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