June 29, 2017: Day +220

We had a busy day today.  I rushed home from work this afternoon to pick-up Doug and Trixi to go to Boise to see our friend Joanne, who is recovering from paralysis that she acquired after an injury during her rehabilitation after surgery.  We have been friends with Joanne and her family for many years.  How odd it is to now journey together with Joanne while she is recovering from paralysis with Doug having gone through this for the past 6 months. Twenty years ago when we met none of us ever dreamt that we would be going through any of this.   Yet here we are and most people would not handle it as graciously as Doug and Joanne are handling it.  They bless all of us with their strength.

Because we cannot leave Trixie alone, she went with us and my sister took her for a walk while we were in the hospital.  After our visit with Joanne we met friends Sherry, Will, Ingrid and Jerry for dinner.  We ate outside so that Trixie could be with us.  It was so nice to be able to have dinner out and to have Trixie with us.  After a long recovery time for Doug, you really appreciate little things like eating out.

We still don't know if we will be able to arrange for Doug to get the Retuximab treatments.  Before writing the blog tonight, I started searching for flights and hotels in Puebla.  It is beginning to look like we may be returning.  Please pray with us, that we find treatment locally.

God of Mercy,  traveling to Puebla will be difficult for Doug and expensive.  We pray that Doug will be able to get the treatment he needs here.  We pray his doctors hearts will be soften and that they will do there own research and listen to our pleas. Give us strength and hope in the days to come as we search for the Retuximab treatment. And we lift up Joanne and pray that she recovers and will walk again. Amen

June 28, 2017: Day +218

Today Doug's doctor called him.  She had talked to the hematologist.  The hematologist is asking to talk to a neruologist that can attest to the benefit of the retuximab infustions after HSCT.  Our hematologist is not willing to do this.  And so I just posted to an HSCT group on FB to see if someone has a neurologist who would be willing to talk to our hematologist.  If anyone reading this blog has a neurologist who would be willing to talk to him I would really appreciate hearing from you.

It seems a little crazy to me that the hematoligist will not just contact Dr. Ruiz so that Dr. Ruiz can share the research he has done and the reasons for the retuximab infusions. There is some research on the internet that shows the effectiveness in clinical trials that are being run and George Goss, a well informed person who has been through HSCT for his own MS has sent me a link from the University of Massechusetts speaking in favor of using Retuximab for MS.  I wish all of this was not so difficult.  It seems like everyday there is another mountain to climb.

Please join us in prayer:

God of Strength,  be with us as we try to scale this next mountain.  Help us to find the resources we need to convince our hematologist that the retuximab infusions are safe, necessary and helpful. Strengthen our resolve to see this through. Shed light on our path, help us to discern our next steps. In your name we ask it.  Amen

June 27, 2017: Day +218

Rest after a busy day.

We received some good news today.  Doug's echocardiogram came back normal for his age.  While that does not sound amazing, it is great news.  It is a good sign that there was not any real damage that was done when Doug had the heart attack last December when he was in respiratory distress.  It also means that there may be a time when Doug can  reduce the medication he is taking for heart rate control.  His primary care doctor thinks that his higher heart rate may actually have been caused by the drug interaction from his blood pressure and heart rate medication.

Today's news was one more sign of Doug's continuing journey to wellness.  We continue to pray that his doctor will write the prescription for the Retuximab and that he can get the infusions here in Nampa.

Today we took Trixie to the dog park and then to the pet store to get  a new bed to replace the bed she ate the last time we left her in her crate and to get her some new toys.  She likes toys, especially ones that she can throw around herself and catch.  She now has a new purple rhino.  Trixie is a bundle of healing.  We receive so much joy from her as we play with her and care for her. Each day when I am gone to work, Doug let's her sit in his chair right next to him.  She is sweet company.
And so we pray:

God the Playful Presence in our lives and ever present to us in times of worry and concern, we give thanks for Doug's heart beating strong and healthy.  We give thanks for the joy we feel in sharing new experiences with Trixie and seeing her delight.  We ask that Doug's doctors will find their way to prescribe and provide Doug the Retuximab treatments he needs.  And we pray for all who seeking healing, may their paths be made clear and may they find the healing they seek.  Amen

June 26, 2017: Day +217

Doug enjoying Cascade, Idaho

The only therapy Doug is getting right now is PT three days a week for 45 minutes a day.  Doug is not really enthusiastic about wanting to practice the exercises on his own.  Will, our friend is going to start working with Doug a couple of days a week again now that his wife Sherry is nearly recoverred from hip replacement surgery.  Hopefully this will be a little more incentive for Doug to do this hard work. Physical activity really wears him out.  We pray that Doug will begin to see how the hard work pays off since it is really hard for him to see his own progress  because the progress feels very slow.

Doug use to love the outdoors.  He hunted, fished, hiked, skied, etc... He loved the mountains. He still loves being in the mountains. But he misses all the things he use to do.   Our prayer is that he will get back the ability to be able to get outside and do some of the things he use to enjoy and that the fatique will leave him so that he can enjoy more.

Looking at the reflection of the beauty all around us
in the water.

We pray for all who suffer from MS and other deabilititating diseases:

God of Healing and Strength, we pray your healing power and strength on all who suffer in body, mind and spirit. Refresh all who feel burdened and encourage all caregivers. Give us hope in our struggles and delight in our accomplishments.  Open our eyes to see your presense and healing power all around us. In  your name we ask it.  Amen

Looking across the river near our cottage in Cascade

June 25, 2017: Day +216

We just spent two restful days in our Cascade Cottage, sitting on the deck, strolling on the river, reading and most of all relaxing.  It really was nice.  Doug is more independent than he was over Memorial Day weekend.  He is now able to transfer independently for the most part.  He was able to get in and out of bed by himself with transfering to the wheelchair.  At home he has a bed cane to pull on and the head of the bed will raise.  He did not have any of these supports and he was still able to be independent.  Of course every thing that Doug can do on his own, makes things much easier for me.

We both enjoyed introducing Trixie to Cascade.  She loved it.  She ran and played on the river.  She made a new golden retriever friend and she watched her as she fetched her ball in the river.  She tried a couple times, surprised by the water each time and jumping out and loping like a deer at lightening speed filled with joy and exhuberant in her lastest adventure.  So fun.

Best of all, I opened an email from Doug's primary care doctor on Friday night.  She said that she is going to look into prescribing the Retuximab for Doug.  She said she would like to contact Dr. Ruiz in Mexico and the hematologist we saw last week in Nampa.  And so Saturday night I emailed Dr. Ruiz to see if he would be willing to consult with our doctor.  I had an email early this morning from him telling us he would be more than happy to consult with her.  I am so relieved and pray that this will all work out so that Doug can get these treatments here. It will top off the treatments he got in Mexico and increase the chance of the MS not progressing.

God of Re-creation, we give thanks and praise for times of renewal and rest.  We feel so blessed to have a place and time to enjoy the beauty of creation and smell of pine trees and fresh mountain air. We are thankful for the playfulness of Trixie and the joy that she gives us.  We feel strengthen and encouraged in seeing Doug's continued improvement and we are filled with hope, at the possibility of Doug getting the Retuximab infusions to stop the progression of his MS forever.  We are grateful for two caring doctors that have entered our lives and walked with us on the journey to wellness and healing. We are grateful pilgrims as we take each new step toward our destination of healing and wholenss. Amen

June 22, 2017: Day +213

We have been going through electronics this spring.  Seems like we are flipping everything in our lives.  Doug and I both are people who have always enjoyed change and innovation, but these past 6 months it has been a bit much. While trying to deal with all of the different medical facilities, doctors, therapist and all of Doug's limitations we have also been changing up our electronics.  In March I got Doug an IPAD so that he could use it to read and listen to books and magazines as well as look at emails. Then when we got home in April our printer died and so we had to get a new printer.  After getting the printer set-up we discovered it would not work with our computer because our computer was too old and so we had to get another computer.  Yesterday, my phone decided to crash.  Once the battery died I could not get the battery to charge again.  I went to Verizon today, and the guy told me that probably went I updated my operating system, it caused the phone to crash.  And  so today, I had to get another phone.  OK...that should take care of all electronics, but I almost hate to say that.

Doug went with me to the Dog Park this afternoon.  This is the first time he has wanted to go with me to the Dog Park in years.  We took Trixie to run and play with the other dogs and to play in the water.  She had a wonderful time and it was great for Doug to get outside for an hour and enjoy watching Trixie and the other dogs.

Tomorrow we are going to Cascade for the weekend.  We will have our second weekend away.  We are excited to take Trixie to Cascade.  She will love it.  And we are excited to have a weekend away to rest and refresh.  Doug is less anxious then the last time we went.  This time he seems to feel a little more confident.  We may not have much of a connection to upload a blog and so I may not post until Sunday.

And so we pray:

God of Refreshment, we give you thanks for beautiful summer days and time to enjoy the outdoors. We give thanks that Doug is more and more feeling like getting out and regaining some of his life.  Be with us as we travel, and we pray and hope that Doug will feel confident in different surroundings and at the end of the weekend return refreshed and filled with hope for continued improvement.  Amen

June 21, 2017: Day +212

Today we celebrated our anniversary with our friends Harry and Cory.  It was another milestone for us.  Not only are we grateful to be celebrating another anniversary it was the first time we have been out to dinner since early November before Doug had his stem cell transplant.  We have not been able to go out at night because of Doug's evening routines before bedtime and often he gets pretty tired at night. And so going out for dinner was a real treat and having an evening with wonderful friends made it even better.

It seems funny that we are still reaching milestones.  But as I think about it there are still many things that are not back to normal or baseline for Doug yet.  And so the journey continues.  Step by step, day by day, we are grateful for the continued progress.   Thank you everyone for your continued encouragement.

And so we pray:

God of Blessing, we are so grateful to celebrate another anniversary. We are grateful for good friends to share life's journey. And we feel so blessed to have the encouragement and support of good friends. Be with us now and strengthen Doug to continue to work hard to walk again.  Be with me, and help me to help Doug move through his weariness and fears and help him to envision walking again.  We pray that we can do the work needed to be done for Doug to walk again. Amen

June 20, 2017: Day +211

Doug's PT Kerry told us that she wants Doug to be doing more.  She wants him to get up and get more activity.  Doug is worried.  While he is moving a lot more more and gaining some independence, movement is still very hard for him. It takes a lot out of him and it is hard work. Sometimes he just does not want to work that hard.  The electric wheelchair has really become his friend because it gives him so much independence.  Now having to move on his own, his fear of falling and the concentration and strength it reguires can be overwhelming for him.  He is not sure he can move as much as Kerry wants him to.

And so we have set some new goals.  Doug will use the electric wheelchair while I am gone.  When I am home I will help him walk from place to place or he can use his manual wheelchair.  In the evening when he is most tired he can go back to the electric wheelchair.  Then in a couple weeks we will see if we can take the electric wheelchair away at night.  And finally, by the first of August our goal will be to have Doug walking with the walker.

We did not get his results from the echocardiogram or any word yet on the Retuximab infusions. And so we continue to pray for good news.

God of Ordinary Times, we pray day by day,  Doug will have the strength and courage to continue to practice each day, to push through the fears and the amount of work required of him to regain his ability to walk. And we pray that Doug's heart is getting stronger like all the muscles of his body.  And we pray that his doctor will prescribe the Retuximab, so  that we can put a stop to his MS forever.  Amen

June 19,, 2017: Day +209

Doug had an appointment for his electrocardiogram this afternoon.  We thought our appointment had been scheduled for St. Alphonse's just down the road from us.  When we arrived we learned that the appointment was actually for the new St. Alphonse's that just opened today.  Today the new hospital in Nampa opened and apparently that meant that there were scheduling errors.  It would not have been that bad, except that it was 95 degrees outside and getting in and out of the van with Doug and wheelchair is kinda a big deal and with the appointment late in the afternoon and the heat he was  pretty tired by the time we made it to the new hospital for the appointment at around 4:00.

The good news is that when they took him into the examination room he was able to stand from his wheelchair and sit-down on the examination bed by himself.  He has not been able to do that in months and months.

On the way into the hospital a woman entered just behind us.  I had to take a second look at her.  It turns out that she was the first speech therapist that Doug had at St. Alphonse's after they took the breathing tube out.  At that time he was having swallowing problems.  Also his speech was not completely clear.  This was  due to the paralysis and swelling in his throat because of the tube being in his throat for 10 days.   After a minute she did recognize Doug.  It was kind of a funny reunion and a big reminder of how far he has come since then.

We probably won't know the results of the echocardiogram for a couple days.  We hope they will be able to discover the reason for his heart rate being high and we hope it is nothing serious.

And so we pray:

Healing God, we pray that Doug's echocardiogram will come back to normal and that his heart will be restored to a normal heart rate. We also pray that Doug continues to get stronger and that he grows in his own confidence in his walking.  Be also with our friends Joanne and Sherry as they work towards walking again.  We pray for healing and peace for all that are scared or suffering this night. May they awaken in the morning restored and refreshed and prepared to meet another day.  Amen

June18, 2017:Day +209

What a wonderful day to celebrate Fathers.  Fathers play such an important role in our lives and I am glad that we have some time to step back and give thanks each year.  Doug was a really good dad today.  I had to serve at church and Doug stayed home with Trixie so that she would not be afraid.  He said, "I just want her to be ok."

Trixie

After church, I hurried home.  His Father's Day present included picking up some Payday candy bars for him on the way home, cleaning the aquarium, and preparing dinner for him, my son-in-law Tom and our family.  I also made a chocolate fudge cake, my Dad's favorite.  We enjoyed the afternoon, eating and visiting.   

Grandson Cole, taking a family picture with the selfie stick

Tom's dad got out of the hospital today after having surgery for gallstones.  His birthday was yesterday.  I am not sure that this is the way you want to celebrate Father's Day or your birthday, but we are grateful that he is recovering well and able to come home.  We were sad they were not able to join us for this celebration.

And so we pray.

God and Father of us all, we give thanks for your continued care for each of us and your presence in our lives.  We give thanks for the image you have given us as father, loving parent and teacher.  We give thanks for all the fathers who loving look after their children, teaching and guiding them. And we give thanks to the men who are willing to step-up and be fathers and grandfathers to children  who don't have father's in their lives.
Holy God, be with Doug in the week to come.  Tomorrow he will go for an electrocardiogram.  We pray that the results will show that his heart is strong and undamaged from the heart attack he had last winter.  In  your name we ask it.  Amen

Foster son Jordan giving Tom the Father's Day present he made for him.

June 17, 2017: Day +208

  Since we are justified by faith, we have peace with God through our Lord Jesus Christ...and we boast in our hope...but we also boast in our sufferings...[that] produces endurance...and character produces hope, and hope does not disappoint us, because God's love has been poured into our hearts through the Holy Spirit... [Romans 5:1-6]

Tonight I was studying the scriptures that will be read in church tomorrow as I was preparing to write the Prayers of the People for the service in the morning.  The passage from  Romans gave me some pause, as I thought about the past months and thinking about the months to come.  "We boast with hope" made me think how much hope we have had to have to believe that Doug would recover.  Everything the doctors told me was so uncertain.  I don't know if I refused to believe them or that I was just given the gift of faith and hope.  I felt certain Doug would recover and I still do.  I don't know exactly what it looks like to boast in our faith, but I wonder if it is like being certain in our faith.

The second part of the passage gives us even more to think about: "But we also boast in our sufferings...(that) produces endurance...and character produces hope, and hope does not disappoint us".  I guess we all wonder at one time or another why we suffer.  Some people have more suffering in their lives than others.  The benefit of believing in God, and trusting in the goodness of God, is knowing that in our suffering we are never alone.  Through hope and faith we are given what we need to continue. We build our endurance day by day as God's love is poured into our heart.  We learn we can endure.

These past few weeks we have had a number of friends who have been sick or had surgery.  These friends have had so much to endure in their suffering.  We pray for all of them and for us.  May we all experience the peace that comes from God, as live in faith. And may we all continue to grow in character so that our endurance is strengthen and our hope be sustained.  Amen

June 15, 2017: Day 206

Early this morning I emailed Dr. Ruiz in Mexico to see if he still recommended that Doug receive the Retuximab treatments since it has been almost 7 months since Doug had the stem cell transplant. Dr. Ruiz is an internationally known hematologist and researcher.  He amazed me when he gave me his personal cell phone number and email address when Doug was so sick last winter.  And he amazed me again today when he returned my email within hours of me sending it.  His response was that he thought that Doug should get the treatment.

Today as we were leaving for the doctor we were not sure what to do with Trixie.  We have not left her alone at all.  She gets so upset when I have to leave her. Gratefully Doug has been home with her.  We decided we would leave her in the house with special treats and the TV on.  At the doctor's office we had completed the new patient paperwork and been waiting about 45 minutes when our neighbor Karen called and told us that Trixie was out.  She apparently had gone out through her doggy door and gotten under the fence and was out looking for us. Thank heaven for Karen for noticing.  She was able to get Trixie to get into her van that looks just like ours and then bring Trixie into our house and put her in her crate.  I guess that we should we have left her in the crate to begin with.  This is the live and learn part. Meanwhile I had left Doug at the doctor and came home to help, but Karen had everything taken care of by the time I got home.  Whew!!!!

Back at the doctor, when I arrived Doug was already with the doctor.  Long story short, is that  sthe doctor said he would be glad to do the infusion if Doug's neurologist would prescibe it for MS.  The bad news is that Doug's neurologist said he would not prescribe Retuximab last fall because it was not FDA approved for this purpose in the US yet, even though Retuximab has been used for MS for many years as a treatment for MS. And so we are left with not knowing what to do.  I am going to contact his primary care doctor tomorrow to see if she will prescribe it.  She has been very supportive so far.   I will also contact my daughter-in-law Corinne to see what she recommends.  We are so disappointed this was not easier.

Good news, bad news, we have Trixie and we don't have a solution to Retuximab problem.  And so we pray:

God of Hope and Healing, guide our thoughts and actions as we continue to move toward complete healing for Doug.  Help us to not become discouraged or overwhelmed as we continue to climb this hill to healing.  Give us wisdom to know what the best actions for us to take in the days ahead.  Open the minds and hearts of our doctors so that they may see  and value the expertise of others who work outside of the US.  In your name we ask it.  Amen.

June 14, 2017: Day +205

Tomorrow is an important day for us.  Doug will have a first appointment with a hematologist to see about having infusions of Rituximab.  These infusions should have started for Doug last January however because he was in the hospital and so sick, Dr. Ruiz from Mexico recommended waiting until Doug was well.  I started again trying to find a hematologist in Apil.  It has taken 2 months to get an appointment.  Our worry is that the Dr. won't prescribe the medication.

Retuximab is a chemotherapy drug used to reduce or eliminate the T and B cells that may still carry the memory for MS that cross the blood-brain barrier. That is the lay person version.  I want Doug to have the best chance of beating MS.  He has been through a lot to make that happen, and I would hate to have him come this far and not get the treatment.

Why am I worried?  Many, many, hematologists won't provide the treatment because the treatment is still experimental.  Often it is not covered by insurance.  We have friends who are getting it covered in the States, but it is hit and miss on who will do it.  Some have to travel quite a distance to get the infusions and some have decided to travel back to Mexico.  The cost of traveling back to Mexico is about $2000.  If we can get it here we understand that Medicare is covering the cost.  It would be so much easier and cheaper to be able to get the treatment here.

Please pray that tomorrow is successful, that this doctor will be willing to do the infusions.

Holy Spirit, Breath of God, send your life giving Spirit to us.  Open the heart and mind of Doug's doctor. Help him to see the possibility of healing and to look at the science and the work of Dr. Ruiz. Help Doug and I to explain the treatment in a way that is worthy of the treatment.  In your name we ask it.  Amen

June 13, 2017 Day +204

Trixie has been with us 4 days now.  The last 2 days she has had to tolerate me going to work.  She has not been happy about that at all.  On Monday she barked for about a hour after I left.  Today though, we had her favorite treat for Doug to slowly feed her just as I left and  she quieted down much  more quickly.  Hopefully we have a strategy to get us through the next few days.

When I come home she goes crazy.  She is so excited.  I told Doug that she definitely does not have an attachment disorder.  She has become completely attached.  I am covered in doggy kisses interspersed with barking, yipping and lunging at me.  Too sweet.

While I am gone, she and Doug have been bonding.  Doug, who never lets animals on the furniture, has allowed her to sit next to him in his recliner, while he sits in his wheelchair and let's her sleep on his side of the bed.  He calls her sweetie.  You think he is a little smitten with her?   She is loved.

And so we pray:

God of Playfulness and Happiness, we give thanks for the joy and pleasure that pets bring into our lives.  We give thanks for the unconditional love and sweetness given to us by the  newest member of our family.  We give thanks for new beginnings.  On this journey of life it is wonderful to be joined on the way by new companions that delight and surprise us.  Amen

June 12, 2017: Day +203

Today Doug's PT asked if she could come to do therapy with Doug while I was home so that she could train me to walk with Doug.  I was glad to do this because there were some questions that I had.  She said that with my help Doug can begin walking between rooms with the walker and can transfer between chairs with me there.  He is almost to the point of being able to transfer chairs on his own.  She told us that she had set her goals for Doug to be able to walk around the house with the walker independently by the first of August.  This is all very exciting.  Finally by the first of August Doug may be back to where he was when we left for Mexico.  Hopefully then he will continue to improve more.

I told Doug a few months ago that I thought he had shrunk because when he was standing with his walker he was shorter than me. Well, today while he was walking with me, he was able to stand just a little taller than me.  He is really standing up straight with the walker and his posture is very good.  He has gotten so much stronger.

It was a good day.  And so we pray.

God  of Promise, sitting here tonight, I am reminded of how much we have to be grateful for. Thinking back to those early days when Doug was paralyzed, the future seemed very uncertain and now here we are today so close to Doug walking again.  He kept telling people that he only wanted to walk again.  Tonight I am reminded me of the words from Psalm 23, "Surely your goodness and mercy will follow me all the days of my life and I will dwell in the house of the Lord forever."  We have found our place in your home, and your mercy and goodness dwells with us and we give thanks. Amen

June 11, 2017: Day 202

We are still adjusting with Trixie.  Poor little thing she does not want to leave me for a second.  She does wonderfully so long as she is with me.  No one else will substitue right now. She has been through a lot of change and so that feeds her separation anxiety.

We were worried about leaving her today while we went to church, since we have a least a 30 minute drive to and another 30 minute drive home from church. We expected to be gone at least 3 hours.  And so we decided to take her with us and then if she was too upset I would go out and be with her.  Well sure enough she had a fit, the minute I shut the door to the car and kept it up for 15 minutes. After putting up quite a fuss and calling attention to herself (you could hear her in the church) I went out and took her for a long walk, then my sister came out so that I could participate in communion and then we left right after church.  Thanks to everyone at St. Stephen's who were patient and helpful with her!

We went to breakfast after church where we could sit outside and she was so good.  Like I said,  if she is right next to me she is great.  We sat outside and enjoyed the sunshine with near perfect temperatures. Doug enjoyed the buffet breakfast and shared a little of his bacon with Trixie.

We came home to have a Sunday afternoon nap with Trixie all curled up on the bed and happy as a clam.

And so we pray:

God of Wisdom, be with us as we adjust to Trixie and help her to feel safe and confident in her new home and new life.  Be with Doug and Trixie, and strengthen her attachment to Doug so that they will find support and joy in each other when I am at work.  We thank you for the gift of this sweet dog, so filled with life and love.  Amen

June 10, 2017: Day +201

It was a busy day today.  First the good news, for us, is that Trixie slept through the entire night in her crate right next to the bed.  She woke up around 8:00 and was excited to get out of her crate, jump on the bed and delighted to be with Doug and I. We made breakfast and did some work around the house with her never leaving my side.

Then we met my sister at the Flying M coffee shop where we could sit outside.  Trixie did really well until someone else walked their dog through the parking lot.  I had gotten overly confident and had my hand barely holding the leash.  She took off like a flash to see the dog and and I took out after her.  The poor woman and dog, were a little freaked, but then Trixie was more freaked when the dog turned around and barked at her!  We had our first weimaraner moment.

Then Doug went home for a rest and I met my sister for a walk on the greenbelt.  Trixie was in seventh heaven with all the grasses, birds and ducks. She was bouncing around in the grasses and smelling everything.  She was all out hunting dog:  pointing, searching, lunging and forgetting she was taught how to heal!

Then I went and picked up Doug and we went to see Angie and Tom and the kids and the house they are remodeling.  We wanted to introduce them to Trixie.  It was great to see all the work they had done on the house.  Doug and I walked/strolled down to the park with the kids and we played for a while.  Even though Trixie has only been with us 24 hours she is will not let me out of her sight.  If she can't go with me she starts yipping and barking.  Angie had her on a leash while I was helping Doug step out of the house and she was having a fit, she was so concerned I was leaving.  Then  she would not stay with Doug, while I went to push the boys on the swing and she would not stay in the car while I ran into the house....I think we may have a problem.  She is perfectly happy if she is with me.  Poor baby, has had a lot of loss in her little life.

Trixie is making our lives livelier!

We pray:

God of New Beginnings,  we give thanks for having Trixie.  She lightens our hearts and pushes us to step out and live more boldly.  We give thanks that Doug is in a place where he wants to do more and experience more of life again.  Bless our dear little Trixie that she might feel less anxious and bless all who struggle with being left alone.  We pray for all who are in a place in their lives that they feel uncertain of the future.  In your name we ask it.  Amen.

June 9, 2017: Day +200

Trixie is Home.  We are so delighted. She came home with us today. We got to the Snake River Correctional Institution at about 3:00.  We met Barb from Second Chance in the parking lot.  We were told we could not take anything inside with the exception of our driver's license and the collar and leash for Trixie.  We went inside  and handed over our driver's licenses and signed in.  Then we waited for another inmate to go get Trixie and her trainer.  It is a low security prison.  Inmates have more privileges than you might expect.  We waited, while looking at some of the pictures of dogs that had been adopted on the walls. I turned as she walked up to us with her trainer.  She was everything I hoped she would be.  She is beautiful and so sweet.  I bent over to greet her and she  licked my nose.  My eyes filled with tears. Doug and I were both delighted.  She went right up to Doug, not afraid of his wheelchair at all.  After our greeting, we went into another room so that her trainer could show us the commands she knows, and tell us about her, so that we could get to know her a little bit.

Her inmate trainer, said that this will be the last dog that he trains.  He has trained 19 dogs and Trixie is his last dog.  He gets to go home in 50 days.  He said he was really glad Trixie is his last dog to train, because he got to end on a really high note.  He has loved her. Right before leaving another inmate joined us.  He wanted to tell Trixie goodbye and tell her he loved her.  It was so sweet.

It was hard for Trixie to say goodbye to her trainer.  He was allowed to walk out to the car with us with the guard and help to put her into the car in the crate.  It was so sweet to watch him tell her goodbye.  He obviously loves her.  When the door closed she started to yip and bark.  She barked off and on all the way home. She was not sure what was happening.  

When we got home she came right in.  She found the dog door within 5 minutes and let herself out and was back inside in about 5 minutes.  She did this same thing about 3 times in 30 minutes.  She wandered around the house to check everything out.  I took her for about a 20 minute walk and she loved it and was very good.  When we got home my sister Kate met us and she brought us dinner to celebrate our newest family member.  Trixie was so good during dinner, laying on her blanket.  Then she played tug-a-war with us, apparently her favorite game.  After much exploring and playing with us she was ready for a rest.  She crawled up in a chair and was ready to sleep.  Apparently she has sleeping on furniture somewhere in her past.  

We all love her.  She is very interactive.  She crawled right up on Doug and wanted to give him kisses.  She is now in her crate sleeping next to the bed.  She is very happy if she is very close to us.  We could not be happier. We are so glad to welcome her into our family.

And so we pray:

Loving God, thank you for blessing us with fur friends to share our lives with.  Thank you for this special gift of Trixie.  We are so delighted to welcome her into our family.  We give thanks for the people volunteering at Second Chance and for all their work to care for and protect pets like Trixie.  We give thanks for the Pen Pals, who train dogs and for all the love and care they put into their work and into the dogs.  Help us to make this transition easy for Trixie.  Watch over her and may she be a blessing to Doug as he continues to heal and he to her.  In your name we ask it.  Amen

June 8, 2017: Day +199

Trixie

Doug had a follow-up doctor's appointment this afternoon.  For the most part his doctor is really pleased with his progress.  His heart rate is under control again with medication.  We talked about the cause for his heart rate problem.  She decided to schedule an echo cardiogram and depending on the results from that test she will decide if she needs to refer him to a cardiologist.  I feel good with this plan.  I really want to find out the reason for his heart rate being high.

After the doctor's appointment we went to the pet store to get Trixie some dog food and treats.  You can tell we are really hoping that we will be bringing her home.   We now have a new collar for her, treats, dog food and a new crate that we put together tonight.  I cleaned up Stryder's dishes and a. few toys.  She will a basket of things to play with.  I brought in a dog bed and put it in the living room for her.  The dog bed was only a couple of months old when Stryder passed away.  I think it will work just fine for her. Our daughter-in-law's dad Chris, posted today that their young weimaraner still thinks that the world is her chew toy. Chris is the one who started us with weimaraners.  Being a little more experienced now with weimaraners, I am really hoping that we are well prepared. Of course we will not be a bit surprised by any behaviors she may have, after all she is a weimaraner!
But we can't wait to meet her.

Later this afternoon, we returned many items to the Knights of Columbus that Doug is no longer using.  We are so grateful for their help.  It was wonderful to be able to return items, because it is more evidence of how far Doug has come. It was also nice that Doug could go with me to return the items.  He had not been there and had only heard me talk about it.

Looking forward to tomorrow, we pray:

God with us, we are thankful for having a wonderful doctor, that cares deeply for Doug.  We are grateful to have her support on this journey.  And we are delighted and filled with anticipation looking forward to getting a new dog and hoping that it is Trixie. And we are most thankful for the ministry of the Knights of Columbus, who by their generosity, they have helped Doug to progress. Be with us now and give us patience as the healing continues and as we wait for a new dog to come into our lives.  In your name we ask it.  Amen

June 7, 2017: Day +198

On the 18th of March our beloved dog Stryder died.  We were heartbroken.  With all that we had going on, it was even harder loosing Stryder.  He was 13 1/2 years old, so we had a good long life with him.  When Doug came home from rehabilitation, that is when it really hit him that Stryder was really gone.  He has been missing him a lot.  He was ready to think about getting a new dog not long after he got home.  I was not ready because I had my hands very full taking care of Doug without thinking of another dog.  But about a month ago, I too began to think of another dog. And so in the evenings, when I would sit-down to watch TV with Doug, I began searching for a dog on-line and now we think we have found one.  We found a weimaraner (our last 2 dogs have been weimaraners). She is currently living in the Ontario Correctional Institution.  She is a Pen Pal.  She is 18 months old. She was picked-up as a stray and has been being given obediance and crate training by a prisoner.

It has taken the last 3 weeks for us to get to the point where we are going to be able to meet her.  We had to submit an application to Second Chance in Fruitland along with references. And then we had to have background checks done by the prison.  Finally, we have all the approvals and we get to meet her on Friday afternoon. I have purchased a new crate and a new collar for her. Tomorrow Doug and I are going to get dog food and treats. Doug said this morning, "Do you think it is weird that I am dreaming about Trixie?"  Trixie is her name.  I think it fits for a little jailbird.  Since we are dreaming of her and buying things for her I think we are ready to make this new committment. Not wierd at all. We are pretty sure we will be bringing her home, but it is not a done deal yet.  It is very exciting.

It is so nice to have something to look forward to and to be planning a new life with Trixie.

And so we pray:

Spirit of the Living God, you are always inviting us to new life and love.  Thank you for setting us on the path of inviting a new pet into our lives to love and care for. Guide us in good decisions and right actions, as we search for the pet that is right for us.  In your name we ask it. Amen

June 6, 2017: Day + 197

Lee and Doug after his first haircut following HSCT

Today was another important day for us.  Seven months ago Lee cut Doug's hair in preparation for Doug to go through chemotherapy. That was his last haircut. We knew it was likely that he would loose his hair and so we wanted to be prepared for that before leaving for Mexico.  And sure enough, after the stem cell transplant Doug began loosing his hair.  In fact, he lost all of it with the exception of his white hair.  He had a lot more dark hair than white hair. That means he was pretty much bald with the exceptions of small clumps of white hair.

It took months, but his hair did to begin to grow back, only much curlier than before.  He is happy that he has at least as much dark hair as before chemotherapy.  It was getting so long in the back that I told him he might want to just let it grow a while and get an earring. It might be a whole new look for him.  But no, he insisted on a hair cut.  And so we returned to Lee to do the honors.

It was a beautiful day here today. We waited outside on Lee's patio while he finished up with a customer.  He came out to greet us and said that he could cut Doug's hair outside and so we stayed outside and enjoyed the lovely weather while Lee trimmed away.

Lee has been a terrific support. He agreed to give a portion of every hair cut/color to Doug's Dollars for Doug account if they mentioned the blog and Doug's name.  In his shop he has a glass vase  for donations.  We are so grateful for his help and support. I highly recommend Lee to everyone.  He is a great stylist and great person.  Below is more information on how to make an appointment with Lee. We hope you will consider making your next hair appointment with Lee. Thank you Lee for your thoughtfulness and care for us

And so we pray:

Holy Spirit, we give thanks for your presense with us.  We thank you for people who hear your call to action and respond to it.  We thank you for putting people like Lee on our path who make the road easier and more pleasureable.  We thank you for the opportunity to celebrate milestones along the way on our journey.  We thank you for new life.  Amen

To make an appointment please call Lee.

June 4, 2017: Day +196

This week we begin to really cut back on services for Doug. When looking at Doug's calendar he only has PT three days this week. We believe he will have his nurse one day this week but we have not heard from him and Doug will go to his doctor on Thursday.   This is his last week to have a personal care provider two mornings a week.  Will has not been with us for the past week because he is taking care of his wife Sherry who is recovering from hip surgery.  Doug will have more time alone and will need to do some of his own PT.

This morning we had to get up and go out to Doug's eye doctor to get his glasses fixed before I had to be at work.  His glasses  broke and we had to use duck tape to keep them together.  Very sophisticated huh?  While I was getting things together that we needed to take with us, Doug went out to the car in his power wheelchair.   When I got out to the car, he was already in the car getting his seat belt on. He had opened the door and gotten into the car without any help.  This was a first.  It is so exciting seeing him become this independent.  And then when we got to the doctor he was able to get out by himself and get into his chair and back into the car when we came back out.  We are so pleased with this progress.

Today during his physical therapy he walked around our house with his PT and then did some exercises with her. He said it felt very natural to be walking. His walking keeps moving along.

And so we pray:

Blessed God,  we give thanks for continued movement forward.  We are grateful for Doug getting stronger each day and for the new skills he continues to demonstrate. We are thankful for the hope that we feel and pleasure we experience in new accomplishments.  Be with us this night as we sleep that we may awake refreshed and ready for the new challenges that will come with the new day.  Amen

June 4, 2017: Day 195

Pentecost Sunday

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Similar to yesterday, when I was counting the days since we began this journey; tonight I have been reflecting on Pentecost.  Back in December when Doug first became sick it was the beginning of Advent.  Most of my prayers and reflections were grounded in the theme of  Advent, we were in a "time of waiting". Then we moved into Christmas when Doug was intubated and we did not know if he would survive.  It was a time of "God with us". We felt the presence of God.  Doug lived. Following Christmas, we prayed and hoped during the season of Epiphany as we looked to the "Light coming into the world".  During this time Doug began to recover, he regained the ability to swallow and to eat.  Doug recovered from his heart, lung and kidney failure. Then the season of Lent drew us in. During this time of transformation Doug regained the ability to use his hands and arms to eat, to sit-up, and took his first steps with the parallel bars.  With the season of Easter we celebrated Resurrection.  Doug came home and during this time our hopes and prayers were answered, Doug walked with his walker. And now we enter Pentecost.  The Holy Spirit is sent to us.  She inspires us, assures us, guides us and gives us hope.  We are touched by the Holy Spirit. She will guide us through continued healing. She is with us always and we give thanks.

Tonight I want to share one of my favorite songs of Pentecost and the Holy Spirit. It reminds me that she is always available to us and she lives on.  She is hope and sustenance for the journey. She is laughter and light. Unfortunately blogger.com is not friendly to cut and paste.  The text loses color, font and formating.  While I can see the complete text it does not publish that way.  I have added a link for anyone interested in hearing the song and wanting to find the lyrics.

"She Flies On" by Gordon Light

https://www.youtube.com/watch?v=aFJVUc3Ud-8

Refrain:
She comes sailing on the wind,
her wings flashing in the sun;
on a journey just begun,
she flies on.
And in the passage of her flight,
her song rings out through the night,
full of laughter, full of light,
she flies on.

1. Silent waters rocking on the morning of our birth,
like an empty cradle waiting to be filled.
And from the heart of God the Spirit moved up on the earth,
like a mother breathing life into her child.

2. Many were the dreamers whose eyes were given sight
when the Spirit filled their dreams with life and form.
Deserts turned to gardens, broken hearts found new delight,
and then down the ages still she flew on.

(Refrain)

3. To a gentle girl in Galilee, a gentle breeze she came,
a whisper softly calling in the dark,
the promise of a child of peace whose reign would never end,
Mary sang the Spirit song within her heart.

4. Flying to the river, she waited circling high
above the child now grown so full of grace.
As he rose up from the water, she swept down from the sky,
and she carried him away in her embrace.

(Refrain)

5. Long after the deep darkness that fell upon the world,
after dawn returned in flame of rising sun,
the Spirit touched the earth again, again her wings unfurled,
bringing life in wind and fire as she flew on.

(Refrain)

   

June 3, 2017: Day +194

Our friend Christy from Michigan, reminded us that today we celebrate 6 months of being home from HSCT.  It reminds me that it is time to count the days again.  It is 7 months since we went to Mexico. It is 194 days since Doug's stem cell birthday.  And it is 54 days since Doug has been home from the hospital.  What a journey it has been.

"Pilgrimage is a powerful metaphor for any journey with the purpose of finding something that matters deeply to the traveler"  Phil Cousineau  

This pilgrimage we have been on has carried us over mountains and into deep valleys and we are not done yet.  The journey continues.  We are seeking wholeness and healing.  This matters deeply to us, to our fellow travelors and to those supporting us along the way.

Today, we had another first.  I left Doug to travel to McCall to a Diocesan Council meeting.  It is the first time I have left him at home and I have gone out of town. It is the first time I was gone this long without anyone checking in on him.  He tells me that it felt normal for him. He got his own lunch and snacks and entertained himself.  While I worried some, he was fine.  In a sense it was another step toward normal  We had a day, similar to our life before Doug's sickness.  And tonight Doug did everything on his own to get ready for bed, including getting into bed on his own from his wheelchair.  I just stood nearby and watched.  It is such a relief to have come this far on our journey.

While I would have loved to have spent the night at Paridise Point Church Camp in McCall, Doug is not quite ready for new unfamiliar environments.  It is harder for him to be independent.  We would not have the supports that we have at home.  But it was a lovely day in the mountains, at the lake, with wonderful people. While it was a long way to travel in one day, it was restorative to have some time alone for me, w ith mountains, trees, lakes and supportive people.  It does not get any better than that.  It was another successful day and a step futher on our journey.

And so we pray:

God of Journeys and Resurrection, we give thanks for all of the days of our lives.  We give thanks for people to journey with.  We give thanks for mountains and valleys, and for new vistas along the way. While this journey is long, we give thanks for moments of rest and restoration.  We pray for continued strength to carry on each day.  We pray that each step will lead us to wholeness and healing.  In your Name we ask it.  Amen

June 2, 2017: Day +193

Doug had two therapies today:  physical therapy and occupational therapy.  Today was his last day with occupational therapy.  He is still not able raise his left arm completely straight above his head and his arms are still fairly weak. His left hand his still very weak and he does not use it completely.  But I guess since he is mostly functional that is all the in-home therapy that can be provided.  I also understand that they will only show us how to do new exercises and then Doug has to do the exercises on his own.  I guess they think they have introduced all that they can and now the rest is up to Doug.  Doug really needs some support and coaching to do the exercises.  He tires easily and it is hard for him to stay motivated. Also he struggles with procedural memory. I am not sure he can do any of the exercises without some support. And so I guess that makes me the coach.

Tonight he was able to get into bed on his own with no help from me to lift his legs into bed.  Also before bedtime he did all the bedtime routines on his own and even got his clothes out for tomorrow. I am so glad he is taking the initiative to become a little more independent each day.  It makes both of our lives better.

And so we pray:

God or New Hope and New Life, thank you for the continued strengthening of Doug's body.  Thank you for each skill that allows him to be more independent.  We continue to pray that his body will be restored to wholeness and that he may walk and enjoy all the things that have given him pleasure in the past.  In your name we ask it.  Amen

June 1, 2017: Day +192

Over the last week I began moving equipment out of the house into the garage that Doug is no longer using.  When we left the Elks, there was such a push for all the equipment that we would need for Doug to come home.  Luckily the Knights of Columbus helped us to meet most of those needs.  Doug has come so far in the last 2 months that he does not need most of that equipment anymore and I am preparing to take much of it back to the Knights of Columbus for others to use.

You can see in the picture some of the things I will be taking back this next week.  These items include: a commode, a commode/shower chair, the Hoyer, a turning disk, blocks to help Doug push against to transfer, a slider board, bibs, and a step to help Doug get into bed.  He also does not need the parallel bars.

We are so thankful for his continued progress and look forward to the progress that he will be making over the next few months.  Tomorrow is his last day to receive occupational therapy.  His physical therapist is writing a 2 month plan.  Her intention is to get him back to where he was after he received HSCT and then we will consider moving him to outpatient therapy to continue improving his walking skills.

Tonight we look back and give thanks for the progress he has made.

God of Resurrection and Promise, we give thanks for the generosity of others in providing for the many needs that Doug has had over the past months.  We give thanks for all the equipment that the Knights of Columbus provided us in our time of need.  And we give humble thanks for the all the improvement that Doug has made in walking, sitting and using his arms and hands.  We are thankful for skilled and compassionate therapists. We are thankful for answered prayers. We continue to pray for a restoration to wellness and health.  We pray that the progression of Doug's MS has been stopped.  We pray for new life.  In your Name we ask it.  Amen