Tuesday, August 19, 2014

MRI and Moving Forward

We have had a few eventful days. On Sunday morning Dennis woke up with a headache and was confused. I called the on-call doctor and they said to bring him in to be checked. Lots of testing and an MRI led to an overnight admission to the hospital.   The preliminary reports from the MRI indicated some progression of the tumor.  This was concerning but we were waiting for the full report.  Dennis came home Monday afternoon and was doing much better.

Today we had an appointment with his doctor. The full review of the MRI showed an area that had gotten smaller and what was originally thought to be progression proved to be scar tissue.  We focused our discussion on how to help Dennis get stronger.  He will be starting physical and occupational therapy.   His legs are very weak and we want to maintain his ability to walk.  The weakness has several causes including the medication he is on, the location of his tumor and the fatigue from radiation.  We are hoping to reduce the medication in the days ahead.

So for now, we focus on getting stronger.  We are thankful for the good team we have to help us get the supports we need.

Sunday, August 3, 2014

Overwhelmed by God's Provision

Our Lord Provides

Dennis continues to struggle with getting up from a seated position.  This is especially hard if he is on a soft surface like a couch.  We decided that having a recliner that would lift him up would be beneficial to him.  So, while Dennis went out to lunch with some friends, I went to the furniture store to purchase a chair for him.  One of the guys Dennis was out with for lunch felt God laying us on his heart and gave Dennis a check.  He did not know we were making a major purchase at that same time.  On Saturday, Dennis' Bible study group also gave him some monetary gifts.  These gifts paid for the new chair as well as a little extra.  Because Dennis can't walk stairs, he is unable to get to the family room to watch TV.  We are very low end TV watchers but Packer season is around the corner.  Moving the TV upstairs was beyond my skills as Dennis has a lot of "extras" attached to it.  I decided I'd put some money with the extra from the gifts we had and get a TV for the living room.  While I was out shopping someone else dropped off a gift for us.  When I got home and saw this gift, it was just enough to cover the TV.  Isn't it amazing how God used 9 different families to provide the exact amount that we needed for these two items?  We are overwhelmed by God's provision and attention to detail.  



Physical Healing

Dennis is gaining some strength and increasing in other skills as well.  He is better with his speech but still has room to improve.  His walking is very slow and he can't walk very far. We are working on this by taking short walks. He will have an MRI in a few weeks and that will tell us how well the radiation worked.  We will also be determining if some speech or physical therapy would be helpful.

My shoulder is still troublesome.  I have started physical therapy and see the orthopedist this week.  An MRI may be needed to determine if I have tear in the rotator cuff.  I'm unable to even be on the computer more than a few minutes without pain.

Please pray for continued healing for both of us.

What I Want - What I Have

Since we lost our golden retriever in December, Brooklyn has been talking about getting another one.  Recently as I was watching our springer, Willow, play with Brooklyn, I realized she was missing out on what she currently had - a loving, tolerant pet who is her constant companion.  After discussing this with her, she saw too that by focusing on what she didn't have, she was missing out on the blessing she did have.

But I wonder -  how different am I than Brooklyn?  I find myself wanting what I don't have rather than focusing on the blessings in my life.

I could, and frankly have, often thought of all the  - I really miss... items in my life right now.  
  • I miss carrying on a conversation with Dennis that is easy and not hampered by his problems communicating.
  • I miss Dennis coming home with flowers for Brooklyn and me.
  • I miss being able to go someplace without having to plan for Dennis' safety.
  • I miss being able to enjoy summer fairs, festivals, hikes, biking...
  • I miss walking hand-in-hand with Dennis on a summer evening.
  • I miss seeing Dennis play with Brooklyn and hearing her giggles.
  • I miss knowing Dennis is taking care of us.
  • I miss seeing Dennis mow the lawn or drive his truck.
  • I miss knowing Dennis can fix anything on my computer
OK, I think that is enough.  My discussion with Brooklyn made me realize I too was focusing on what I didn't have rather than what we do have.
  • Dennis has improved some since ending radiation.
  • We can go out for a meal together.
  • We have many friends who make it possible for me to get out and know Dennis is taken care of.
  • We have seen God meet our needs in so many ways and through so many people.  
  • We have learned to trust God on a completely different level than ever would have otherwise.
So as we continue to walk down this path, I am trying to focus on all that God has provided for us so I don't miss this because I am looking for something else.  



Friday, July 18, 2014

Lots Going on Here

Looking back at the last post I realize a lot has been going on here.

Dennis

Dennis saw the doctor today. This was his first check following the radiation. He said Dennis is doing about where he would expect him to be at this point. He said Dennis should continue to gradually increase his activity as much as possible.  He said it will take months to gradually regain his strength. 

He also is having some difficulty with talking.  This should improve also. If it is not doing better by his appointment in four weeks speech therapy may be needed.  He will have an MRI in four weeks.

Ellen

A little over a week ago I grabbed for one of our dogs as she tried to slip out of a door, lost my balance and slammed my shoulder into a support post on our porch. I did not break my shoulder but I have an injury to the rotator cuff. The doctor does not know if it is torn or just badly bruised. For the next three weeks I will have physical therapy. If it does not improve they will do an MRI to see if there is a tear. For now, I am resting it a lot and trying to keep the pain down.

Brooklyn

Brooklyn is enjoying summer school. She has taken math, cooking, computers and sign language.  She has also enjoyed time at the county fair, spent time with friends, planted a garden, attended Concerts on the Square and learned to roller blade.

She will be going to Abundant Life Christian School in fall.  We just got the school supply list. Yikes, summer is going too fast.

Prayer

  • Continued gains in strength and communication use for Dennis.
  • Healing of Ellen's shoulder.
  • Adjustments to a new school for Brooklyn.

Friday, July 4, 2014

Lots of Changes

Monday

On Monday I went into work.  It is the first time I had been into the office in close to two weeks.  Dennis took Brooklyn to the bus stop that is two houses away from us at about 7:40.  She is in summer school.  When he came home, he fell while going into the house.  When he finally was able to get up and call me it was around 11:30.  Needless to say I headed home immediately.  He had a bruised elbow but mostly was OK.  I had just gotten him an emergency call button but he had forgotten to put it on that morning.

Ellen's Changes

Since the incident on Monday, it became clear that I can't be gone for long periods of time so I am working from home.  My company and supervisor have been so supportive of this change.  I'm not able to work full-time most days as Dennis needs my help, but I am able to work a lot at this point.  I've set up a home office so it makes it easier to focus on my work with having a dedicated space for doing that.

4th of July

This was supposed to be a quiet day for Dennis and me.  Brooklyn had plans to spend the day with her aunt and uncle and I was hoping Dennis and I could get have a picnic.  Well, Brooklyn got to go to my sister's house but from there, it was not as planned.

I had noticed that Dennis' leg and ankle were swollen yesterday.  I sent a picture to his nurse asking what she thought it might be but she was off for the day.  Since he had fallen on Monday, I thought he may have injured himself and we'd see how it was doing over the weekend.  This morning it was significantly more swollen and cool to the touch.  Not sure if this was an injury or something else, we headed to the ER.  After x-rays and an ultrasound, they determined he had a significant blood clot affecting most of his leg.  It is a good thing we went in.  He is home and will be receiving two shots a day to thin his blood and allow the clot to be absorbed.  We had our "picnic" in the ER while waiting for tests to come back.  (The UW cafeteria has really good food.)  He will need to be up and about as tolerated and when not up, have is legs up to reduce the swelling.  Our doctor had told us a long time ago that about 1/3 of patients with this type of cancer will have blood clots.  We had avoided them up to this point.

Overall Conditions

Dennis continues to struggle with words.  He knows what he wants to say but so often he can't get the words to all come out.  As you can imagine this is frustrating for him.  We are hoping as we get further out from radiation that this will improve.  

After radiation he was really struggling with getting out of chairs.  He has improved in this area.  We are also seeing some improvement in his fatigue level.  

As You Pray

Please keep us in your prayers.  There have been a lot of changes in the last few weeks and we are all adjusting to them.  

We will be enrolling Brooklyn in a school in Madison this year as my schedule of going to Watertown on a daily basis is not predictable.  We are working on the details of car pooling with some other Sun Prairie families.  Please pray for her as she adjust to a new school and makes new friends.

As I am not able to work full-time, I will very quickly exhaust my sick time and vacation time.  We are thankful for a good financial adviser that is helping us plan for this.  Please pray that God continues to meet our needs during this time.  Please also pray for me as I assist Dennis and parent Brooklyn.

Please keep Dennis in your prayers as well.  Specifically pray for the blood clots to dissolve and for continued improvement with his speech and fatigue.  Also, please pray for him as he lives with these frustrations on a day-to-day basis.  Some days they are overwhelming.  

Thank You

Thank you all for your prayers, words of encouragement and assistance.  We don't know what we would do without you.  

We continue to trust in the Lord and his plan for this season of our life.  It certainly is not something we would have planned but we know it is part of His plan for each of us.  Recently I was in a Bible class and as we entered, we each were given a single piece of a puzzle.  The lesson was on how we only see one event at a time in our lives and don't always know how they will fit together.  It is much like that one piece of the puzzle.  On its own, it does not give you a good idea of what the picture is.  It is only when they are all put together that we can see the full picture.  God, the artist of our lives, knows the full picture.  I have that puzzle piece in my wallet as a reminder that all of this may not make sense to me right now but it is only one small piece to a much bigger puzzle.  


Saturday, June 28, 2014

A Rough Road

Dennis Update

Dennis is about a 12 days out of radiation.  He continues to struggle with fatigue, walking and word finding.  We saw the doctor on Tuesday because he was not feeling good and felt like each day was getting worse rather than better.  The doctor told us that he was just to the point where the impact of the last radiation treatment was beginning to subside and he should see improvements in the days ahead.  However, he also told us not to expect improvements on a daily basis.  They will be very gradual and more noticeable when looking back over a week or more.  Dennis will see the doctor again on July 18th.  If he is not getting around easier by then, he will consider physical therapy to help Dennis build back some strength.

On Wednesday Dennis starting having a lot of pain in his back.  By Thursday afternoon he was very uncomfortable.  We decided he needed to see a doctor so we headed to the ER.  After blood work and x-rays they ruled out the scary stuff like pneumonia or spread of the cancer into his spine.  It is most likely a pulled muscle so we have been diligent about using pain medications and that is keeping the pain under control. 
 

11th Anniversary

Today is our 11th anniversary.  We have been so blessed to share these years together.  I am amazed at all the blessings we have seen in these 11 years.  Here are just a few memories of those 11 years.  
Our wedding day.

Honeymoon - Nova Scotia

First Anniversary - San Francisco

Vacation - across the street from the Corn Palace

Dennis in Arizona

Ellen feeding a tiger in Arizona

Nashville, TN

Outside the Forbidden City in Beijing with Francis, Tracy and Ping

Our first family picture

Family Picture - 2013

Monday, June 16, 2014

Radiation is done....now what?

Dennis finished the last of his 27 radiation treatments today!  We are so glad these are done.  They have really taken a toll on Dennis' stamina and on his ability to come up with words from time to time.  Although we are rejoicing that this stage is done, it has been an emotionally trying day as well.

This second round of radiation was something we have always kept as a last resort or at least for nearing the end of the options.  We knew going into it that it would be tough and that with radiation, good brain cells are also destroyed in the process.  What we didn't know is which functions might potentially be affected by this.  We still don't know that.  Radiation continues to work for awhile but at the same time swelling starts going down.  The bottom line is until some time has passed we won't know what long-term impact this last round of radiation has had.  This is also true in determining if the tumor is under control.  He will have an MRI in several months that will give us a better idea of what impact the radiation had on the tumor.

In addition, we had discussions with his doctor today that are hard.  There is no way in knowing when this tumor will start growing again.  Usually the doctor told us that they see regrowth in 6 months to 2 years but that they see people with shorter or longer time frames.  As hard as that is to hear, we also need to hear it in order to be prepared.  The doctor did tell us that when they feel they have done all they can, he will be open with us about that but that it is important to start thinking about options such as hospice so that when it is needed we will have plans in place.  He was very clear in saying that he is not saying that he thinks Dennis has less than 6 months which is what most people think of when they hear hospice.  He has no way of knowing at this point and wants us prepared.

We continue to seek God's direction in all of this.  We know and believe He is fully able to heal and restore Dennis completely. The only question is if it will be here or in eternity.  We will trust Him in what He is doing and that it is all in His plan for all of our lives.  We will live and enjoy whatever time we have left together. We know one day we will all be reunited in Heaven where there will be no more disease or death.

Please keep praying for us as we make this journey together.
  • Pray for Dennis' strength to return and for his word finding challenges to go away.
  • Pray for complete healing and restoration - God is able!
  • Pray for us to have peace during the days ahead.
  • Pray for wisdom for us and the doctors as we make decisions moving forward.
  • Pray for the MRI in two months to show that the tumor is under control. 
Dennis and Brooklyn on Father's Day



Tuesday, June 10, 2014

June 11, 2012 - Two Years Ago...

Two years ago Dennis and I said good-bye as they wheeled him into the operating room to remove the tumor on his brain.  There were a lot of unknowns that day.  We wondered what they would find and if it would be cancer.  We wondered if surgery would cause life altering changes to his overall abilities.  We knew there was the possibility that he would lose the ability to speak.  I remember wondering if that final "I love you" he said as they wheeled him off to surgery would be the last time I heard it.  I headed to the waiting area where friends and family waited with me throughout the procedure.  Updates came and we waited some more.  Finally he was out of surgery and doing well.  In the hours ahead I heard his voice again.  In fact, around 2 in the morning he wanted gum.  So, after checking with his nurse and getting the OK to give him some, I searched the hospital for gum.  Mission accomplished - the canteen is open late at night.

In the days ahead, Dennis improved.  We waited on pathology reports, praying the news would be that the growth was benign or at least a treatable cancer but the news came that he had a glioblastoma multiform (GBM) a very aggressive cancer and so our journey of two years began.  We learned that survival rates for this cancer average about 14-16 months but here we are, two years later.  We have learned a whole new vocabulary about radiation, chemotherapy, trail programs...(so far he has been in four different trials) and the list goes on.  We have met some incredible people along the way.  Lori Hayes, his nurse, is amazing at arranging all the details and helping us understand all that is going on.  Dr. Robins has been leading the fight with this cancer and being Dennis' advocate in getting into trials that could help him.  Dr. Howard is Dennis' radiation oncologist who actually pioneered the radiation Dennis is doing right now.  In the past, it was impossible to do a second round of radiation to the brain.

In addition to the medical team, we have been blessed by so many people both near and far in our lives.  We have never felt alone in this journey as so many of you have upheld us in prayer and supported us in our needs.  We don't know what we would do without you.

We have seen God work in so many ways.  Just in the last two days we have had amazing things happen just when we needed them that only God could orchestrate.  I have to share these with you.


Brooklyn and I took a quick trip to Colorado for a wedding this weekend.  On Sunday we were heading back home and kept hitting flight delays.  After being on a plane, pushing out and then having to pull back in and get off of the plane for mechanical issues, the gate agent came over to me and asked us our last names.  She did not tell us why.  It was evident very soon however when I received a text message from our airline that my flight number changed and where the plane was leaving from.  The gate agent had booked us onto the few remaining seats on the last flight home.  Shortly after this, she announced the flight was cancelled and told everyone to head to customer service.  Amazing.  


Tonight Dennis was having rough night. He is so exhausted and was wondering if he could even finish the last of his radiation.  He has four sessions left.  We were discussing the options and if he should talk to the doctor about the risks of not completing it.  At this point the phone rang.  It was a friend from church that was calling.  He had Dennis on his heart and wanted to be an encouragement.  He shared Isaiah 43:1-4a with me:



But now, this is what the Lord says—

    he who created you, Jacob,
    he who formed you, Israel:
“Do not fear, for I have redeemed you;
    I have summoned you by name; you are mine.
When you pass through the waters,
    I will be with you;
and when you pass through the rivers,
    they will not sweep over you.
When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze.
For I am the Lord your God,
    the Holy One of Israel, your Savior;
I give Egypt for your ransom,
    Cush[a] and Seba in your stead.
Since you are precious and honored in my sight,
    and because I love you.

It was just what we needed to hear.  Yes, God is with Dennis as he walks through this trial and it will not overwhelm because God loves us!  

So, we have reached the two year mark.  It has been a tough two years.  But it has also been an amazing two years.  I don't know of any other time we have seen God's hand so clearly in our lives.  He has allowed this time in our lives for a purpose even though it makes no sense to us.  When Dennis was in the emergency room the day they found his tumor, his comment to me was, "God can be glorified in this."  That is still our prayer - May God be glorified.