RICH FAMILY "HALLOWEEN-ER"

'Random Sack' costume competition!

Glow-stick Ghost Balloon Scary Storytelling!

 Scavenger Hunt   

'Scary' Witches Brew demo! 

Marianne made Jim's 2012 costume - The 'Wheel'-mobile!

"It' a Mad, Mad, Mad, MAD World"!

or....'Testing, testing, testing!'

October has flown by like a witch on a broom.  And in this scenario, I believe I've been the 'witch'!  Yup - my 'accentuate the positive attitude' flew out the window on the broom with me this past week, as I just decided to be M-A-D!  A review of my 'drama' probably would not serve anyone well, but I hear in good journal keeping, you gotta post the hard with the great!  So - for all of you who may think my attitude is just too 'amazing', this will make you feel better!
It all began with our regular 3 month check up at the University of Utah ALS clinic, where Jim and I received more 'revealing' and 'distressing' news about what was to come with this devastating disease. (Dr. 'Dread' strikes again).  Trigger in place, I began my journey of MADNESS!
First and foremost, I was MAD at this horrible disease for taking up home in a great and worthy guy like Jim.  MAD at anyone who wanted to give me any advice or tell me they knew how I felt.  (How the heck did they know, anyway)!  MAD at anyone who would asked Jim 'How he was doing!  (How do you THINK he's doing?)  Mad at everyone who was WALKING around acting like life was normal and GREAT!  Mad at those who DO get Miracles!  Mad at couples who were walking hand in hand!  MAD at prayers that seem to have gone unanswered (I know, this is getting REALLY BAD)!  Even Mad at God for allowing anyone to suffer like this!  Yup - I was a perfect 'test case' for the adversary..... who 'a conquering came'!  I just got to the point where I needed to BLAME SOMEONE for this whole sad situation we've found ourselves in.  Well, after over a week of trying my very best, it turns out there just isn't anyone to blame!


Then wonder of wonders - some relief from the 'madness'!  Our son Bob called saying he was coming in from Sacramento as a bit of a surprise, smack dab in the middle of my horrible week, bringing more of our choicest blessings; two year old Duncan, two week old Charlie along with (of course) Mom Sara.  Being the 'gatherer' I am, I immediately threw myself into 'party mode'.  After all, I've missed FUN!  I used to be FUN!  So we ALL gathered last Friday night for a fantastic 'HALLOWEEN-ER'!  (pictured above)  This 'party' was going to be full of everything I've ever wanted to do at a Halloween party all in one fun-packed evening).  Ok - I probably pushed the envelope, beginning with a 'witchy' (appropriate for my week) witches brew demonstration and dinner with home-made autumn stew!  We followed that up with sugar cookie frosting, trick or treat scavenger hunting, glow-stick ghosts (making ghosts out of blown up white balloons with glow sticks inserted in them), scary story telling in the dark with the 'glow-stick' balloons, bobbing for hanging donuts, dress up 'sacks' (put together a costume out of what you get in the sack) with awards and a grand finale movie with caramel corn.  Our creative daughter Marianne also designed and built a car to fit over Jim's wheelchair which we named the 'wheel-mobile',Jim's Halloween costume!  It was a 'late-night-er supreme' and I think my grown up children thought maybe I'd lost a screw...or two!  But....the grand-kids had a GREAT TIME and hopefully it will be a new Jim Rich family tradition.  

We all gathered again Sunday afternoon for a hike around Silver Lake at Brighton and a Monday night FHE, complete with all our children gathered as Jim gave me a wonderful blessing of comfort and faith to go forward.  This was followed by our 4 sons and favorite (only) son-in-law giving a 'priesthood-packed' blessing to Jim, offering him hope and courage to sustain him in the coming months.  Words of love for all of his wonderful 'fathering' followed; a happy conclusion to an otherwise miserable week!  If BLESSINGS are MIRACLES, we've had more than our share!

Jim and I also re-read our Patriarchal blessings together last week, with emotions flowing!  Jim's was as uncomplicated as he is.  A perfect and simple explanation of the faithful, valiant person he is!  I paid particular notice to the warning in mine to pray often, that the 'evil one' may not have power over me!  I also paid notice to a blessing that I would have the opportunity to 'hear, in audible tones', the voices of angels.  Surely 'angelic tones' are musical!  This past week (and often before)I've recognized that MUSIC will pop into my head (even out of a deep sleep) as a 'voice' of comfort to me when I am seeking help!  This week it was the 3rd verse of "How Firm A Foundation" (which I woke up thinking of).  We hadn't sung it in church - nor had I thought about it the day before!

"Fear not, I am with thee, oh be not dismayed, For I am thy God and will still give thee aid!  I'll strengthen thee, help thee and cause thee to stand, Upheld by my righteous....omnipotent hand"! 

 So, If you haven't noticed, I'm better!  I don't think anyone knows that life is a TEST until they are... TESTED.  "Hello Joanne; are you listening?  Testing, testing, testing!"

  

IT TAKES A 'HEAP OF LIVIN' !

When things weren't going quite as we'd planned, My Gandpa McMullin used to say "well, it takes a heap of livin!'" This never made too much sense to me until recently.  Now it seems perfectly clear, as we move daily through our 'heap' in this process of living with ALS!   

Catch up!
At this point, we haven't seen any noticeable positive results from our stem cell therapy in Cancun.  Still, we are every grateful we were able to have the opportunity to go and 'try' something that we might have always wondered about.  We may yet see some leveling off; our great  hope!  Last week it was suggested we try some power-packed vitamin IV's and injections of Clutathione,; a strong antioxidant!

In the meantime Jim is daily using his 'sip and puff' machine when needed, which gives his diaphragm relief during the day.  He is still awaiting the re-do of the wheelchair we were gifted, but in the meantime uses a loaner, being able to operate it with his still somewhat usable right hand.  He is able to stand up and move several steps with the use of a walker, but spends the majority of his days on his shrinking derriere, which is pretty tough since he has now lost nearly 40 pounds.  My efforts to stuff him with calories is challenged by his insistence to stay off wheat and dairy products.  My guess is that Jim was, unlike me, mostly MUSCLE when this disease began, and this is where most of his weight loss has been. 

Jim says he couldn't do without me, which may be true these days.  But I figure I owe him pretty BIG for taking such good care of me for 36 years.  Taking care of ALL the finances, cars, fixing broken things, explaining directions on - well, pretty much everything except recipes, internet tutorials, carrying my suitcase so I wouldn't drag and ruin it, doing things with 'patience' so I didn't ruin them, math with the kids, explaining movie plots (much to his dismay) and a myriad of other little things my wee right brain didn't think possible.  I have truly been the beneficiary of much tender love and calm assurance through the years.  The best thing is that Jim has always shown his affection towards me outwardly, which has been a great example to our children.  This new task of mine is, yes, exhausting!  So I take naps when I can ('a good soldier sleeps when he can' - something my Dad always told me) and try to keep variety and a little 'spice' in our lives.  We were able to go to our family home in St. George this past weekend with our daughter Marianne and her family and it was a good break from the routine.  Truth be told, we have some really bad days and major breakdowns on a regular basis.  But happily and amazingly there always seems to be something to 'lighten the load and brighten the road'!  The kids (and their kids) drop in often to see 'Poppy' and bring treats and always bring plenty of hugs and kisses.  We have been 'Richly' blessed with our family! They all truly add light to our lives these days!  In addition, a friend drops by to visit or a loaf of zucchini bread lands on the porch or a sister (brother, friend, neighbor) lends a hand, giving us a much needed break!  We even have a family schedule for regular physical therapy sessions with Jim!  Again - not BIG miracles, but mini ones!  

Speaking of.....this morning we had a visit from cousin Doug Rich and his darling wife Linda.  They have always been favorite Rich cousins of ours. Recently, on a routine visit to the doctor in preparation for he and Linda to go on a mission, they got the bad news that Doug has terminal prostrate cancer.  Doug has been wanting to visit Jim for some time, but we were particularly blessed that he and Linda choose to visit us now.  As Doug told us of his experiences as a stake patriarch in Provo and feelings of closeness to the veil he has experienced giving blessings over the years, we were amazed and uplifted.  He told us that he is completely at peace with the prospects that lie ahead for him; that he knows that the Lord loves us so much and truly wants the best for each of us.  If something is better for us on the other side than here, He knows and we need to trust that He wants what is best for us!  Doug and Linda's faith was not only inspiring but an answer to our constant prayers, as 'fear' of the unknown road lies ahead for us!   This is uncharted territory and we SO need the faith and strength of each other to carry on.  Under Doug and Linda's circumstances, their visit today was both extraordinary and exemplary.  We send our gratitude, prayers, and special love to them and their family as they also face their heavy new and life changing challenges.  

Yup.....'It surely does take a HEAP of livin'!                             
 

The RIches have a 'MEDI-CATION' in CANCUN!

 Coby and Ben came along to help!  We think they enjoyed the 'ride'!

 

Jim looks great, yes?  And when he's great - I'm great!

 

 The Cancun Advanced Biocellular Medical Team and...US!

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.  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 bed...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!

DIPS IN THE ROAD:

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.

MOVING FORWARD - AS ALWAYS!

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.  

There are 'RICHES' to be found in CANCUN!

Cancun with our children and their spouces

November 2011