the day is almost here

When Andy is admitted to Brigham and Women's Hospital in Boston, MA.  Six more days.  Not too long ago it was months away.  How quickly time can pass.  Just over a week ago we were in Boston over at Dana Farber. Andy and I met with his oncologist, Dr. Antin, to go over the consent forms.  We also met with a social worker and the RN coordinator.  The social worker, a woman named Tami, told us all about support that is available and that we'll have a free parking pass as well as $250 in gas cards which will help with the cost of travel immensely.  The RN coordinator is Toni and she gave us a calendar of events that'll happen once Andy is admitted to the hospital, which I'll get to shortly.  In between all that, Andy had to go to the lab for blood and urine tests..21 vials of blood!!  He also had to go for a TB test, chest xray, lung function test and an echocardiogram.  That was an all day event for us..from 7:15 to 3:30 ish.  We didn't know we had to go into the hospital for two of those and that was interesting.  We got lost trying to find our way to the radiology..or the one we needed to get to and to top that off, the fire alarms went off and some folks were leaving the building while others weren't..very strange and confusing.  Finally this kind nurse brought us where we needed to go.  The hospital and Dana Farber are actually connected to each other by a tunnel of sorts...they call it the tunnel of hope and someone painted a mural of all these birds..very nice. :)  It was a long day for both of us.  For the girls and Ben too, since they had to fend for themselves for the day.  Thankfully, they managed not to burn down the house or kill each other. ;-)
Now, for the timeline of Andy's hospital stay.  Because he has low platelet counts, he's going to start his first day there getting a platelet transfusion.  Right after that he'll be having surgery to insert two separate venous catheters into his chest; each catheter will have two leads.  One will be for his chemo meds, one for pain meds, one for fluids/other meds and the last one for nutrition should he be unable to eat.  After his surgery, which he'll be getting general anesthesia for, he'll be in recovery and once he's awake/alert, they'll bring him up to his transplant room.  I imagine he'll be getting visits from doctors/nurses/specialists and maybe even a nutritionist and social worker.  Not sure if that'll happen that first day or not.  The very next day, Thursday, July 7th, he'll receive his first dosages of chemo...he'll get that on Thurs, Fri, Sat and Sunday.  He'll start getting an imunosurppresive(sp?) to help his body from rejecting the new stem cells...bringing his counts down real low and finally to zero.  He'll hang out for a couple of days and then get his stem cell infusion on July 14th...the stem cells are being flown in from Europe.  So, they'll be frozen.  There's a product that they use to help the stem cells from getting damaged during the freezing..I forget what it's called but apparently it can cause an odor to exude from Andy as it works it's way out of his body..they claim it smells kinda garlicky and I think he might have a bad taste in his mouth.  He'll need to be watched real carefully during this time of his transplant b/c it can cause real low blood pressure among other things.  Once that's done, he'll be given a drug that is supposed to suppress the possibility of GVHD(graft versus host disease).  It's actually a drug that is in clinical trials right now; Andy agreed to take part in it.  GVHD can cause all sorts of problems from skin rashes to intestinal as well as other organ damage and it can happen at any time in the one year from transplant.  Andy will also, mostly because of the chemo, be losing his body hair, his taste buds will be off and his mouth may be real sore (hence the inability to eat) as well as the nausea, vomiting, headaches, fevers and diarrhea.  They'll be encouraging him to get out of bed and walk around and sit in his rooms chair so that he doesn't get too weak.  They'll do their best to keep any pain at a minimum so that he can eat and move around.  I believe that about a week/two weeks after he's received the transplant the stem cells should be starting to engraft to his bone marrow and making healthy blood cells and those blood cell counts should be going from zero to as well as they are now; maybe even better.  If all goes well, he'll be out of the hospital and home by the end of the first week of August.  There are lots and lots of potential side effects that can get serious real quick that might extend his stay in the hospital, but a positive frame of mind is what I/we have to have to help Andy to move forward minute by minute to day by day and eventually month by month.  He'll be getting uber amounts of antibiotics as well as blood transfusions during the times when his counts are bottomed out.  Once they start coming up again, the transfusions will stop and the antibiotics will be tapered off.
Once Andy is home, he'll be able to walk around the house, be in the car and even outside, without a mask and gloves.  That's when we'll have to be very careful in regards to hygiene and house cleanliness.  Any visitors will have to be in excellent health as well as anyone they've been around.  People don't think about it, but if you've been around someone who's been sick, could be you'd caught whatever they had but aren't showing symptoms yet but you could potentially be very contagious yourself and not even know it yet.  God willing we'll get through the fall/winter and coming spring without any major setbacks..that being said..we can certainly expect them or at the very least not be surprised by them.  Right now, I just have to get through these next few weeks for Andy and pray that no one here gets sick or I get sick.  My plan is to see him every day for those first weeks and then maybe the last week or two taper it to every other day or so.  I already have two days in July where I won't see him that day b/c of household chores and appointments.  He'll probably be sick of me by then anyway ;-)..so a day off here or there will probably be needed...lol
My mother has been visiting her sister in North Carolina this whole month of June, coming home on the day he gets admitted to the hospital.  She'll be here to help Jenny and Lauren out, looking after the boy and the house and hopefully everything will run smoothly and without too much drama.  Andy's mother, Anne, is coming to stay on the 13th till the 1st of August, going home on the 2nd I think.  I'm still unclear if my mother is going to see her other sister, in Florida.  I guess I'll find out when she gets home.  Between all of them, I shouldn't have to worry about the home front too much.
One note; our landlord came by this past Friday to have us sign an addendum to our current lease which will allow us to rent this house until March 31st 2012 and then we'll have a month to month lease after that..having to give 60 days notice of moving or if they need to move back.  Before he came over we decided to wash the rugs ourselves so we bought a new steam carpet cleaner.  I did it myself..cleaning the rugs in the dining and living rooms which saw most of the traffic from the front door not to mention Ben, dog, cat and other messes that ended up staining the rugs.  Somehow I must have really stirred up all the germs and what not in those rugs.  I'm the only one who had a seriously clogged/runny nose...it was like I came down with a bad cold.  When we were at Dana Farber I started having a runny nose and then my right ear got all clogged up.  The next morning and the one following that I had a sore throat, swollen glands and headache along with the nose issues.  But, no one else came down with this 'cold' so we figure it had to do with all the nasty dirt and stuff that was picked up by the carpet cleaner that only I was exposed to..I had to empty the waste water container and I was the one with my face over the machine while it cleaned..so, I guess...there you go. :-)
Now, with sleep..not getting much over night.  I can't shut my mind off.  I lay there for hours sometimes.  Sometimes I'll fall asleep and others I give up and come down here.  Tonight was no exception.  I took two of my anxiety pills not too long ago in the hopes it'll make me sleepy enough to sleep..maybe mellow enough to shut up this mind of mine to get to sleep.  I do feel sleepy now..tired enough to go to bed.  So, I'm going to wrap this up.  Once Andy is admitted, I'll try to keep a daily blog of events and how Andy is doing.  There may be nights where I just don't want to or have the time to.  But, I'll do my best...so, night all..or good morning..depending on where you are and what time it is. :) lol