Hello to you all...I'll admit I absolutely hate that I'm joined to this forum,  but I'm also so so grateful that is here. 

My father,  the most amazing, kind, giving, loving, gentle soul has AML.  He has always been a big strong healthy man.   He could do anything and was good at everything.  It started with a sinus infection he couldn't kick.   Then he developed a purple rash like mark on his back side that wouldn't go away. 

He came to the hospital where I am a nurse at and it was the first time he'd ever gone to a hospital EVER!!!!!!!  Seeing him in that bed,  in that gown was shocking. I knew deep inside something terrible was wrong.   A bone marrow biopsy later revealed he has MDS. We were relieved as this wasn't Leukemia! !!!...........yet.  They took him to OR to clean out the "necrotic tissue" on his back side only to discover it wasn't dead tissue at all.   This left him with a large painful wound on his buttocks very close to private areas...in a man who now has no immune system.  He could hardly sit and it needed to be kept clean.   It was bad.  They didn't know what the purple mark was. 

Outpatient light chemo was supposed to keep things at bay but within months he progressed to atypical CML, and then shortly thereafter AOL with a 6:9 translocation  (very rare. ..poor prognosis) He developed a rare skin disease called Sweets Syndrome that comes from this awful disease leukemia. Purple blisters all over his body like a leper. Painful biopsies. ..and groups of residents with cameras taking photos of my father's body.  This is what was on his backside prior.

Being only 62, extremely healthy he decided on chemo.   Due to age he had a somewhat reduced chemo. 

Induction chemo almost killed him. ...or the fluid overload that happended with bags and bags of fluids given to him for low blood pressure.  Intubation and his heart shocked 5 times because he went into a rapid a fib. He made it out surprised everyone.

A month in the hospital for induction. ...a month for consolidation....what a patient man,  he never complained.  And the amazing news of remission ! Then the long wait of finding a bone marrow donor.  But alas we did and it happened. We were so excited.  Things were looking great,  his numbers doing what they supposed to.  

My dad developed a rash though. .this time different than before.  Hot pink-red skin head to toe,  itchy as hell, and flaking off constantly.  We're initially told graft vs host disease and that it's a good sign.

He was doing great and then I saw changes in his counts that were reminiscent of when he first got diagnosed.  High WBCs, low Hemoglobin and Platelets.  I had a bad bad feeling. 

Blood work and bone marrow biopsy ultimately show the graft failed. 

Back to out patient chemo and wait for a plan.   Dad still with the rash.  Now we're talking 3 months ago more things start happening.

Dad starts needing transfusions platelets here and there.  His blood pressure starts getting low constantly ,  he starts falling out of the blue.  He develops CMV  (cytolmeglovirus) and other here and there infections.   He's now getting antibiotics that he's giving himself at home from picc line.

Then he falls actually at hospital going to doctor appt, hits head has a brain bleed  (bc his platelets live around 8 or 9) (normal value 150-300) and then goes into septic shock...spends days in the ICU.

He goes home and over the course of 2 months falls about 8 times.  This big man now skinny and weak on the floor.   He doesn't even know when he's about to fall.   He will just be walking around...doing chores.  A couple more hospital stays from falling,  a helicopter ride from another brain bleed.

And that brings me to right now.   They offer my dad a phase 2 clinical trial ERK inhibitor drug.  He almost didn't get on due to his skin rash.  He's taking the bright yellow giant pills as directed.  We're all so hopefull because this drug attacks one of the specific gene mutations he has.  4 days in to this treatment he falls. ..comes in hemoglobin 6 and dark brown  bloody stool.  So now. .....he's never had stomach issues before,  why is he bleeding.   Is it from the clinical trial,  could it be thin skin finally gave in due to all the extremely high doses of prednisone he took for the rash.  He got some transfusions, bleeding seemed to stop, he's discharged.  One week later......

YESTERDAY was my parents 40th anniversary ..all my dad wanted was a special dinner.  The cake was made. .mom making stuff in the oven.   I'm at work as a nurse can't wait to get off and be with my family...and then I get the text "dad fell...he's on kitchen floor"

Once in the ER he has bowel movement that's very dark and has blood in it.  His hemoglobin around 6.  Community Hospital wants to scope him to see what's going on in abdomen.  We decide to transfer him to Penn....the hospital that did his transplant and knows him.   We will talk to everyone tomorrow l (I mean today) regarding the pros and cons of doing the scope. We will also discuss if he can continue the clinical trial or could this be the cause of the bleed. If he stops the clinical trial what can we do next. And this is where I come to the point where I wrote to the doctor an email and he basically wrote me back thst it may be time to consider hospice and palliative care. That we can discuss this in more detail once we get the scope results back. I knew this word Hospice would be coming soon but just didn't really want to hear it. I think my dad is at some peace about dying but my dad also loves life and doesn't want to die. He's so positive and has so much to live for. Two children that adore him three little grandchildren that think he is the most amazing guy in the world.

My family is tired, hurting, confused, scared...