Some Changes

Changes with Dennis

I haven't written much recently but not because nothing was happening.  I just haven't known how to put into words what we have been observing.  Basically we don't know a lot but have observed some things.

Last week Dennis had a day where he was struggling with finding the right words.  He also was having a hard time using the phone.  After consulting with his doctor, it was decided that Dennis should start a medication for swelling.  He was on this medication after surgery but had been weaned off of it and has done fine without out. Decadron, the medication he is using, is very commonly used in brain cancer and usually helps the person feel much better and have more energy. Along with the decadron, he is on a medication to keep his stomach from being upset because of the decadron.  He also is taking a medication to prevent thrush, a mouth problem that can come from decadron.  Dennis has been on these medications for about a week and he is doing better with words and has not had any problems with tasks.  However, he is extremely fatigued.  He has struggled with fatigue all along but this is different.  Before, he would be ok for a few hours and then need a nap but be refreshed by it.  At this point, he is fatigued all of the time.  This morning when he got up he felt better but within a very short period of time was tired again.  We have emailed his care team and they suggested it could be from the medication he is taking for his stomach and they are looking into another option to see if that helps.

We will not know the cause of these changes until the next MRI which is schedule for April 11.  It could be coming from a number of different things.  It could be swelling happening in his brain which is common with brain cancer.  The fact that the decadron helped leads me to believe that this is at least part of the problem.  It could be that his brain has shifted some due to the tumor or it could be that the tumor is progressing.

How to Pray

Please keep Dennis in your prayer that the fatigue will get better.  The fatigue is discouraging for him as he wants to be able to do things but is so often overwhelmed with fatigue.  Also, pray that his doctor can come up with a simple solution.  And mostly, pray that this is not tumor growth.

We continue to pray for complete healing and restoration.  While at the same time, praying for grace and strength for whatever is ahead of us.  We believe and know that God has a plan in this and will do what is best.  My heart aches as I walk this journey with Dennis but we trust in God's provision, wisdom and blessing along this path.

A Recent Picture

This past weekend Dennis rested up so we could go to a dinner theater to see Mary Poppins with Brooklyn and our friends George and Nancy Petak.  He was very tired but because most of the event required little physical activity, he was able to go.  When we got home he was exhausted.

Doctor's Appointment

What did the doctor say?

Dennis saw his doctor today.  The doctor, after reviewing all of the MRI reports said that what they show is pseudo-progression.  In essence, this is a false progression.  This is what he had expected to see at this point. 


He told us that his observation of Dennis in general was encouraging.  He felt that Dennis was doing better functionally than he was the last time he saw him.  Dennis has also been saying that he feels like his walking is better recently but this confirmation of that from the doctor was encouraging.


Dennis will continue on the current treatment until mid-April when they will do another MRI. 

What's happening now?

We don't have a lot planned right now other than the normal day-to-day things.  Like everyone, we can't wait for this winter to end.


On Saturday, our small group from church was at the house and helped us with a couple of projects.  The men installed railings for the steps from the garage into the house, installed a new water softener and fixed our kitchen light.  The ladies helped me organize Brooklyn's toys.  We loved the fellowship and time with these precious friends. 

What should we pray for?

• Pray that this treatment continues to work.
• Pray for Dennis' walking and balance that it continues to improve.
• Pray for peace and encouragement on an on-going basis for each of us.

The Doctor Called

I don't have a lot of details at this point but the doctor told Dennis that what he is seeing is most likely pseudo-progression.  (See previous blog for details on that.)  In short, this is what we were hoping we would hear.  He will see the doctor on Monday and get more information but will be proceeding with the current treatment.  We will update this blog more after we have seen the doctor.

We are thankful for this report as it is the best case scenario at this point.  Please keep praying.

Delays

Dennis had an MRI last week but unfortunately the specific type of MRI the doctor needed was not done and they will have to repeat the MRI this week on Thursday. 

What We Know

The MRI that was done last week shows some change.

What We Don’t Know

Because the correct MRI was not done, we don’t know what these changes are.  There are three possible situations:

1. The tumor is growing – if this is the case, it would most likely mean the current treatment is not working.
2. The tumor is about the same but the last MRI was not accurate – this is a possibility because the medication Dennis was on at that point worked by starving the blood supply to the tumor.  Therefore, the contrast they put into his blood to do the MRI would not have reached parts of the tumor and it would not have shown up well on the MRI.
3. There is pseudoprogression – this is a common occurrence with the current treatment.  It makes it look like the disease is progressing when it is not. 

The new MRI should enable the doctor to sort out what is happening.  We are praying it is pseudoprogression. 

Now What?

Dennis has the new MRI on Thursday morning.  We may hear as early as Thursday what the results are or it may be Friday.  We will see the doctor on Monday.  If he determines this is pseudoprogression, Dennis will most likely continue the current treatment.  If it is tumor growth, we will need to discuss other options.  With each treatment that fails, our options moving forward are fewer. 

Prayer Requests

Pray for a good report from the new MRI. 

Pray for peace as we wait.

A New Year

Dennis News

Not much to report really.  Dennis has started Physical Therapy to help with some of the weakness he has on his right side.  It affects the way he walks and impacts things like being able to get up easily.  He says the things the PT person has shown him are helping.  What is strange is that some days are more challenging than others and there is no way to predict what impacts that.

Dennis is doing OK with this new treatment.  It is not fun lugging around the device that weighs about 12 lbs. if he has two batteries with him and just having it on all the time can be very discouraging.  I’ve gotten pretty good at changing the arrays/electrodes that are part of Dennis’ current therapy.  A friend of ours has also learned how to do them in case I need to be away. We need to do this about every three days.  The company downloads data once a month that lets them know how much he is using the device.  The goal is a minimum of 18 hours a day.  Dennis’s first report was a 92% compliance rate.  This is exceptional.  When his doctor’s office got the report, the nurse actually called Dennis to congratulate him.  Most people don’t hit those kinds of numbers but unless he is in the shower, Dennis keeps it going.  You never know when a cell is going to divide so the more you have it on, the more likely it is to destroy a dividing cell.  They have told us that the MRI at the end of the month will not tell us a lot.  In fact, the first one after starting this treatment often shows pseudo-progression. 

Ellen’s Thoughts

Maybe because it is the first of the year, I find myself thinking back over the previous year, or maybe it is hearing Brooklyn pray each night and say, “Thank you Jesus that Daddy is still with us,” but recently, I have been thinking about where we were two years ago and how very different life is for us now.  My heart just yearns for life as it was then or at least how it was in those first few months of family life with Brooklyn before CANCER.

January 2012  - We were eagerly, and not so patiently, waiting for the final piece of paper from China that would allow us to travel and go complete Brooklyn’s adoption.  We were excited and fearful at the same time.  We knew our life was about to change in dramatic ways.  At the same time, we were busy with the day-to-days of life – work, church, social events – just a normal life.  Looking back, it was a good time.  It seemed like we would never get to China but learned and grew during those months waiting for Brooklyn.  I learned a lot about waiting on God’s timing and trusting Him.  Little did I know that this was part of the preparation God was putting me through in order to be ready for what was ahead.

March 2012 – She was finally ours!  After a year of waiting and doing mounds of paperwork, she was our daughter.  We loved this time.  We have such fond memories of those early days as a family.  Our time in China went so quickly.  As we look back now at the pictures of those early days, it is fun to hear Brooklyn tell us about what she was thinking and feeling during those days.  When we got home, our lives were so different as a family of three than they were as a family of two.  Our days were filled with little girl giggles, exploring parks, learning to communicate with each other, kindergarten…  One of my favorite parts of the day was when Dennis would get home from work and he and Brooklyn would be playing together.  Oh, the joy and giggles from a little girl who finally had a daddy!  It was a good time.

June 8, 2012 – And then one word – CANCER – changed everything.  I hate that word.  It has affected us in so many ways.  Dennis has not driven since this word entered our lives.  He hasn’t been able to work.  It saps his strength.  It puts a huge question mark over every aspect of our future.  Brooklyn doesn’t have the daddy who can pick her up and carry her to bed on his shoulders.  She thanks God that Daddy is still here.  She asks questions about what will happen to her if daddy dies – wondering if she will be sent back to China.  I find myself stretched to my limit as I attempt to be a wife, mother, employee, care coordinator, family driver…

Yes, CANCER changes everything.  It is teaching us to cherish each day.  I know I say that a lot and frankly, forget about it in the day-to-day of just getting by, but it is so true.  We have today and can either enjoy it or waste it.  I’ll admit that some days I am too exhausted and too stretched to slow down, be patient, concentrate on what is happening at the moment and enjoy; to take the time to play a game of hide and seek, to just talk with Dennis and share time with him, or just relax.  Often I need to force myself to let go of all the stress and responsibilities and try to relax and be the wife and mom I want to be.  To cherish the time I have with Dennis and the time I have with an eight year old who I know will not be a “little girl” much longer.

CANCER teaches us that today is not all there is…much more awaits and this is just the preparation.  Dennis and I have both been reading Heaven and it has helped me to see more clearly that our lives here are just one small part of our existence.  What awaits us is far greater.  Today prepares us for eternity.  This preparation right now is hard.  If I could turn back the clock and live in the time before CANCER, I most certainly would but at the same time, that would mean I would miss out on all that God has done in my heart during this time.  He has taught me so much about trusting Him in the long-term but also trusting Him when just making it through the next five minutes seems impossible.  He continues to teach me to wait.  I’m not great at this but I’m learning.  Each new turn in this journey is a waiting game.  We wait to hear results of MRIs, we wait to see if a current treatment is working, we wait to see if symptoms come or go and mostly we wait to see if Dennis will get a miracle and beat this awful cancer.  I’m learning to let go.  I can’t fix this.  That has been the hardest for me.  I want to do something – anything – to just make this better.  I can’t.  It is not in my hands.  But I can trust the One who holds this all in His loving hands. 

CANCER also teaches us that our friends are loving, caring, generous and unselfish people who over and over again give of themselves.  We always have been blessed with friends to spend our lives with but the depth of those friendships have been manifest in the last 18 months.  On so many occasions they have come along side of us to help when we did not think we could do one more thing.  We are indeed blessed. 

Yes, CANCER changes everything and yes, I wish it had never happened but without it, we would never have seen God work in our hearts and lives in the way that we have during this season of life.

2014

What 2014 holds in store for us is unknown as it is for everyone.  As I write this, I can’t help but wonder about what lies ahead but I can honestly say that I know God has already planned it and will walk with us no matter what it holds.  We have seen His provision in the past and trust Him for the future. 

Prayer Requests:

Dennis has an MRI on January 31.  Pray for our peace as we head toward this date.  We both find the days leading up to these too be very stressful.

Pray for Dennis walking and balance issues as well as his overall stamina.

Pray for me to focus on what is most important and to slow down, be patient and enjoy our time together as a family. 

What's Up???

Dennis' New Treatment

Dennis started the new NovaCure treatment on December 2.  We are still trying to getting used to the logistics of carrying around batteries and planning for how long we can be gone before he runs out of power.  Dennis is finding that even when he is home it is easier to run off of the batteries instead of plugging into the wall unless he knows he will be in one place for an extended period of time, like at night when he sleeps.  At least when he is on batteries, he does not need to shut everything off and unplug before he can move.  I’m learning how to change the electrodes and I’m feeling pretty comfortable with it.  I am actually teaching a friend how to do it also in case I am not available when he needs a change or as Dennis says, “In case you are not in mood where I want you to do it.”  This treatment is not easy in that it is cumbersome and so visible.  On the positive side, there are no side effects with it.    He will have an MRI at the end of January but the doctor told us that the first MRI on this treatment often shows pseudo progression so it is not a good indicator of if the treatment is being affective.  We continue to pray for complete healing and restoration. 
 

Beating the Odds

It has been 18 months since Dennis was first diagnosed.  If you have done any reading on GBM, you know that he has already beaten the odds.  We are grateful for this and trust he will blow the statistics out of the water!  In those 18 months we have struggled, grieved, rejoiced, celebrated…LIVED!  We remind ourselves often that if we dwell too much on what the future may hold, we miss out on what the present is giving us.

A Look Back

As I look back over these 18 months, there are so many things for which we can rejoice and be thankful:

• Dennis has never had a seizure with this.
• Dennis has struggled with fatigue (which at some points has been pretty overwhelming), word finding and has recently had some balance issues but overall he has done well following major brain surgery.
• Our insurance continues to cover the costs of his very expensive medical bills.
• We are blessed with a large group of friends who have used their individual gifts and talents to help us over and over again.
• Our financial needs have been met, sometimes in unforeseen ways, during all of this.
• Brooklyn has flourished in our family despite all of the stress of dealing with a very serious illness.

And those are just the highlights.  I won’t bore you with all of the details but most of them are in earlier posts in this blog if you want to go back for a review. 

 

On the Home Front

 

On a bit of a sad note, we said good-bye to our golden retriever, Abby, on Monday.  She would have been 15 in February.  Abby came into my life before I met Dennis and has been a wonderful part of our family for all of these years.  Her sweet temperament will be missed in our house. 

Have a Great Christmas

I trust you all will have a wonderful holiday season.  We will celebrate our Saviors birth with both sides of our family.  We hope you also have the opportunity to spend time with your families in the weeks ahead. 

Attempting Normal

I’m beginning to believe that “normal” is highly overrated.  For the most part, as long as life is “normal” we don’t even think about it but once “normal” has been disrupted, it invades our core being.  We ask questions like, “Will life ever be “normal” again?” 

Frankly, life is never “normal.”  There may be patterns to life that makes us feel like all is “normal” but in essence, each day or season of life is diverse and by its diversity, makes our lives a beautiful tapestry rather than a monotone existence.

Some times are full of the vibrant colors of life – new children, major goals that are accomplished – and others are shades of gray or even black – illness, sorrow.  We are living in one of those gray areas of life.  Yes, there are smatterings of color along the way that brighten this time and help carry us along. 

As we approach Thanksgiving, it is important to look back at all those bright spots along the way that keep us going even when life is far from “normal.”

• Friends who continue to pray for us.
• Emails, cards and calls that come our way, often just at a time when we need someone to help carry us through the day.
• Old friends that have celebrated with us the exciting times in our lives – marriage, Brooklyn’s arrival – and new friends who have only known us during this difficult time of Dennis’ illness but have opened their hearts to us.
• Meals, rides, project help, packages, visits…So many ways people have encouraged us and so often they have come at times when we were at the end of our strength but had not even shared our needs but God placed us on their hearts.
• Help with Brooklyn after school, during Dennis’ appointments or just to give her a break.
• Medical staff who could see just one more person with cancer but instead, know Dennis as a person and show compassion.

Yes, we attempt “normal.”  In a few days, we will host our “normal” Thanksgiving gathering.  We will be surrounded by friends and family, enjoy a typical Thanksgiving meal, watch some football and enjoy some good conversations but under all of it is a current of "not-quite-normal.”  But in this "not-quite-normal” time, we have been blessed in ways we never would have experienced otherwise. 

So as we approach this holiday, we are thankful for so many blessings God has given us. As we move into yet another season of this cancer journey, although we enter it with much foreboding and dread, we know God is walking through this with us and will have many vibrant colors to brighten this path as well.

May you all have a wonderful Thanksgiving.

Prayer requests:

• Dennis’ new treatment starts on Monday, Dec. 2.  Please pray for him during this time. 
• We are in the process of insurance approvals for this new treatment.  Please pray for their approval.