Journal

Journal entry by Julie Gardner

It's been nearly four months, four full moons since John left this earth. Remember, John appreciated the moon and passed on the weekend of the full moon with an eclipse. Once again I'm finding it hard to keep up to calls, texts, emails, cards and other communications. And I want to respond, so here’s a giving thanks post and update. It may be the last time I post on CaringBridge. Friends and family have been so kind in the past months in so many ways. I've appreciated all the gifts and visits which have kept me life focused.

It meant much to be with family and friends including so many high school and grade school friends in Kansas City for John’s October Catholic funeral and burial. At the cemetery, as the soil and grass seed were being tamped down, a red-tailed hawk circled above. Many more were higher up. There's been so many winged creatures: owls, hummingbirds, eagles, geese and other gifts from nature this fall. For me, after Kansas City, there was some release or letting go. I slept a bit better, had a little more energy, took more walks, strolled and wrote at the Bloedel Reserve, went to yoga/Pilates more often, and started reading and writing, even took a poetry class. Of course, I wrote grief poems.

We celebrated the joyous occassion of Arlo's first birthday on November 3. His party was a costume event for over 40 people. He was the cutest little skunk!

This past weekend, in the nest John and I created, I hosted my first WritersGathering Retreat. It meant much to me to be able to share the warmth of the nest with others doing something we all love.

And now, the holiday season has begun. John loved Christmas music and started playing it around Halloween. Seriously. It was always a big tease between us. Me, saying we should wait until after Thanksgiving. After his cancer diagnosis, he upped the tease and said, “What if I’m not alive at Thanksgiving?” So, for the last four years we’ve enjoyed Christmas music from October through January. When I was in Starbucks last Friday the Christmas music caught me by surprise. I wept and wept. I’ve been told the holiday season might be difficult. I’m letting the tears flow. Each one is filled with loving memories. There's so many. Yesterday I played Christmas music as I started decorating the nest for Christmas, something John and I never did before Thanksgiving. I wanted to lean into the grief before Thanksgiving in hopes that I won't cry all weekend. John’s brother, his wife, a nephew and his wife will be here for Thanksgiving. For Christmas, everyone but Elie and Ziad will enjoy the warmth and sun together in Sayulita, Mexico. We're planning a trip to Norway to spend time with Elie and Ziad this summer.

Today is a joyful Arlo day. He and I listened to Christmas music. He loved it! Yikes! He may have John’s penchant for an extended Christmas music season.

We've so much to give thanks for. A year ago John was getting radiation and starting immunotherapy which likely gave him more hard earned time with us. Now he’s at peace. I’m at peace with him being at peace and I am practicing being at peace without his presence. I’m reading “The Grace in Dying: A Message of Hope, Comfort and Spiritual Transformation” by Kathleen Dowling Singh. The last four years, and more intensely the last year, have been filled with all of those. It seems to be continuing as I search for answers to unanswerable questions, entering into the Mystery more fully.

Here’s a reprise of a song John and I posted before, What I’m Thankful For.

In the last month of John's life we danced (or snuggled) to some of Carrie Newcomer's songs. Her new song On the Brink of Everything touched us deeply. Some select lyrics: "Yeah, all the things that used to matter. No, they don't mean so much today. ... This has been too much and little. The ache of it bewildering. But for now we will stand together here on the brink of everything, here on the brink of everything. I can't see beyond this horizon. No, I can't say what's waiting there. I never sang because I knew something. I sang because it was a prayer. The finest one that I could bear. ... This body has been many things. It's been rain and snow and earth and dust. I've worked and worried, searched and hurried, but now it's just forgiveness. Now, it's all forgiveness."

My Thanksgiving prayer/wish for all of us is for forgiveness and unconditional love (something John gave me).

Sending love and gratitude to all of you. Your presence in our lives, especially in these past four plus years means much.
  • Fall Sunrise from the Nest 
    Fall Sunrise from the Nest
  • Arlo the Cutest Little Skunk
    Arlo the Cutest Little Skunk
  • A Deer, Skunk and Owl Celebrate Arlo’s 1st Birthday
    A Deer, Skunk and Owl Celebrate Arlo’s 1st Birthday
  • A Christmas Heart Waits for us  in Sayulita, Mexico. 
    A Christmas Heart Waits for us in Sayulita, Mexico.
  • John, an Avid Newspaper Reader, Reading his Last Sunday Newspaper after Coming Home from the Hospital One Week Before he Passed 
    John, an Avid Newspaper Reader, Reading his Last Sunday ...
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Journal entry by Julie Gardner

This past New Year's Eve I was asked to lead a writing experience for the family so they could experience what I do in my writing workshops. There's a structure and practices to create a safe place for expression. One of the guidelines is we don't write about people in the room. Well, John broke the rules and left us with this writing.

Appreciations and Hopes
I appreciate the dawn, the long shadows of late afternoon sun, the moon.
I appreciate my childhood family, the care, best intentions, unconditional love.
I appreciate grass, crops, the smell of turned soil, the sound of cattle.
I appreciate the dance of humans and nature we call agriculture.
I appreciate my high school friend who grew into my partner, lover and friend.
I appreciate our children
The first who helped us learn the discipline of being parents and creating family.
The second who brought energy, a love of life and an expansion of our view.
The third for his joy, good will and quiet sensitivity for us all.
This is a time of life changing transitions and growth for us all. I urge us to mark these rites of passage and consider ritual that is meaningful.
My hopes are for Kate, Kyle and Arlo as they create their own family and choose a new path of home and life.
My hopes are for Elie and Ziad as they launch their lives together in Norway, blending cultures and careers.
My hopes are for Johnny as he moves from school to work, and Anita as she continues to strengthen her voice and career, and Johnny and Anita as they cultivate and deepen their relationship.
My hopes are for Julie and I as we turn 60. It is not at all as we ever imagined.
My hope is our compassion and care of one another will show us a new direction in the dawn, fresh comfort in the long shadows of afternoon sun, and a bright moon to dream by.


It's been four weeks today since John passed. It seems unreal, like yesterday, like an eternity. Guess that's how grief time goes. John began his passage on the Friday of July's full moon. Tonight it will be another full moon. Each morning, like the words from Ben Howard's song Old Pine, I try to "stand steady as the stars in the woods, so happy-hearted, just to bless the morning". The song meant much to our family these past years and was sung at John's memorial service. I write now to bless this morning, John, our family and you. And I write because I haven't been able to keep up with individual communications.

The first two weeks after John's passing we shared precious family times, memories, laughs, tears and we planned for the August 11 memorial service at Grace Episcopal Church. Thank you to all who were part of the planning and service, especially Jill and Nani who organized and presided and have held our family for years. In a beautiful space fitting to John's love for nature, we honored him and his life. People shared stories and we all got to know John a little more. We did have a videographer and may be able to share the video in the future. 

After Johnny, Anita and Elie departed and Kate and Kyle went back to work, the nest John and I created became all too quiet - not that John was a noisy guy. I cried and cried and mushed on. The first thing I did was get rid of anything that reminded me of sick: the barf bags, the thermometers and all the medications scattered throughout the house. There's so many unplanned for details one is confronted with: What does one do with his clothes, boots, wallet, computer, iPhone, iPad, work and other journals, music books, with the empty space in the built in closet for two? There's surprises too. On a piece of notebook paper from a favorite coastal place we visited John scratched these words, "A little love note from your loving husband! Love, John." I now have his little love note posted on my office bulletin board. On a piece of ripped paper, the words, "night, night" is now in my nightstand. I'm enjoying flat whites at Starbucks because I found a $50 gift card in John's wallet. John left us precious gifts, his own words written in his journals which he blessed us to read.

I've read through all the cards we gave each other in the past years. In April, for my 60th birthday, John gave me one with a pair of fancy blue stilettos on the front complete with jewels and feathers. If you know me, I have bunions and wear mostly orthotics. Inside the card it said, "Step into your most amazing year ever. Happy Birthday." And above those were John's written ones, "Dear Julie Rae, I wanted to give you, as a last happy birthday wish, a proper card." Yes, we knew our time together was running out but I didn't remember he had written those words. At the time, I imagine I might have made light of them, maybe winced and thought or said, I hope it's not the last. Now, I am knee deep, on my knees well into my most amazing year ever. Amazing Grace. Amazing Grace. Some might think that John might have lost hope actually writing that it was his last birthday wish to me. No, we never gave up hope for miracles, but hope changed. We chose to live by the words of Albert Einstein, "to live our lives (what we were given) as though everything is a miracle." I'm still trying to make that choice. It's a practice. Taking time to grieve and to reflect on all we shared: the better or worse, sickness and health and the love that was so real - so much more than us - is pretty amazing. 

We are all living with the reality of life after John. The thing is there is no such thing as life after John. His body is not with us but we hear and feel his music, his voice, his wisdom, his love and we see the fruits of his labors which creates longing and gives us comfort and strength. We did have a pretty amazing love. Love remains.

On the last Mother's Day card John gave me, there's images of a heart, a lock with key, an open door and a sailboat, and the words associated with them: to cleanse the heart, to unlock the lock, to open the door, to live at last. Inside he expressed so much appreciation and more. In reference to all we've been through with cancer, he said, "You have taken lemons and made lemonade." The card came with a pair of lemon earrings. 

So there is sweet lemonade and less than sweetness (trying not to be lemon sour) in these days. There's comfort knowing John did cleanse his heart, unlock the lock, open a door and lived at last during his all too brief time on earth, more intensely in the past months and year or so. John often said cancer gives one the gift of time. Cancer has taken much from me and it has given me the gift to know not to wait, to live like everything is a miracle. In the words of St. Irenaeus of of Lyons, "The glory of God is man fully alive."

I am fully alive, and what that means now is being fully present to grief. For me, it shows up unexpectedly at times in various ways as: fatigue, poor sleep and appetite, tears, weird thoughts, difficulty concentrating, sighing, questioning God, numbness, sadness, withdrawing, and more. I've been reading poetry and spiritual writings and writing. I'm trying to be fully present to new possibilities. Arlo, the kids, family and friends keep me life focused and bring me joy. It's breath by breath, feeling the blessing of each morning, praying to be shown a new direction in the dawn, feeling fresh comfort in the long shadows of afternoon sun, and dreaming under a bright moon.

Thank you all for your steady presence and caring, prayers, cards, other communications, flowers, memorial gifts to WSU Elson S. Floyd College of Medicine John and Julie Gardner Food For Health Fellowship and Bloedel Reserve, and all the ways you've shown your love. We look forward to seeing some of you at the prayer vigil and funeral Mass in Kansas City in October.
  • Arlo chewing grass like Grandpa
    Arlo chewing grass like Grandpa
  • The altar at John's Memorial Service with his last wheat crop
    The altar at John's Memorial Service with his last wheat crop
  • John's last happy birthday wish: step into your most amazing year ever!
    John's last happy birthday wish: step into your most amazing ...
  • To cleanse the heart, to unlock the lock, to open the door, to live at last
    To cleanse the heart, to unlock the lock, to open the door, to ...

Journal entry by Julie Gardner

Three things will last forever-faith, hope and love-and the greatest of these is love.
1 Corinth
ians 13:13

Dear Family and Friends, 

I've lost the love of my life and my heart is broken. I prayed for mercy in John's final days. It was granted. He went all too fast, and he went fast for us. John always extended himself for others and never wanted to be a burden to anyone. We had an idyllic day on Friday, one I will always cherish. As our family cries, laughs and shares stories, the gifts John gave to us continue to reveal themselves. We are overwhelmed with the outpouring of love and support from so many family and friends, and there's so much to tend to after someone passes. Though we may not respond to your communications at this time, please know they are tethering us at this time of our loss, your loss.

With love and gratitude, Julie



John Christopher Gardner was born in Kansas City, Missouri on January 28, 1958 and passed from this life on July 29, 2018. In 2014 John was diagnosed with bile duct cancer. He was fortunate to receive care from a dedicated healthcare team in Seattle. He lived fully until his final sunny weekend with his high school sweetheart in their Bainbridge Island home.


John and Julie Rae Abare married on August 7, 1976 at Queen of the Holy Rosary Church in Overland Park, Kansas. Together they raised three amazing children.


John graduated high school from Bishop Miege in Roeland Park, Kansas, in 1975 then quickly earned both his bachelor’s and master’s degrees in agriculture from Kansas State University. John began his career in 1979 as an agronomist at North Dakota State University’s Carrington Research Extension Center (CREC). After completion of a PhD in Crop Physiology at the University of Nebraska, he returned as the Director of CREC. His research on crambe seed led to his co-founding and role as CEO of AgGrow Oils, a North Dakota LLC that integrated the production, processing and marketing of oilseeds.


John believed deeply in education, particularly the mission of land-grant universities, and was dedicated to his work at North Dakota State University, the University of Missouri (1999-2007), the Bainbridge Graduate Institute (2011-2014) and Washington State University (2007-2011, 2014-2017). Before he retired in May 2017, he was serving as Vice President for Development and CEO of the Washington State University Foundation and was the Industry Liaison for the Federal Aviation Administration Center of Excellence for Alternative Jet Fuels and the Environment.


John loved and was a steward of the land, from the tallgrass prairie Flint Hills of Kansas to the gently rolling wheat fields of the Palouse. When John and Julie ventured to the Pacific Northwest, he transplanted the Kansas prairie by growing wheat and little bluestem grass on their balconies.   


John steadfastly served and loved his family, his community and the land. The restoration of the Putnam House, a rural cultural and community center in Carrington, was a labor of John and Julie’s love. John enjoyed listening to music, singing and playing guitar at church and home. He embarked on long runs and walks, read countless books and newspapers, applauded the theater, drank black coffee every afternoon, appreciated a glass of good red wine, laughed often (especially when watching SNL skits) and retraced the entire trail of the Lewis and Clark Expedition.

On the night before John’s surgery in 2014, John and Julie vowed to dance every night, which they did for the remainder of John’s life on earth. Peace is Flowing Like a River was their last dance.

John is survived by his wife of nearly 42 years, Julie, and their three children: Kate Gardner and husband Kyle Gustafson and their son Arlo Gardner, Elisabeth and her partner Ziad Altaha, and John and his partner Anita Rao. He is also survived by two brothers and their wives, Bryan and Tuffy and David and Jill, their families and many more dear family members and friends. He was predeceased by his father, John, and his mother, Christine (Liddy) Gardner.

A memorial service will be held at Grace Episcopal Church, 8595 NE Day Road, Bainbridge Island, Washington, on Saturday, August 11 at 1 PM.

There will be an evening prayer vigil at Amos Family Funeral Home on Thursday, October 18 from 6 to 8 PM and a funeral mass Friday, October 19 at 10 AM at John’s childhood parish, St. Agnes, 5250 Mission Road, Roeland Park, Kansas. John’s favorite season was fall; this year he will be home for harvest.

In lieu of flowers, donations may be made online to the John and Julie Gardner Food for Health Fellowship at Washington State University or to Bloedel Reserve for the Strolls for Well-Being program.

Journal entry by Kate Gardner

Dear Family and Friends,

My father, John Christopher Gardner, passed away peacefully while resting at home on Bainbridge Island on this sunny Sunday morning, July 29, 2018. My parents prayed together this morning, my dad holding a wooden cross given to him by a high school friend.

For over four years we knew this day might come, and we all thought we had more time. Our family is overwhelmed with sadness. We now approach life without his physical presence, daily support and living example of grace, generosity and thoughtfulness.


After two hospitalizations last week, my parents met with a hospice provider last Thursday. Instead of being nursed at home, he served all of us until the end. Days ago he was tending my garden and playing with my son, Arlo. On Friday he enjoyed a walk in the woods, marveling in the nature just outside the door of the new home he created with my mom. My dad’s character would not accept wasting time in bed mourning the fragility of life.  


On Friday and Saturday he started to have pain and nausea which was managed with medications. It was not clear to us that he was quickly approaching the end of life. We wondered if he was experiencing another few days of residual side effects from his last immunotherapy treatment or if perhaps last week’s blockage wasn't totally resolved. 


You may regret not saying a final goodbye, but this is likely what my dad intended. He lived fully until the end, suffering internally at times, always present in our lives. My dad was fortunate to have the best available cancer treatments to extend his time with us. Cancer is not a battle to fight, he had the strongest desire to live fully. Our memories with him will carry us through this grief.


Thank you for being in our lives. As soon as we have details on services here and in Kansas City, we will share them on CaringBridge.

The servant song gave my parents great comfort in the past years. May it comfort you.

With Love,
Kate Christine Gardner

Journal entry by Julie Gardner

John has approached his retirement lifestyle and cancer treatment in much the same way as he did his career and life, giving it and others his all. No surprise!

Since our last post...
We’ve had the honor to witness our son in action during the open session of his dissertation defense. We now have another Dr. John Gardner in the family. We are so proud of him! He's had to push through adversity. Since fall, he's be dealing with his own health challenges and life adjustments.

We’ve cherished wonderful family times with Elie, Johnny, Anita (Johnny’s love who we love), Kate, Kyle, Arlo, John’s brothers, my brothers and their families on Bainbridge Island.

We love our precious days with Arlo. He’s now a joyful babbler, belly laugher, fast crawler and dancing music lover. He especially loves Grandpa and his Dad playing the guitar. He’s so curious about his ever expanding world.

John, Elie and Johnny traveled to the only part of the Lewis and Clark trail John had never traversed, from Lewiston, ID to Lemhi Pass. Elie captured some of the expedition on Instagram.They were even able to squeeze in a quick peek of the new Jordan Schnitzer Museum of Art and Elson S. Floyd Cultural Center at WSU.

We’re enjoying walks, reading, movies, beautiful parks, trails and preserves on Bainbridge Island, the local Farmer’s Market, sunshine and moonlit evenings on our deck, and time with friends when John feels well enough.

Now, here's the not so wonderful, the hard news. In June John did try another infusion taking one of the two immunotherapy trial drugs he’d been on, hoping it alone would provide the benefits without the problems. Due to immediate and severe side effects plus the cancer still advancing, John is no longer in treatment. 

Last week, there was: a trip to urgent care, a first ambulance ride on a ferry, two ER trips and two hospitalizations at two different hospitals due to intestinal blockages. Without a single, clear blockage to fix, the risks of surgery and wanting to enjoy life as much as possible for as long as possible, surgery didn't seem to be a good option. Instead, we've been given nutritional and other advice to manage digestive problems and possible future blockages caused by cancer.

We are beginning a new chapter: hospice. We don’t want to keep going to the ER and hospital, especially now that we have a ferry ride, when these things can be taken care of at home.

We know when people hear the words cancer and hospice, the word death is in the wings.

We’ve also read enough and talked to people to know this: people with the same disease/diagnosis who are in hospice live longer, experience life more fully, and have less pain and complications. Hospice workers anticipate and help prevent problems based on their experience and knowledge. Most people who have used hospice say they wished they would have started it sooner than they did.

We are so grateful for the care we received this week, from, family and friends, all the health care providers (and there were many, including John's original surgeon), and for morphine.

Again, we thank you for your prayers, healing wishes, cards, and acts of kindness and support.
May you continue to enjoy the gifts of this summer. We will!


 

 
  • At the Farmer's Market
    At the Farmer's Market
  • Elie, John, Julie, Arlo, Kate, Kyle, Anita, Johnny
    Elie, John, Julie, Arlo, Kate, Kyle, Anita, Johnny
  • Gardner Family Campfire
    Gardner Family Campfire

Journal entry by John Gardner

After the surprise discovery of late stage bile duct cancer in 2014, I was fortunate to have almost three 'no evidence of disease' years due to a skilled team using radical surgery, radiation and chemo. One year ago a scan revealed small tumors throughout my abdomen. Giving me pause, which I must not have been able to hide, a colleague asked, 'You're ready for a fight, aren't you? You can whip this.' Sure, I thought. Clearly I did not know what a 'fight' meant. Julie and I have even discussed my obituary not saying, 'After fighting cancer for years...' or 'After a long battle with cancer....'

Over the past year, I've had hundreds of lab tests, a dozen scans and numerous stays in the ER and hospital. After two kinds of traditional chemo therapies, radiation and a new genetically-targeted enzyme inhibitor before switching to the latest immunotherapy in the NIH trial, I'm not receiving any treatment, and not sure if I will again.

I've definitley benefited from all of the above. The initial surgery/radiation/chemo gave me three years. This past year, the traditional chemo likely extended my prognosis of six months for another six months. After the recent immunotherapy and scan, we asked the oncologist to give us a prognosis. He simply said 'I wouldn't make plans for 2020.'  We were/are thrilled with the possibilities of 2018, 2019, another holiday with family and friends, and precious times in our new home and Bainbridge Island community.

Benefits have come at a cost. I've been sick much of the past year due to side effects. I'm still coping with fevers caused by the immunotherapy, taking a high dose of prednisone and am disqualified from the clinical trial. Since the immunotherapy did shrink most of the tumors, it is disappointing. There is a traditional chemotherapy I haven't tried (which tests suggest I may not be able to tolerate), the possibility of taking just one of the immunotherapy antibodies -  and always promise of new therapies being developed - but, at this time, there are no good options. I do believe in research and miracles. And I now know what a 'fight' with cancer is.

With Julie's nurturing help and our move to Bainbridge Island, my current therapy is a true lifestyle change. I've already been given the opportunity to meet our first grandchild Arlo. Now, I have a bit of time to grow with him, and to marvel observing our daughter Kate and son-in-law Kyle grow into parents. I'm back closer to nature, enjoying gardening and helping with Kate and Kyle's yard, our home, and long walks on the island. I'm here to witness our daughter Elie begin her next chapter living, studying and working in Norway. I'm looking forward to our son John's public seminar in May as he completes his PhD at Duke. And, I'm in awe of Julie who has revealed such a depth of care and character, ensuring we've retraced our past to see many old friends, family and places. I want to make sure I am well enough to enjoy today, family, friends and all of the future days I might be given.

I can't say the 'fight' hasn't been worth it. It's added years to my life, special years working with great people and being humbled by the support of friends and love of family. But cancer has a way of waking one's consciousness and it seems time to pursue a real retirement lifestyle while I can. I don't look forward with fear but with my eyes and heart wide open.
  • Here's to a Happy Retirement!
    Here's to a Happy Retirement!

Journal entry by Julie Gardner

Steroids were successful in getting John's immune system back to a steady state without fever. Nearly three months since his last infusion, however, the tumors have returned and are growing. We agreed with John's oncologist that the benefits might outweigh the risks to proceed with another immunotherapy infusion.

Right now, John's sitting in a chair getting the first of two monoclonal antibodies (for those who are interested in the details, see below). We're prepared for the real possibility that his immune system might again speed out of control attacking his liver, lungs, etc and causing a constant fever. If this happens, he'll again go back on steroids to suppress the immune system and it will likely mean the end of any further immunotherapy. We're willing to risk another treatment today because of how effective it was in shrinking the tumors. Though he is on morphine to manage pain and takes a nap everyday, he walks five miles most days and is able to enjoy life everyday. At the least, we're hoping another treatment will again shrink the tumors and give him several additional months. What we really hope is that his immune system will adapt to the immunotherapy and he can continue using it to manage his cancer for years.

During the past six weeks:
*We said goodbye to Elie after three months of precious time;
*We enjoyed caring for dear Arlo every Wednesday and Thursday;
*On Valentine's Day John and I gave each other a new condo on Bainbridge Island which, assuming all proceeds as planned, we will move into on April 4;
*We're planning to attend Johnny's oral defense in May and to celebrate his doctorate completion and the National Science Foundation Fellowship he was awarded which he'll begin in August;
*I went to Sayulita, Mexico to beautiful Casa Corazon for a needed, relaxing and meaningful women's retreat; 
*We've expressed gratitude daily for all we've been given including friends and family who are praying and caring for us in so many ways.

We really appreciate the cards and the check-ins from people telling us about their lives. It helps us stay connected.

We're really looking forward to our new condo on Bainbridge Island. It's walking distance to the ferry and most services and so much closer to Kate, Kyle and Arlo. It feels like it’s our birds’ nest in the trees. And, best of all, John says it feels like he's really retiring.
 
So, here we go again!

_____________________________

For those interested in the the immunotherapy John is getting, they are of the new class of treatments called checkpoint inhibitors. These 'checkpoints' are monoclonal antibodies designed to turn on/off the body's natural immune response toward a specific cell. Today is his third infusion of nivolumab (sold under trade name Opdivo) combined with ipilimumab (sold under trade name Yervoy). Nivolumab is a PD-1 checkpoint inhibitor which acts as an 'off' switch, enabling T cells (a type of white blood cell) to attack cells it otherwise wouldn't - including cancer cells.  Ipilimumab is another 'off' switch that stimulates the body's natural immune system as a CTLA-4 checkpoint inhibitor. Genetic testing of the tumors revealed similarities between the bile duct cancer John is suffering from to that of some breast and melanoma cancers. Both Opdivo and Yervoy are among the most promising new treatments being used for melanoma.

Journal entry by Julie Gardner

John’s recent scan confirmed amazing tumor shrinkage, some have even resolved. Unfortunately, there are a few new ones. He’s still on a high dose of steroids. They’ve tried to taper his dose a few times, maybe too fast, so fevers and other side effects returned. So, now, he’s restarted a slow long taper with the hope to get back to immunotherapy by mid March.

In mid January, John seemed stable on steroids so we flew with Kate and Arlo to Laguna Beach for a sunshine fix before Kate returned to work this week. We rented a two bedroom cottage a few blocks from the beach at a place with a beautiful garden where we’ve stayed before. It was mostly a wonderful week full of sunsets, relaxation, time together and with other relatives including Arlo’s other grandparents who drove up from Carlsbad.

Unfortunately, while in Laguna, John’s fevers increased and he developed back and abdominal pain that became so bad he couldn’t sleep. We worried he had an obstruction which led to a trip to the ER and hospitalization. Morphine eased the pain and is something he needs to take regularly now. An MRI showed “something” in his spine, something we hope will resolve since inflammation is reduced by steroids.

We had to tease John that he wasn’t happy with a garden view so he upgraded to an ocean view room. 

We are now back home. On January 28th we celebrated the joyous occasion of John’s 60th birthday. On Wednesday we started caring for Arlo two days a week. He’s such a good natured guy, making it more pleasure than work. And we’re enjoying our last week with Elie in Seattle.

Here’s to sunshine and family!
  • Happy departure from the ocean view hospital
    Happy departure from the ocean view hospital
  • Even the hospital Kleenex are sunny in CA
    Even the hospital Kleenex are sunny in CA
  • Arlo was really relaxed in Laguna
    Arlo was really relaxed in Laguna
  • Elie surprises John with day early birthday cupcakes
    Elie surprises John with day early birthday cupcakes

Journal entry by John Gardner

I've never experienced a cancer treatment as remarkable as the immunotherapy received through the clinical trial. Once it revamped my body's immune system, the tumors seem mostly consumed which we'll check with a scan at the end of the month. The pain I had from the cancer is gone. Now there is a new problem - we can't seem to shut down the super-charged immune system.

On Christmas I fell ill with a fever. It persisted and increased for two weeks while testing to rule out infection. It wore me down and I was unable to eat or keep food down. Prednisone was prescribed to suppress the immune system and the fever for four life giving days. The hope was the immune system would simmer down, but after stopping the steroid the powerful new immune system and fever roared right back. Now, I'm experiencing some dangers of super-charging your immune system such as pneumonitis (lung inflammation), hepatitis (liver inflammation) and low blood platelets accompanied by fatigue and weakness. 

My participation in the trial is on pause for the next month while the side effects are managed with prednisone. We'll then try again to see if the immune system will keep itself in check. If so, I will continue on the trial. If not, I likely will have to discontinue my participation in the trial and focus on managing my immune system. 

Cancer has taught me many things, including to expect - and more importantly accept - the unexpected. I remain amazed at the healing power of the immunotherapy. My participation in the trial has already given me more time and I hope contributes to a greater understanding of using immunotherapy for bile duct cancer, a rare and little researched disease. I didn't expect it be so effective. I also never expected a fever for weeks, not because my body was fighting infection, but fighting (and consuming) itself. 

Despite all the setbacks, we cherished the holidays with everyone here. Bryan (my brother) and Tuffy's family were gracious hosts near Mt Hood for Christmas. Tuffy covered us with love, giving each of us soft blankets. Kate (our daughter) and Kyle hosted our family for New Year's eve on Bainbridge Island, utilizing their fantastic fondue skills learned in Switzerland. And whenever I've been able, I've snuck in snuggles with our new grandson Arlo. Julie says it is the best therapy I'm getting.

Thanks always for the heartfelt notes, thoughts, prayers and well wishes. Those, too, are among the most powerful medicine anyone can receive.

Journal entry by Julie Gardner

Eighteen days ago, when we last posted, things were so rough for John we didn’t know for sure if we could really do all we hoped for in December. 

But, joy! We did make it to Florida. We’re so grateful to all John’s relatives for their warm and delicious hospitality. A big thank you to Uncle Robert and Aunt Patty for the bed and breakfast accommodations which also included lunches and evening family gatherings. We were well cared for.

Today, I write while John is receiving his second immunotherapy treatment.

All is calm and bright! John’s pain and symptoms have eased so much he hasn’t taken much pain medication. He still fatigues and has a few minor side effects from immunotherapy, but it seems to be helping. He won’t let me title this post or say, “It’s a Christmas miracle.” (But he can’t stop me from thinking miracle.)

The tumors are shrinking! The three palpable tumors have significantly reduced in size and John feels less pressure from the internal ones.

We share this joyful news today because we believe your healing wishes and prayers along with treatment are making a difference. Thank you. Thank you.

Seems like our December hopes are all coming true. We are preparing for our trip to Mt. Hood for Christmas Eve. We’ve been so busy we haven’t worked on our annual card so it is with great hope, faith and love, we wish you a Merry Christmas and a Happy New Year!

Journal entry by Julie Gardner

John and I are so grateful to have so many caring friends, family members and colleagues in our lives. We've decided to use CaringBridge as a way to keep you all updated. We'd love to have more personal communications with each of you, but life demands make that impossible. Thank you all for your understanding, support, caring and prayers. 

Since John's initial cancer diagnosis, surgery, radiation and chemo nearly three years ago, John has done amazingly well. We're so grateful for the medical and other care he's received. We've always been aware that a cure was not likely, given the kind of cancer John has (cholangiocarcinoma/bile duct). Still, with each clean scan we hoped to beat the odds.

In April we learned that John's cancer has returned; the cat came back. At first we thought surgery might be possible, but then we discovered it was inoperable due to multiple tumors. After John's first chemo infusion, he ended up in the hospital. He is doing well now. Next week John plans to try a reduced dose. Also, genome testing is being done in hopes to find an immunotherapy that will provide John with more quantity and quality of life. In the coming month we will know more about what we might expect going forth. We will let you know more as we know more.

After a beautiful and touching WSU Foundation Trustee meeting last week, today John began his leave from work to focus on his health. As he told the Trustees, "We are hoping for the best and preparing for the worst." Of course we've been sad and anxious. And we've been staying life focused. We are overwhelmed by the kindness of people.

We kicked off the summer this weekend with Dan and Carla Dyer, friends from high school. We shared Seattle sun, fun, food, wine, memories and created new ones. As we climbed into an Uber to go to dinner, we chuckled thinking about how different this double date was from our high school years. John and Dan have known each other since kindergarten. 

On Memorial Day weekend we will celebrate life and love at our nephew's wedding in St. Louis. All of our kids, our son-in-law, our son's girl friend and John's side of the family will be there. We are going to dance!  We look forward to the birth of our first grandchild. Our daughter Kate and her husband Kyle, who live in Seattle, are expecting a baby boy in November.

So while John fights for his life, our family is living and loving with the all of what we have been given. We'll try to update this and share the ups and downs whenever we can. Thank you for caring. 

Click on photo below to see our high school friends Dan and Carla. We enjoyed the beauty of Bainbridge Island with them.



Live and Love!
  • High School Friends Dan & Carla Dyer
    High School Friends Dan & Carla Dyer
John’s Story

Site created on May 22, 2017

Welcome to our CaringBridge website. We are using it to keep family and friends updated  about our life and John's health as he deals with his cancer recurrence. Feel free to share an update about you and your loved ones or anything else. It's a way for us to stay connected.  Thank you for visiting.

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