Today Allana and I had the opportunity to share our story at the Patient Experience Summit here in Cleveland.  It was such a blessing.  Amy and her crew  from Jamie Belkin Events made the whole process wonderfully smooth even if we did get bumped up 30 minutes.  As always everyone from The Cleveland Clinic did an incredible job making us feel comfortable.  Because of the nature of the event video or audio of the session will not be available but I wanted to post the transcripts here to share with all of our friends and family.  We thank you for all of your support throughout our journey!

(The numbers are PowerPoint transitions and Allana’s piece is in Blue- so you can imagine the blue with lots of tears and emotion 🙂

The PowerPoint if you would like to see it (nothing fancy)

The Video

Introduction: Sam (1)

Good morning!  I am Sam Guidry and this is my wife Allana.  We are very excited to be here this morning!  We would like to thank Dr. Cosgrove and the Cleveland Clinic for inviting us here today to share a little of our experience with you.  I would also like to thank Dave Braun from the Cleveland Clinic Media department and his entire staff for that wonderful video!  Though I do want to clarify one thing.  SHE cried often throughout the filming that went on, I had one weak moment and of course….But seriously Dave and his team did an incredible job of capturing the essence of our story while also being incredibly sensitive to the rollercoaster of change that is the Leukemia and Bone Marrow Transplant experience.

The first definition of Change at Mirriam-Webster.com is(2):  “To make different in some particular; To make radically different; to give a different position, direction or course to”   This is an ongoing process for everyone.  What this process entails, how it occurs and what we believe about it impacts every aspect of our lives.  Why don’t I let Allana tell you a little about the “change” in our lives.

Background:  Allana(3)

Sometimes change alters your entire life in a single moment. 

Like when I was 22 and looked down at the positive pregnancy test. I knew the course of my life was forever changed.

Sometimes change happens slowly, but when you look back you can pinpoint the moment that was going to change everything.

Like shortly after my 23^rd bday.  I simply jumped into a yahoo game of gin rummy. I didn’t know it at the time, but this event would change my life forever.

9 very short months later, on December 15^th 2001, I married my Internet sweetheart.  I became step-mom to Sam’s two boys, John was 16 and Robert was 6. Sam became step-dad to one year old Samantha.  Change happened rapidly as Samantha and I moved from MI to PA and then we all moved to Indy.  And I can’t forget the blessing of our little family blender, Chayla Louise, was born on April 21^st 2003.

Every patient has a story, and this is mine…

Sam and I tried right away to have more children, but I was unable to conceive. Until November 2005 when we rejoiced at finally becoming pregnant again.

March 9^th 2006 was another huge moment of change.  We went to our 20 week docs appointment.  We were hoping to find out the sex of the baby.  However, we weren’t the least bit prepared for what was going to take place.  I laid on the table, waiting for my doctor to use her little Doppler to find the heartbeat.  She moved one way, then the other, up high, down low.  But no heartbeat was found.  She got me in to have an ultra sound. As I looked at the ultra sound screen, my little jumping bean was completely still, there was no heartbeat.   

This was the start of our heartbreaking journey of change as we lost 6 more babies in a 4 year span.  August 2010 was our last loss.

From that moment on life changed for the good.  Sam and I became associate directors of a small outreach center called The Lewis House.  It was great restarting our lives helping others.  The Lewis House was all about caring for those around us.  We were a safe place for the kids in the neighborhood to hang out after school.   We gave out food and clothing and other household items.  We loved working together as a family helping those in need.  2 years passed by without me being pregnant, so I figured I was done, and just used my longing to have more children to pour into the children in our area.

April 2012 the waves of shock hit once again, staring down at a positive pregnancy test.  Let me tell you, fear struck hard.  Every milestone was agonizing – 12wks was milestone number one.  5 out of the 7 babies had passed away between 12-14 weeks.  Going in for our ultra sound was frightening.  But there on the screen was a precious heartbeat.  20 weeks was another milestone.  I wish I could say that the baby’s movement was enough to not let me worry, but it didn’t.  Fear overtook.  I shook all the way to the ultra sound appointment, I shook while waiting in the waiting room.  I shook as I laid upon the table, but there it was, a beautiful strong heartbeat, our sweet little girl alive and well. 

December 16^th 2012 our little miracle baby was born.  The nurse placed her on my chest and I cried right along with my Nisa Faith, she was here, her screams of life echoed in my heart.  The next milestone was taking her home with us. I documented on Facebook placing her in the car.  Then Sam documented us arriving at home and placing her in her bassinet.  Sam and I looked upon our sweet baby, with a higher than high excitement that we actually had a baby. 

Christmas Eve I woke up with a sore throat and headache.  But I pushed it aside and I enjoyed our holidays with our family.  Praising God that our own Christmas miracle had arrived safe and sound.

Every day after that, I felt worse and worse. Fevers started to spike and I started having abdominal pain. I shared on Facebook what I was experiencing and I had a bunch of people tell me that I should go to my doctor, it could be a uterine infection.  So went in to see my doc and was told to go straight to the hospital. 

Not even 24 hours later, 19 days after Nisa Faith was born, the “blood doctor” as he called himself, came into our room with tears in his eyes.  My heart stopped. His face was pale. You have Leukemia.  Nothing made sense after that.  It was kind of like being in a Charlie Brown cartoon. Everything the “grown ups” were saying sounded like a foreign language in a distant land. I was quickly wheeled down to a CAT scan and then rushed off to get my first bone marrow biopsy.   I laid there sobbing.  Yes the biopsy hurt like heck, but it was my heart that was breaking.  Flashes of our past flowed through my mind.  I remembered telling our kids that our little Josiah at 20 weeks in my belly had died.  I remember telling the kids about all the other losses.  I remember the wails each and every time.  I could only imagine how much more painful this was going to be.  I sobbed and I sobbed and I sobbed.  Even when the biopsy was over, I could not stop crying. The nurse sat there the whole time. She held my hand so tightly.  When I finally looked up to tell her how sorry I was for losing it, I cried even harder as I looked up to her own tears pouring down her cheeks, and she said “honey, don’t be sorry… you will never cry alone” – Once I had collected myself once again and got situated into a wheelchair, the nurse opened the door and there was my doctor.  The one who had told me to go to the hospital in the first place.  She too had tears running down her face and she said how sorry she was that she didn’t make it in time to be there for the bone marrow biopsy.  She held me and we cried together.

The time I spent at our local hospital were many moments just like these.  I started my induction right off the bat.  Our life became a whirlwind of change.  Flower Hospital allowed Nisa to stay with us, because she was so little.  3 ½ weeks later I was released a very different Allana, a very different wife, a very different mother.  I was too weak to care for my family.  I could hardly make it to the bathroom 15 steps away from my bed.  The most I could do was let my kids snuggle with me during a movie.  I lost my hair and became very embarrassed by my looks.  And I became sick Allana, sick wife, sick mother, sick friend to everyone around me.  These were the changes I wasn’t prepared for.  I didn’t know how much of me I was going to lose.

Our doctor suggested that we go to The Cleveland Clinic for the remainder of my treatment.  I was extremely scared being so far away from my family and church support.  And for me, it would be a major deal breaker if Nisa couldn’t be with us.  Even though I was a very different mom to her then I was with my other kids at her age, she still needed me and she needed Sam. She needed those precious moments where Sam would lay her on my chest and we would both fall asleep.  After losing 7 babies and finally getting my miracle baby, I was not about to let her go.  She needed me, but I needed her too. I praise God that the Cleveland Clinic was willing to bend rules for our personal experience.  My baby knows me and I know her.  The Cleveland Clinic made our very tragic change bearable by making our patient experience the best it could be.   

Managing Change:  Sam(4)

Managing change.  Two simple words, but they contain an almost unmanageable amount of information.  This very moment every single person here is managing a whole array of change, personal, professional, financial, physical, spiritual and probably in areas that I have not even conceived of.  Mapping every facet of change in a single person’s life could possibly exceed the complexity of the Human Genome project.  This is the Patient Experience so we are going to focus here on how as healthcare professionals you can help patients to manage the often overwhelming change in their lives.  However I would be remiss not recognize the importance of acknowledging the impact of change on your own lives even while you are engaging change in your patient’s life.  That brings us to my first point

Embrace the Change in Your own Life(5)

As a pastor I could certainly start preaching here, but I see the fear in your eyes so I won’t.  This will mean something a little different for everyone.  I have to believe that the Cleveland Clinic provides training and or resources in this area because throughout our journey here we were engaged time after time by professionals who embraced the change going on in their own lives.  This is not about engaging patients in one’s day to day issues or engaging in counter-transference.  It is about being a real person even as you are a real professional finding a path for the patient to manage change.    When we arrived (6) at the Cleveland Clinic 16 months ago we were in the midst of a hurricane of change, between the arrival of Nisa Faith into our lives and the exigencies of battling Acute Lymphoblastic Leukemia our world had turned upside down.  This combination of positive and negative changes in anyone’s life can be like warm and cold air crashing together in the atmosphere into a storm of epic proportions.  This is what walked through the door of The Taussig Cancer Center in February of 2013.  By this time Allana(7) and I were over a month into this storm and I had become accustomed to the variety of reactions to our story.  It was in these reactions that perhaps the clearest indication of one’s engagement with personal change manifests itself.  There is a quiet confidence to those who embrace the state of change in their own lives.  Out of this, even as the tears fall or the eyes share grief, there is a stability that says we can forge into this storm and be ok.  It is a stability that provides the platform on which one can build the stairway to change management.  Let’s take a look at those steps that helped Allana and I through our perfect storm.

Listen(8)

I am probably dating myself here but one of my favorite authors concerning change management is Tom Peters.  In “Thriving on Chaos” he makes this statement:

“First among equals is listening…Listening like so many of these apparently simple ideas, turns out to be anything but simple.  Since it must be practiced if we are to survive, it will become a mindset and a way of life for everyone-or else.”

Anything but simple, what an understatement!  I am only beginning to understand the complex web of listening that Dr. Advani and the staff of the CC engaged in when first presented with our case.  Fortunately for us they went far beyond just “listening” to medical history, consultations and the array of tests that precede the formulation of a treatment plan.  They listened to the chronology of change in our lives and the life of our family.  They listened to our emotional evaluation of the changes that had already taken place and our fears of future change.  They continued (and continue) to listen as a regular part of therapeutic procedure on a regular basis.

Evaluate(9)

“The best evaluation I can make of a player is to look in his eyes and see how scared they are.”  If I were a player facing Michael Jordan on a basketball court I think that there would be plenty of fear in my eyes.  However this quote illustrates the need to evaluate more than just the facts and figures.  It demonstrates how the listening process extends far beyond the mundane data and delves into the heart of the matter.  The team at Cleveland Clinic evaluated everything that had been exposed in the “listening” phase.  The treatment protocol was relatively straight forward, Hyper-CVAD with dasatinib.  However the new baby was a wild card.  She did not fit into the policies and protocols.  It is in the evaluation process that “wild cards” are exposed and measured against existing policies and protocols.  Here the team also begins to collate a strategy for change management because the evaluation is so much more than just medical.  Perhaps the most immediately salient non-medical issue is financial but family, emotion, pain and even suffering for not just the patient but caregivers and those to whom the patient had given care are considered.  The reality is that Allana and I pretty much just drifted through this process.  We were (and probably still are) unaware of all of the background activity that went into this part of the change management process.  Out of this activity comes the action plan.  Of course at the core of that plan is the primary objective.  In our case complete remission and recovery.  The final piece of the evaluation step is the riser to the next step in the stairway to positive change management.   It is an evaluation of the communication syntax or structure that will be most effective in the change management process.

Communicate(10)

Tony Robbins said this about communication:  “To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others.”  He succinctly establishes the riser from the second to the third step in our change management process.  As one whose stock and trade involves communication as I look back and can appreciate the evaluation process that took established communication protocols and evolved them to help us manage our lives within this storm that had engulfed us.  I am going to go out on a personal limb here and say that I truly believe that in the area of patient communication The Cleveland Clinic is the very best.  They have managed to create a culture of effective communication.  When a cultural value is established in a positive manner wonderful things happen.  Chemotherapy sucks!  I have nothing good to say about Hyper-CVAD except my wife is standing here today with me.  But from the moment we walked through those doors the communication process began.  The value of communication echoed from the red coats, to the registration desk, to the valets, to the medical staff and in that echo the message that “We Value You!” comes through loud and clear.  The communication process provided clarity, a vision of the other side of the storm or at least a visible path to head in that direction.  It is in this phase that Allana and I began to feel that managing change was again possible even as we entered what was probably some of the darkest days of our life together.

The final step in our stairway builds on all of the others.  Listening, Evaluation and Communication are pretty ineffective without Execution.  While the other steps are more or less passive, this step is the commitment to action.  For us it meant that the staff of The Cleveland Clinic threw themselves into the care of not only Allana, but of myself and Nisa.  While in some ways they bent policy to accommodate us, in many ways they wrote new policy and procedures to ensure the safety and comfort of not only Allana but of Nisa, myself and all of the patients on the floor.  I can only imagine that not everyone was completely onboard with the decision to allow Nisa on the floor with us but that is only my imagination.  After clearly communicating the plan of action arrived at through the evaluation phase, the entire staff executed that plan with commitment and expertise.  Housekeeping, Clinical Staff, Food Service, Hospitality, they all came together in what appeared to us to be a purely organic effort.  They provided that stable platform in the storm for us to begin to get our hands, our minds and our hearts wrapped around the changes that had already occurred and those that were still to come.  It was out of that stability that we could come to grips with the two months we would need to be separated from Nisa through the Bone Marrow Transplant regimen.  It was on that platform(12) of stability that Nisa would thrive, spending much of her first few months of life with us on the Leukemia ward.  Nisa’s presence with us made a bit of a stir I am afraid, perhaps even a little local fame.  It is completely unearned.  I stand here to applaud the entire staff of the Leukemia and Bone Marrow floor of the Cleveland Clinic.  As I said in the video, one day through many changes, I will sit with Nisa Faith and tell her about her other home, The Cleveland Clinic and how they helped her manage change before she even knew what change was.

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