Saturday, September 13, 2014

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.

Tuesday, September 2, 2014

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.

Saturday, August 30, 2014

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.


Wednesday, August 27, 2014

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.

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.