Dear Friends, Pauline here.

If you read the previous set of comments you may have noticed the ICU lurking in there.  Shortly after Boone posted yesterday, he had a seizure.  I wasn't there, but my understanding is that it happened during the Photopheresis.  (Photopheresis is simply running any liquid through a UV light filter, just like is done in aquariums and ponds.  The UV light kills bacteria.)

Dr O in the ICU put Boone on Propofol (the Michael Jackson drug) to stop the seizure.  The hospital tried to reach me, but at that time I had plugged in the phone to charge, and gone outside so they called Boone's brother Harold.  Harold's text to call immediately sent me flying to the hospital at about 7:30 PM.  His night nurse on the BMT ward Nurse E, that he dearly loves came to the ICU to see him.  They enjoyed talking movies, and music, and books.  Boone cherished the visits from her when there was nothing going on she had to tend to.

When I arrived Harold and Randy were there.  Boone was hooked up to a ventilator; a lot more scary looking than other ventilators.  It was strapped onto his head, it kinda reminded me of the mask that Anthony Hopkins wore in Silence of the Lambs.  It held the ventilator tubes into his nose and the hydrating tubes into his mouth. It was hooked up to it's own special computer/ monitor.  Boone was very yellow and bloated.  The yellow was deeper than it has been, the bloating was about the same, he just looks very overweight around his face and neck.

The ICU doc; Dr O came around to check on him and told us that Boone had been non responsive before the Propofol.  The ventilator was there because his brain was not telling his lungs to breathe.  Then he just said all (we) could do was just pray and pray hard.  We all cried together and Harold and I spoke words that we know we are going to loose him, and they took him away for a CT scan.

Later Dr W, the Neurologist looking at the scan called to the nurses desk and they put me on the phone.  He said Boone had apparently had a baby stroke sometime in the past, and there was some clumping there and a couple of other spots, but nothing that looked terribly alarming.  He said that when a person's body is under this much stress, that the brain begins to shut down; a normal process of dying.

After that, I had to go home because of the stress, and critters, and frankly I have to sleep occasionally.  A 1 hour drive in the Roadster with the top down did me a world of good.  I needed air, lots of air, and there was plenty of it on an empty interstate in the late night hours.  I got home, took my sleepy pills and laid down on the bare mattress (Our furniture was moved today from the condo to the farm) in my clothes, with the phone in it's charger right beside me, and stared at the ceiling most of the night.

Early this morning I caught Dr. B of the Transplant Team while he was making rounds in the BMT unit.  He said they were very concerned about Boone.  The Photopheresis can cause blood clots.  He was ordering an MRI to look for a possible fungal infection in Boone's brain.  He said if there is one, that's the end.  Boone will be gone in a few days.  If it turns out that it is a reaction to the immunosuppressant,  then they could adjust the dosage to see if that might help.  Then it might be a week or so.  I asked him about the Bilirubin levels and Boone being so yellow.  My question was "so basically his liver is shot?"  he said yes.  He then said he didn't think Boone would ever leave the hospital.  He's had so many complications and bad reactions to everything they try.  This man that I previously called an Ass, hugged me and said he was very sorry.  I believe he truly is.  All the Oncologists couch everything they say to put it in the best light possible; but this was direct and to the point.

When I walked into Boone's ICU room I was taken aback by the blood coming out of his mouth and nose.  The nurse was prepared.  Before I said anything, she said it just looks bad because it"s irritating his sinuses, but it's Ok, don't worry.  

I pulled the visitor chair up to the bed and took Boone's hand.  It was very cool, his arm was cool, his head under the cap knitted for cancer patients by little old ladies, was toasty warm.  I got right up to his ear and fairly loudly said "Boone, It's me, can you hear me?"  There was the slightest of nods; yes he could.  Then I asked if he could feel me touching him.  Another tiny nod yes.  So I told him the things I needed to say and rubbed his head.  He likes a good head rubbing.  There was no other response.  I rubbed on his arms and held onto his hand; there was no squeeze back.

After his normal rounds on the BMT ward, Dr. B came up to see Boone.  He checked his feet, hands, arms, looked at the ostomy bag,  the pee bag, checked all the ports, and looked over all the tubes and bags, then went to listen to his heart.  I swear, when he went to listen to Boone's backside, Boone raised his shoulder a tiny bit.  Has it become an automatic response?  Even his breathing rate changed to the typical deep breaths.  Nurse M, from the BMT ward came up to see him.  She was clearly worried.  I can't imagine doing the job these BMT nurses do, especially since the patients are there for so long, and they meet all the family and friends, and get to know the patient's life history, then they're gone.   She was a bit stunned because he had been doing better and was trying so hard to do everything the doctors asked him to do.

Harold and Randy were both there by mid morning.  We discussed possible final arrangements.

Our friend Rosie, who used to work the Oncology ward at Vanderbilt, came by.  She went in and talked to Boone, giving him a pep talk then bless her heart, she got me out of there and to a local dive for a great fish sandwich.  (Yesterday all I had to eat was Snickers Minis.  That's my primary diet recently; I've lost about 20 pounds.)  She thinks the situation is grim.

After lunch I went back up to the ICU and sat beside Boone.  I held his hand, rubbed his arm, and had a good long cry.  It wasn't too long before the nurses and techs were making him portable to go get his MRI.

Harold and Randy were at the hospital, so I drove home to try to get some sleep.

Harold texted later that the liver and kidneys looked OK and that their sister Linda had arrived.  

So, I guess we don't really know all the facts yet, and please forgive me Harold if I twisted things, especially the sequence of events.  I just cannot think straight.  I can't complete a sentence; when talking, without forgetting the point.

It's all so very sad.  I think if anyone out there wants to speak to Boone again, they should get on it.  Maybe one of you can snap him out of this.

Im going to bed.  Hope my Sleepy Time Time pills work tonight.  I want try to catch Dr. B again for a private talk.  He is a brilliant man.  I'm sorry I called him an Ass.