Thursday, June 11, 2015

Thursday 11th June, 2015

Hello Friends and Family.

Thursday 11th 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 15th June, ready for UCSF to review on the 17th June, for possible submission to commence the trial on Tuesday 23rd 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. 

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