Monday, September 17, 2012

Stem Cells for Poppy in Mexico

I hope Joanne will not mind me copying her Cancun post regarding Jim and the Stem Cells procedure performed in Cancun this week.  She writes so eloquently and knows better than me what took place while they (Jim, Joanne, Coby and Ben) went to Cancun to help our sweet Poppy.  

These are her words...and I have thrown in a few pictures too.  

Home From Cancun
(this might take a while)

We began what we've named our 'MEDI-CATION' to Cancun on Sunday, September 16th!  We were greeted at the Cancun Airport by our new friend Rudy, the medical coordinator for the Advanced Biocellular Clinic in Cancun.  From there we were transported directly to the Iberostar Pariso Beach Resort on the Mayan Riviera - our home for the week.   
Here is the room they stayed in. 

MONDAY morning Oscar, our driver, picked us up for our first appointment at the Clinic, where we were met by Dr. Alan Kadish from Oregon (President of World Stem Cells, LLC) Tony a biochemist, Jose, an associate MD and of course Rudy.  The clinic was quite small, consisting of an office, an exam room and a lab; all very clean and new. 
After Jim's initial exam and blood work up, we were given the agenda for the week, signed papers and were back at the resort for the afternoon. 
 TUESDAY morning, back at the clinic, Jim was given injections of a drug called 'Filgrastram' to stimulate white blood cell production; something which apparently helps the stem cells!  After just a couple of hours we were again, back at the resort.   
WEDNESDAY we were taken back to the clinic (this is about a 25 minute drive both ways) where we met Dr. Obleitt, the Oncologist.  While the boys and I waited, Dr. Obleitt gave Jim a local anesthetic in his hip and extracted stem cells from his bone marrow.  (This sounds intense, but Jim said it was just more of a weird sucking sensation; uncomfortable but not painful).  With the lab right in the clinic, the biochemist Tony prepared the stem cells for separation by spinning out the bone marrow! (this is my un-techy explanation)  From the clinic we drove a few blocks to a hospital (older but still very 'better housekeeping clean'), where an anesthesiologist did Jim's lumbar puncture and injected the stem cells. (also with just a local anesthetic)  Since you can apparently only take out so much spinal fluid out at a time, only a minute number of the stem cells were injected directly back into the spinal column and the remainder were given to him through an IV in his arm.  They were very pleased with the number of stem cells (750 million per cubic centimeter) that they were able to obtain from the extraction.  It was thrilling for me to be able to see these tiny cells in an enlarged picture.  Our bodies are truly amazing and complex systems; way too miraculous to be a random happenstance.  The whole procedure took less than three hours and after Jim spent a little time in recovery, we were again, on our way back to the resort.  
THURSDAY consisted of a visit with a physical therapist who gave us some exercises for Jim's limbs as well as some for better breathing.  After a final visit on FRIDAY with Dr. Kadish and his team to make sure Jim was doing well enough to leave, we were taken to the airport and on our way back home.

DETAILS: (that make a story come alive)
In retrospect, we are grateful to have had this opportunity and, although we know that in Jim's present condition, the chances for positive results are small, we feel strongly that we made the right decision in going forward.  We were told not to anticipate results; to "just let then 'happen" but to observe anything that might indicate positive changes.  We appreciated the enthusiasm of Dr. Kadish and his team that the procedure would indeed, produce some.  Dr. Kadish was also very good at keeping in touch each night while we were in Cancun and I'm sure will continue to stay in close contact over the next several months. 
The day after the procedure, the boys and I noticed that Jim's voice was stronger (it has become a bit raspy and quiet).  However, Jim did get a pretty terrific spinal headache which stayed with him until we left Friday, leaving him feeling less than spunky.  

WHAT DID WE DO WITH ALL THAT TIME IN BETWEEN?  Well, at an 'all inclusive' resort there is always 'food'....and we did partake. 
There was also a lot of wonderful sunshine and the warm Caribbean provided a most therapeutic atmosphere. 

The boys and I were even able to get Jim into the pool.   
 At first it was a bit claustrophobic for him but we figured out a way (minus the life jacket) to do some exercises and enjoy a relaxing float.   
Our sons were completely indispensable to the whole adventure.  Coby took over the roll of organizer, putting our hotel and flight reservations together in a couple of days.  He also played 'Jim', bringing order without panic to our daily routine.  He knows where to go and what to do and we were completely at ease knowing he would make sure everything went without a hitch.    
Ben, although also a very capable companion and caretaker, played the roll of our 'comic relief', keeping us entertained, laughing and enjoying the moment.  Both he and Coby were right there to help transport Jim from wheelchair to van to chair to pool to bathroom to do whatever necessary to make things more comfortable for both of us.  Their help at night was a complete life saver.  Being without our auto-bed (with the head and foot lifts), they each took turns being with me for all the 'ups and downs' that transpire during the night.  I truly couldn't have managed any of this without them.  Besides that, I know they really enjoyed being able to help Jim and I and to be with each other for a few days.  Any of our children would have done the same, but we feel blessed that Coby and Ben were able to take this time from work and family life. Thank you to our sweet daughters-in-law who encouraged them to go.  We are truly blessed with a beautiful family!

After a long and stressful evening of air travel, we arrived home at midnight Friday and were only in bed a few hours before Jim was awakened with a bout of pretty intense diarrhea.  This has definitely set us back a little bit, as it really took the wind out of some pretty worn sails.   Sunday was pretty much a down day, but as of Monday he was feeling mostly better and as of today, his voice again, seems stronger!  However we've been concerned that recently he has been experiencing some shortness of breath, indicating a weakening of the diaphragm;  a part of this horrible disease that we have been dreading.  This has been coming on for a few weeks, but with a weakened system, seems to have been enhanced since the trip.  Having not been seen at the neurology clinic at the U of U for a few months, I called the nurse there Monday who recommended a respiratory therapist to us.  Darrin (the therapist) immediately responded and came to our home last night, introducing us to a 'sip and puff' machine that has helped many ALS patients from eventually going to a ventilator or from having the dreaded tracheotomy.  It consists of a tube attached to an air pressurized  unit that you can just 'sip and puff' air from whenever you feel you need to expand your lungs.  It it not something that you are 'hooked up' to;  just used as a 'relief' mechanism for getting better and fuller breaths.  Jim has used a C-pap machine at night for several years now, but this machine also doubles as a Bi-pap at night and could help give him a more relaxed and better sleep.  We're playing with it for a few days, hoping that it becomes a 'natural' device to use.

This brings us to Tuesday, September 25th, a new day (which every day has to be)!  We remain ever hopeful that the stem cell therapy will bring about some positive changes.  Dr. Kadish indicated that even little changes could eventually help get us into a 'holding mode', something that we would love to experience.  As we were cautioned, "don't anticipate - just let it happen".!  So it would be best not to 'ask' if anything has!  Believe me, WE WILL LET YOU KNOW!  The results could come anytime between now and three months down the road. We would LOVE ANY TIME....down the road!  
In the meantime, the 'melt-downs' happen and the reality is that our faith has to be in the Lord and His plan for us. We have had so many wonderful  blessings come to us through your love and generosity.  A new 'raised' toilet installed recently by dear friends!  Jim's sisters who had the Rich family design individual wooden hearts to to hang from a tree which greeted us upon our arrival home.  (The sentiments were so tender I couldn't even read them aloud to Jim!  It still adorns our front porch and we call it our 'Tree Of Life')!   Friends who show up with pre-made concrete steps for your garden garage entrance!  Neighbors who send yard workers to do the lawn, sisters who send cleaning ladies for the house, family members to help with physical therapy.  Daughters-in-law (and daughter) who bring in dinner weekly, sons ready and willing to drop everything to assist when needs arise!  Friends who remember we need to .... have fun and get out!  Treats left on the porch, grand children's chalk 'get well drawings' on the driveway!  Handmade cards from our family's little ones!  Our names being constantly added by so many of you to the Temple prayer rolls, prayers and more prayers.... and it goes on!  Bless-ed EVERYONE who literally lift us and help to lighten our burden!  How could we manage without each other.  

Faith, hope and charity; they take on new meaning through our trials.  
I LOVE all the peacocks....a bird that will forever remind me of Joanne (she does the best Peacock impression "HELP") and if you look closely you can see all the little bubbles or little dots of light.  I ALWAYS say that those are angels.  I know my little Jack wasn't far from them this trip.  I pray with all my heart every single night that Honey and Poppy will find relief from this despicable disease.  There is nothing more humbling than when Corbin PLEADS with the Lord to help his Poppy get better.  I makes me cry every single time.  Corb and Poppy have such a strong bond and I pray, OH I PRAY that it will continue for many MANY years to come.

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