Here I am …

I told myself that I would never write on John’s blog again.  During this phase of John’s journey my emotions are too raw and I feel too exposed.  Yet, here I am.  I don’t have anything profound to say because there truly are no words to express what is happening to us and how we are feeling – we are broken in a way that is indescribable. 

You all are so supportive so, I’d like to share with you a general update on John.  His MRD (minimal residual disease) has risen from 0.022% 10 weeks ago to 0.134% as of last Monday.  It’s moving but it is still considered low level.  In fact, any hospital other than St. Jude would not even consider this a relapse (all other hospitals consider 3% a relapse).  We aren’t naïve, we know what rising, persistent MRD means.  Why isn’t it blasting off?  The Leukemia is being held at bay by my donor cells – he remains over 99% donor cells.  The graft and the Leukemia continue to battle it out and slowly the Leukemia is chipping its way back into John’s life. 

Since we believe that John experienced Guillian Barre (GBS) as a complication of his new immune system rapidly engrafting, we (especially John) are choosing not to give a DLI (Donor Lymphocyte Infusion), Natural Killer Cell Infusion or chemotherapy of any type – to prolong his life.  We fear any stimulation of his immune system will reignite his GBS and that is not how we/he wants to spend his remaining time.  John is guiding us on this last leg of his journey and we continue to follow his lead. 

How long could this go on?  When will the lymphocytes blast off? (The term “blast off” is used because it’s lymphoblastic Leukemia).  No one knows exactly - it could days, weeks or months.  Patients are typically NOT monitored as closely as John was/is post transplant, so other patients could go months and months without monitoring of possible detectable leukemia therefore, we have no data to compare John’s trajectory to. 

John is still recovering from GBS.  He’s making progress with his physical therapy but it’s slow and very painful.  This is just another example of John’s UNSTOPPABLE DETERMINATION.  He is painfully aware of his prognosis but continues to push himself to achieve his goals - sitting up independently, standing with assistance and hopefully walking with an assisted device.     

We are NOT giving up.  We are very much still fighting – we just aren’t fighting for his unattainable cure.  We are fighting for quality of life.  We are fighting for DIGNITY before Leukemia consumes him! 

We are grateful for the care of our St. Jude family.  They continue to support our choices, wishes and goals unconditionally (although Dr. Pui has had the hardest time letting go – he loves John so much and still finds it difficult at times to “comfort” John instead of “treat” John).     

Thank you so much for the thoughtful cards, letters, texts, emails, care packages and generous gift-cards.  We appreciate every single one of them.  We feel the love from our family, friends, neighborhood, school (CPS), community and the financial services industry.  You all have made a difference in our lives and we are thankful that you continue to walk this journey with us.  

Please continue to pray for John’s comfort and peace.

Love, Kathy

 

Save the Date: St. Jude Evening of Hope, March 12, 2016 Ritz Carlton Urban Garden, Charlotte.

 

Our Memphis address:

Target House I

Patient John Hagen

1811 Poplar Avenue, Apt. #103

Memphis, TN 38104

 

John’s Unstoppable Determination has inspired and united many.  Thank you for continuing to share how his resolve and strength has impacted your life.

 

Below is a letter from Kevin Murphy, written to John after hearing

the news that he relapsing yet again.  (shared with his permission)

 

Hi John –

I am a friend of your Dad’s through work.  I, like countless others, have been inspired by your determination and spirit.  I hear a lot of people talk about an indomitable spirit, which clearly is something you possess.  The term indomitable refers to something that can’ t be beat.  Spirit is that divine consciousness that we all share.  So, someone with an indomitable spirit has really just discovered the strength that is within us all, and that is what lasts forever.  Therefore, it can never be beat by anything in this world, because everything in the physical world we see is finite, and that internal strength we all share is infinite.  I am sure it is hard to comprehend why your journey has taken the path it has.  Bringing your family closer together in an indestructible bond may be one reason, but we never quite realize why things happen the way they do.  There are always life- learning lessons that we accumulate along our journey, and those are valuable to us, but it doesn’t encapsulate all the lessons that others have learned from our journey.  Selfish people live their lives focused on themselves, and how their actions and behavior impacts their self.  Selfless people live their lives focused on others, and how their actions impacts them.  I have only met you once, John, but you are one of the most selfless people I have ever known.  There are countless people who have

been inspired through your actions and behavior, and they will continue to carry a part of that indomitable spirit that you have passed to them.  You know, they say the word inspiration comes from the term “in-spirit”. Well, by being in-spirit, or in connection with your inner strength, you have been an inspiration to more than you will ever know.  Whether we realize it or not, we are all just participants in the movie of life.  Unfortunately, too many people get caught up in what is going on around them and never take the time to actually watch the movie while it’s going on.  Either we can identify with the person who is in the movie, or we can identify with the person watching the movie.  The person in the movie is our physical being.  The person watching the movie is our eternal being.  When we are aware that we are watching the movie of our life, we have joined forces with the eternal self that we all share.  Watch the movie, John, and you will connect with all the love and compassion in the people all around you.  That is what is real.  That is what never dies.  That is the true meaning of life.

With great love and respect,

Kevin Murphy