One week Before We Leave

October 28, 2016
It is hard to believe that it is only one week before we leave for Doug's HSCT treatment in Mexico.  This morning we had our last Skype session with Danielle from Clinical Ruiz to go over all of the last minute details and to answer any lingering questions we might have.  We have done so much research on the clinic and the process since we started this journey, that I could not think of anything else to ask.  We have arranged travel from the airport in Puebla to the Holiday Inn where we will be staying Friday and Saturday before moving into the apartment. The Medical Outreach team that will providing for our needs while we are here that includes the apartment and transportation.

Today I will arrange for phone services while we are in Mexico and see if I can get pesos from the bank to assure we have some money on hand when we land.  I am starting to pack to make sure that I don't forget anything at the last minute.  Yesterday I went through all our prescriptions to make sure that we will have all the pills we need while we are gone. I have put a vacation stay on our newspapers.

I still have lots to do before we go, like buying dog food and treats for the month and finding homes for all our plants.  We can't have any plants in our home for 6 months after returning home. I need to put a hold on our mail, get phone coverage, order an air purifier, clean out the fridge ....  The list keeps getting longer than shorter!

While we are gone we have to have the house cleaned and disinfected.  The carpets need to be cleaned and sanitized. I made those arrangements today. When we get home we will need to sanitize continuously to assure that Doug does not catch anything since he will have a very limited immune system for 6 months to a year.

The final thing today is that I want to record Doug walking and getting up from a chair.  I want to be sure that we record where he started this journey at and the progress he may make after his treatment.

We of course are praying for a miracle and hope that not only will we end his disease but also that he recovers some skills that he has lost. 

My friend Scotti tells me that not all pilgrimages need to include struggle.  I am hopeful that there won't be too much struggle as we take this journey.  The one thing I do know, that even if there is struggle we are up to it.  We are so excited to have this opportunity to finally stop the progression of Doug's MS. Words cannot express how grateful we are for all who have helped us, to make this possible.  Thank you!

And thank you all who are praying for us.  We feel lifted by your prayers and ready to make this trip!

 

 

Oktoberfest

 Oktoberfest Fundraiser

October 8, 2016

Wow what a night! With the help of St. Stephen's parish, good friends and family, we had a wonderful Oktoberfest fundraiser . With chief cook Walt Cook , organizer, Sherry Barrett, basket facilitator Kate Malone, reservations and table decorations Ingrid Sitton, band Tom Kicmol and electronic payment and reservations Angie O'Shea we had a wonderful night. Thank you as well to Peligan Pub who provided our beer.  It was delicious! I cannot say thank you enough for the generous help in the bar, kitchen, basket donations and quilts. This is really a wonderful parish.  The help, warmth, support and love was incredible.  We feel ready to do this thing!

Our Team

 

It was so much fun to spend time with so many good friends, both new and old.  We are so thankful for all that attended. Our final count for the amount that we raised is $5,600.  And many friends who were not able to attend have sent us checks coming to nearly $1000 more dollars.  Our total donations to date are $29,000.  We are incredibly grateful.  We are almost half-way to our goal

Preparing for our Camino: The Great Endeavor

St.Stephen's Fundraising team  planning Oktoberfest

 The Mexican Camino begins...

We are calling this our "Mexican Camino"; our path to healing. Our dear friend Scott Sherman is calling it "The Great Endeavor".  Having walked the Camino de Santiago de Compostela, a 500 mile pilgrimage, in northern Spain 2 years ago, this surely seems similar.  It is a great endeavor!  We are praying that Doug will be cured of MS; that the progression of the disease will end and God willing, he will get some function back. Like my Camino in Spain, this is calling for a lot of preparation, planning, faith and hope.

When I began that Camino, I prayed with each step that Doug would be healed and that he would walk.  I prayed too that others with auto immune disease would be healed of these dreadful debilitating illnesses.  Since that pilgrimage I have made 2 more.  The last one was with Doug.  We flew to Rome, walked or rolled in his case, where the disciples walked. Then went on to Crete, praying at a shrine of the Virgin Mary, a place where others have been healed.  Then on to the ruins of the old city of Ephesus, praying at what is thought to be the small home where Mary, mother of Jesus lived after he died.  Then on to Istanbul to pray in the Hagia Sophia, the Byzantine cathedral. And finally ending our travels in Athens before returning home.  It was there, the night before we left that my son-in-law Tom, sent me the research on HSCT and more specifically a study that was just published in Canada.  The study chronicled the treatment and the "cure" of 12 people with MS who were treated in the early 2000's and their progress up and until today. All but one, had their disease stopped and most regained skills: some from wheelchair to walking and some from home-bound to working.  This is what we had prayed for.  Ending this disease and giving the body a chance to heal.

Returning home last June, I immediately contacted our neurologist to get his opinion on HSCT.  With care and concern for Doug, our friend, our neurologist, supported our decision to seek HSCT treatment. And then I joined Facebook for the first time, because I learned there were a number of forums on HSCT.  I contacted Seattle and Chicago to see if it would be possible for Doug to be included in a clinical trial.  Upon contacting Seattle we found out the cost would be $400,000 dollars and that insurance would not cover it. Then contacting Chicago we learned they would not include anyone over 55.  And so I turned to Facebook forums.  We learned that Mexico, Russia, Italy, Israel and the Philippians were excepting international patients.  With much thought and discernment we decided on Mexico because Dr. Ruiz, a Mayo trained physician, well published and well respected had an excellent reputation and it was affordable.

We applied to Clinical Ruiz in July and learned we were accepted with a date for treatment in May of 2017.  And then on September 16, we were notified that there had been a cancellation and that we were accepted for Nov. 7, 2016.  Oh my, things were moving so quickly, but we had to say yes.  Doug's disease is progressing so quickly that time makes a real difference for him.  And so here we are, hurrying to figure out fundraisers to help us pay for this treatment that will not be covered by insurance and hurrying to send all the information that was required to Clinical Ruiz in Mexico.

Things to do:

1. Copies of passport and proof of residence
2. Current MRI of the brain, cervical, spine and lumbar 
3. Doctors appointments to to obtain orders for the MRI and to assure Doug's doctors would care for him once he arrives home after treatment.
4. Booking airline tickets and making reservations for a motel in Puebla until our apartment becomes available.
5. Fundraising and arranging funds
6. Preparing to be away from work for 5 weeks: writing grants, scheduling meeting, finishing budgets...
7. Assuring our beloved dog Stryder is cared for while we are gone

I can only say we have had angel wings carry us these past few weeks.  Wendy Johnson, Kuna Superintendent and friend, has been completely supportive and not only helping to find ways to fund raise but also giving me time to be away, with hiring a sub for me while I am gone.  The district Cabinet pulling together, making plans on how to move forward so that the whole Kuna School District is behind us.  Then a remarkable group of people at St. Stephen's Episcopal Church, Boise  surrounded us and took over with a fundraiser for us at St. Stephens and provided us tender care as we prepare for this Camino.  Then our dear friends at Grace Episcopal Church, Nampa have  come forward to co-plan a fundraiser with Kuna School District.  Meanwhile my dear friend Scotti Brownley has teamed up with our friend Ann Lapiccolo to visit churches in eastern Idaho that we attended and served at to help us raise funds.  Friends on Facebook and in the community came forward and pledged to our account at HelpHopeLive and gave us personal checks to help us make the payment in September for the treatment. And I am thankful to our bank, that gave us the loan for the money that we needed to make up the difference between what we had in savings and what had been donated to make that payment to Clinical Ruiz.  Finally, I am thankful for our family, for sharing this journey with us and for their help along the way.

So much has happened so fast. But we are ready!  We are so ready to take the next right step, to begin this journey.  Everyone knows that half of the journey is the preparation.  I can tell you dear friends, we have so appreciated your support, your warm wishes, your hope, and your love.  You all give us the strength to carry on and God is blessing us on this Camino. We are very grateful.

Our support team:  St. Stephen's, KSD, Grace