chemo starting today

I will do a more complete update later but here is the bones of what is going to happen.

Dr. Verstovsek told us he will be starting an augmented version of the chemo he has already had hyper-cvad.  Augmented meaning that he will have even higher doses of the chemo.  Regular  hyper-cvad is already a high dose chemotherapy regimen.  

He will be getting it at the hospital over the next 5 days as well as the lumbar punctures with chemo today and Thursday.  They are giving me copies of the consent form that have the exact doses of the drugs and when he will be given them.  I plan on posting these later when I write a more complete update.  

He will be tested 21 days from now to see if the cancer has responded to treatment.  If it does not there are other things that can be tried; possibly bone marrow transplant and different chemo.  However the chances of the cancer responding to treatment goes down with each type of treatment that does not work.

He is confused and disoriented not because of his medication but more than likely because the cancer is in his brain.  Like I said before the test of his spinal fluid came back suspicious which they are treating as the cancer being in his brain and spine.  

Soon he is getting another lumbar puncture to get chemo and get fluid to test.  This will be repeated on Thursday.  

They are going to get a sitter to come stay with him when I or someone else can't be here since he can't be left alone.  With it spreading to his brain he sometimes doesn't know where he is and doesn't remember that he is connected to an IV pole 24/7.  

He could possibly be discharged Saturday but will need out-patient procedures done next week and the following week and then the week after that they will test him to see if it has responded.  A social worker and another hospital staff person are going to talk to me today about finding us a place to stay here and also making sure that he will be able to come back for treatment without us having to pay 20% of the bill from him being here now.  

Where we stay will have to be a place without other people since we have to do the best we can to not expose him to germs.  He will end up back in the hospital about 10 days from now for neutropenia because of the high doses of his chemo.  He can't be around children, including our son.  He can't be around anyone that may be sick or exposed to a virus of any kind.  He will need to have help from someone besides me wherever we end up being able to stay, because I can't take care of him 24/7.

I'm very overwhelmed and anxious.  I'm glad a sitter can come stay with him while he's here in the hospital.  I'm hopeful that the social worker can find us a place to stay and help figure out who can come watch him with me.  How much all this will cost and do we have the money for it I don't know.  

I have so many worries and questions right now.  I just have to stay here with him for now and wait for people to come talk to me.  

He slept better last night and has slept more this morning, more than he has in the last 5 days.  Not being able to understand what he wants and him not being able to explain what he was most of the time is really really hard.  

He forgets what is going on moment to moment and sometimes does not remember what has happened previous days.  I explain to him frequently where he is, why he is here, and why we have to stay here.