Honoring Johnny Pye - Saturday 29th August, 2pm @ Bel Marin Keys Yacht Club

Looking forward to seeing friends and meeting friends from afar coming to pay their respects to my Johnny Pye.  A few photos for you below - keep scrolling down.
See you Saturday. 

Monday 24th August, 2015

If tears could build a stairway, 

and memories a lane.

We would walk right up to Heaven

and bring you back again.

No farewell words were spoken,

No time to say "Goodbye".

You were gone before we knew it,

and only God knows why.

Our hearts still ache with sadness,

and secret tears still flow.

What it meant to love you -

No one can ever know.

But now we know you want us

to mourn for you no more;

To remember all the happy times

life still has much in store.

Since you'll never be forgotten,

We pledge to you today~

A hollowed place within our hearts

is where you'll always stay. 

-author unknown

Thank you Ashley

Saturday 29th August, 2015

Saturday 29th August, 2015
2.00pm
 Bel Marin Keys Yacht Club
No 4 Montego Key,  Novato
Dress Code: White 

 bring a photograph of shared moment(s) with Johnny
you can add to the Memory Book with your condolences

 this is not to be too sad or a gloomy affair
our Johnny lived life, embraced life with every essence of his soul,
with laughter, stories, extensive travel, fine food, fine wines,  music, 
his natural, ever creative design mind, going deep out of the box to create stunning homes 
his honest  exuberance and deep founding friendships 
we all have a bit of Johnny rubbed on us
let us celebrate and honor him together

Wednesday August 12th, 2015

Family and Friends,

We thank you for your sympathy during our time of loss.  Your gracious words are of immense comfort to Lee and I, during this sorrowful time and will not be forgotten.

We have created  a "Johnny Pye Memorial Memory Book".  Should you wish to sign, add a photograph, write a poem, a letter to Johnny, or maybe even share a special moment you had with him.    You will find the memory book and a seated area for your comfort within our courtyard of our home.  For our international friends and family, email us and we will happily add your love to the "Johnny Pye - Memorial Memory Book".


All that we ask of you, is that  you do not disturb us by ringing the bell and refrain from asking to come in.  Please understand our deepest need for privacy and quietness during this emotional time.  Thank you for your understanding and kindness.


In lieu of flowers, contributions may be made to the Lustgarten Foundation for Pancreatic Cancer as per the link   Lustgarten Foundation 

There will be a Celebration of Johnny Pye's  life, a date will be determined in due time.

With kindest regards and love
Michelle & Lee 

Tuesday 11th August, 2015

Family and Dear Friends,

It is with great sadness that our darling Johnny Pye passed,  Sunday 9th August, 2015.

Please allow us privacy and quiet time in order for,  Lee and I to grieve appropriately.

With love and sadness
Michelle & Lee

Thursday August 6th, 2015

Johnny has asked me if: there can be no more visitors.
Please therefore respect his request and need for privacy and quiet time.

Thank you.

Message from the Hutchinsons - Our Scouser's from Liverpool

Dearest Johnny

This note to you is a "long LONG" time overdue, the truth is; I've never known what to say. I didn't want to say the wrong thing, put the proverbial foot in the mouth! I always wanted to have the right words of comfort and say something to make you smile. The fact is, not a day or week has gone by were you and Michelle have not crossed our minds.

This last year; I just cannot imagine what you have both gone through, I only know from the raw, heartfelt updates on the blog from Michelle (and Lee) what an emotional journey it has been thus far.

You both have AMAZING strength, fighting spirit, courage and such love for one another.

I'm sad that we lost touch with you guys after having Molly and Lucy. Having 2 young children after waiting what seemed like an eternity consumed our lives (especially being 'old' parents!!! That 'get up and go' - got up and went!!!) But I'm so happy that we got to spend so much time with you both on the many occasions we got together.

The boat cruises, countless dinners, cocktails, parties!!!

We know you have a huge network of friends and family, with much love and outpouring support and realize that it's never an imposition; No matter the time or distance, to reach out and reconnect. So PLEASE know that we love you Soooo much - You are always in our hearts and that we are here for you; and will always be here for Michelle in any way possible. All our love and prayers are with you both.

I remember kayking with you guys on one of my birthdays and picnicking at the Russian River. 

Talking of watersports - I remember how patient you were trying to teach Graham and I to waterski out on the lagoon. Try, Try, TRY as I might, I just couldn't do it! Almost.... but not quite! Graham couldn't get up either - but that's another story! I remember the afternoon parties - lazing on the lagoon on the big "floaty thingamajig" - and also the time we cruised with our past puggies - life jackets 'n' all! .... And bringing our girls over - maybe that was the first time you met Lil Lucy?! You have always been so welcoming, warm and friendly and both of you - amazing, fun and loving with the little kiddies!

Talking about first time meetings - I'll never forget your pint sized love with a personality bigger than anyone I've met!!!! - yelling across the Greenbrae parking lot to us after spotting the GB sticker on our car - funnily enough not even put there by us but the previous Russian owner?!?! Anyway! That was the beginning of our friendship - the first meeting with you at your lovely home to watch the World Cup Final!

We have such happy memories of so , SO many events with you both.

I know it's harder NOT reaching out and NOT saying anything, than not knowing what the 'RIGHT' thing to say is?

Hutchinson Family

Message from Johnny's son - Lee Carter Pye

August 2, 2015 . . .

I sit here in a chair in the corner of my dad’s lavish room, darkened by nightfall.  A single candle sits on the mantle, illuminating the room, reflecting off the full height mirrors that encompass a king size bed which sleeps my courageous dad.  Two puppies lie on the floor by his side.  Always by his side.  One of the puppies, Squeak, the boy, has an undoubted sixth sense of the pain my dad is enduring.  His tail is normally up and wagging frantically, but in this nervous time his tail points down, still, flat, between his little back legs.

My dad lies in bed in and out of a daze, sometimes while sleeping, sometimes while awake.  His breath is occasional and sharp.  Michelle darts in and out of the room, making sure my dad is ok, and comforting me.  She is strong.  She holds herself together so well and stays positive for my dad.  As she leaves the room I hear her wander further away and break down into tears.  Her staccato breaths and cries echo throughout the hollow silent house.

Michelle firms up her voice to dial hospice.  We are told to administer morphine and drops to ease my dad’s breathing.  The two puppies jump on the bed and lay down beside my dad as the four of us sit by his side ready for another four-hourly medication.  I sit down at the foot of the bed, hand on the bridge of my dad’s foot.  Michelle gently waking my dad to administer the medicine.

Medicine.  Sometimes I wonder.  Sometimes I question the medical field.  Sometimes I wonder if medicine does more harm than good.  Two years ago my dad was his happy, charming, witty, intelligent, cheeky self, life of the party, dressed to the nth degree, dancing the night away.  He was continually building the oasis that is his home and a business that has thrived for years through word of mouth for a quality and perfection of work my dad expects of himself.  So I wonder what if.  What if we skipped or reduced chemotherapy?  What if we continued as is without it?  I suspect that had we found out about the developing cancer sooner, my dad would have been on chemo sooner.  The chemo would have done its damage sooner.  My dad may have faced the stage he’s at now, sooner.

Having said that, the morphine has helped.  My dad asks for us, puppies and all, to clear the room so he can sleep.  I sit outside the bedroom door on the floor continuing my inner thoughts as I type, free-writing.  Michelle sits down in the hall across from me, trying to stay strong, playing with the puppies to lift their tails.

Every day I sit by my dad’s side, mostly in silence.  His spirits are low in the morning but gradually pick up throughout the day.  It’s as if every day he wakes up and realizes that this is not just a bad dream.  I am at a loss.  I don’t know what to say.  I don’t know what to do.  I am a man of few words.  I try to tell my dad what’s going on in my life, with my job, or talk about sports, anything to try to clear his mind.  My dad’s expression is blank, unreadable.  He could take down the World Series of Poker with his poker face.  I continue to tell stories, some new, some reminiscent.  I wonder if my dad is interested or processing.

Since I’ve grown up our conversations have always been about work hard, play harder.  My dad simply wanted to know how school or work was going, if I was out and about partying like I should, and the latest details of any ladies in my life, always wanting me carry on the lady charming he instilled in me but nothing too serious.  I tell stories.  I show him old photos of us.  I show him new photos of projects I’ve worked on, places I’ve been, and, probably getting the biggest reaction out of him, photos of girls I have dated.

Like my dad, our Virgo methodical nature and strive for perfection sometimes gets the better of us.  He has high expectations for me, never quite revealing how proud of me he is.  Like my dad, we have no problem complementing and showing complete chivalry to a lady, but never quite revealing our appreciation and admiration of each other.  I hear through others often how complimentary and proud my dad is of me, and it warms my heart.

So in a way, this is my means of expressing how I feel about him.  I can hardly muster up a word to say face to face, but I could sit and type pages on how cool, enviable, and hip my dad is, despite him still believing a fax machine is the be all end all technology.  He has a natural charm and could woo any woman tearing up the floor boards off the dance floor, leaving the muscle men in the corner wondering why their muscles aren’t working.  To this day, he still mentions going to places I’ve never heard of, seeing things I didn’t know existed, and done things I never dreamed of.  At a young 58, he has already lived twice the life of those twice his age.

I have not lost someone this close in my life.  It still doesn’t feel real.  I don’t know if I’m handling it as I should, doing what I should, saying what I should.  I process things internally and don’t show much emotion.  My dad is the same.  When we’re sat side by side, not a spoken word, I know my dad is analyzing and processing every little detail like me.  My dad will never sit at peace until he knows the million things always turning in his mind are accounted for and sorted.  Now, I know this list is shorter, the essentials.  I know his deepest concerns and natural caring nature lie within his amazing pint-sized wife Michelle and his muscley 6’3 of a son.

I try to reassure my dad that everything will be ok, especially with his rock, Michelle.  Michelle is family now, Michelle is a Pye, and Michelle will be looked after by me and the amazing friends, puppies, kittens, and support that surrounds her.  I tell my dad that Michelle will meet her little Johnny Pye grandchild one day, which I am now on the clock to deliver all of a sudden.

But the truth is, Johnny Pye lives on in us all.  He’s changed peoples’ lives and brought out the fun side of things.  Whether my dad and I are near or far apart, speak often or occasional, going through good times or tough, he’s always with me.  Even my mom says often, particularly when I pull a face, “You look just like dad then!”  To which I reply by pulling another face “just like dad”.

Normally, my writing is very structured, logically ordered.  But my mind is in chaos, random thoughts comprise my mind.  I don’t have answers.  I don’t have direction.  I don’t have a message.  I just write freely to try to put everything into context.  What can I do?  What can I say?  Don’t leave me dad . . .

Love Lee

Messages: for Johnny & I Wednesday 29th July, 2015

Message from the Green Residence: London

Please don't feel you need to respond but I wanted to get in touch as I have been following your blog with deepest sadness since first hearing your news.  Your messages have been an insight into the wonderful times you and Johnny have shared together and the beautiful love that you have for each other.
  You are truly an inspiration and a pillar of strength and my love and best wishes are with you.  I am taking on the London 3 Peaks in October to support the fantastic work that Stand Up To Cancer does and you will both be in my thoughts at this time.

Thinking of you.

Message from the Milmine Residence: New Zealand

Just caught up on your blog update and want to send so much love to the two of you. Words seem very inadequate. Neither of you deserves this and it's completely unfair. Sending you all the love and strength imaginable. Xxx

Message from the Raven Residence in London

How you doing today gorgeous girl. Heart of a lion, let me know if I can do anything big x

Message from the Moynihan Residence: New Zealand

I have never met your darling Johnny but i can tell from your posts and knowing you from deutsche bank in london that he is an incredibly special person. My heart breaks for you both and the rest of your families. We are sending you both lots of love from nz.

Thinking of you love shelley and family

Message from: Marni Doyle to Johnny

Marni - thank you for your beautiful message.

Hi Sweet Johnny Pye,

After hearing the latest news there's some things is like to tell you / remind you of. 

You are and have been my favorite person that I've ever lived with. I've loved you and have adored you for all of my adult life. You have taught me to appreciate the finer things in life-food, people and dancing. Which I still savor and thrive on. 

While being your roommate I had the most fun I've ever had. We skied, partied, went up the river, and hosted the best Thanksgiving and Christmas parties ever. 

My best memories of our time as roommates are The mornings enjoying tea and toast before our morning ski and a chat before heading off to work. We would always try our best to stretch our morning time. "Well I don't need to shave my legs that'll give me five minutes." 

They will always be the best send off to the working day I've ever had. Love those memories and brag about them often to anyone who will listen because it was the stuff dreams are made of. 

The days of the limo. Loved so much going to the city, dressed up and going to the most happening places. Again and again. Remember the time we were trying to get into the latest club and there was a line around the block? I jumped out of the limo and said to the head bouncer , "my name is Marni and I work for Lucasfilm. Do you realize I have Johnny Pye in this limo? He really wants to come in.." And they let us all in free of charge! Ha ha ha! Lol! We danced the night away. 

I loved going to breakfast and to the movies However, my favorite limo time was when we would tow the boat up to Tower Park behind the limo. Remember that? People would drive along side us and take pictures of us like we were movie stars. I think...we were not movie stars but Rockstars. 

I'm so happy that you and Michelle found eachother again and had some beautiful years together. The moment I met her and saw the twinkle in your eyes I knew she was the one. For her birthday on the boat I thought the cake you ordered with your picture of you both then and now was so utterly romantic I have to admit I was a bit jealous. She is so unbelievably amazing and I'm so happy that you came back to true love and that she's been there for you. I'm honored to have her as a friend. 

I love you Johnny. I'm so sorry and totally disgusted that I've not been there more to see you and support you and Michelle. I adore you both. I kept telling myself you were going to be just fine. 

Johnny with Marni 

I want to tell you that Gary and I have had many conversations about my job and what you have both been through. You've  inspired me to quit my stressful job and concentrate on my life and count my blessings. I just did this three weeks ago and I'm feeling so liberated and free I can not even express. I'm breathing well for the first time in a long time. You and Michelle were both so clear and I've listened. 

I hope that you, Michelle and Lee have some quality time together and that your feeling the sun on your face. I'm hoping that you are calm, comfortable and peaceful surrounded by love and light.

I love you Johnny 💜😍💋

I'll ski you soon. 

Best as always, Marni

Sunday 26th July, 2015

Dearest family and friends,

With utter hopelessness and  heartache deep in my soul,  I am sorry to tell you, the cancer has an overwhelming firm grip upon my darling Johnny.   He now has a highly developed Sister Mary Joseph Nodule in his umbilical cord, refers to a palpable nodule bulging into the umbilicus as a result of metastasis of a malignant cancer in the pelvis or abdomen.  At the second round of the clinical trial we were denied, due to his severe failing health.    Johnny of course, did not believe the doctor, and try as he might to negotiate, we were told unfathomably that we need to spend as much time together as possible as time is short. 

It is the strong-headed, determined, belligerent, fighter side of our Johnny’s character which has got him from nowhere to living in one of the most prestigious counties in a large elegant house, built lovingly with his own hands, and with me as his  wife, by his side. 

Of course, we are not surprised Johnny is going nowhere without a fight.  He knows as well as we all do that he is not going to win but he has scored almost 10 months off his opponent and if he thinks there is the smallest chance of winning weeks or even days,  our Johnny will undoubtedly fight.

Johnny is  already sleeping a lot, which is good.  But when he is wakeful, he is still fighting.  When the pain becomes intolerable he is given Morphine,  dosage has been increased due to pain levels escalating,  we need to ensure Johnny is in no discomfort. 

As far as Johnny is concerned he has been cheated when he still has so much to live for - namely family in Liverpool, me as his wife, close friends and living life to the maximum.

Hospice are magnificent, their visits and calm reassurance that the patient my dearest Johnny is in the best place possible for his needs.  Here at home by the water.

We await Lee Carter Pye's imminent arrival this weekend, for father and son time together.  Please respect "their time" they need.  If you wish to visit please email me or call me.

Special thanks to our exceptional friends who have committed their time on a daily basis out of love and friendship to  Johnny and I, over these horrible months, making sure  he/we do not feel "alone or abandoned",   along with watching over me, allowing me to lean upon them for significant emotional support.


Special thanks 

(in no particular order);

Kavie Von Husen

Bill & Ashley Timmel

Michael Bell & Jennifer Reed

Hartley Smith

Courtney Lewis

Lee Carter Pye

Andy Pye

Cindy Root

Lourdes Esquival

Arabella Cooper

Susan Foley

Danielle Graves 
Deborah Holland

Saturday 27th June, 2015

A week of our Clinical Trial.

UCSF Helen Diller Family, Comprehensive Cancer Center, Mission Bay. 
Three full days we have spent in the city.  

I can honestly say I have never spent so much time on the road driving in and out of the city.  And, of course, my driving is not quite as good as Johnny's.  Not a time to have a driving argument.  Once upon a time heading into the city was for fun.   Now it’s a need, a necessity and requirement. 

We cannot "fib" to you, it has been strenuous, since no chemo in May.  Johnny's weight has deteriorated significantly, I have lost count of the amount of butter, eggs full fat milk, cream added to his food. Weight gain is significant.  It's important.  The body requires fuel to fight.  Johnny's loss of appetite, requires me to become more  creative with meals. Tiny morsels at time it can take 40 minutes to eat a meal and then to not complete his plate.  With profuse apologies he pushes it away.  Its OK – eat what can love.  There is nothing he desires to eat.  The pain continues, to beat him down.   The narcotics, help relieve the pain, he has to take far too many, which in this case, leaves him befuddled with speech, slurry of words, enunciation, and absent mindedness. Over medication comes to mind, to which the doctor  lowered the dosage, having never met a patient on such a high dosage.  Johnny slowly moves, shambles around the house,  holding his stomach, with a brave face.  I wince, hard to see a strong man, my man, my husband my soul-mate, punished, whipped down to his weakest.   It is as though he is being hounded by a  masked executioner.  Johnny continues to amaze, he fights to live life.  He tells me he does not feel as though he has one foot in the grave, just yet.  

UCSF  Mission Bay, driving right through the city, chock-a-block with traffic, all of 90 minutes, is  challenging, to say the least.  Time of day, morning,  does not help.  But,  UCSF, a new campus,  clean modern and slick is exhilarating,  fascinating, new technology, dynamics of the doctors and nurses, swift check in questions, strong questions in need of the right answer to ensure Johnny is able to participate in the trial.  The desire to ensure Johnny is "comfortable". 

Tuesday 23rd June: Week 1-Day 1 - Doctors Consult

 Blood work is drawn, three tablespoons of it, in order to evaluate his general health.  We meet Dr. Tom Weber, who gently prods Johnny with questions, listening patiently taking notes.  He took his time, no rushed appointment, it was all about Johnny.  Caring and understanding.  One of the questions he asked "how are you feeling, are you up and about or lying in bed"?  to which I pipped in saying "are you kidding he has put in two skylights,  hardwood flooring, created a front courtyard, paved, with double open doors, new roof, new bathroom and now he wants to have new kitchen cabinets and change the granite, oh and yesterday he is hanging the hammock and a washing line".  Johnny proceeds to get his iPad out and show the doctor photographs, whom is suitably impressed.  "Well what do you do when you are not creating a home"?, "Oh I have a racetrack and race cars around the house".    Dr. Tom Weber says well in that case we are more than good to go, with a nod to the nurse.  I asked what did he mean?  Well,   "The last patient I had to turn away as he did not qualify for a clinical trial,  he was not active enough, he was in bed all day".   So my friends, that have seen our Johnny of late, it is a good thing Johnny is doing what he wants to, in order to keep his mind activated and stimulated.   Creating a beautiful home for me, the puppies and kitties.

Tuesday 23rd June: Week 1-Day 1 

Cyclophosphamide. Chemotherapy, a low dosage. It works together with the GVAX Pancreas Vaccine, along with a nice bag of saline to hydrate Johnny.  Side effects, fever, sweating,  we were up most of the night wiping him down changing the sheets.  Not much pain but still with some.  As he sleeps before our next appointment, (Wednesday), I checked in on him, curled up in a fetal position, bundled up in the white fluffy duvet, puppies buried within, wrapping themselves around him.  Rest my darling rest.  

Wednesday 24th June: Week 1-Day 2

GVAX Pancreas Vaccine.   Six point of injection sites are used: four upon each upper thigh, and two upon his left arm.   The injection sites requires the main points to be numbed for 45 minutes before injecting.  Once injected, the GVAX Pancreas Vaccine  sits under the skin surface a bit like the TBD injections we had as a kid in Great Briton.  The vaccine is a bubble of fluid and  disperses throughout the body gently.  We hope without any reaction.  No redness no itchiness, no scratching no swelling.   

Friday 26th June: Week 1-Day 3

Return to UCSF for evaluation and review any injection site reactions.    Currently there are none, thankfully, but we await the doctors consult. Our next appointment will be July 16th and 17th, for a repeat performance of the above and the CRS-207 drug.  Each day visit has been at least 5 hours. 

"In this randomized controlled Phase 2a clinical trial the combination of "CRS-207 with GVAX Pancreas",  demonstrated a statistical significant improvement".  

With love – Michelle & Johnny

Tuesday 16th June, 2015 - Clinical Trial

Good afternoon,
Friends and Family,

Today Dr. Andrew Co, from UCSF Cancer, called and confirmed:
Johnny has been randomized into "ARM A" for the clinical trial.
Good news this means he will receive the following: this is the main drug we wanted him to be on. 

Cyclophosphamide/GVAX Pancreas vaccine and CRS-207 over the following weeks:
2 doses of Cyclophosphamide and GVAX Pancreas vaccine, three weeks apart;
4 doses of CRS-207, 3 weeks apart;
total of 80 patients includes our Johnny
this trial is a total of 20 weeks.  Dr. Andrew Co. hopes this will help Johnny.   Know that this is not a cure it's helping Johnny. 
 
As a reminder:
GVAX Pancreas Vaccine, sponsored by Aduro Biotech. Only 240 people will be enrolled, from different participation centers. The GVAX pancreas vaccine is made from other patient’s pancreatic cancer cells.  The cells were changed in a laboratory to make a protein called GM-CSF.  This is done by putting the GM-CSF gene into the pancreatic cells.  A gene is a piece of protein (DNA) with a message on it that tells a cell to make something.  In this case the message is to make more GM-CSF than it would normally make.  GM-CSF helps to activate the immune systems cells to recognize and attack the cancer cells.  Because a gene was inserted into the cells of the other patient’s cancer cells to make this vaccine it is therefore called “gene therapy”.

Johnny has been having a miserable time, we both have of recent. 
Please keep sending you love and emails: johnnypye@yahoo.com he does enjoy reading them.
Regards
Michelle & Johnny

Thursday 11th June, 2015

Hello Friends and Family.

Thursday 11^th June, 8.45am, I am pulling into the office, car park.   UCSF Cancer hospital, pop up on my caller ID.  Sara, I ask “do you have a magic wand for me today, has my appointment for Johnny been pulled forward?”  “Yes I do have a magic wand.  Today at 11.45am can you do it”?  “Yes we can”.  

I run into the office send an email to my two bosses explaining the situation and run back to the car. Home bound to pick up Johnny, thinking to myself, I am going to have to push him, (it takes Johnny a long time to get ready, he potters, ponders and wanders), ready for the drive into the city to UCSF Helen Diller Cancer Center – Mission Bay.  All of a 90 minute drive.

Dr. Andrew Co and his coordinator, examine Johnny, along with a list of questions, in order to gain more background on Johnny.  More blood work and cardio examinations.  CT Scan Monday 15^th June, ready for UCSF to review on the 17^th June, for possible submission to commence the trial on Tuesday 23^rd June.   Remember, from my previous blog, (as per below), trials are strict, strict criteria.  From our last CT Scan in May, he had trace amounts of fluid in his abdomen.  Dr. Co is adamant, no acceptance into the trial if he has fluid.  It can’t be drained.  No other trials will accept Johnny if this is the case.  The other trial is a PARP Inhibitor Trial, but this works if Johnny has a certain “BRCA mutated tumor”.  The other alternative would be to go back on the first round of chemo that really put him through hell.  We both know he  can’t do this emotionally and physically.

To date, friends and family, Johnny has been in significant pain, it’s constant, always there, the pain never leaves, starts just below inside his rib cage and drops down past his belly button.  Sometimes moving towards the back.  It’s a typical pancreatic pain.  Always there, a sharp stabbing bayonet cutting, twisting and turning.  His weight has dropped to 125.  My Johnny is a skeleton of skin.  Intake of pain medications to relieve the pain has been critical of late.  He awakes me at 2am telling me he is in much pain, distress, in need of medication and comfort.  Level of pain these days is a 6-7.   It’s the cancer we are told.   The emotions, sadness, along with a feeling of “pure acceptance”, I see upon him is dire.  The pain, anguish, heartbreak of possibly leaving us, knowing he probably does not have long, he is trying to mentally put things into perspective.   Today was tough, exhausting, we are home, I put him in a lovely bubble bath, wash him, caress him, the puppies can tell, their master is really sick, they come to sit and watch over Johnny, he sees them and the tears fall, they drop, splash upon Squeaks nose, he licks his master's salty tears, as they fall spilling into the bubbles, as I bath  my darling Johnny, reassuring it will be OK, I am here with you, Bubble n Squeak are here.  Johnny is crushed, wounded, lost, empty and dejected.   We are at a loss.  

“GVAX Pancreas Vaccine, sponsored by Aduro Biotech. Only 240 people will be enrolled, from different participation centers. The GVAX pancreas vaccine is made from other patient’s pancreatic cancer cells.  The cells were changed in a laboratory to make a protein called GM-CSF.  This is done by putting the GM-CSF gene into the pancreatic cells.  A gene is a piece of protein (DNA) with a message on it that tells a cell to make something.  In this case the message is to make more GM-CSF than it would normally make.  GM-CSF helps to activate the immune systems cells to recognize and attack the cancer cells.  Because a gene was inserted into the cells of the other patient’s cancer cells to make this vaccine it is therefore called “gene therapy”.

With participation within a trial, it is accompanied by a 43-page consensus document, criteria, screen procedures and pre requisite requirements. A computer program will incorporate all of his data and place Johnny in one of the three “Treatment ARM(s)”.  It’s randomized, neither Johnny nor our doctor can dictate or know which Treatment ARM Johnny will be selected for.

Until then friends, we await for Dr Andrew Co’s approval or not.

Please send Johnny your love your funny stories what has been happening with you in your life. 

His email: johnnypye@yahoo.com

Sunday 7th June, 2015

Hello Friends and Family.

Tuesday 19^th May, Bobbie Head's office told us, our chemo regime of Abraxane and Gemcitabine is no longer working.  From examinations of the CT Scan the week before, the cancer has spread to Johnny's lungs. “Innumerable bilateral pulmonary cavities in his lungs which have increased significantly”.  “The lung walls have thickened, along with accumulation of fluid in his abdomen”.  Johnny's breathing is laborious, considerably so.

Chemo has been hell!  But without the chemo, Johnny would not be here.  The chemo was our army, killing the cancer on our behalf.  And, now with no more chemo there are no soldiers to fight on our behalf.  As, Johnny become weaker the cancer becomes stronger in the body.

No more chemo.  That is it.  Done.  The news was given with the greatest care, respect and sadness.  Dr. Lucas, head of Marin Cancer Care, was sincere with her kind deliverance.  

Again, not the news we wanted to hear.  Deep down Johnny knew, his body has changed, incredulous drop in weight, the slowest of movements, the feeling of cancer, the return of the heavy nightly sweats, the return of seven shirts a night, the numerous bed linen changes.   I awake at the slightest movement of Johnny, I watch how he awakes during the night, removes a shirt, wipes his body down with a towel only to put on a fresh shirt.  This is all done eyes closed, in mid, deep, sleep.   The pain has increased ten fold, dosage of medication, doubled and intake doubled/tripled.

What next?

Clinical Trial at UCSF.  

What is a Clinical Trial?  What does this mean you might ask?  It’s a study.   There are currently two clinical trials.  One we know of, is GVAX Pancreas Vaccine, sponsored by Aduro Biotech.  Only 240 people nationwide will be enrolled, from different participation centers. The GVAX pancreas vaccine is made from other patient’s pancreatic cancer cells.  The cells were changed in a laboratory to make a protein called GM-CSF.  This is done by putting the GM-CSF gene into the pancreatic cells.  A gene is a piece of protein (DNA) with a message on it that tells a cell to make something.  In this case the message is to make more GM-CSF than it would normally make.  GM-CSF helps to activate the immune systems cells to recognize and attack the cancer cells.  Because a gene was inserted into the cells of the other patient’s cancer cells to make this vaccine it is therefore called “gene therapy”.

With participation within a trial, it is accompanied by a 43-page consensus document, criteria, screen procedures and pre requisite requirements. A computer program will incorporate all of his data and place Johnny in one of the three “Treatment ARM(s)”.  It is randomized, neither Johnny or our doctor can dictate or know which Treatment ARM Johnny will be selected for.

Our appointment with Dr Andrew Ko at UCSF is scheduled for Monday 15^th June.   If not earlier.

Johnny wanted to go away.  Memorial Weekend.  I was set against, foreseeing health issues and struggles. But I have to allow Johnny to be able to live.  Cabo and sunshine beckoned us, shared with good strong solid friends.  Moments, cherished, building another layer of memories.  Our friends understand Johnny, understand his pain, his struggle.  They have shared the path together with Johnny.  Their patience, love and care makes Johnny feel loved.  Choosing carefully restaurants Johnny would like, only to change the timing for Johnny at a moments notice in order for Johnny to rest more.  Chilled moments poolside, cocktails and laughter.  For one split second it was a normal day.  Holidaying with friends.

United Airlines were superb. We had wheelchair access throughout the air trip, pre-boarding with excellent seats.   Once landed in Cabo, a turbo charged wheelchair met us at the gangway.  Whilst seated, Johnny looked down at the ground, before looking up at me saying "Is this not for old people"?  "Sit and relax honey" was my response.  We bypassed five plane loads at customs,  immigrations forms were completed on our behalf and in a taxi headed to our hotel.  From what could have been a 90-minute wait at immigration, turned into a 10-minute trip, from landing, immigration and taxi.  Superb.   No wait, no line, no silly questions.  All paperwork was done for us,  out and back to San Francisco. Lovely.  

Until then friends, we await Monday 15^th June at UCSF.

Please send Johnny your love your funny stories what has been happening with you
He would love to hear from you.  His email: johnnypye@yahoo.com

With love and tears

Michelle & Johnny