Family

Fay and Craig’s Gala Talk March 31, 2017

In need of a liver transplant!

“A Mother held her new baby and very slowly rocked him back and forth,
back and forth. While she rocked him she sang: “I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.”

That baby grew and grew....as the famous Bob Munch children’s story goes, he grew into a 2 yr old, to become a young boy, a teenager and a young man who moved across town. But regardless of his age or whereabouts, every night when he was asleep the mother picked him up and rocked him back and forth and sang...I’ll love you forever...

Then one day the mom called her son and said I’m very sick!

March 22, 2015 will always be a milestone day in my life. I was rushed to the hospital with internal bleeding when a blood vessel ruptured in my esophagus, which rapidly evolved into a multi system breakdown. In just a few days we would hear the words: “liver failure” for the first time.

My liver failure was an evolution of cirrhosis, diagnosed 4 years earlier....the result of two autoimmune diseases that unknowingly attacked my liver for many years. Now 5 of my bodily systems had broken down in a matter of days. I spent almost 7 weeks in ICU like settings, being managed through some very complicated daily manoeuvres using 9 powerful medicines.

The conclusion was that I needed a liver transplant very soon.

With no cure for cirrhosis we understood that at some time in the future I may need a transplant....but why now? How could this be?

Our 18 year old equestrian daughter was right in the middle of trying to make the Canadian Eventing team for the Toronto Pan Am games. Our son in law was running for the Federal Government seat. Craig’s wife Heather was expecting their first child. My busy executive husband was leading a significant organization.

My main goal in life was to be a supportive wife, mother and friend, and here I was completely dehabilitated- letting everyone down--bedridden, being nursed through the nights with my husband tying a string to our wrists so that I would not wander to the top of the stairs in my confusion. I had aged dramatically in 3 months –and on many days I didn’t recognize my family as the unfiltered toxins hit my brain.

So I was at a precipice and without a new liver I could not live.

Craig........At the time, I was managing some our family businesses, so I was able to accompany my parents at my mom’s medical appointments. It
was through this that I learned about the opportunity to be a living liver donor.

I was excited to be the one selected to undergo numerous tests and procedures to determine that I was fit to donate my liver. It was an absolute honour. Once the team at Toronto General confirmed that my liver was suitable, in my case, I had a final step, which was to lose 40 pounds in 6 weeks.

For me, the decision was easy. There was really no cost to me, and, at the same time, it was one of the most fulfilling decisions of my life.

When I think about making this decision, I think it’s important to consider the life of the person or people you could save. Think about someone’s son or daughter, father or mother, brother, sister. What if it’s your family member or friend? Or could you imagine yourself needing a donation? What if tomorrow ended up being your milestone day? What if tomorrow you learned that your life depended on the generosity of someone else?

Most donors are not alive when their organ transplant occurs. But, in my case, I could not only imagine my mom’s need, I was right by her side witnessing and experiencing it. Because it was a living transplant, I have had the great opportunity to be on this side of the experience and to see how it has restored her life.

Whether you are there for that moment or not, signing up to be a donor could be one of the most critical decisions you will make that could lead to an incredibly fulfilling legacy. And, I would urge you to take this night to do just that.

Fay.....Many in our circle of friends and family prayed for a miracle. Well that miracle came for me through medical science and the brilliant minds of the doctors and nurses who could orchestrate a most amazing surgery and recovery process!

On August 5th – my 61st birthday – they removed 65% of Craig’s liver and transplanted it into me!

Here is an entry Don made in his journal the next morning:

“Fay spent a long night in recovery with some complications and just
arrived in the step down unit at 6:40 this morning. It was quite an
emotional moment when we stopped her bed at Craig's door and they were
able to say hi to each other! Craig had been restlessly waiting for some hours to see her go by and in her case she was anxious to see for herself if we were telling the truth that he was OK! The hall was quiet and it took a while for Fay's eyes to focus. But once she caught Craig's gaze she returned his wave and Craig wished her a 'Happy Birthday' and told her he was 'Glad She Was His Mom!' She thanked him for the incredible birthday present and even the heartiest of the nursing crew couldn't hold it together... then, off she went to her own team awaiting her in a room at the end of the same hall!

So now, every morning, this once sick mom, wakes up grateful to be alive!!

Life or Death:

In need of a liver transplant!

A Personal Message to family, friends and colleauges: May 6, 2015

Fay and I met in 1970 at Uxbridge Secondary School in our grade 11 year. On the 24th of this month we will have been married for 40 years having been in love for 45! We are fortunate to have lived all of this time in the incredible community of Uxbridge, and while travelling hundreds of thousands of miles over the years, would not want to have lived, nor raised our family anywhere else!

God has allowed us to have unusual lives with great blessings. We have 4 wonderful children (and their new families), participated in over 30 business start-ups, involved in a fantastic church, have worked with young people as church youth leaders and coaching hockey, and had the privilege to lead nationally in high impact organizations such as Canadian Baptists, Youth Unlimited, Crossroads Communications (producer of 100 Huntley Street) and Crandall University.

Throughout an active life we have been blessed with deep friendships on a personal level, and incredible relationships with colleagues and friends across the globe. We cherish all of you greatly. God has been our strength. In human terms the enabler of such expansive and demanding activities has been Fay, who has tirelessly led an active home life with high standards of care and excellence. She does not get the credit or public accolades she deserves, nor does she particularly desire them. But I thought this was a perfect time to give her those very things right now!!

As many of you already know, over the last 7 weeks Fay has suffered liver failure, an evolution of cirrhosis, diagnosed 4 years ago. Her cirrhosis was the result of two autoimmune diseases (PBC, AIH) that have been unknowingly attacking her liver for some years. The liver is so critical to our well-being that its failure has created difficulty for 5 of Fay’s bodily systems, (circulatory, fluid, respiratory, digestive and cognitive) creating quite the day to day challenges. We have spent 5 of the last 7 weeks in ICU like settings, and a constant daily re-balancing of her body functions are managed through some very complicated manoeuvres using 9 powerful medicines.

The conclusion is that Fay needs a liver transplant soon. We are grateful to report that the London transplant team has approved a "live donor” transplant as long as we can find a matching donor. This involves a portion of the donor’s liver being removed (where it grows back in a month or two) and transplanted in the recipient (where it becomes their new liver and grows to full size over a period of months).

Because Fay has a case of blood clotting in her portal vein, the London team would rather see the operation performed at Toronto General Hospital (TGH), Canada’s most proficient live donor liver transplant hospital, and where they have a superior specialty in vascular challenges like hers. TGH is in the process of finishing up tests they require to accept her as a transplant patient and then potential donors (our family members and gracious friends) will be immediately tested for their suitability. We consider this approval which is quite hard to obtain, to be a miracle in and of itself.

Several years ago our youngest daughter April set a goal to compete for Canada in the Pan American games which are being held in Toronto this July. She has just finished training and competing in Florida and remains absolutely focused on this goal. The final selection takes place on June 8th after one more International event in Bromont, Quebec from June 4-7. Fay is intent on making sure her situation does not detract from April’s determination and ability to achieve this goal.

Similarly, Shauna’s husband Jodie is running in the upcoming Federal election in a new Belleville area riding, and as a family are fully preoccupied locally. Craig and Heather have just bought a home in Hamilton and last week Heather started an exciting new job with World Vision. Brett remains busy in his music business. All of these things are the culmination of years of preparation.

Fay and I feel that even during this crisis, it is so important for the next generation to achieve their calling and dreams as much as possible! Now that we have obtained a clearer picture of what we are facing, Fay and I are implementing a plan for the next year specifically. It’s not the restful sabbatical we might choose, but instead a withdrawal from our normal activity level that will allow us to focus on Fay's well-being, stewarding this wonderful transplant opportunity, and enabling April's ambitions fully.

This requires an immediate change to our mode of operation. We must put ourselves at the beck and call of the medical system. Fay cannot drive anymore and has to have someone with her at all times. We are working diligently to find a matching donor. We also must take care that Fay does not inadvertently pick up anyone’s sickness……all in all, a total life change as those of you who know how we operate would understand. I’ve never felt right about holding a position that I can not give my best to, so, we will work this week on concluding various board roles, complete my assumption of our home management responsibilities, secure a live-in caregiver, and finish up various speaking engagements (while not accepting new ones), while limiting travel and social activities.

Our faith gives us the assurance that the One who created Fay is watching over her now, with the power to heal completely, whether through a miraculous restoration of her own liver or through brilliant scientific minds and hands (which He also created!) receiving part of another’s liver. With calm assurance in His abilities and plans for us, we also know that He does not always answer our healing prayers just the way we think may be best. We value your continued prayers for Fay’s well-being, including this next stretch of regaining her strength for the rigours of a transplant operation, along with finding the exact donor match required, and of course with complete safety and well-being for that donor as well. Thanks so much for your love and care for us.

Love Don and Fay

"I look up to the mountains; does my strength come from mountains? No, my strength comes from GOD, who made heaven, and earth, and mountains." Psalm 121: 1,2

Milestone #1: May 23, 2015

Dear family and friends,

We will update you from time to time while trying not to be a burden.  First, let us express our thanks to so many of you who have written, emailed, or called with your encouragement. Some of you even indicated your interest in being a donor for Fay if needed. It is a very humbling experience to be the recipient of such love.

We have spoken about 4 key milestones over this next year:

Milestone 1: Approval as a transplant recipient
Milestone 2: Finding a matching donor
Milestone 3: The transplant
Milestone 4: Recovery

We are very, very thankful to report that yesterday the Toronto General Hospital (TGH) officially approved Fay as a recipient for liver transplant. This is an answer to many prayers.  Interestingly, you may have seen that on Tuesday week this same group successfully conducted a living donor transplant for Mr. Eugene Melnyk, the owner of the Ottawa Senators. In his case, after family and close friends did not produce a match, a public appeal for donors was made and over 500 people responded!

Now that Fay is on the transplant list, finding a matching living donor is our most important endeavour. Of 12 family members and friends initially willing to make this sacrifice, 4 are matching Fay’s O blood type. We are so deeply grateful to all of you though, noting that whether your blood matched or not, your offer of help was the same! Upon finding out that her blood was not a match, one dear friend wrote in her subject line “heartbroken”.  Another couple recently asked “how can we get checked to be a donor”, but being a year ahead of us at school means they are outside the age range. Yet what friendships we have in our lives……

All four matching folks have already completed applications and submitted them to TGH. Because statistically only 1 in 3 matches have an anatomy enabling live donation, it would be helpful to have a larger number of donor possibilities at this point in the process. While we feel pretty strange making this intimate need known, finding a matching donor is the key next milestone at this point.

Our son Craig is managing the information flow for those that may be interested in considering being a donor. It is a huge commitment!  If you are interested in pursuing this, you can contact Craig directly at craig@faydon.ca He will send you a very comprehensive document that outlines the risks to a donor and what the process involves. It all starts with a blood match but there are some other parameters as well.  The age range is 16-60, and although we should not count anyone out, they tell us an age range of 25-35 is most preferred. This is interesting since we and our peers are in the higher end or even out of this range now!  At the hospital, the donor sector is distinct and separate from the recipient sector so that all donor applications are managed on a confidential and private basis. A series of tests are conducted to determine physical and emotional suitability, along with a close assessment of the donor’s motive. The testing moves forward one donor at a time, and if at any point a donor is found to be unsuitable, then the process starts again at the beginning for the next one. The candidates are ranked by the hospital for suitability from their experience.

In the meantime our priority is to get Fay as healthy as possible enhancing the chances of a successful outcome. She is making steady progress and her daily regimen is working fairly well. We also must continue to make sure she does not inadvertently pick up anyone’s sickness. So, we value your continued prayers for these days ahead.

For your interest and love, we are so grateful…we are not sure we know just how to express our thanks adequately enough!

With our love,  Don and Fay

Milestone #2: June 29, 2015

Dear family and friends,

This is Fay writing. It is a detailed update, so you may have to settle in for a few moments!

It is important for me to start out by saying thanks to each of you for all of your wonderful notes and emails of encouragement. Don and I ask you to accept our apologies for being unable to respond to them all (embarrassing!).  I am sorry to have created such a care for everyone and I am completely humbled by so many of you faithfully praying for me. As a result we can sense God’s presence and watch care through this interesting time for us. I just want to make sure that even if you don’t hear back from us, you know (through this email) just how grateful we are for your love and support.

Even as I update on my situation, I am conscious of a number of our friends that are facing even more extreme health challenges than me. Could I ask you to include them in your prayers anytime you pray for me!

By way of update, in our last communication we outlined 3 important Milestones:

Milestone 1: Approval as a transplant recipient
Milestone 2: Finding a matching donor
Milestone 3: The transplant
Milestone 4: Recovery

We are deep into the critical milestone of finding a matching donor and our son Craig has taken on the large task of working with those of you who have considered this profound gift of life. We have wanted to make sure this consideration was met with a solid understanding of the process and as a potential donor himself, Craig has been best equipped to handle this. Truthfully, even with such an engaged set of relationships it is a harder process than we had anticipated to get a matched donor.

At this point:

    • 40 people have expressed interest in being a donor (some of whom are ineligible due to age, etc).
    • 12 are known blood matches (must be O type), two of which are Craig and April from our family
    • 13 are in the process of determining their blood type
    • 8 full applications are in at Toronto General (TGH), but once the donor engages with the hospital, donor privacy prevails and we cannot follow the progress
    • TGH ranks the applicants and tests 1 at a time (about 4 weeks per donor) eliminating that donor if a test fails and then proceeding with the second, and so on.
    • Craig is the first applicant selected and has successfully passed his testing so far!
    • When a donor successfully completes all testing, they try and perform the operation in 2-4 weeks.

So these are important times. A liver transplant is an 8-10 hour operation (all things being well) — and one of the most complicated of organ transplants. We are trying to be in constant readiness. This includes both the ability to respond for surgery with a one-day notice, and also making sure I am as healthy as possible going into the operation.

On a day-to-day basis, as long as we stick closely to my “regimen” things are going pretty well. This includes sleeping twice a day, a very unusual thing for me!  I’m gaining some strength and have put on 8 pounds since my low of 94 lbs in April. In mid May, I developed a sore groin which kept me at minimal activity, and was eventually diagnosed as arthritis in my hip! Just another in a series of bodily breakdowns that seem to go with a faulty liver. We admit to only realizing how much work our liver does now that we have experienced what it is like when it is not functioning properly! I’ve encountered several other symptoms I have not had in the last 4 years- encephalopathy (a loss of cognitive ability) and extreme itchiness. While I continue to have some confusion daily, I am very thankful that the itchiness only lasted for about 2 weeks! No doubt an answer to your prayers again.

Don is my primary caregiver. I am deeply grateful to him, our kids, Grandma Simmonds and my close girlfriends who have come and stayed with me. They have all seen “the bad and the ugly” side of my illness first hand!

Being on the receiving end of a living donor transplant is a humbling experience and one that I have had to reckon with since my situation puts someone else’s life at risk to save my own. The stories of love are rich and deep. In one case, a long time friend found he was not a blood match. In response his 22 year old daughter expressed her willingness to assist if needed since her blood type was a match!  In another case, the son of long time friends expressed interest in being a donor even as his own mom faces a critical illness at this time.  The depth of love is incredibly meaningful and accepting such a gift has been a tougher road for me than I thought it would be. Watching how the hospital prioritizes the well being of the donor so very carefully, has also helped me come to grips with it.

During this time April not only graduated from High School (this past Thursday) but has shown tremendous poise during all of this to stay focused on her high riding goals.  We are incredibly proud of her as she was recently named as an alternate for the Canadian Eventing Team competing in the Pan American Games in Toronto July 16-19.  As an alternate, she is one of several riders that could be suddenly called into service in the event of an injury to a horse or rider leading up to the event.  Internationally ranked 8th in Canada April is also the only Ontario rider qualified for the North American Young Riders 2-star level competition to be held in Lexington, Kentucky the same week. This means she will be at one of these exciting competitions or the other and will focus on keeping both of her horses in top form.

One of my goals was to not let my illness be a distraction for April, and sure enough my emergency came right at the wrong time for her. An incredible group of supporters have surrounded her on this mission and helped compensate for my inabilities in all sorts of unusual ways to keep her in the game during my illness! Thanks so much to all of you.

So, while we try not to bore you silly with our updates, we hope you at least know where we are at.  We will update on Milestone 3 as soon as surgery date is known!

Once again, from the bottom of our hearts, thank you for all of your love and care.

Love Fay

Milestone #3: July 27, 2015

Dear family and friends,

We do hope you are enjoying the summer and getting time for some rest and fun!

Once again thank you for your many notes, thoughts and expressions of care. They mean so much to us. This note is to keep you up to date as promised, while not filling your inbox unnecessarily!

On Thursday, Craig learned that his last test (a liver biopsy) was successful making him the approved live donor. To think that the first candidate tested was approved is very encouraging. Fay and I are so grateful for Craig’s courage and diligence from the start and doing whatever it took to make the tests happen quickly. This included the loss of 30 pounds to make sure his liver was in top condition!

If the operation is successful, I am already concerned about my ability to keep up with Fay who will now have the body of a 29 year old!!!  Seriously though, there is no guarantee that Fay’s body will accept Craig’s liver so we remain appreciative of all those who remain candidates that could be tested just in case.

To recap, Fay experienced liver failure on March 22nd when she was rushed to the hospital in Ocala, Florida with internal bleeding. Since that time, we have been working toward 4 important milestones:

  • Milestone 1 (achieved on May 22): Approved as a transplant recipient
  • Milestone 2 (achieved July 23): Finding a matching donor
  • Milestone 3: The transplant (August 10)
  • Recovery (August to December)

The surgery date has been set for August 10th and Fay will go into the hospital the day before (Sunday August 9th). Craig goes in the morning of the 10th. Generally, the recipient is in hospital for between 7-14 days and the donor 5-7 days. Fay will stay downtown Toronto for a minimum of 2 weeks after release since she will visit the hospital almost daily to give blood, take tests and receive adjustments to the medications.

During the last 4 months, Craig has been the primary backup for our businesses and the knowledge surrounding mom’s medical condition. With both he and mom out of commission at the same time, we are establishing a team approach to our personal, business and medical support needs.

This includes a new plan that April has made to be at home more this fall, deferring the start of University, and take this year to try to be selected for the RIO Olympics next August. It is an ambitious plan requiring all sorts of qualification this fall. Yet, she and her horses are at a peak and it makes sense to try for it now rather than waiting 5 years. She remains inspired by her coach, Jessica Phoenix, who won the silver medal for Canada at the Toronto Pan Am games!  April is the first to recognize the need to be at the ready for any eventuality and prioritize mom and Craig’s wellbeing over anything else.

A few thoughts to conclude. The advances of medical science are profound and we can only stand in awe of what is possible. We have even watched a video of the operation so we know what to expect! Being as strong and healthy as possible for the surgery is the name of the game for Fay and Craig these next two weeks.

Your encouragement and prayers remind us of our foundation for the courage to face such a moment. Consider these bible verses sent to us by our good friend Rennie Garda from Illinois:

"For the Lord your God is living among you.
He is a mighty savior.
He will take delight in you with gladness.
With his love, he will calm all your fears.
He will rejoice over you with joyful songs.”
Zephaniah 3:17

While there are many risks yet ahead, please join us in giving thanks to God for orchestrating the elements which give us hope. May they assist you in whatever you may be facing as well!

We’ll update again soon,

Love Don and Fay

Milestone #3 Completed: August 7, 2015

Dear friends,

We feel fortunate to have so many of you who care for us and, once again, may I say thanks for all of your interest, notes, and prayer support for our family.

Surprise!  Since communicating to you last about the date of Fay and Craig's surgery, the hospital suddenly advanced the date from August 10th to August 5th!  We scrambled madly since receiving that call, including navigating our way through a power outage at our home (for the 45 hours before leaving for the hospital) caused by a very bad storm that hit Sunday night. On Tuesday morning, Craig and I completed the transition of our day-to-day responsibilities to a wonderful team, including Ken Malyon, Carol Ottenhof, Courtney Lawson, Don Wilson, Brett, and April, who are handling our operations and interests while we are out of commission for an unknown period of time - thanks, gang!

And, because I am writing in the early hours of August 7th, this update is not merely about the prospect of Milestone 3:  “The transplant”  but is all about having passed Milestone 3!

Significantly, August 5th was Fay’s birthday. And, a very profound birthday it has been!

She was admitted to Toronto General at 3 pm on Tuesday, August 4th, for a pre-op tune-up and medication. Craig was to report in at 6 am on Wednesday morning. So, on Tuesday, at 11:00 pm, Craig and Heather paid a visit to Fay at the hospital since the next day, while in adjoining operating rooms, each have distinct surgical teams, they would not actually see each other. Here is the chronology of the surgery day:

    • 6:00 am: Craig and Heather arrived at Toronto General
    • 7:50 am: Craig heads to the operating room to be opened up for final verification that his liver profile is as expected (2% risk of aborting surgery at this point)
    • 9:15 am: Fay heads to pre-op for preparations
    • 10:50 am: Craig’s surgeon, Dr. Grant, informs Heather that all looks good and the operation will proceed
    • 11:15 am: Fay heads to operating room
    • 2:30 pm: Dr. Grant reports his operation is complete with "no complications, no transfusion needed and an "excellent graft” with Fay’s damaged liver almost out and Craig's donated portion (65% of his liver) ready to go in
    • 4:30 pm: Craig arrives in post-transplant unit
    • 10:30 pm: Fay’s surgeon, Dr. Cattrall, reports operation completed (taking 10.5 hours) noting a medium level of difficulty (not the easiest nor most challenging he has done)

Fay's biggest complication so far occurred in the post operation recovery process where her response to the medication caused her respiratory system to struggle to become operative. The normal two hours in the OR recovery room took eight hours, making it almost a 24 hour process from the beginning….yet, this set up a most profound moment. In my journal, I wrote:

‘“It has been a long night and Fay just arrived in the step down unit at 6:40 this morning.  They had quite a job getting her breathing regular after surgery and they finally allowed me to come to the OR recovery unit to see her around 2:00 am (normally not allowed). Then, the great nurses just let me stay and help her settle down and get command of her breathing until she was finally disconnected from some of the many tubes and released at 6:30 am. It was quite an emotional moment when we stopped her bed at Craig's door and they were able to say hi to each other! Craig had been restlessly waiting for some hours to see her go by and in her case she was anxious to see for herself if we were telling the truth that he was OK! The hall was quiet and It took a while for Fay's eyes to focus. But once she caught Craig's gaze she returned his wave and Craig wished her a 'Happy Birthday' and told her he was 'Glad She Was His Mom!'  She thanked him for the incredible birthday present and even the heartiest of the nursing crew couldn't hold it together... then, off she went to her own team awaiting her in a room at the end of the same hall!

As memorable family moments go, this would be one of those indescribable ones for a father to watch... I must admit, I wish I had captured this moment on my iPhone."

And so, the dual surgeries are complete and both Craig and Fay are on the challenging recovery road now—they say days two and three are the toughest as their bodies recognize the realities of the invasion they’ve encountered and as they start physically moving (Craig walked down to see Fay twice Thursday) and all bodily functions are restarted. I have finally captured time to write during night two as the challenge of balancing Fay’s pain management/respiration and blood pressure has been acute tonight.

Yesterday afternoon (August 6), we received word that an ultrasound showed that all of the flows through Fay’s new liver (or shall we say Craig’s old one) were working properly…blood and bile. Perhaps more than hearing that the surgery was successful, hearing that the organ is already working as it should has been a climactic moment for me. We are not out of the woods by any means as all kinds of risks remain, such as the risk of rejection. Powerful steroids and anti-rejection drugs are now coming into play and will be part of Fay’s daily regimen for the rest of her life. But, we stand back at the marvel of God’s creation in the first place--in this case the profoundness of the human body. Similarly, one cannot experience what we have and not recognize the magnificent capability here at TGH and the advancements in modern science and medicine. The long hours at bedside give lots of opportunity to reflect on how fortunate we are to live in Canada and have such superior capabilities and so many wonderful people working as a team to restore lives. We learned for example, that having completed Craig’s surgery, Dr. Grant immediately started on a child's transplant not finishing up until 2 am the next morning (about 22 hours straight, completing two, back-to-back transplant surgeries)... wow!

So, thanks again for sustaining us through your thoughts, prayers, and bible verses. It is so helpful when one does not quite know what to pray anymore. Makes me wonder what God thinks when so many of you are chatting to him about our needs all at the same time... even the 500+ staff at World Vision Canada (where Heather works) were praying for us during their chapel on Wednesday. And, as you might guess, during the course of the last 48 hours, even with the most incredible minds, skills, and equipment coming to bear, there have been numerous tricky moments (too technical and detailed to mention here). But, one by one, they cleared away causing Heather and me to look at each other and know in that quiet, confident sort of a way that, indeed, God was with us!

Later today, Brett and April will come down to see Mom and Craig even while Jodie and Shauna host a visit from Prime Minister Harper in Belleville. As you well know already, there is never a dull moment in the Simmonds family!  From potential donors to quiet prayer contributors, your friendship means everything to us. Thanks for allowing us into your world with ours during this very interesting time in our lives.

Fay and I have found peace in the following verse and share it with you because it applies to whatever you may be going through as well:

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God" (Philippians 4:6).

Love, Don, for us all.

Milestone #4: October 23, 2015

Dearest friends,

I am thrilled to say it’s me (Fay) writing this time! Looking back, it was June 29th when I wrote to you last--over 3 months ago! It is almost like a whole quarter of a year is hazy. To say a lot has transpired is an understatement….

Never before have Don and I been so poor at communicating to our friends! Please forgive us for having to be so cut off from you all. Since our last communication things became quite challenging and frankly it has taken virtually all of our time and focus.

During this period Don has read me many of your notes and told me about others. It feels very trite to email a “thanks” to you as a whole group, but I would be grateful if you would overlook that until we can catch up with each of you properly! We remain eternally grateful for your prayers, positive encouragement, and your love and care expressed through emails, notes, calls, flowers, dinners, special visits and in a multiplicity of other ways.

As you will see, your prayers have seen me through even when we were not able to express the specifics (did not know what was happening ourselves from day to day!). Here is a chronology since the transplant:
August 5th: Transplant day
August 10th: Internal bleeding episode requiring transfusion/CT scan
August 12th: Craig released to go home
August 13th: Intense abdomen pain
August 14th: Diagnosed with multiple infections due to bile leak (into abdomen).
Craig’s wife Heather in hospital due to pregnancy complications.
August 15th: Infection and fluid extracted; abdomen drain and bag installed
August 16th-26th: Trying to walk, get stronger (all 133 lbs of me)
August 27th-30th: Released to go home (1st time). Rapid fluid loss (to 96 lbs)
September 3rd: Blocked drain creating new infections, re-admitted to hospital. (Additional intense pain turns out to be pleural effusion, with surgical removal of 1 litre of fluid from left lung) September 13th: Released to go home (2nd time). Daily nurse’s visit for intravenous antibiotic in pic line
September 17th: Liver function tests give rejection concern, re-admitted for liver biopsy
September 18th: Liver function tests subside, biopsy cancelled
September 19th: Released to go home (3rd time)
September 20th-30th: Daily nurse visit with improvement and stability

Thankfully, as of tonight, we can finally say that I’ve had my first normally strengthening week since the transplant! Although I still have the stomach drain, we can tell by the reduced outflow that things are healing up naturally and we are very grateful for that. A transplanted organ carries the ongoing risk of rejection. This is managed through a series of drugs that suppress the immune system and will remain part of the regimen for the rest of my life. This is why my state was so critical—infections--but a suppressed immune system that could not fight it back.

This next phase especially (6 months or so) is a very important time as well, trying not to get exposed to sickness that will put me at risk. It is almost 60 days since the operation (August 5th). I am happy to report that Craig is strong now. It took him a few weeks as he had lost 37 lbs in 30 days prior to the surgery to make sure his liver was just perfect for me! Given this incredible birthday gift, I’ve told Craig “never even to think about getting me another birthday present again!”

Heather is back at work now (thankfully) and her health (and the baby) is stable. Their generosity has come at an enormous cost! We are so very grateful also for the long list of family and friends who helped us cover 24/7 for a number of those first days, have been bringing meals to our home and for our work colleagues who have kept our responsibilities covered so professionally.

As you can imagine, we have had a few low moments. The words “possible rejection” made us shake. We were totally unable to help Craig and Heather or even visit at their acute moment of need. We lost our dear friend Brenda Pue (Langley, BC) to lung cancer in the middle of it all and were virtually helpless friends to the Pue family. Yet, not many days after, Carson himself came to see Fay in the hospital in an incredible gesture of friendship and care.

Recently in a debrief with my surgeon, I was able to see a photo of my original liver. The damage was fully evident even to a non-medical eye, making me realize that life prior to the transplant was tenuous at best. This reminder of the big picture—the prospect of a normal life again -- keeps us going….and as my mind gets clearer, it makes me ask the profound question “why me?”

How is it that God has used this gift of life from Craig and scientific advancement to save me? As our focus shifts from survival to strengthening, we are just now getting some windows of time to ponder this reprieve of life, and just what He wants us to do with it! Verses in Romans 9 (15,16) remind us that God is the author of such mercy and compassion:

“I will have mercy on whom I have mercy, and I will have compassion on whom I have compassion.”

It does not, therefore, depend on human desire or effort, but on God’s mercy. So, thanks for keeping tabs on us and for your prayers.
Love Fay, for us both