"You Didn't Need that Too!"

Last summer, about the same time Dennis' care level increased, I seriously injured my shoulder.  It was so bad I had to ask Brooklyn to help me undress.  Whenever someone found out about my injury, I would hear, "You didn't need that too!"  Frankly, I agreed with this sentiment.

But God had a plan.  I believed and trusted that even in this circumstance that made no sense, God still had a plan.  At times it certainly seemed out of control and one more difficulty I did not need at this time.

We went forward.  I started physical therapy, learned to do lots of things with one arm and gradually started to get better.  Time passed and we saw God provide for our needs even though I was not being paid while we waited for my disability claim to be approved.  Eventually I received a denial letter for the claim.

Dennis' health continued to decline and I almost didn't appeal the disability denial because I was so busy meeting his needs, but I followed the advice of my physical therapist and filed an appeal.  Last week I learned the appeal had been sucessful and I received a check for over three months of back pay.  We were thrilled for this extra income we had not anticipated.

What we did not realize was how God was using all of this to prepare us for a need we did not know was coming.  On Tuesday, a routine furnace check revealed our old furnace needed to be replaced.  My shoulder injury and delayed disability payment was God's way of ensuring we would have the money in hand for this expense.

So even though many people said, "You didn't need that too!", and I wholeheartedly agreed, God clearly had a plan and a purpose in all of this and I did need this too!

Philippians 4:19  (NIV)  But my God shall supply all your need according to his riches in glory by Christ Jesus.  He just doesn't always do it the way we planned but we can rest in the assurance that His plan will always be superior to ours!

Dennis Update

Dennis is about the same as he has been for the last several months.  He is unable to get out of bed or do anything for himself other than feed himself and even that is with great difficulty.  His speech has not returned but he understands what we say and enjoys having people stop by or call him.  

Please continue to keep us in your prayers.  Your prayers are the source of our strength.  

Merry Christmas from Dennis, Ellen and Brooklyn!

Stable

Born in a Stable

At this time of year, when we hear the word "stable" we tend to be reminded of the humble birth of our Savior.  Overcrowded and unwelcoming would describe Bethlehem on the day Jesus arrived. The only place available for the birth of Jesus was a humble stable surrounded by animals but announced by angels.  Wow, what a birth announcement that had to be!

We are preparing for Christmas and endeavoring to enjoy the season as much as possible.  It certainly does not resemble past Christmas' in many ways but in other ways is very much the same.  The tree is up and surrounded by gifts.  Our Bible study group helped us set it up and get it decorated.  Two friends took Brooklyn shopping and one friend went shopping for Dennis so he would have a special gift for Brooklyn and me this year. Several other friends have also done shopping for us.  We are amazed again at God's provisions through the generosity of our friends.

Brooklyn's school Christmas program was last week and her class also sang at a local mall.  I was able to video the program so Dennis could see it too.  It took me awhile to get the file converted so he could see it on the TV but it was worth it.  Dennis always did stuff like that so I am having to learn how to do it now.

My family will join us for Christmas on Christmas Eve day and of Dennis' family have been stopping in to see us in the last few weeks.  We plan on spending Christmas day at home.  Dennis' co-workers also stopped in for lunch the other day.  We had a good time caroling with our Bible study group on Sunday night.

Christmas has always been a favorite time of year for Dennis and he is appreciating the cards and notes from so many of you.  Thank you for helping make this season special for us.

Stable

Stable is also the word that can best describe how Dennis is doing.  I asked his nurse a few days ago what her opinion was as sometimes it is hard for me to tell since I am with him all of the time.  Her opinion is that there has been no change in his condition since entering hospice.  

Dennis requires total care from me and the hospice aides.  He is able to use his left hand so he can eat by himself but other than that, needs someone to assist him.  His speech has not returned so we spend a lot of time on yes and no questions when he wants something.  As you can imagine, this is frustrating for him and for us.  He spends a lot of time sleeping.  

Thanks to the generous gifts of friends, I am able to hire an aide from time-to-time so that I can attend events at school with Brooklyn or just get out for a break.  Yesterday Brooklyn completed her first school project and the students had an open house to display them.  It was fun to go and see all the hard work the students had put into their animal projects. Brooklyn's animal was the platypus.

 

Praying

Please continue to keep us in your prayers.  It seems like every time I turn around something else in the house is breaking down.  I'm not sure if is happening more than normal or just that I am more aware of it.  We are blessed with friends who have helped with these repairs when they are beyond my skill level to complete.  

Please pray for:

• The people who come into our lives daily to assist Dennis.  We endeavor to point them to Christ as we interact with them.
• Dennis.  His days can be long at times.  He does not have pain but his muscles get sore from not being used.  Hospice is trying to find a volunteer who would come and do massage therapy for him but so far have not found one.  This would be so helpful for him.  
• Brooklyn.  This is all a lot to process for her.  Every so often it bubbles up and spills over.  
• Ellen.  Pray for me to know the balance between caring for Dennis and being available for Brooklyn.  
• Also, please pray that Dennis will feel good and have enough energy to enjoy Christmas day with Brooklyn and me.   

We trust all of you will have a joyous Christmas as you celebrate the birth of our Savior. 

Lasts

There are many "lasts" in everyone's life.  Some of them slip by barely noticed while others are filled with awareness of the changes they represent.  "Lasts" are mile markers of the changes in life.  Some we eagerly anticipate, like the last payment on a mortgage, while others come with mixed emotions, like the last day a child is home before heading off to college.

I have been thinking about some of the "lasts" in our lives.  It seems like there are so many of them.

• The last time Dennis drove a car was the night we got the call that told us an MRI earlier in the day showed a mass in Dennis brain and we should head to the emergency room.  Yes, we weren't thinking too clearly in letting him drive at that point, but it would be the last time he ever drove a car.  Dennis told me once that he hopes there are cars in heaven so he can drive again.
• There have been many "lasts" in regards to his treatments.  The last chemo, the last radiation, the last MRI...  Each one of these came with mixed emotions.  Glad there were done but fearful of what lay ahead.  
• I remember the last time we played a game of UNO together as a family.  Dennis struggled with it but it was still fun to have that time together.
• Personally there have been a lot of "lasts" - the last night we shared a bed, a last hug, a last conversation just before falling asleep.  I miss these the most.
• On a beautiful summer day we had our last picnic together.  It was a spur of the moment decision to get out and enjoy a beautiful day at the park.  We packed up Dennis' wheelchair, bought subs and went to the park.  After we ate I pushed him around it on a walking trail.  It was a great day.  
  
• Our last date with just the two of us was also a spur of the moment decision.  We went to Olive Garden for lunch.  Ironically, it was also the place we had our first date alone as a couple.  
  
• Recently there have been so many lasts - the last time Dennis walked was the day he fell and went into the hospital. The last ride was on the way home from the rehabilitation center.  I don't remember the last conversation we had where he was able to easily talk with me in more than just a word or two.  I so miss hearing his voice and being able to learn from his wisdom.

Yes, our lives have changed drastically in the last 30 months.  Some of those changes have come so gradually that they slipped by almost unnoticed, while others have been abrupt and hard to miss.  We miss our old lives but at the same time we have grown in ways we would never have imagined.

We have a new and vibrant view of heaven.  By all appearances it looks like Dennis will see Jesus face-to-face and experience the joys of full healing and the splendor of heaven in the near future.  I know he will be waiting for us when we too join him there.  

I have a deeper faith and trust in God's provision than I ever had in the past.  Seeing God provide for us has strengthened my walk with the Lord.  I know there are those that would say, "But how can you say that when God is allowing Dennis to be taken with this cancer?"  My answer is always, that I don't understand it but I have learned to trust God and cling to Him in ways I never would have imagined.

Dennis is home now with the services of hospice assisting us.  He spends all of his time in bed and requires help with everything except for feeding himself.  We continue to trust God with our needs and have seen Him supply in miraculous ways.  We don't know when other "lasts" will come but we do know we can trust in the One who knows tomorrow and loves us.  

Settling In

We have been home a few days now and I think we are beginning to settle in some.  The various aides that have been here have been very good and have helped me come up with some easier ways to assist Dennis.  I'm thankful for their expertise.

Willow has been glad to have Dennis home too.  When we set up his bed and put his pillow on it, she kept going there and falling aseep.  Now that he is home, she spends lots of time snuggling with him.

In the last few weeks I have been talking and thinking a lot about all that we have enjoyed over the years God gave us to together.  We have been able to travel together during those years and enjoyed seeing so much of the U.S. and loved Nova Scotia.  Of course our highlight from traveling will always be China.

I would love to grow old with Dennis but it does not appear that is what God has in store for us.  Pleas pray for us as we walk through the days ahead.

Dennis is Home

Today was the day to go home.  After a month away either at the hospital or the rehab center, Dennis is finally home.  He is home with the aid of hospice care services.  In the next few days we will be meeting with his nurse and aides.  The nurse will come at least once a week to check on him and aides will be here every morning and most evenings to help get him ready for the day and to help get him ready for bed.  There are two nights when I will not have an aide but they are working on getting someone for those nights as well.

The move itself went well.  We knew it would be tiring for Dennis, and it was, but he is glad to be home.  We are going to be adjusting how we do things as we go along but I'll have the experts from hospice to help with that.

Thank you so much for your contributions to Dennis' relief staff.  Words just cannot express our gratitude.  I have a call into a local nursing school to see if some of the student nurses would be interested in working for us.  If that does not work out, there are agencies through which you can hire staff that I will be contacting.  Just knowing we have the ability to ensure Dennis is taken care of and I can do things like attend Brooklyn's school events or go to church is huge.  Thank you.

Willow, our spaniel, has been laying on Dennis' pillow since I made his bed up.  As soon as Dennis was settled into bed, she jumped on the bed and cuddled with him.  I think she missed him.

Prayer Requests:

• Pray for Dennis to be comfortable with all the new people who will be assisting with his care.
• Pray we can find some good relief staff to help us as well.
• Pray my back does not give me problems from all the care I am providing.
• Pray for Brooklyn as she continues to process all that his happening around her.
• Pray for all of us that we will bring God glory through this stage of Dennis' illness.

Many of you may have heard of Brittany Maynard, a young women with the same diagnosis as Dennis, who chose to end her own life this week.  A friend of ours shared our story in a radio spot as a contrast to the choices Brittany made.  You can listen to it here.  http://wifamilycouncil.org/brittany-and-dennis-same-disease-different-story-2/

Hospice

The weeks Dennis has spent in rehab have not helped him gain back the use of his right side.  Today we made the decision to enroll in hospice and work on getting the supports we would need in place for Dennis to come home.  We will meet with the team at the rehab center and the hospice team to define what equipment and support staff I will need to be able to care for him at home.  Since Dennis cannot stand or even move himself in bed, it will take a lot of equipment and planning to make sure I can care for him.  The expertise of the hospice staff along with the recommendations from the rehab staff will help us get a plan in place.

Dennis and Brooklyn snuggling before we left for the evening.

The one area that hospice does not cover is providing relief staff so I can have time off.  This will need to be provided through privately paid staff or volunteers.  The link on the right of this page is to a fundraising site that will collect donations for that purpose.  Throughout this journey we have seen God provide in marvelous ways and we know He will continue to do so now as well.  I have had several people ask me to set up a donations site and have been reluctant to do so. But with the need for staff to assist me and believing I should listen to the counsel of those around me I set up a YouCaring site.  Thank you for any assistance you can give us.

Please pray for:

• The planning of the details needed to care for Dennis at home.
• The move - this will be very tiring for Dennis.
• The people God will bring into our lives during this part of the journey.
• Brooklyn as she processes through the changes with Dennis.
• Ellen as she becomes a 24/7 caregiver for Dennis.

Rehab Update

Dennis has been in rehab for a week.  It has been a full week with therapy dominating his time.  By the time the ladies are done with him he is exhausted.

Since the fall and seizure he has lost use of his right arm and leg.  We had hoped this would come back but at this point we are not seeing that happen.

We have a team meeting tomorrow to assess his progress and goals.  If he is benefitting from being here we will continue but if not we will be looking at how he can go home and have the supports he needs.   Most likely this would include hospice.

Keep praying for wisdom and peace as we travel this road.

Dennis at therapy.

Moving to Rehab

Dennis is doing well today.  He was up in the morning, snoozed through much of the late morning and early afternoon and up a bit tonight.  He is scheduled to move to Oakwood Rehab at 10:30 tomorrow morning.  Please keep him in your prayers as this will be a very tiring day for him.

Our goal is to get him home as soon as possible.  If we find that he is gaining strength at the rehab place he will stay there for awhile but if that is not the case, we will be looking at ways to get him home where he can be with us.  This may include accessing the services of hospice.

We can't say enough about the amazing staff on the B6 unit at the University of Wisconsin Hospital.  We were blessed with a team of nurses and support staff that went out of their way to ensure Dennis had the care he needed.  The social worker also was amazing in helping us get Dennis into the rehab center close to home.

We don't know what the days ahead hold.  Dennis' body is tired and it appears the last 28 months are catching up with him.  Please pray for us in the days ahead to know what decisions to make and for Dennis to regain strength if this is possible.  Dennis on the night we found out he had a brain tumor said to me, "God can be glorified in this too."  Please pray that is the case in the days ahead.  We desire to finish this journey well.

His address is:

5565 Tancho Dr, Madison, WI 53718

Lots of Changes

The last two weeks have been fulm of changes.  Dennis is on blood thinners for his blood clot and this caused some bleeding so he spent a night in the hospital last week.  Then on Sun day,  he got up to go to bed, fell and had a seizure.  We called the ambulance and he has been in the hospital since then.  The seizure has made his right side weaker and he is very dizzy.  He has had two CT scans and there is no bleeding on his brain.  The MRI they did showed that the tumor is not growing. So now we are working on helping him regain strength.  He can't walk or get up on his own so we are needing him to go to a rehabilita  center to work on getting him going again. We may know as early as today where he is going.

To make our lives even more complicated, I started having a backache yesterday and I'm in a lot of pain today with back spasms too.  Hopefully it will get better soon.

Please pray as we make decision over the next few days and also pray that Dennis gets stronger so he can come home.

27 Months

It has been 27 months since we learned of Dennis' cancer.  In those early days I would not even look at the internet to find out more about it.  I knew it was serious and terminal.  I couldn't cope with knowing the details.  Gradually I began to dig and learn more about it.  Average survival is 14 -16 months - I remember thinking if we would have one more Christmas, birthday, anniversary...

Today I look back at those 27 months and can look at it from two very different perspectives.  At times my heart screams to look at it through the losses these 27 months have taken from us while at others I choose to look at all the things we have gained.

The Losses

We entered this journey at a time when life was at its best.  We had just finished a year long journey to adopt our beautiful daughter Brooklyn and were just starting to settle into being a family of three.  We had good jobs that met our needs and our wants.  We were surrounded by good friends and were living the American dream.  We were able to travel and help others.

One of our early days as a family of three.

In the 27 months since Dennis has been diagnosed most of that life has disappeared.  Dennis has not worked since his diagnosis, I recently went on a leave of absence in order to care for Dennis.  Dennis can barely make it out to dinner without being exhausted so we don't travel.  In fact, I find it difficult to get out of the house at all as Dennis needs me here to take care of him.  Little by little over the last 27 months the person I love with all of my heart is disappearing.  

When I look at the picture above I wonder what happened to those people.  They seem so far away from where we are today.

The Gains

I must admit I have to remind myself to choose to look at the blessings of these past 27 months.  In the midst of this storm we live in day-to-day, the sunshine sometimes seems so far away.

But there is sunshine.  Over and over again we have seen God provide for us.  Whether that has been unexpected financial blessings or the labors of love from friends, we have been blessed.  

Brooklyn has been a spark of joy and life when everything else around us has plummeted.  I cannot imagine life without her.  In spite of all that is going on around her, she loves us deeply and has grown in her faith and love for the Lord.  

My faith has deepened as I have learned to depend on the Lord to meet the needs of our family.  To know that our security is not dependent on the planning I can do but in trusting in God to provide for tomorrow as He has today.  This is not always easy for me.  I want to plan and map it all out to make sure my world is safe and secure.  That is not where I can live anymore.  Frankly, some days it takes all of my faith to keep reminding myself that I am not in control nor should I want to be.

I have been meditating on Philippianss 4:11-13 - 

11 I am not saying this because I am in need, for I have learned to be content whatever the circumstances. 12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13 I can do all this through him who gives me strength.

I am continuing to learn to be content whatever the circumstances may be.  Not because of anything in me but the key is in verse 13 - "I can do all this through him who gives me strength."

Where we are today - 

I miss the things we have lost.  Mostly I miss Dennis as he was then.  I miss his wisdom and leadership.  I miss the "security" in the life we had before.  My heart aches for the Brooklyn to have the daddy who adopted her.  For him to be here now to take her on dates or play with her and for her to have him to guide her through the years ahead.  I miss the security of good incomes and secure jobs.  BUT I know God has a plan in this and that gives me peace.  

Have you ever thought about Psalm 23 - I know many of you know it by memory but it struck me recently that David talks about being in the midst of the darkest valley and then goes on to say that goodness and mercy follow him.  Yes, I can assure you that even in this very dark valley, God's goodness and mercy is with us.  I do have to remind myself of that but He is there with me as I walk through this valley.  

Please remember to pray for us.  Dennis struggles with most everything you and I take for granted.  He needs help with bathing, dressing, getting up and down, walking, talking...it is hard for him.  Pray for me as I navigate taking care of Dennis and Brooklyn.  It is hard to be a mommy sometimes when Dennis has needs in so many areas.  Pray for Brooklyn.  She is in a new school this year and it is just one more layer of stress for her.  We know many of you pray for us on a regular basis.  Thank you.  

Pray for Dennis When...

Today - Pray for Dennis when:
1. You are frustrated with your spouse for leaving their socks on the floor - Dennis can't take his off by himself.
2. When a dirty dish is sitting on the counter instead of in the dishwasher - Dennis can't take his dish to the counter to leave it there.
3. When the toilet seat is left up - Dennis needs help using the bathroom.
4. When you get in the car and it is almost out of gas - Dennis can't drive and use up the gas in the car.
5. When your spouse is hogging the covers - Dennis needs a hospital bed so we can't share a bed anymore.
6. When you just would like a few moments of silence - Dennis has trouble communicating even his basic needs.
7. When you are frustrated at work - Dennis hasn't been able to go to work for over 2 years.
8. When your computer is slow or crashes - Dennis has trouble using even a simple app on a tablet.
9. When you are waiting in line to check out at the store - Dennis does not have the energy to go to the store.
Savor today and all the joys and frustrations they bring. And remember to pray for us along the way.

I had posted this on Facebook a few days ago and decided to share it here as well.  This list could be endless.  Thanks for your prayers. 

Our Daily Life

I'm often asked, "How is Dennis doing?"  "How are you doing?" "How is Brooklyn handing all of this?"  Often when I try to answer more than just a surface answer, "We are doing OK, " the conversation ends with me in tears.  I'll try to answer these questions here as I believe it helps you to pray more specifically and to understand a little better what is happening at this point.

How is Dennis doing?

Dennis has lived with this cancer, GBM for short or glioblastoma, for 27 months.  The average survival rate is 14-16 months.  He is still seizure free which is also very unusual.  

After completing radiation in June, he was extremely exhausted.  Although he has improved some in this area, he has days where he sleeps much of the day.  Some days are better but if he has been busy one day with company or going to therapy or the doctor, he most likely will spend the next day or two sleeping.  

The radiation and medications have impaired his walking.  He walks with a walker around the house and if we are going anywhere, uses a wheelchair.  He moves very slowly.  He has fallen a number of times but we adjusted a number of things to make falls less likely.  He has started physical therapy in the hope of building up his strength.  

His speech is also troubling.  Many times he has a hard time coming up the words he wants to say.  We have seen some small improvements in this area in the last week or so.  He is seeing a speech therapist this week to see if some type of communication system or app could assist him.

His hands are shaky and this makes writing and eating difficult.  We have a visit with occupational therapy this week to address these issues as well.

Dennis' thinking and reasoning abilities fluctuate.  Many times he is very clear and does well but there are times when he really struggles with reasoning.  If he is under any type of stress or tired it is worse.

It is hard.  Dennis struggles with where he is at.  There are times he is very sad but often he will talk about his faith and how it helps him.  

At the moment his tumor is stable so we are focusing on building strength and helping him manage the deficits that he has.  

How are you doing?

So much of that relates to what I have just written about Dennis.  My days are filled with meeting his day-to-day needs.  He needs help with all aspects of his life.  I am so thankful I have the skills to assist him having taught nurses aides these exact skills for over 20 years.

I give him daily shots, administer medications, help him shower, assist him with dressing, help him in the bathroom, prepare his food, cut up his food, help him into and out of chairs...you get the idea.  By the end of the day I am exhausted.

I am working some from home but between doctor and therapy appointments I find it very difficult at times.  Of course I am also the mom of a third grader so that is a whole other level of activities.  Brooklyn brought home a fundraiser - selling magazines - last week and I wanted to cry or run screaming in the other direction.  After thinking it all through I just decided that there was no way I could do this and that was the final decision.  

I'm tired all of the time.  People tell me I need to take time for myself but it is almost impossible or it requires a lot of planning.  Because of the level of care that Dennis requires, I have to find people who can do these things if I am going to be away and not be concerned that his basic needs are not being met.   I am getting better at asking but it still is hard.  

I miss the pre-cancer Dennis so much.  I grieve for all of the simple things that I took for granted.  the other night I woke up and felt him snuggled against me.  It felt so comforting until I realized it was one of our spaniels and Dennis was in the hospital bed next to me, not cuddling with me.  I miss having someone to go to church with or to help me make decisions about big and small things.  This cancer gradually steals away the one you love while still leaving them physically present.  

I know his healing is coming.  Either God will perform a miracle or when he draws his last breath, he will be fully healed and in the presence of his Savior waiting for us to join him.  

How is Brooklyn doing with all of this?

Overall she appears to be doing well.  She has been asking a lot of hard questions recently about why God is allowing this to happen?  Why her life has been so hard? What will happen when Daddy dies?  Will we be safe?  I am so glad she is asking as it gives us a chance to talk about these things and for me to get a glimpse into her concerns about what is going on.  

She started school a few weeks ago at a new school.  She is doing well but I know this has also been one more layer of stress in her life.  She has been having stomach aches and I think they are largely due to all of the stress she lives with.  She is making new friends and doing well academically.

Where are we going from here?

We really do not have a good answer to that question.  We live day-by-day and trust God's direction for the next step as it comes along.  I often find myself seeking out the advice of those around me and appreciate their input as I'm not sure I am always thinking clearly in the midst of the stress and overload I live with.  I have sought the advice of a financial planner and a lawyer and will continue to do so as the needs change.  

Dennis has an MRI in October.  Since this all began in June 2012, we live from MRI to MRI.  Each one has the potential to change the "normal" we are living in at that moment.  Should the next MRI or anyone after it show the tumor is progressing, there are no options for treatment left at this point.  We have not yet used hospice as he would not be eligible for therapy if we entered hospice.  Should the tumor progress, we will enter hospice at that point.  

What can you do?

Please pray for us.  We need that most of all.  Pray for peace when it sometimes feels like our whole world has fallen apart.  Pray for wisdom on so many fronts.  Pray for me as I help Brooklyn process through all of her questions.  Pray for Dennis to gain some strength and communication skills.  Mostly, pray that we remain faithful to God and point those around us to Him.  I can honestly say, I have never known or experienced God's presence and provision in the ways I have since all of this began.  He is faithful even though Dennis has not yet been healed of this cancer.  He has a plan in all of this for each one of us and that plan is good.  I trust Him when it seems too much to just get up in the morning.  He is my hope.

Building the Ramp

Dennis has been having difficulty walking steps and last week on Thursday he could not get back into the house after we had gone out to dinner.  We got him in with the assistance of a neighbor but it was very clear that we had to do something.  A ramp needed to be built and he had an appointment for physical therapy in one week.  I knew he had to go to the appointment and would be very tired when he got home.  I was not sure with that short of a time frame if we could get a ramp constructed in time for his Friday appointment.

I called up our Bible study group leaders and ask if they could help organize the guys in the group to build a ramp.  By the end of that day the plans were in place to build the ramp on Labor Day and all the costs of building it were covered as well.  We were amazed.

We chose to put it in the garage so we would not have to deal with ice and snow on it.

I'll let the pictures speak for themselves.

Brad, Ric and Bill

Attaching the top.

Building in the supports.

Even Brooklyn helped.

Adding the safety lip.

Dennis watching the finishing touches go into place

Finished with the project.

 A huge thanks to Bill, Ric and Brad for their construction work and to the Laura and Sean for their help with organization.

Amazed Again at God's Provision

At this point, Dennis is in essence home bound. Last night when we got home a neighbor had to basically lift him up the two steps into the house. (Please pray the physical therapy he starts on Friday will help give him some leg strength.) 

After talking with Dennis' social worker, we both agreed it was time to put in a ramp. This is beyond my skill set and frankly even coordinating it seemed overwhelming. I called up our small Bible study group leaders and asked if they could help coordinate the group to build Dennis a ramp. By this evening a plan is in place to get this done and not only that, the cost of the supplies for building it are covered as well. Amazing.

Even in the midst of some very hard times, God continues to meet our needs in ways that are beyond what we could even imagine.

Thank you to our High Point Church small group. You are a blessing to us over and over again.

It is a Hard Road

For over two years Dennis has bravely fought stage 4 brain cancer. For most of that time, he has been able to do most of the things he loves. Although he has struggled with fatigue, we have managed to work around that and enjoy time with family and friends. We are so thankful for this precious gift of quality time we have enjoyed.

When we found out the tumor was active in May, our only choice left was another round of radiation. Since then, it has been very hard. Dennis struggles with communicating even some very basic wants and needs. As you can imagine this is very frustrating for him. Radiation has also strongly impaired his ability to walk. He has fallen 4 times in the last several weeks, uses a walker to get around the house and often needs help getting up from chairs. It is so hard to see him like this. For the first time I am seeing him lose his will to fight. I have to admit that I understand where he is coming from. He is tired of being sick and living the way he is.

Please pray for Dennis to get some strength and ability to speak. The doctors think this is possible in the weeks ahead. Pray for me to be able to be the support he needs both physically and emotionally. Also, pray with us about the financial needs that my need to only work part-time in order to help him will create along with the added costs of medical supplies and equipment he needs. Also, please remember Brooklyn in your prayers as she too works through all of this. She loves her daddy and has had such a short time to know the love of a father.

Thank you so much for all of your prayers, love and support through this entire journey. We could not have done it without you and continue to need you. Just knowing you care is such an encouragement to us. I often see Dennis light up when he is visiting with you or reading a note you sent. We love you all.

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.

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.  

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.

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.  

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

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

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.

2 

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.

3 

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.

4 

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.