Saturday Dec. 11th (Day +2)

It's Kristy again writing this blog...Brian is pretty wiped out and sleeping a lot of the day.  He's still in the hospital and the BMT (Blood and Marrow Transplant) docs have already rounded on him this morning.  His creatinine went up to 4.49 but the rate at which it's increasing has slowed, so they are very encouraged by that.  They want to go ahead and keep him here until it peaks just in case he were to need emergent dialysis, then he'd already be here instead of at home.  The kidney doctor who saw him last night said she thought he'd be able to get through the weekend without dialysis and maybe even squeeze by without having any at all.  The factors that will determine if he needs dialysis are if fluid builds up in his body and therefore into his lungs causing him to having difficulty breathing, or if his electrolytes get all out of whack and his potassium gets to a dangerously high point that could cause cardiac issues.  He's still making a lot of urine and his lungs are clear, so hopefully we won't get into any distress on that end of things.  His potassium has gone up a little bit, but it's still in a range that is tolerable, so we'll wait another day and re-evaluate tomorrow.

As far as his other numbers go, his white blood cell count (infection fighting cells) has dropped to 1.7 - they expect it to be zero in another 2 days.  Kind of scary.  His hemoglobin is 7.1, so he will likely need a blood transfusion in the next 48 hours or so because they want his to stay greater than 6.5ish.  Typically they transfuse patients who are less than 7, but I talked him into tolerating a lower count as long as Brian isn't symptomatic!  He said that young, healthy males can usually tolerate hemoglobin counts of 5 but he wasn't comfortable going quite that low.  Platelet count is still holding strong at 145, so he may be able to escape without a platelet transfusion.  Dr. Aljitawi (the BMT doc who saw him this morning) said he wouldn't expect his platelet count to be dangerously low for about a week and then his counts should start recovering, so he may be one of the lucky few who don't need a platelet transfusion (they like to keep it greater than 10).

Walking the halls of the BMT unit, sporting his Guinness PJ's...longing for the days he'll be able to drink it again!

His spirits are still pretty good.  Yesterday we were both pretty discouraged about landing in the hospital, but we're fine with it now.  He still doesn't have any mouth sores, just a horrible sticky coating that makes everything taste awful.  I have managed to make him some blueberry shakes, which he's liked a lot so I'll keep those coming!  I posted some pics a couple of days ago, but we hadn't done any in a while, so I will post a few from the past week or so below and I will attempt once again to post the video of him getting one of the syringes of stem cells!  Ok, so no luck with the video...if anyone has uploaded a video onto a blog before, I would love some helpful hints/advice!

His bag of chemo...comes with lots of warnings

Getting his first dose of melphalan...and hopefully kicking him into long-term remission

Sporting his BA (Benadryl/Ativan) pump - we like referring to him as Diego with the backpack!!

His nurse, Celeste, gave him his first ever and hopefully his last ever chemo

Eating ice chips during melphalan infusion to "cryogenically" freeze the lining of his mouth

Sophie cuddling up to Daddy while he's resting in bed

Friday 10th Dec (Day +1)

First thing this morning sitting in reception Beth Harvey (my transplant coordinator) walked in and said she knew I was there...the smell of your body is quite pungent and smells like tomato soup or creamed corn after a stem cell transplant....it will last about 48 hours.
Slept better last night which was due to using the B/A (benadryl/Ativan)  pump on a more liberal basis.
Eating and drinking is not attractive at the moment so must keep plugging away.
Lungs, blood pressure are both fine, just waiting for my kidney results.
Okay so my kidneys are taking a bit of a beating, 4.18 a new record for me. They have hooked me up to more fluids and will be discussing what to do with me next. I guess the battle really starts now and for the next 2 weeks, lets hope I come out reasonably intact.
They decided to admit me in to hospital as they want to push IV fluids to help my kidneys but need to monitor me closely. So here I am and nothing has really happened. More news later

Thursday Dec 9th Transplant Day

So Kristy is writing today's entry because Brian is sleeping away right now.  The first thing we wanted to say is THANK YOU - everyone has been so supportive during these past few months, we definitely wouldn't have made it through so easily without you all behind us.  It's been amazing to see how many people around the world are thinking of us and praying for us every day...  Just in case you're interested, here is a list of all of the countries that have people who are following our blog: Ireland, England, Scotland, Wales, Germany, France, Netherlands, Canada, Australia, Cyprus, Lithuania (not sure who is there!).  We are so lucky to have so many friends and family all over.

The first thing Brian noticed this morning was that his face was a little puffy.  He's had IV fluid running for 48 hours and it's starting to take it's toll, but Dr. McGuirk said he'd rather have him on the puffy side than run the risk of dehydration.  His kidneys are still very touchy - creatinine went up to 3.44 today, even after all of that IV fluid.  It's a bit of a bummer, but we expected it and we'll continue to be positive.  So after having labs drawn and seeing the doctor at clinic we headed over to the hospital for Brian's transplant.  It's all very surreal...I can't really explain how it feels to be driving to the hospital knowing what is coming, but we were both pretty nervous and Brian said he was a little apprehensive.  We arrived on the unit and they had his room waiting for us - nice and clean and with a great view!  He was pre-medicated with some Benadryl and Tylenol to prevent any reaction that might occur - many people react to the preservative that the stem cells are kept in.  And then they started!  They are very protective of people's stem cells (as they should be), they're hand carried everywhere and aren't allowed to leave the sight of the person thawing/infusing them.  The cells were thawed and had to be infused at just the right temperature, so there was a window of about 10 minutes once they were thawed until they had to be infused, otherwise some of the cells could die.  The cells were divided into 4 syringes containing 50mL each of cells.  So one by one the syringes were pushed into Brian's central line, each one pushed over 2 minutes.  In between syringes he would get a little IV fluid and vital signs taken.  All in all, the whole process took about 45 minutes to an hour.  Then they monitored him for about 2 hours and we went home.

A "good looking" syringe full of stem cells!

Getting his transplant - looks like pureed watermelon, smells like creamed corn

Benadryl doing a good job and helping him get some rest

So now we're at home and Brian is resting comfortably.  He's very fatigued and has some intermittent nausea, but overall feels ok.  Next week is when we expect the difficult side effects from chemo to take their toll on him.  So for now I'll push him to eat and drink and make him lots of milkshakes...doesn't sound too bad!

Wednesday Dec 8th (Day -1)

Well, I needed anti nausea meds last night and through the night. Pretty tired this morning. Went into clinic just for labs, this is my 'day off' but we still had to be at the clinic by 7am.
Lab results are all fine except creatinine which went up to 2.51. Home by 10am with another backpack full of saline and anti nausea meds. Tomorrow is the big day...should be fun!

Tuesday Dec 7th (Day -2)

Well my 2nd and final bag of Melphalan has just finished so that's the end of chemo for a while...maybe a long while, we'll see. Next comes the side effects I guess. I was told just this morning that they will peak after transplant so maybe Friday and next week.
My old enemy 'fatigue' is returning, I woke this morning less chipper and starting to feel that low key tiredness creeping in. The window of feeling almost 100% has been short but great, even though I knew it would be taken away. I had been so tired for so long that just to have that 'carrot' of feeling great for a while makes me look forward all the more to getting there again. Creatinine came down again to 2.28.

Monday Dec 6th (Day -3) Chemo day

Got to lab at 7am, nice and early. I had a bit of a false start this morning as I was congested with a bit of a headache. Not good on first day of transplant, or as they refer to it at the clinic 'day -3'. My labs came back fine, creatinine is now 2.42 which is still going down.
So back to my congestion/cold/sinus issue, they irrigated my nose and collected what they found in a pot (never did that before..). Then I had a CT scan of my face. Back in clinic the docs had a chat and decided to go ahead.
After the premeds and 15 minutes of Melphalan we came home. A 6 hrs day, not too bad I guess.
So I'm sitting here writing this with my new backpack which contains 2 liters of saline fluid which will run over 20hrs and my anti nausea pump should I need it.
I got lots of new drugs to take and a mouthwash to use. It's called magic mouthwash and protects your mouth from sores by some degree, so far all that has happened is my tongue is numb!
I can see myself getting tangled in my tubes in bed tonight. Oh well.

Wednesday December 1st - Day 1 of Stem Cell collection

Okay so I'm hooked up to the machine as I write. The 6 out of 10 I scored yesterday has been followed up by a great number 59! So I was aiming for more than 10 and I get 59....always the late bloomer..

As my bag of stem cell filled hour after hour and as the nurses were checking me they always made a comment of what a good looking bag it was. When Dr Ganguly saw the bag he said he thought we might finish the collection in one day.. So after 5 hours on the dot I was done. They took a small amount of cells for testing which takes about 1.5 hrs and Kim (one of my nurses) said she'd call to tell me the score and whether I would need to come back for more collection.

3.20pm Kim called with great news, they had collected enough! In fact they had collected an amazing amount. They needed to get 2.5 million cells per kg (of my weight) per transplant, so the number they/I was looking for was 5 million cells per kg because they always try to capture for 2 transplants. What they actually collected was 12 million cells per kg. That's 960,000,000 stem cells in one day! I don't really know how that helps me, but I guess if I can over achieve in the coming weeks and months to the same tune I can say I would be pretty happy, we'll see.

cleaning up the connection on my central line.

making sure my stem cells are the right color.

all hooked up and relaxing, letting the machines do their work.

Getting hooked up.

The beginning of a 'good looking' bag of stem cells!