more than a month since he says I'll lose a lot of muscle strength.

No planned visitors today, so we'll probably go to the library once we get school done today.  Tomorrow we are looking forward to Doug & Brooke coming.

Thanks again for your prayers,
Derek & Leann

Sunday, February 19, 2012

Sunday morning

We are on our way up to Indy church this morning and looking forward to seeing everyone there again. We have many special memories and friendships from last summer.

Leann shared with me this morning some thoughts she had last night and I'll try to relate them to you. Through our marriage there have been little things about me that she would have liked to change. She realized now that she has all of them, but not in the way she would have expected. She wanted me to sleep more and not be such a morning riser. Now I'm sleeping 10 hours at night plus taking a nap in the afternoon. She wanted me to spend less time at work and spend more time with her, and to help with schooling the children. She also wanted me to be more interested in relationships and spiritual connections to other people around us. So now she realizes she has everything she wanted all along, but much of it came as a result of God having to wake us up in a big way.

So we wonder what should we have done years ago? What should our attitudes have been? Leann feels like she should have been more focused on becoming more Christlike herself rather than trying to pressure me to change. We don't view our trials just as punishment from God, but we know in the big picture they will work a refining in all of us. It is really out of God's love for us that he allows tribulation in our lives in order that we can be drawn more close to him.

Physically, I'm feeling a little worse each morning. It just seems my back and neck is a bit more stiff and painful each morning. Once I get going the days are pretty good and I'm thankful I sleep really well. I started feeling a little nausea on Friday and Saturday but it is better now today. Thanks again for all your prayers and encouragement. We continue to be humbled by all the cards and emails we receive and appreciate them so much.

Derek & Leann

Friday, February 17, 2012

Today's Verse

Just thought I'd share a couple verses I read this morning.  I think they capture some of the thoughts that have been on my heart the last few weeks.  The pharisees were trying to tempt Jesus, and catch him with questions he couldn't answer.  So they asked him what the greatest commandment was in all the law.  The simplicity of his answer is worth pondering.

St. Matthew 22:37-39  Jesus said unto him, Thou shalt love the Lord the God with all thy heart, and with all thy soul, and with all thy mind.  This is the first and great commandment.  And the second is like unto it, Thou shalt love thy neighbour as thyself.

So many times in our frame of mind, we can make situations, decisions, conflicts, and life out to be so complicated.  In reality, everything we face can be boiled down to loving God and then loving those around us, rather than being selfish in our thoughts and motives.  As we draw closer to heaven, it seems like the answers become more simple.  My heart's prayer for each one of you reading this today is that your love for God can be stronger today than it was yesterday.

My treatment tonight is at 7:30.  Leann's sister's family is planning to come out tonight and tomorrow, so we are looking forward to time with them.

Derek & Leann

Thursday, February 16, 2012

Treatment Start

Sorry it's been a couple days, but I'm finally getting a chance to update everyone.

Wednesday afternoon I met with Dr McDonald and it turned out they were not ready to actually start the treatment Wednesday but did do a "dry-run" through all the positioning and such in the treatment room.  Tonight (Thursday) I had my first treatment.  They told me to expect an hour and half but it was more like only 50 minutes.  I'm really pretty comfortable during the treatment, laying on my back on a table in a cradle setup they made for me and so it's not too bad.  I'm one of their more difficult cases from a planning standpoint, and it took them a bit to figure out all the treatment field geometry so that they can get the current tumor fully treated without getting too much radiation in the area where I had radiation last summer.  Dr McDonald is really satisfied with how it turned out, it just took them more work than they thought.

Physically I'm not feeling as good this week as I had been last week.  It's really hard in the mornings to get out of bed and I'm pretty stiff and sore.  I think yesterday got me down a bit again as I was talking with the Dr. and thinking about the future.  When I remember to just focus on the day at hand, my attitude is better.  The kids did really good today and Leann was feeling pretty good too.  We slept in and then I did school with Wesley after breakfast.  He did a really good job today and it's amazing to me how much he has learned since I last did school with him back at the beginning of the school year.

Leann's uncle & cousins stopped by this afternoon for a quick visit on their way to the Louisville farm show, so that was nice.  The next week and half we have visitors coming almost every day, so that will help to pass the time.  We spent time today opening all the cards that have already made it out here.  It is very encouraging to us.  Isaiah 43:2-3  "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.  For I am the Lord thy God, the Holy One of Israel, they Saviour:..."

Thanks again for all your loving prayers,
Derek & Leann

Tuesday, February 14, 2012

Almost to Indiana

We're almost to "Jill's House" where we'll be staying the next 6 weeks. Just stopped for supper and now we have another half hour. My first treatment is at 3 tomorrow afternoon. Please pray for us that we can adjust to the new location and routine the next few days. I'm not sure exactly why but it just seems to be hard on everyone when we make this move. We just have to make the extra effort to be loving and kind towards each other.

Sunday and Monday were busy days. Monday I went out to work for a few hours to see the guys, and that was really special. I really am blessed with a great place to work. Monday night did some work around the house with help of my dads and others. I think I pushed myself a bit too far. I've been more wiped out today.

I've been thinking a lot about all the other people with problems and struggles who don't have the huge group of people supporting and praying for them. I just wouldn't trade places with anyone. The kids without two loving parents, those who are fighting issues of sin, those who are lonely, and on the list goes. So don't stop praying for us but please pray for and help all the others who need it more than we do.

Thanks again for your prayers and just pray for us for good attitudes, smiles, and loving hearts through the next day.

Derek & Leann

Sunday, February 12, 2012

Sunday Morning

Nothing profound to report today.  We had a really nice day yesterday.  I was able to spend time with my potlock men yesterday morning, and then worked on some office work around home during the day.  Mom & Dad dropped by for a bit and we caught up on their week.  Then spent a few hours with my brothers before going to Leann's parents for supper with her family.

In general my early mornings have been a bit rougher getting up.  I feel really stiff and somewhat pained for the first hour or so.  It's hard to know what is due to tumor continuing to grow vs trying to ramp down steroids and medications after surgery.  Once I get going I feel pretty good and am able to sit up function "normally" for longer stretches now.  I did get overwhelmed yesterday late afternoon, but we got a little carried away with a lot of planning and details for next week.  Just pray I can have wisdom to not take on too many things at once here.

Hoping to see many of you in church today.  Right now I'm enjoying Leann's piano playing and sitting in front of the fire.  We both got up early this morning and just enjoyed the time sitting together, reading from Isaiah, and just talking about the future.  Even when the future is uncertain, it is still refreshing to talk about dreams we have and how we would like to spend our future energies.

We just continued to be humbled by the prayers and support and encouragement we feel from so many of you, and I don't really know how to thank you, but please rest assured that we can feel it, and it does help so much.

Derek & Leann

Saturday, February 11, 2012

Treatment to start Wed

We made the decision to go ahead with the radiation treatment plan as proposed by the IU doctors initially.  This means radiating the whole spine and brain now as much as they can, to really take the most aggressive treatment possible now.  It just seems like the best chance to give me a treatment that might not drag on and on over mulitiple sessions.

The schedule at the treatment center is for me to start on Wednesday, not sure of the exact time yet, so we will be headed out either Tuesday night or Wednesday morning.

I'm looking forward to the couple extra days here at home.  People ask what I feel like doing to pass the time.  My heart's desire is to just be with my family and other friends sharing good times together.  Leann and I were able to meet her cousin & his wife for breakfast yesterday while in Boston.  Times like that are so special to us now.  I'm hoping to meet the men from our potluck group for breakfast this morning.  As long as I'm having the strength, I just want to enjoy all of these friendships while I have the opportunities.  I welcome the opportunity to visit with any of you.  I don't know that I have anything profound to share but I feel like maybe just the simple encouragements I have for all of you are worth the most.  I encourage you to ask me anything you are wondering.

Probably the most striking lesson that we have learned, both through last summer's surgery and still now, is the importance of taking one day at a time.  Philippians 4:6-7 "Be careful (anxious) for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.  And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus."  We really can testify that we feel the peace of God.  He is with us!  I just keep praying for the spirit of thankfullness each day and the focus on the day at hand.  God has promised grace for today, so when I worry  about the future I'm getting ahead of his promise (He'll be there when we get there, just not now).

Thanks again for your prayers on our behalf.  We appreciate so much the emails and cards.
Derek & Leann, Lexi, Wesley, & Whitley

Friday, February 10, 2012

Dr Nayak visit

We had quite a long Dr visit yesterday with Dr Nayak at Dana-Farber Cancer Institute. They have a lot more experience here than at Mayo's with these grade 3 meningioma's, but even so my case is extremely unusual and they have not seen them spread in this manner. We came away reminded that there is no known cure or solution from a medical standpoint. There will be no possible conclusion other than a miracle should the tumor be held at bay.

They agree that radiation is more effective than chemotherapy and has the best chances of slowing the tumor growth. Initially she suggested I have more surgery to remove a piece of the tumor from the posterior fossa (lower back of brain) before starting radiation. As we've discussed this more with all doctors, it seems the risk of delaying the spinal radiation is worse than the risk of swelling in the brain she is concerned about.

The main difference in her plan is she suggests not doing the whole brain radiation at this time. She would suggest doing radiation in isolated areas as tumors arise. It's hard to know what will be the best route. We've heard enough of the side effects of whole brain radiation to know I will probably fight serious fatigue symptoms and suffer thinking and memory loss. But at the same time dragging radiation out into multiple treatment courses will be draining on us as well. Not knowing exactly how the timelines will end up playing out, it's hard to know which course will be best.

We were hoping to learn more about various chemotherapy options and maybe learn that we should be doing something sooner or in conjunction with radiation. They have a fair amount of experience with chemo but the results have not been that good. Dr Nayak is going to do some genetic testing of my tumor from what mayo removed and that will help her have a better idea of what chemo regimen to use. Based on what she sees of my tumor behavior, she is not in favor of Avastin. She would lean towards sunitinib at this point. We shared the results from the California lab with her but she does not consider it to be relevant really. The drug they recommended she said was old school, tried years ago, and never worked against meningioma's.

So the main decision now is just to finalize on the brain radiation course. The chemo plan will settle out over time after her testing. There doesn't really appear to be any options we should be trying now.

Thanks again for your love and prayers for us,
Derek & Leann

Wednesday, February 8, 2012

Travel to Boston

It's been a couple days since I wrote much.  Many thoughts and feelings though during that time.  As we came home from IU and meeting Dr McDonald, there were times that were a little harder I must confess.  I finally came to the realization that it was because of my focus again.  I was starting to think about longer term things, what side effects would come to the treatment, what our stay in Indiana might be like.  Those are the things that God hasn't promised help for YET.  He will, when we get there, but right now, I just need to remember to take one day at a time.  Once my frame of reference was right, the day seemed easier.  Yesterday afternoon we got home, had the kids with us again, and I just laid in bed in the living room while they & Leann played "Life" with and around me.  I had a headache and didn't feel the best so it was good to just lay there.  Leann's brother Gary came out for a couple hours and we visited together.  These times of being with family and visiting together are just so precious to me now.  I cherish each and every opportunity I have to visit with those I love.

This morning my brother Doug picked us up and drove us to Chicago airport and we flew to Boston, where my Uncle Rich & Aunt Deirdre are hosting us while we meet a doctor here.  The Dana-Farber Cancer Institute is located here and seems to be at the forefront of research in my particular type of tumor.  So tomorrow at 1 we meet with Dr Nayak.  We hope to learn a lot more about the various chemotherapy options and what she suggests as far as a treatment plan either in conjuction with or after radiation.  I'll have to say that at this point we seem to have lots more questions than answers, but we've found in the past as we ask questions and learn more, God seems to sort of clear the way and give us peace and direction on which path to pursue.  We pray that we can feel that tomorrow.  The travel on the airplane went pretty well.  The only problem was I had my bad ear to Leann/Doug so it was a bit hard to hear but the trip went really smooth.  There are a few times I get neck/back spasms at times but in general I'm decently comfortable.

I’ve had the burden on my heart the last week to just try and put down in simple explanation what I believe about God, who He is, who I am, and the basics of His Plan of Salvation.  Many of you reading this know me well, and are members in the Apostolic Christian Church like me, so we’ve been operating from the same foundational understanding.  But I also realize there are many co-workers and extended friends and family reading who may not be familiar with my beliefs.  So I write this not to be preachy, but just to make sure that the truth is explained to anyone who may be wondering of how my faith can be like this, or how we can have such hope in God.  This is not written for theological analysis, but just to write in plain language the basics and get it across.
I believe in a creator, God, who created the whole universe including earth, heavens, animals, and mankind.  He is all knowing, all powerful, all seeing and capable of anything. 
What is God’s nature?  Above all He is Holy.  God is both righteous and loving.  He will be both uncompromising in his judgment and unhesitating in his forgiveness.  He is the perfect Father.  He wants nothing more than what is best for us as His creation.  But we will never talk him into dealing with us on our terms.  I believe His greatest joy is when he sees us as mankind trying to serve him with all our heart.  God has given us instruction in the Holy Bible, which we read and strive to follow in all our life’s actions.
All of us have sinned and fallen short of the glory of God. (Romans 3:23)  Our natural attitude is inclined to be in opposition to God, although we were put on earth in order to serve God.  We are nothing without Him in our lives, but with Him we can accomplish much.  When I try to summarize the meaning of life, Ecclesiastes 12:13 does it best “Let us hear the conclusion of the whole matter: Fear God, and keep his commandments, for this is the whole duty of man.” 
Sin & Forgiveness
 God’s original plan was that man would live in perfectness with him in the garden, but through the temptation and sin of Adam & Eve, sin entered into the world.  Sin is any disobedience against God, anything that separates us from Him.  At the end of our life, we will be judged and will spend eternity in one of two places, the eternal punishment of hell, or the eternal bliss of heaven.  For many years (through old testament times) man’s method of atoning for his sin was through the shedding of animal blood in sacrifice.  In New Testament times God saw fit to institute a more perfect plan whereby each of us can have forgiveness of our sins and a close relationship with Him.  God sent his perfect and only son, Jesus Christ to earth.  Christ lived a perfect life here on earth, and then was crucified on the cross.  On the third day after his death, he arose from the grave, showing his ultimate power over Satan and death.   Christ’s blood was perfect, and when we have faith in His shed blood, this perfect blood pays the price for our sins in the eyes of God.   Jesus Christ is the only way for us to get back into fellowship with our father and spend eternity with him in heaven.  St John chapter 3, verses 1-21 are probably the best explanation of this, summed up in verse 16 “For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.”
Faith & Belief
So in order to be saved from our sins, we must have a saving faith in the shed blood of Jesus Christ.  Romans 5:1 “Therefore being justified by faith, we have peace with God through our Lord Jesus Christ:”  This has been one of my favorite verses my entire Christian life, and I hope you can see the peace and contentedness in our lives even as we face this situation.
There is a difference between a true saving faith or belief and the simple head knowledge that something is true.  When we speak of believing in Jesus Christ, we are talking about the deep belief.  John 3:3  “…Verily, verily, I say unto thee, Except a man be born again, he cannot see the kingdom of God.”  Belief is a whole life change, a radical conversion, our spirit is born-again.    St John 14:21 “He that hath my commandments, and keepeth them, he it is that loveth me: and he that loveth me shall be loved of my Father, and I will love him, and will manifest myself to him.”  And then action and obedience to God’s commands are required as we live our lives.
Acts 2:38 “Then Peter said unto them, Repent, and be baptized every one of you in the name of Jesus Christ for the remission of sins, and ye shall receive the gift of the Holy Ghost.”
Once we have this new belief in Christ, the fruits of repentance will immediately show in our lives. What is repentance?  It is sorrow towards God as we reflect upon the past sins of our life.  We make the effort to achieve reconciliation with those we have wronged (sinned against) in our un-converted life. We are sorry for the sins of our past life, and our attitude is one of great humility and unworthiness as we consider ourself in the light of God and who He is and what He has done for us.
Our repentance culminates as we are baptized as an outward sign of our belief in God.
Along with our repentance, God works a conversion in our heart through the Holy Spirit, so we are now able to put off the works of the flesh (Galatians 5:19-21) and put on the works of the spirit (Galations 5:22-23). 
We strive to live a holy life, one that pleases God in all things.  Not that we are earning our way to heaven but because we love God so much and it’s what His Holy Word instructs.  It’s not a casual way of life we take lightly, it’s the center of all other aspects of our lives.
Faithful to the end
Once we have experienced the work of God’s salvation in our heart, we must still battle on each day in order to enter heaven’s gates at the end of our life.  God promises his grace and it is only through his grace each day that we can continue to walk the Christian life with him.  Satan would love nothing better than to discourage us and deter us from our faith.
Mark 13:13 “And ye shall be hated of all men for my name’s sake: but he that shall endure unto the end, the same shall be saved.”
Revelation 3:21 “To him that overcometh will I grant to sit with me in my throne, even as I also overcame, and am set down with my Father in his throne.”
I don’t stand in fear or worry of entering heaven’s gates.  I have a deep peace and confidence in God.  But yet I know my race is not ended yet and Satan will still surely try to attack me and get me to give up and turn my back on God.  He would love nothing more.  So I must press onward, faithful to the end, the same as you who seem to have much more time than I.  God has promised to give us this grace that we can stay faithful to the end.
My heart’s wish
My earnest prayer is that in some way God can use the experiences I am going through to benefit each one of your lives.  If you have been converted for some time, I pray that God can help you reflect on your life in a way to be sure you are living as devoted to Him as possible each day.  If you are yet to experience the salvation and goodness of God, I pray he can work in your heart through this and bring you to a believing faith.  I’ll be glad to answer any questions I can, but there are many friends and family around you who can help as well.  Let us have humble hearts, and let God work in each one of us in a way that brings praise to His name through this.

So I hope that helps explain how it can seem unreal that we can have joy and peace while facing death.  It comes from understanding who I am relative to God, and where I fit in His plan, and trusting the reasons for everything to him. Sure, I am sad, I cry often, I'll miss my wife and kids if he takes me home "soon".  But I have hope of an eternal home.  And if He decides to heal and I'm granted years on this earth, I'll gladly serve Him each day.

Derek & Leann

Tuesday, February 7, 2012

Indiana address

Some have asked for our Indiana address.  For the next 6 weeks, it will be:

751 E. Tamarack Trail #210
Bloomington, IN  47408

Monday, February 6, 2012

Dr McDonald Meeting

We were blessed with safe travels todays and thankful for that.  Despite best efforts, we did not have the scans we needed so Dr McDonald still hasn't seen the key spine MRI.  They were supposed to have been sent from Mayo's directly here.  Those are supposedly to get here tomorrow now.  To be safe, we picked up duplicate copies last week at Mayo's and unfortunately trusted they had put on CD what we asked for. Turns out they did not have the key spine MRI on the disks we brought.  (3 copies is no better than 1 when they copy the wrong stuff).  So in the end the treatment plans are progressing based on the notes he read and the brain and lower lumber MRI he has and he should have all scans he needs tomorrow.

In meeting with Dr McDonald, it just all comes back to us the seriousness of the situation from a medical standpoint.  You can tell a different look in his eyes than when we were here last summer.  He doesn't really expect the radiation he plans to give to cure the cancer.  He does feel it will slow it down and give me more time, but he makes no promises.  So from that standpoint it was a hard day.  But yet I told Leann afterwards, we are not going to change our attitude towards God and life because of this.  We are going to make the best of each day going forward.  We still know that God is in control.  We are still submitted to His will.  Many are still praying for a miracle, and there is nothing today that says there is any less chance of that than there was two weeks ago.  But yet it's good to be reminded periodically of the seriousness.  It was great to have the time driving together today, and we went out for supper to a Mexican place and I just really savored the time with her.

The treatment plan is to give 36 gray of radiation (70 gray last summer to the original tumor site) to the whole brain.  At this point he feels that without treating the entire area in my body containing spinal fluid that it will most surely return.  This means there will be longer term (months out) effects to my cognitive ability, memory, etc. that usually affect most people and are noticeable.  Proton therapy is no better than photon in this regard.  The same dose would be given down my entire spine as well.  Then in the hottest areas of the tumor in my spine and lower brain he would go up to about 50 gray.  Proton therapy will spare some of the side effects to internal organs in the area of my spine.  The total time for this is about 5-6 weeks.  He is looking at starting sometime between next Monday-Wednesday depending upon when the machine shop can get all the equipment cut.  I was able to get the fixturing table frame and mask made today and they took the planning CT scan with me laying in that setup.  Each treatment this time will be more like 1.5 hours, maybe getting down to 1 hour on a good day.  Last summer they were more like 1/2 hour long.

Dr McDonald is definitely willing to discuss plans and look at what we find from the CA lab and the Boston meeting we have on Thursday.  Here at IU they really don't have much experience in the meningioma side of things outside of radiation.  He's open to combining radiation and chemo at the same time as he knows with some tumors the combination can be more effective.

My simple prayer is that I can just keep the right perspective that God would have me to.  Not too down, not too upbeat, just doing the right things with my time each day.  We love you all so much and thank you for your prayers for us.

Derek & Leann

Headed to IU

Leann and I are driving to Bloomington IN today, for meeting with the radiation oncologist, Dr McDonald. We covet your prayers for calmness and wisdom as this seems sure to be one of those days with decisions to make or unexpected changes in direction.

It was a good weekend at home. The trip home from Mayo went well, and I do pretty good riding in the van. It was just so good to be with the kids again and read stories to them and catch up with all they did while we were gone. Sunday we spent at home listening to Tremont's services. My cousins family came over for supper and brief visit. We got a bed setup for me in the living room so I can spend lots of time with everyone but laying down. After about 45 min sitting up or at the table, my neck gets pretty worn out. So if I can visit while laying in bed I feel pretty good. We even got out for a walk to the end of the road Sunday afternoon, which felt really good.

Thanks so much again for lifting us up in prayer. We feel it and appreciate it so much. We had a nice pile of notes in the mail when we got home and appreciate each one.

Derek & Leann, Lexi, Wesley, & Whitley

Saturday, February 4, 2012

On the way home

I got out of the hospital last night about 5. We spent the night at the guest house and hit the road around 7 this morning. Leann's parents are leading the way in their van. I'm sitting in the passenger seat of ours tipped back with a pillow under my head and fealing pretty comfortable while Leann drives.

I think the most challenging position is going to be sitting up, things like eating at the table or trying to do desk work where it puts more strain on my upper back and lower neck muscles. I really slept pretty comfortably though last night.

My main prayers now are that God will provide healing for my incision site so I can get my strength and mobility back, as well as that God will slow the tumor growth so I can have good arm/muscle function. The tingling in my left hand isn't getting better, I just sense that I'm loosing something in that hand.

Thanks again so much for all the love and prayers we feel.

Derek & Leann

Thursday, February 2, 2012

Thursday update

Thanks everyone for another day of prayers.  We really continue to feel all of your support and pleadings to God on our behalf.  I have more mobility today, it's been easier moving my neck and getting in and out of bed.  Even made a lap around the floor without my walker tonight.  So we are really thankful.

On the future medical treatment front, we have a 1 pm appointment in Bloomington IN on Monday to get all the preparation steps for radiation taken care of there.  We don't have all the details of the treatment figured out yet but will get the positioning devices made with the staff there on Monday and meet with Dr McDonald to discuss his plans for treatment.  We have housing arranged for in Bloomington so that base is covered for now. We are hoping to be released here from the hospital sometime tomorrow as long as things continue to go well.

I'm blessed with a lot of caring family and co-workers who are helping with all the other research into the different forms of chemo and alternatives to it.  So we've got some other doctors we are in the early stages of reaching out to in order to explore what might be applicable to my case.  It seems that everyone agrees radiation is the next best step but the confidence in it is not so high that we pursue it only.  We've got a lab in California doing some testing and checking into a doctor in Boston.  There's a clinical trial at Northwestern that might be an option if radiation doesn't succeed.  It just seems that this is so rare that it made sense to branch beyond the Mayo's family for this.  Just pray that God would help direct us in sorting out these decisions as they are not always easy and take a lot of effort and time so we pray we can make good decisions quickly without wearing us all out.  And meanwhile realizing that ultimately God is in control and we are not trying to discount his capability for just a plain old good fashioned miracle.

One last encouragement to you, as I was drifting to sleep last night and closed my eyes, I just saw this faint image filling the room of people standing around on all sides.  It happened a couple different times as I opened and closed my eyes.  I recognized a few of them as Bros from Tremont church, others I didn't recognize.  It was one of the most re-assuring experiences I have had, as though this represented all those people, some I know, some I don't know, who are surrounding us with their prayers to God for us.  I don't desire the pain for  all my family and friends to watch us go through this, but experiences like this have sure built my faith, and I just don't think you can buy them any other way than going through suffering.  The rest of you probably have been through experiences like this in life and I'm probably just the last one to experience it, but it really builds my appreciation for all of you.

Derek & Leann

Wednesday, February 1, 2012

Wednesday update

Thanks everyone for all your prayers. This is my first post since surgery. I can type from bed with the right pillows to help. In general I feel pretty good. I was able to make half a lap around the neuro floor today with a walker. All the drains are disconnected now which is a good sign. I've been sitting up in the chair for most meals but it's hard on my neck to sit up for too long. In general the pain is going ok but at supper it got bad since I had reduced meds a bit too much too quickly.

My brothers came up this morning to see me which was really nice and then they took Mom back home with them tonight. Leann's parents arrived later this afternoon so it's been a busy day catching up with everyone. It's good to have people to talk with though so I don't get too bored.

We were able to meet with the neuro-oncologist Dr Hammack this evening. It helped clear up some decisions but seems like we always hear new things too. I asked her how often they see grade 3 meningiomas here at mayo's and she said about 3 per year. So this tumor is really rare and they just don't have experience with them.

As far as the course between radiation and chemo, she feels there is more hope in radiation, as there are no drugs FDA approved for meningioma tumors. The drugs she had mentioned have been used before but were developed for other sorts of tumors. When we talked to the radiation doctor at IU last night, it sounded like he was putting more hope in chemo than radiation, because around the spine they cannot give as high a dose of radiation. So it's a little discouraging to learn how unsure everyone is about how to treat this.

The radiation oncologist at Mayo's thinks we will be better to go back to Indiana for radiation treatment since they will have experience with the treatment fields and be able to prevent overlap. This makes one decision a lot easier at least.

We just had a group of Mennonite singers stop by singing a couple songs. "some glad morning, when this life is over, I'll fly away". None of us know how far away that morning is but it just made me sob to hear the beautiful words and think of heaven.

Back to the treatment plan. So mayo recommendation is get radiation as soon as possible at IU and then do scans and follow up with mayo 6 weeks after radiation to see if it's working. They wouldn't recommend doing the chemo until we really see what the radiation does. We did get some tumor sample to a lab in California that is testing different chemo drugs on the tumor cells so we'll know which drugs if any have promise of working once we get to that point.

So tomorrow looks like phone calls to IU and praying for continued recovery. We continue to put our trust in God rather than man. We feel so unworthy of all the prayers we feel.

Derek & Leann