November 30, 2016: Day 11

Our pins placed to represent the countries from which we have
traveled for treatmemt

I promised to finish my story from yesterday.  It was our last day of treatment at Clinical Ruiz. It was a big day, so many emotionals and much to capture, to remember.  I did not want to hurry it last night.
 
First let me briefly catch you up on today. It was totally unscheduled except for Zena coming to clean.  It feels a little surreal.  We have been  on such as treadmill since the 16th of September when we found that we had been accepted to the Nov. 7 group. We took full advantage of the day off. We did very little.  I took a 3 hour nap. Doug is still coughing and still tired but not as tired as he was. He is mending.

But yesterday, yesterday was special.  It was the end and the beginning of our new life. Yesterday we had our discharge interview with Dr. Ruiz.  Doug calls Dr. Ruiz a living legend.   He is a very accomplished hematologist.  He has written more than 600 articles in his field and has been acknowledged by the Mayo clinic as an distinguished  alumni.  He has chaired the international Mayo Alumni Association and presented his work at international conferences.  We came here because of his reputation, but  what we found is an incredible human being who is kind, compassionate and caring.  His clinic which is larger than a city block, employees the same kind of people as he is.  Dr. Ruiz is in the business of caring for and healing people. And he cared for each of us.  He reached out in healing.

Clinical Ruiz in Puebla, Mexico

Because of Doug's hospitalization we came more under his immediately care.   While Dr. Priesca was in our apartment assessing Doug the night he hospitalized him, he was calling and consulting Dr. Ruiz.  Dr. Priesca consulted with Dr. Ruiz throughout the night before leaving us at 1:00 in the morning in our hospital room.  And it was Dr. Ruiz who came walking into our hospital room at 4:30 in the  morning to assess Doug himself and put some additional treatments into place.  And Dr. Ruiz came to Doug to check on him in the clinic to see how he was progressing, while we were there.  He continuously monitored his progress.

Yesterday afternoon we sat down with Dr. Ruiz to review all of Doug's records and to listen to Dr. Ruiz's recommendations for Doug upon our returning home. He told us that Doug's blood count is now up to 12,000. This number is within a normal range. Great news.  His hemoglobin, platelets, blood pressure, and temperature are all within the normal range.  All of the values of his blood work look good. Doug is on the path to recovery.

Dr. Ruiz talked to us about the precautions we will need to take upon returning home.  Doug cannot be around people who are sick for the next 6 months.  He is not to eat in restaurants if he can avoid it for 3 months. We are not to have house plants in the house for 6 months.  We can have our dog Stryder, however he will need  monthly baths and Doug will need to sanitize after petting him.  We are to reduce and avoid any conditions that could expose Doug to illness.  That means keeping the house as dust and mold free as possible.  If and when Doug goes into public places and is around people he should wear a mask.

Doug will need to continue Retuximab infusions  once we return home. I told Dr. Ruiz about my worries concerning how we are going to get Retuximab infusions for Doug every two months.  Our neurologist is not willing to prescribe it since the treatment is still experimental in the U.S. I will begin looking for a hematologist once we get home to try prescribe it. Even if I find someone, I don't know if insurance will cover it.  There are people who are finding doctors in the U.S. however it is complicated. It seems like a monument task if we have to fly somewhere to see some unknown doctor and  then get our insurance to cover the infusion..  The medication Retuximab  is very expensive in the United States.

Picture with Dr. Ruiz

Dr. Ruiz said he would be happy to talk to a hematologist if we can find one and explain the treatment, so that we would not have to return to Puebla to get the treatment.  Right now, it surely seems easier to come to Puebla,  We know the doctors and we trust them and we know they care about us.  It will cost us more than $2000 every 2 months to come here for treatment, but if insurance does not cover it in the U.S. it could cost us even more.  So this is the next battle we will need to fight.  We will take this on when we get home.

We ended our time with Dr. Ruiz, with a photo with this wonderful man.  This man, who is passionate about finding healing for all who suffer from auto-immune issues.  A man who does not put limits on the possibility of healing.  Meaning that he helps those who come to him.  Healing means care and compassion as well as modern medicine.  I am so glad we chose to come to Clinical Ruiz in Mexico for treatment.  We leave here with hope and with a promise to keep Dr. Ruiz and his staff with updates of Doug's progress.

Oh come, oh come Emanuel.    We leave Clinical Ruiz, with hope for life free from  MS.  We leave here filled with expectations.  We leave here with new friends who have traveled with us on this journey. Be with all of us now as we prepare to travel home.  Be with us as we share in the excitement and promise of new life.  And bless all who have journeyed with us to bring us here and to support us in being here.  Our hearts are full of thanksgiving for all that has happened and will happen. Amen

We have a Christmas dream of health and new life.

November 29, 2016: Day +10

What a wonderful day.  Doug woke up feeling better, with much less cough and much more sleep. It was our final day to go  to the Clinic, the last infusion, and official discharge.  It was also a day to say good-bye to a few people who have decided to fly out early since we are done sooner than anticipated, since we are in Group One. We are all in shock that this part of our journey is coming to a close.  The first steps toward healing have begun.

With Doug having more difficulties this past week, I think we were less prepared for today.  Before coming the information said this is a 28 day treatment and so we assumed we would be involved in active treatment up until the last day. When we got here everyone was assigned to a group and Doug was assigned to Group One.  That means we did every treatment first.  The other groups will finish in order, with Group 4 ending on Friday. We actually have a couple of days to recover and get more support in the event Doug has any more difficulties.  I don't think that will be necessary.  He is definitely on the path to healing.

And so we met our group at 11:30 and took our final trip to the Clinic.  It was bittersweet.  We have become very close to this group, going through this pivotal experience in our lives together.  We shared hope, fear, uncertainty, sickness and friendship.  Daily when we were in isolation we were all still in communication several times a day through Facebook Groups and Messenger.  We all feel an investment in each other.  We will miss each other.

Though the day was bittersweet because of the loss of these new friends, it is still very exciting.  We did it!  We made it!  We tackled all the odds to get here. We are on a path to healing.  This is the first time any of these patients or as Kirsten likes to say "Stemmies", have felt like this disease has been stopped.  This feels like hope.

Because the day was so full I have decided that I will only share half of the day in the blog tonight. We did not get home until late. We have just finished dinner and it is 9:15 and we are tired. So I have decided to share the schedule of the day and the details about the final infusion of Rituximab. Tomorrow I will share our discharge consultation with Dr. Ruiz.

With our chemist Martin and his assistant

The schedule for the day began early with Martin, coming to collect blood samples and to check vitals. Then Doug got a shower and we left for the clinic at 11:30.  Once arriving at the Clinic, we met individually in consultation with Dr. Ruiz.  He has been especially interested and concerned about Doug because of his cough and weakness.  He made a special point of greeting Doug and asking him about how he is feeling now. After our consultation we went upstairs to the chemotherapy room and settled in for the final infusion of Retuximab.  This infusion was scheduled to take 3 hours.  And it did take that full amount of time.

The group all settled into the same chairs they had chosen the first day of chemotherapy.  Even though no one wants an IV infusion, there was joy and happiness in the group.  This is the last infusion and everyone was able to have the infusion today.  That meant that all in our group have responded as expected to treatment and every ones blood work met the criteria for the final infusion.  We started as a group and we were going to end as a group.
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The last two days, the nurses have had some difficulty getting a vein for taking a blood sample from Doug and then today for the final infusion.  Doug was very patient and very positive with the nurses. They felt bad that they were having a difficult time.  Doug said he had given so much blood that he did not have any blood left. Eventually, the needle was inserted and the infusion began.

Nurses trying to get a vein

On the wall there is large map of the world and on that map people have placed pins from where they are from.  At the end of the infusion we put our pins in the map.  We are the first from Idaho to receive treatment at Clinical Ruiz.  We proudly put our pin on the map and celebrated everyone else as they placed their pins in Norway (2), Sweden, France, Australia, and the United States (2), What a blessed moment.

First patient in Idaho

Then Marianne called us all to attention.  She had a stack of boxes with bows, that she called an early Christmas present. There was a gift for each patient.  They all enthusiastically opened their gifts. They all received very special toiletries for skin care.  It was very thoughtful .All our brave patients need time to now pamper themselves a little bit.  They have been through a lot.

Then Marianne brought in postcards for everyone.  The cards were symbols of Puebla including one card with the beautiful Catholic cathedral and the other of the volcano with the stunning catholic church that sits on top of the old Aztec pyramid. The cards had all of the clinical staff names that participated in our treatment.

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And then it was time for goodbyes.  With heartfelt gratitude and warm feelings we said our last goodbyes to this wonderful staff that had so genuinely cared for all of us throughout this treatment protocol.  I have never run a marathon, but I can only imagine that the experience we had today was similar.  When running a marathon, I believe you start with high expectations and hope; you have prepared.  And then midway through it begins to get hard, and you are not sure if you can make it.  You may stumble, you may stop to rest, you may cry from the pain.  But there are bystanders along the way that encourage and push you on. And finally the end is in sight.  There is pain, there is exhaustion and there is a feeling of relief.  But mostly there is a feeling of triumph.  It is done.  It is accomplished!

Our morning nurses and infusion staff

And so we pray

Holy and Life giving God.  We thank you for picking us up and carrying us when we are tired.  We thank you for the brilliance of your creation in all it's diversity. We thank you for the opportunity and joy of living and being in community. And we thank you for the opportunity to heal.  Continue in Doug and all those seeking healing, a renewal in their bodies, minds, and spirits.  Cell by cell, moment by moment, and day by day, recreate them and make them well. And watch over all who provide care for their loved ones, that they may be sustained in their desire to help and be filled with hope that overflows and sustains those in need.  In your name we ask it.  Amen.

Group One with Carers and Outpatient Support 

November 28, 2016: Day 9

Today is maybe the first or second day that we have not had to set the alarm.  No nurses or doctors today. However Zena will be here to clean for us around 9:00.  It is exciting not too have to start the day with shots and blood tests.  And luckily Doug was able to sleep in a little bit.

Zena showed up as she always does, with a big smile on her face and her basket full of cleaners.  She does not speak English and we don't speak Spanish, and so we have learned to use the few words we both know in each others language to communicate. We both laugh when our communication is confusing each other.  I like her.  Zena is very efficient and she has a consistent routine.  In a little over an hour she can be done with everything and on her way to the next apartment.  Having Zena has made our stay here much easier.

Zena our lovely housekeeper

After Zena left, Doug settled in to watching CNN and snoozing off and on the rest of the morning. Me, I took advantage of Cyber Monday.  I had a goal to have my Christmas shopping done before I left here.  Of course when I left, I had imagined I would have lots of sitting around and quiet time.  It turns out that things have been a bit busier than that.  I also took some time taday to see if Doug's insurance would cover any of his stay in the hospital down here.  I purchased travel insurance as well, when I purchased our airline tickets.  I had to pay for his care when we checked into the hospital with a credit card. They charged my card $13,000 pesos for the hospital, ambulance, hospital stay, medicine and care and an additional $4000 for his x-ray.  At the time the last thing I was worried about was the cost. Now with a few days behind us, I decided that I had better start working on reimbursement if possible. The good news is that it looks like his insurance will pay a portion and I am not sure if the travel insurance will cover any, since he traveled here for a medical procedure even though I don't think the cough or extreme weakness is related to the treatment.  We will see.

Doug is still coughing, and so his sleep is still interrupted.  Waking this morning he is still fairly week and the cough is hanging on.  The last steroid infusion did not slow it down much.  It may have made him slightly stronger.  It is very hard to say.  Dr. Priesca sent over a medication to use with an inhaler. It arrived about 5:00 p,m.  The medication is in a pill that fits into an inhaler that you squeeze which punctures the pill while you are inhaling.  The funny thing is that the directions were all in Spanish. There were pictures and everything was going well putting it together, except after Doug inhaled, he did not taste or feel any medication.  I opened up the inhaler and the pill was still sitting there and the pill had a powdery substance in it.  I thought for sure it did not work.  Doug tried again.  Nothing.  And so I called Dr. Priesca, however he was not available.  And so I sent him a text.  Thirty minutes later, I had not heard anything and so I called Marianne our patient advocate.  She said she would call Dr. Priesca, and she did but she to had to leave a message.  An hour later Dr. Priesca called. We have spent so much time with these two in the last few days that I feel like we are old friends.  We reviewed everything I had done and he said, yes, that is it.  And if there is something more to it, he will walk through it with us tomorrow at the clinic.

An inhaler for Doug's cough.

Tomorrow if all goes well it will be last day that Doug is under direct medical care.  In the morning the nurse or doctor will come to take a blood sample to once again measure his white blood cell count, hemoglobin and platelets. And then at 12:00 p.m. Doug and the others in our group will get the final infusion of Retuximab.  We will meet individually with Dr Ruiz and he will provide Doug's discharge consultation and make recommendations for continued care once we return home on Saturday.

Faith: believing in things unseen.  It was faith that brought us here to Puebla and now it is faith that we will carry with us as we return home. Faith and trust in the healing power of our God, our bodies and God's servants who have worked so hard to develop this treatment.

And so we pray:

Wonderful Counselor, it is you who drew us in, whispering words of healing and hope to us. It is you who listened to our prayers and have counseled us to keep taking the next right step.  Be with us now as we finish this treatment.  Encourage and counsel us as Doug's moves towards healing.  Strengthen us in our faith so that we will remain steadfast in the knowledge that you are doing better things for us than we can ask for or imagine.  Give us eyes to see you at work in all things.  In your name we ask it. Amen.

Sleeping wrapped in healing prayers.

November 27, 2016: Day 8

A view out of our balcony window with the volcano in
the background.

It was another beautiful day today here in Puebla.  The temperature is about 70 degrees with blue skies.  It is a bit like Camelot here. The temperature varies very little throughout the year.  The sun rises at about 6:30 a.m. and sets at about 6:30 p.m.  The temperature only drops to about 45 degrees at night.  Just cool enough to sleep well.  No need for air conditioning or heating.  Just lovely.

I discovered for the first time last night, after having been here 3 weeks that we have an open area in the middle of our apartment complex with a pool, lounge chairs and tables with umbrellas. One of the other patients told me today she has been coming down here while the housekeeper is in her apartment.  She told me the pool was open yesterday.  Wow. I could have spent a little time down here all month soaking up some sun if I would have known! Oh well, maybe this week.

Mereta Mereta, who is here with her son sent us some pictures this morning of her home in Norway.  Her house is lit in white lights.  The color of the sky is a twilight color yet it is midday.  There is snow on the ground.  She explained that this is her favorite time of year. Her husband has decorated the house for Advent.  Yesterday, my daughter told me that she loves Advent.  She loves the short days, the darkness and the quiet. I love this image  too of a quiet dark time, a time of expectation and waiting. It is a time to prepare and go deeper into ourselves and reflect on our own lives.

As I walked home from the grocery store today, in this beautiful weather I thought about the contrast between here and there.  I though about our purpose for being here.  Surely it too is a time of expecation and waiting.  It is a time to prepare for a new life.  It is a time to seek. The warm sun on relaxes and refreshes me.  The fresh air and gentle breeze wash over me and lead me into contemplation.

A marathon being run on this beautiful day.

Our friend Kate, reminded us  today when commenting on the blog, that the theme for this first week of Advent is hope. How appropriate for this last week in Puebla to be bathed in expectation and in hope.  And when we return next Sunday we will enter into the time of preparation for the light to  come into the world.

Waking this morning, I was tired, Doug did not feel well.  Hope was not on our lips. Since Doug got sick last Thursday, our sleep schedule has been really mixed up.  Wedneday night Doug had a bad fall, then Thursday night we were at the hospital with his weakness and his cough, the last two nights Doug has not been sleeping because of the cough and he is up and down all night.  Needless to say we are both pretty exhausted.  This morning having to set the alarm for 5:30 to be ready for the nurse at 6:00 for blood tests and shots was really difficult. We took a little cat nap from 6:30 to 8:00, at which point we needed to be up to have breakfast before Zena, our house keeper was exptected to arrive.  All this information is just to explain, we are feeling pretty tired right now, and I am sure that is interfering with Doug getting his strength back and getting over this cough. We were a little down.

Getting the pictures from Mereta to remind us of Advent and the comment from Kate about hope and the continuous reaussure of the comments on the blog all day kept pushing us along through the day, building us up, bolstering our hope. At 2:30 we met our group at the van and headed for the clinic. Today we are getting an update on our neutrophil white blood cell count.  We also needed to check in with the doctor again about Doug's cough.  It was good to be with everyone.  There was hope today that the numbers would be high and the patients would no longer be in neutorpenia.  And indeed that is what happened.  Everyone in our group but one had high enough numbers to put every one back in the normal range.  Doug went from 200 on Thursday night to 6000 today.  Whoohoo! His body is doing just what it is suppose to do! Well, except the cough.  Nevertheless this was hopeful information. We are happy and reasured.  Dr. Priesca is going to have a different medication sent to us in the morning for Doug's cough.  Hopefully this will help him.

Popocatépetl volcano

So indeed, as we begin this first week of Advent we are reminded to be hopeful, to remain hopeful.  And so we pray.

Emanuel, God with us, thank you for your continued goodness and presence as experienced in the words of your people, as they continue to surround us and lift us up. Thank you for the hope that lives in our hearts.  Thamk you for the expectation that there is more to this world than what our eyes can see and the deep longing we have to live more deeply, more authentically and more wholely.  Be with us now. Guide us, teach us, show us the path to wholeness and healing.  Help us to grow more and more in your image so that we too may bring hope to others and shine light in the darkness.  Amen

November 26, 2016:: +7

Wow, it is hard to believe it has been a whole week since the stem cell transplant.  Initially, I could not imagine how we would fill our days in the apartment with needing to stay inside this past week.  As it turns out it is busier than you might think.  Getting up early every morning to be ready for the nurse or doctor and getting breakfast takes until  about 8. It takes time for Doug to get a shower. Then I begin the washing routine, because everything we have worn, and the towels and sheets have to be washed everyday and then of course these past days with going to the hospital and Doug not feeling well, the days just escaped us.

Doug getting a steroid treatment at Clinical Ruis

Doug is much better than Thursday (Thanksgiving), however he is not doing great. Monday was a high point he was doing better than he has for a while. Thursday was the lowest with needing to be hospitalized.  And today, well he seems to have gone  downhill again.  He is coughing a lot tonight. He is stronger, he is mostly transferring himself with the wheelchair and he is dressing himself. However he is not where we want him to be and he is really annoyed with this cough.

Today we had an appointment at the clinic with Dr. Priesca for a steroid treatment.  Dr. Priesca is wonderful.  He is very concerned and helpful.  Marianne was there too and both of them were encouraging and positive.  Dr. Priesca thinks Doug will start feeling stronger tomorrow. He said his neutrophil white blood cell count should start coming up.  Doug gets blood drawn in the morning and then we will go to the clinic to get results in the afternoon.  We are very grateful for the support of these two people.

Dr. Priesca and  Marianne, wonderful people and
great health care providers

Good News!  The parts to Doug's wheelchair came today!  He is so happy about that.  He has really hated not having his chair, especially the last few days when he has been so weak.  It took me more than an hour, but I finally figured out how to fix it with the parts that were delivered and the limited tools that I have.  I did not cuss, but I wanted to sometimes!  The nice service man Michael at EZ Cruiser gave me extra parts in case I would need them and some pointers.  Luckily, I did not need the extra parts!  So, Doug is back in business, he has his wheelchair again.

Wheelchair parts

Tonight we watched a movie, that was a suspense comedy.  It was a nice distraction and had some Facetime with our grandson Cole and my sister.  That was fun.  Hard to believe that we will be home in a week.  It was nice to be able to say, we would see them next week.  Really, our time here has gone very quickly.  We have not had too many dull moments. :)

Time for bed, because the nurse is coming at 6:00 in the morning.  There is a marathon in the city tomorrow and many streets will be closed.  And so it is time to pray.

Gracious and Holy One,  you know our needs before we ask.  And yet we need to ask.  Please heal Doug, in body, mind and spirit. Give him hope when he is discouraged, and courage to face the tough days that come with healing.  Help us to see that all things are being made new.  We are so grateful for the love, care and concern of so many friends and caregivers.  Thank you for making yourself known in the generosity of spirit that touches us each day through those who surround us. Amen

Fixed part on wheelchair.  YEA!

November 25, 2016: Day +6

In the ambulance on the way to the hospital.

 Going down the roller-coaster....

Doug fell asleep right after getting the hospital room, but it did not last long.  He slept about an hour and then woke up coughing and kept coughing until almost 5:00 this morning.  An another angel came into our room at about 4:30.  It was Dr. Ruiz, who is the head of the clinic and has designed the Mexican method for HSCT.  He reviewed all the records, ordered another respiratory treatment and then ordered more medications.  He told Doug not to worry, there is no infection and that they were going get the cough under control.  He would be fine.  He left, then Doug recieved a respiratory treatment and some other IV medications.  We finally fell asleep and were able to sleep for a couple of hours, before the staff were back in to take vitals, change medications, order breakfast, change sheets, take more vitals....It was a busy morning, but the good news is that the cough was reduced.

Doug finally resting in the hospital.

Marianne, our patient advocate who had taken care of our admission to the hospital for us showed up with Dr. Priesca at about 9:00 to check on us.  Dr. Priesca looked Doug over,  review the records and talked to Dr. Ruiz.  They decided they really wanted Doug to come back to the apartment, because he was better and responding.  The hospital is not a good place to be when you have a very low immune system.  We learned that Doug's neutrophil, white blood cell count from last night was 200.  Normal is 4,000 to 12,000.  He had been at 5,600 on Monday, 1,900 on Wednesday, and yesterday, Thursday he was 200.  This low of a count probably accounts for a lot of his weakness, brain fog, and sleepiness.  But not all of it.  Dr. Ruiz now believes that Doug may have been having an MS flare. Part of the treatment he has been given are IV steroids.  I never thought about the coughing being an MS flair, but it makes some sense since there are no other signs of infection.

I was still really nervous to take Doug home. To change his sheets and move him in the bed, it took 4 people.  To get him in and out of the bed it took two strong men.  How am I going to care for him? However,I am also nervous having so many people in and out of the room and the risk for contamination. Bringing him to the hospital last night was a big risk with so many people involved with his treatment no matter how careful they are. Dr. Priesca reminded, breathing was the most important thing we needed to attend to last night.

Doug receiving a respitory treatment.

Doug was much more with-it by noon.  He could help me in dressing him.  He was able to stand long enough to pivot into the wheelchair.  Dr. Priesca knew I was still nervous.  He told me to call him immediately if  I need him or have any worries.  Our driver said to call if anything happens and I need help.  Tomorrow they want us to come to the clinic for more steroids and evaluation.

Dr. Priesca and Marianne walked us out to meet the van.  Dr. Priesca wanted to take a picture of Doug and send it to Dr. Ruiz.  Dr. Ruiz wanted to see for himself how Doug was looking.  And then the orderly and Angel loaded Doug into the van and we returned to the apartment.

Angel our driver, and our building security got Doug out of the van and Angel pushed him up to the apartment and got him settled on the couch.  I was carrying all the things I had taken with us from the night before, with some additional items they had given us at the hospital.  The good news is that Doug is talking again, aware of what is happening and able to pivot into the chair.

I immediately got to work disinfecting the apartment.  I had forgotten to leave the key in the midst of our crisis, for our housekeeper.  After cleaning everything, floors, bathroom, handles, and washing sheets and clothes, I made us a light lunch.  Doug was still doing pretty well but we were both really tired. It was time a nap.  We have been pretty much sleepless for a couple of nights.

Tonight, Doug is coughing more, but not falling asleep.  He is watching some TV and interactive. I think we will be okay, tonight, I hope.

Last thoughts, well there are a lot of them.  First thanks to all the people who have sent prayers and well wishes today. Both Doug and I are supported by the kindness of so many! Our fellow patient Suzie offered her caregiver to come and help us.  We may still take her up on it. We will see how today goes.  And, I am amazed how well we have been taken care of here in Puebla.  There are difficulties with being with nurses who only speak Spanish and we only speak English with just a tiny amount of Spanish.  But it worked.  IBeing here, will always be memberable experience.  Having Dr. Priesca and Marianne with us for so much of the time made all the difference.  Truly, these people are remarkable. Dr Priesca says, no thank you is necessary we are here to take care of you.

My friend Cory said today, two steps forward, one step back.  Okay we are ready to move forward again!

Holy, most gracious God, thank you for all the angels that have surrounded us in these past 24 hours.
Thank you for the care of our doctors and medical staff.  Be with us now as we move forward, seeking healing and new life. We pray that Doug's body will continue to heal as will the bodies of all those who are seeking healing along with us here in Puebla. Grant us the grace to accept the help we are given and see you in those around us.  Amen.

November 24, 2016: Day +5

Ok, today has been a major roller-coaster.  We are in Hospital Puebla.  It all started yesterday afternoon, when Doug's cough became a little more pronounced and he was very tired.  He had a fall in the middle of the night.  He was pretty weak.  Then today he woke up at the normal time at 6:30, but he was very tired by 9:00 and kept falling asleep.  Even though I knew he wanted to watch the Macy's Day parade and football he could not keep his eyes open.  We were not having a typical Thanksgiving even though we were trying.

Then by afternoon he was dozing most of the time and coughing frequently.  I had asked the doctor in the morning when he came to visit about the cough, but Doug was not coughing much then and his vitals and temperature were all good.  And so he said just to monitor him and Friday he would see him in the clinic. After dinner Doug seemed to just wilt.  He hardly ate any Thanksgiving dinner and he was talking very little. Then he had his first fall when walking with his walker to the couch.  I could not get him up and so I went upstairs and got Oddne from Norway.  He is the 20 year old son of another patient. He helped me get Doug into the chair.

Not long after that when Doug needed to go to the bathroom, he fell again when he started to stand. I got Oddne to help me again.  By this time he was coughing a lot and was not talking much and was having difficulty processing what I was saying.  I decided to call the doctor.  I had taken his temperature and it was still normal.  The doctor decided that he should come over and take a look at him. Then trying to get Doug into the bed from the wheel chair he kinda melted to the floor.  I had to go get Oddne again.

Dr Prisca checked all of Doug's vitals and they were still all normal.  However the cough, because it was so continuous did not make sense to him. He decided he needed more tests.  He called an ambulance and  not long after that we had 4 men, checking his heart, blood sugar, oxygen levels, and vitals.  All the tests were normal.  However he was so weak he could not sit-up by himself and  had lots of coughing.

I rode with Doug by ambulance to Hospital Puebla.  The doctor followed behind us.  Once arriving at the hospital they started an IV, monitored his vitals and and took an x-ray and drew blood work.  The x-ray came back clear.  They decided to keep him overnight to monitor him, give him respiratory therapy and some medication to suppress the cough.  They have made up a bed for me in his room and he is now sound to sleep.  He was so tired earlier and so he  must be completely exhausted now.

No pictures to add to the blog today, I too am very tired and am going to try to get some sleep.  You know how that goes in the hospital.

Gracious Lord, watch over us as we sleep this night.  Heal Doug's body.  Give him strenghth to face tomorrow with all the challenges of healing.  We give you thanks and praise for all who are caring for Doug.  Help them to find the best treatment for him. Amen

November 23, 2016: Day +4

The view of the Volcano from our balcony  tonight

Today was a fairly relaxed, but routine day (our new routine) here.  We got up at 6:30 to be sure we would be ready for the nurse.  She did not come until 8:30.  But that gave me time for a shower and to make breakfast.  Doug can have scrambled eggs and toast on his diet so he was happy to have that.

Our housekeeper arrived about 9:30 and disinfected our house.  We washed all the sheets, towels and hand towels along with the clothes we wore yesterday.  And then we were ready to head to the clinic at 11:30.

The ride to the clnic was much more upbeat then Monday.  Everyone was feeling better. Kirsten, who had a relapse on Monday, has now had two days of steroids and she was with us again.  We were all so glad to see her. She is having more difficulty with walking but she was up and ready to keep moving forward. Karin who has the least mobility in our group said she is having less spasicity, and another woman not in our group, was telling me that she is feeling stronger.  Everyone is just a little afraid to be hopeful; the patients have all been through years of struggle.  Of course, they are afraid of being disappointed.

The wonderful thing about our group is that we have the ability to continuously check-in with each other through Facebook Messenger.  Throughout the day there are questions posted, inquiries of concern for one another and announcements made.  I can't say enough about how going through treatment together has been incredibly supportive.  I am so glad we decided to come to Clinical Ruiz in Mexico for treatment.

Our meeting with Dr. Delgato was for only about 10 minutes.  He and Dr. Andrew checked Doug's vitals again and then he reviewed his blood work.  Doug is officially in neutropenia now.  His neutorphil count was 1500.  Below 4000 is considered in neutropenia.  This is good news, this is when Doug's immune system will "reboot" and the new stem cells can begin building a new immune system with no memory of MS. His hemoglobin has dropped, this is normal too.

This morning Doug woke up feeling good.  He said to me a couple of times, that he could not believe how good he feels. I think he expected to feel much worse.  However, I think he is much more tired today.  He has slept quite a bit today.  His cough has been a little more pronounced today.  He is still doing pretty well walking with the walker and getting up and down pretty well.

Our freeze dried meals from Salt Lake City

Our freeze dried neutropenia food finally arrived last night.  We had a peanut butter sandwich for lunch, but for dinner we decided to try out the chicken alfredo.  I would not say it was great but it was edible.  I laughed when I read the back of the package.  It was made in Salt Lake City.  I think our Mormon friends are taking care of us.  We have 84 emergency storage meals.  We definately have a taste of food from home.  :)

Neutropenia Diet: Chicken Alfredo and Vegetables.

We are looking forward to tomorrow to celebrate in a very small way, Thanksgiving.  We have much to be thankful for.




Holy One, we thank you for new beginnings. We look forward to the changes that will happen in our lives as Doug's body is "rebooted". Give us courage and strength with the ups and downs that will come and strengthen our vision in the possibilities of new life. Amen.

November 22, 2016: Day +3

We woke up early to a knock at the door at 5 minutes before 7.  Not a morning person. I have been setting the alarm for 7 because typically our doctor or nurse don't get here before 8:30.  But this morning, our nurse was early!  I was jumping out of bed throwing on my robe, running to the door, but luckily, Doug was up, already dressed and just brushing his teeth.  I think this says something about how he is feeling. He was up and ready to go. Getting dressed is a really big event for Doug. It is one of the harder things he has to do all day. Today he looks and feels better than yesterday.

Before Doug started treatment we went through and rated all of his symptoms on a scale from 1 to 10.  My thinking is that we will rate how he is doing month to month.  That may adjust as we move through this process.  HSCT is meant to stop the progression of the underlying disease.  Having said that people may get skills back.  People who are early in the disease in the relapsing remitting phase are most likely to get their skills back.  People who have had it a long time are less likely.  More than 80% of the time the disease is stopped in all people.  We of course hope and pray the disease is now stopped and the icing on the cake would be for Doug to get skills back.  I am not going to stop praying for that as well.  

A couple of days ago when Doug's wheelchair broke, he was really heartbroken.  He said, I don't want to loose my independence.  I told him we are stuck in the apartment anyhow.  You have a walker and a transport wheelchair we can make this work.  He is now primarily the walker to get around the apartment.  And I think.....he is more stable.  I think...he is getting up and down easier.  I think his left leg is dragging less.  I know it is subtle, and I almost hate to say anything, but I think we are seeing some improvement.  

Also, in the months before we came, Doug had developed some choking problems.  He was choking really easily.  He would pound his chest.  I am surprised he did not leave bruises.  I was just thinking about this and realized that he has not been choking in the last few days.  Do we dare hope?  This certainly is an issue that we often hear resolves early.

I just read him the blog and asked him if he agreed. He said yes, I think so.  As we talked, I said today you have been able to stand-up from the couch by yourself and use the walker.  Just last week, I was needing to help him come to a stand to get into the wheelchair.  

It is early, but it does seem like we are seeing a little improvement.  I also know this can be a roller-coaster for 3 years.  People gain skills and then loose them.  Sometimes it is 2 steps forward and one step back process.   But today we are hopeful.

And so we pray:

Holy One, we are so grateful to have small things in our lives that give us hope where there have been shadows and darkness. We are delighted to have moments of joy that lighten our hearts and we are so thankful for the quiet moments in the day for rest and restoration.  Be with us now as we prepare for sleep, help us to rest in your presence and wake to the hope of a new day.  Amen

November 21, 2016: Day +2

Today Doug woke up feeling much better! After yesterday, a day of exhaustion, constantly blowing his nose and coughing, today he feels pretty good and has only occassionaly needed to blow his nose or cough.  Praise God and all of your prayers.  I have to tell you, it feels like a little miracle.  I have never seen a cold clear up this quickly!

Dr. Martin, came a little before 9:00 this morning.  He took Doug's vitals, gave him a shot to increase his stem cells (filgrastrim) and took his blood.  All his vitals including his temperature were all within the normal range.  He looks good.

Zena, our housekeeper, came in her mask today.  It is expected that the patients will enter neutropenia today or tomorrow.  She will clean every day now using special disinfectants to assure our apartment is as clean and germ free as possible.  I also have my anti-bacterial wipes to use during the day and my Lysol spray and cleaner.  To wash the dishes, I am adding Clorox to the water to assure we are killing germs.

I got hold of EZ Cruizer, the maker of Doug's wheelchair today in Los Angeles. They were very helpful.  I sent them pictures of the probem.  They reminded me of the toolkit that I had put in the bag under the chair when we got it. They are express mailing the part we need and I will be able to fix the chair with the toolkit.  Whew!  Doug is very relieved.  I should be able to have it fixed by the end of the week.

We left for the clinic at 12:30.  It was funny to see everyone including Angel in masks.  Kirsten, one of our patients was not with us, we learned that she had not been well and was taken to the clinic in the morning.  Apparently she has suffered a relapse. They placed her on steriods.  The doctors said this sometimes happens.  We all are concerned for her and praying for her.  The mood was very quiet in the van.  I think this is what some call the roller-coaster of recovery.  All are hoping to feel better, to be improving, but afraid it is not happening and of course everyone is still in recovery from all they have been through  in the last 2 weeks. I think everyone felt a little better after the doctor appointments. It was good for everyone to see each other.  Isolation is a little tough.

We met with Dr. Priesca for about 10 minutes.  He reviewed the blood work with us.  Doug has not entered neutropenia. Neutopenia means low neutrophil count.  Neutrophils ar a type of white blood cell responsible for fighting infections.  Due to chemotherapy, a reduction of white bood cells happens.  Normal counts are between 4,000 and 12,000.  Doug's were 5,600 today.  Two out of the 6 people in our group have not entered neutroprenia yet.

We returned home, took a nap and then had dinner.  Doug is resting now and continues to feel pretty well all things considered.  We are grateful to be moving forward on this journey.

Our prayer today:

Holy One, we give you thanks and praise for all who care for us and take care of us.  We thank you for a strong community that surrounds us and reminds us of your presense.  We thank you for the love that is sent to us and blesses us. We pray for our friends and companions, especially Kirsten and Suzie as they continue to heal.  We give thanks for the healing of Doug's cold and we pray that he will continue to experience healing in his body, mind and spirit. Continue to be with us this night, so that we may sleep, resting in peace.  Amen

November 20, 2016: Day +1

Today was a day of rest. It is the first day off we have had since we arrived.  We had no doctors visits and we did not have to go to the clinic.  We actually slept until 8.  That was nice.  Unfortunately Doug woke up with a cold and a cough.  This is very concerning, because of the chemotherapy that is reducing his immune system to near nothing.  I sent a text to the doctor and he said that the medication that Doug is taking is antiviral and antibacterial.  No need to worry right now.  Tomorrow he will have blood work done to check his white blood cell count and he will see the doctors.  We will know more then if there is anything else that can be done.  He sure does not feel very well.  He is very tired from the chemotherapy and stem cell transplant, however I think this cold is making it much worse.  I look foward to talking to the doctors more about this tomorrow. Getting this cold is very bad timing! Hopefully it won't become serious.

 I spent the day getting the house ready for Doug going into neutroprenia (an extremely low white blood cell count).That included washing sheets, towels, disinfecting counters, light swtiches and counter tops. Also it was the last day to eat normal food. I made a big pot of  homemade chicken noodle soup. From here out we will eat feeze dried food that can be reconstituted to assure that Doug eats the safest food which will limit his chance of eating anything that may cause him to become ill because the food was not cooked long enough or the chances of it harboring other types of risk due to pestisides, E. coli or other bacteria.

This is my last day to walk to the store for the next week.  We needed a few cleaning items and other food supplies for me mostly. I enjoyed the walk and mused about missing the opportunity this next week to do some more exploring.  It will be very strange to be in isolation in the house when it is 70 degrees outside. Each time I go to the store, I am amazed at all the items that you find in the stores here that you also find in any grocery stores in the U.S.  The fun part is seeing the items we do not have.  Like hard alcholol and other varieties of fruit.

I am going to close for now.  I ask anyone reading this blog to keep Doug in their prayers.  I am very concerned with him getting a cold right now, when he has such a limited immune system

Holy One, in your infinite wisdom you are doing more for us than we can ask for or imagine.  We thank you for the positive response that Doug has had to the chemotherapy and stem cell transplannt. Be with him now as he struggles with this cold.  We pray you will continue to heal his body, mind and spirit and bring him to new health.  In Christ's name we ask it. Amen

November 19, 2016: Happy Stem Birthday Doug

Today we woke up with great anticipation.  Doug was getting his own stem cells back today. The healing can now begin. We had all morning to  slowly wake-up, have breakfast, get some laundry done and then go to the clinic at 1l:30.

Everyone in our group was filled with anticipation.  Even though the patients had been through a horrendous few days, they were ready for one more procedure, filled with the hope of new life, and healing.

While we waited for the procedures to begin, we took the time to take pictures with our drivers, our supporters, that have helped us to navigate the health care clinic, getting us groceries and showing us Puebla.  They have really attended to our needs.

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We are so thankful for Dr. Priesca.  He placed the PICC lines, conducted the apheresis (the stem cell harvesting)  and giving the patients back their stem cells. He is very kind, warm and caring.  He is someone you want to know and he was most gracious to take the time to take a picture with us.

Then one by one, the patients were called into the room for the procedure that lasted about 30 minutes.  It was a ladies first day.  All the women were called back, then Daniel and finally Doug.  It was an emotional time for all of us.  We cheered each patient on as their name was called. And clapped and cheered as they returned. Finally, after much anticipaton it was Doug's turn.  I went back with him, and was with him as he got up on the table.  And then Dr. Priesca brought out Doug's stem cells, I asked him if we could bless his stem cells before they were returned to Doug.  He said yes.

Earlier today I wrote a blessing for the stems cells on my tablet.  I took out the tablet, laid my hands on the stem cells and prayed:

Almighty, Creator God,

We approach this moment with great expectation and hope for new life
We ask your blessing on these life giving stem cells,
We pray that as they enter your servant Doug,
that they will move through him, heal his body, his mind and his spirit.
With your onipotent power we ask you to re-create him, and make him whole,
so that he might serve you, love you and take his own healing to others.
May it be so, Amen

There has been so much leading up to this moment, that when the time came for me to speak, tears came to my eyes and my voice shook.  I looked at Do ug and we were both overwhlemed with emotion. We want this healing so much. Finishing our prayer, the doctor then asked me to leave as they took his bag of stems cells and attached the tubes to his PICC-line to allow all the cells to return, to their new home.

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Thirty minutes later, I turned to the sound of Doug coming down the hall in his chair.  His face was so full of emotion.  We both began to cry.  The rest of our group, let out a cheer and I turned to them and they all were filled with emotion and the tears came.  Kirsten said, just let the tears out, let it all out.  I am not sure I can let it all out, there are years of tears to cry, for all the sadness, losses, and difficulty of the past years.  But finally, finally there is something that could change it all.  Finally there is hope.

And then we all loaded into the van, to go back to the apartments.  The patients were going to take a rest while the carers went shoping for a meal to have with the birthday party for all of our MS Warriors.

Angel our driver agreed to make dinner, He prepared a delicious pasta dish, with cheese bread, pizza and ceasar salad.  Followed by a delicious birthday cake and more pictures. This will be a time we all remember.

Life  is funny, it can be something of a double edged sword.  It seems when you are in the middle of something wonderful and amazing, there can also be something very earthly and distracting g. That happened to us today.  We have been having problems with the toilet in the master bedroom all week.  They were suppose to replace it yesterday since they have not been able to fix it.  It was not done when we got home.  I called outpatient services and they promised me it would be done this morning.  And as we were leaving this morning the plumber was arriving. I felt hopeful.  Then when we arrived home it was not done.  They were just placing the toilet.  Then when we were getting ready to leave for another patients apartment for the party at 4:00, they were getting ready to seal the toilet.  We got home around 6:30 and there was no toilet and no plumber. Just as I was getting ready to call outpatient services, the plumber showed up with a new toilet.  The last one broke.  It is 8:30 and we may have a toilet soon.

Then on the way to the party, there was a big step, the security guard was going to help Doug get up the step with his chair.  He tipped the chair way back and the back broke. Now, when Doug leans back the chair collapses.  He can't use it.  Temporarily we have a chair to use from the outpatient companty.  Doug is pretty disappointed about his chair.  I will contact the company in the US on Monday.  As it turns out we are are now entering a time when Doug will not have a strong enough immune system to go out. He can't be around others and so we will be in our apartment for the next 7-10 days except for trips to the clinic. Perhaps that will give us the time to get his chair fixed.

But today is not about the trival things in life that can be fixed.  It is about new beginnings and new hope.  It is about a procedure that has the possibility of not only making people better, it is about saving lives.

And so we pray:

Holy One,
Thank you for this long awaited day.  Thank you for the hope of new life. Thank you. Thank you. Thank you.  Thank you for the gift of friends and family that have held us in prayer and given us strength.  Thank you for the help from our family, friends, co-workers  and doctors in caring for us and our responsibilities at home.  Thank you.  Our hearts are full. Amen, Amen, Amen.

November 18, 2016: Day -1

An Empty Bottle
Chemotherapy is over!

Last night, we did not get home until 9:45.  We had a little snack and headed to bed.  4 hours of Apherisis, stem cell harvesting, and 5 hours of chemotherapy make for a very long day.  We got up this morning ready to go again. Doug awoke early.  I dont know if it was because he is anxious or because of the steriods that are given to him as part of the chemotherapy for managing it's side effects.

Angel picked us up at 8:30. Chemotherapy was to begin at 9:00. We are a funny group getting our of the van and heading into the building. We have 4 people in wheelchairs, one person with a cane and a carer's arm and one person with just a carer's arm.  The beauty of our group is that this is perfectly normal and everyone is so comfortable with each other. Upon getting out of the van at the clinic, everyone made it up to the second floor chemotherapy room and settled thenselves down into their chairs.  Each one in the group picked their chair last week with the first round of chemotherapy and have stuck with it ever since.  The same is  true of where we sit in the van.

Everyone was doing well this morning, even though yesterday had been such a marathon day and fairly difficult.  We are ready to go.  The day began with gentle banter as we settled in. A couple of us had forgotten water bottles for the patients.  It is important to drink 3 liters of water in 24 hours with chemotherapy to minimize the side-effects.  We stayed with the patients, our loved ones,  until everyone was hooked up.  Then we headed down the street to a little corner grocery to pick-up water and some gatorade. On the way back we stopped at an organic coffee shop and picked-up a couple of delicious breakfast pastries andd cappacchinos. Yum!  That really helped to get our day started.

Our chemotherapy room with half of Group 1

Then for the next 5 hours we settled into our individual routines, drank liquids and helped the patients to the bathroom. Doug teased "I never thought it would take 3 people for me to go to the bathroom!".

It is like a parade, helping people get up, into the wheelchair, hanging on to the chemo cart, and helping with the wheelchair.

The other half of Group 1

Group 2, started Apherisis, stem cell harvesting, next door to us, while our group was getting chemotherapy.  We had the opportunity to encourage them, and tell them they had this.  We were all glad yesterday was behind us.  Last week the first days of chemo had us nervous.  Today, we know that this is accomplishable and it will be ok.

One of Chemo and Home nurses

Dr. Ruiz, the owner of the clinic and lead hematalogist, who developed the Mexican Method for HSCT has come to see us every day.  This morning he came in to greet all of us.  Stopping to shake hands with everyone, asking how we are,  and asking if we need anything.  He is very positive, warm and caring. I really respect him.  Everyone does.  He will be with us tomorrow as well, when the patients in our group get their stem cells back.  This is a HUGE day for everyone, patients, doctors, nurses, drivers and Dr. Ruiz.  This will be the beginning of the patients new lives and the end of the MS, God willing.

So today, we arrived home about 3:00.  Everyone was ready for a nap.  No one was sick, but all are ready for tomorrow. And Doug, he is doing really well.  His color is good, he is not sick and he can't believe that we have come this far. He has hope.

I am hoping that everyone feels ok tomorrow.  We learned with chemotherapy, that sometimes you don't experience the side effects for a couple days.  We will see.  I pray that tomorrow everyone feels good.  We will have birthday posters. pictures and a celebration at the clinic.  Then Angel is going to make a light lunch for everyone and we will have a birthday party and birthday cake.  

And so we pray:  

Holy Lord we give you thanks for the resilance of the body and for the spirit of hope and resurrection in your people.  We give you thanks for the torch bearers in our lives that  help us to see the path, to give us light in the darkness and who lead the way.  We thank your for Dr. Ruiz and all of the doctors and nurses at Clinical Ruiz.  We thank you for inspiring in them a vision of healing and a willingness to give of themselves to improve and save lives. Holy One, we ask you to  be with us this night, comfort those with side effects and fill us with joy as celebrate a new day.  Amen