Thursday Dec. 30th (Day +21)

Hanging out Christmas morning

Sophie & James cuddling - so cute!

Thank goodness things have been fairly uneventful since we've been home...we had a wonderful Christmas together as a family, very relaxing and stayed in our pj's most of the day!  It's hard to believe that so much time has already passed and it's time for me to return to work this weekend.  But I'm ready to go back, if for nothing else than to feel that our lives are starting to return to "normal".

Today at clinic we were in and out in an hour and a half, not setting any records but pretty good going!  Labs are more or less continuing to trend in the right direction.  All of Brian's blood counts (hemoglobin, platelets, and white blood cells) are slowly but surely regenerating and repopulating.  His creatinine is his biggest rival right now (and very possibly forever), as it's wavering around 3.  It went down as low as 3.05 this past Monday and was up to 3.19 again today - not huge jumps like before, but discouraging that it went up versus down.  So Brian's job right now is to drink as much as he possibly can and to work on eating more - sounds like a dream come true to me, but sadly it's a chore to him.  On a good note though, we don't have to go into clinic for another week!  And if his counts are stable next Thursday they'll decrease his visits to every two weeks - sounds good to us!

So now it's all about eating, drinking, and getting some energy back.  Just wait until a Guinness tastes good to him...it will be difficult to stop him once he starts!

Thursday Dec. 23rd (Day +14)

Went to the Clinic today, all I needed was some more IV fluids. My WBC is 5.6, platelets are 21 and creatinine is 3.19. So all in all everything is getting better each day. We now don't have to be back at the clinic until Monday which is a great 'present'.
It has been a long hard road to get here and I want to say thank you to everyone who sent messages of support and encouragement and everyone who just looked in on the blog. The prayers and positive thoughts from friends and family have been enormously appreciated and meant a lot when I was on the edge.
So thank you for helping get me through this and I hope you have a Merry Christmas!
Brian

Wednesday Dec. 22nd (Day +13)

Today has been a great day!  We started with a visit in the clinic at 7am - bright and early.  Labs continue to improve - white blood cell count is up to 3.6, hemoglobin 7.1, platelet count 12, and creatinine 3.3!!  So all in all, Brian's body is healing itself!  It will take anywhere from 3-6 months to fully recover all of the counts, but at least we're continuing to trend in the right direction.  We've been told that the creatinine would slow down in its' decent towards normal, so the small decline is neither surprising nor discouraging.  In fact, I was encouraged that it continued to decline when this was the first time in over two weeks that Brian has not been on continuous IV fluids.  Brian is still very tired and spends most of his day resting, but he is doing remarkably well walking up and down stairs, eating meals with the family, etc.  He is a real fighter and can't wait to get back on his bike!  He's already organizing getting his bike and the trainer over here to my parents' house so that he can start riding again next week!

After the clinic visit we visited our house to gather a few little things and then hung out with the kids the rest of the day at my parents house...our home for the time being.  Sophie has been great with Brian.  At first she was a little timid due to the lack of hair, but after a little while she cuddled up next to him and has hardly left his side since.  I've included a photo of them hanging out in bed watching tv - very sweet!

Tuesday Dec. 21st (Day +12)

Guess what?  We're going home!!!  Brian's recovery has been amazing over the past couple of days.  His creatinine has dropped steadily and is now 3.5 (normal is around 1, so we still have a ways to go but we're safely "out of the woods"), white blood cell count jumped from 0.7 to 1.9 today, and all other labs are holding steady.  He hasn't needed any transfusions over the past 2 days, so platelets and hemoglobin are maintaining - they still have a long time before they're normal, but at least he's not continuing to drop each day.  Electrolytes still need some tweaking, but that's not too big of a deal.  So he'll have clinic appointments tomorrow and the next day and then hopefully they'll drop down to 3 days a week - so basically we spent our busiest time in the hospital.

He officially started losing his hair two days ago and decided to shave it all off yesterday...but as of right now eyebrows, eyelashes, etc haven't started coming out.  Here are some pics!

Hair's falling out...very patchy so it's got to go!

Action shot!  We thought stripes would be a good look...!

Notice he's near the exit sign...ready to flee when they give him the "okay"

Monday Dec. 20th (Day +11)

Today has been a good day!  Counts are improving, Brian is eating a resting better, etc.  It's been busy and I'm heading home to see the kids now, so I will post more information tomorrow with some photos of the balding man!  Sorry for the short entry today...the day just kind of got away from me.

Sunday Dec. 19th (Day +10)

I think things are slowly but surely getting better each day.  As I said to a friend today, I can't completely relax and breathe a huge sigh of relief yet, but I've definitely breathed many small to medium sighes lately.  Brian is still pretty fatigued, but I think that's going to take a while to come back.  But he's generally doing better - eating and drinking more, resting better, getting up and around more, etc.  He got up and had a shower today, which really wore him out but at the same time felt really good.  Last night he sat up and watched a movie...so he's making strides!

Counts today were ok - creatinine fell to 5.17 and white blood cells came up to 0.5!!  These labs alone show that his body is making a fantastic recovery!  Platelet count was back down to 6, so he got another unit of platelets and his hemoglobin was 6.9.  Potassium level was down to 2.7 (normal is between 3.5-4.5), so he's gotten lots of IV potassium today.

I've included a small picture of his petechiae rash on his arm.  The doctor said it should all resolve in about 3 weeks or so when his platelet count is normal.  It's nothing that itches or hurts, it's basically little tiny bruises from his capillaries bursting due to his low platelet count...

Saturday Dec. 18th (Day +9)

Slightly out of focus, but mildly cheerful picture of Brian :)

I'm happy to report that today is a better day!  Although he's still very tired and worn out, Brian is finally feeling a little bit better.  He was able to sit up in a chair and eat some cornflakes for breakfast, and has sipped on a milkshake for lunch.  He even thinks a grilled cheese and french fries might sound good for dinner!  I hate to think what our grocery bill is going to be when his full-blown appetite comes back...

His counts today are better, too!  Creatinine has finally budged and is down to 5.6 - yay for his kidneys!  White blood cell count is at 0.3, hemoglobin is 7.4, platelet count is 11 - so no transfusions needed today!  All in all things are looking up.  Dr. Abhyankar (the BMT doctor on service this week) thought he might even be able to go home by Tuesday as long as his fevers subsided.  He still had a high fever this morning, but it has started to go down this afternoon - let's hope it continues to trend that way.

One of Brian's friends encouraged us to rename the blog so that it isn't so much of an "ownership" of myeloma...we'd love to hear any thoughts or suggestions you all might have.

Friday December 17th (Day +8)

Well, today has been another difficult day, but overall I still feel more positive than I did several days ago.  Brian just generally feels crappy and tired.  He's still having fevers of 102-103 degrees F.  He's now on two different IV antibiotics - cefepime and vancomycin (for all you healthcare providers out there!), Tylenol every four hours, and right now he has 3 ice packs around him (it sounds horrible to me, but he says it feels good).  His blood cultures have not grown anything and his chest x-ray was clear, so they don't actually suspect an infection at this point in time, the antibiotics are mostly prophylactic.  The doctors have said that when patients start engrafting (meaning when the bone marrow starts reproducing white blood cells) they can have high fevers and a full body rash, which he also has.  Although it's difficult to watch him go through all of this, I feel encouraged by the fact that the doctors are not too concerned about these symptoms.  And his white blood cell count went up to 0.2 today, so that's cause for celebration!  I think I'll have a glass of wine for him tonight.

"Chilling out"

As for everything else, his creatinine is still about the same.  It was 6.09 today, but other labs are trending in the right direction - BUN (another kidney-related lab value) went down quite a bit and all of his electrolytes are fine.  The renal doctor this morning said that he didn't expect his creatinine to start coming down until he no longer had fevers...we'll see.  His platelet count was very low this morning - only 5, so he got a platelet transfusion.  He hasn't had any signs of bleeding (nose bleeds, etc), so that's good.  I did notice lots of petichiae (small, little purple spots that are actually tiny hemorrhages) on his legs, so we'll be careful about those.  Hemoglobin is back at 7.0 so I'm guessing he'll have another blood transfusion tomorrow morning.

Heather starting his platelet transfusion

Half-full bag of platelets

I finally figured out how to upload a video (thanks Betsy!!), so here is Brian getting one of the four syringes of his stem cells!
Brian's Transplant video

Thursday Dec. 16th (Day +7)

Here we are again...yet another day.  First I think I should explain the way the days work - a couple of people have expressed confusion over the +6, 7, etc.  Everything revolves around transplant day, so that's considered Day 0.  Since chemo is prior to transplant it's negative days (i.e. Day -3, -2, -1) and now we're in the post-transplant days!  So the most crucial days post-tranplant are days 5-12 and we're on day 7.  Hopefully by day 12 there should be a big step forward in how Brian's feeling.  Yesterday was not a good day.  Brian started feeling pretty bad around lunchtime and just kept getting worse all day.  By 8pm he had a fever of 101.3 F, extreme nausea, and fatigue.  Due to the high fever, they did blood cultures and started him on IV antibiotics.  I didn't leave the hospital until about 9pm and when I spoke to him this morning he said he had been vomiting all night.  So needless to say, he was pretty discouraged this morning and ready to throw in the towel.  The nurse he's had yesterday and today has been wonderful and she really advocated to switch around his nausea medications, so today has been a much better day!  By 9:30am he said he actually felt human again.  He even started making a few jokes here and there, so I think he's on the mend.  He made a comment to me about how when this is all over he's going to thank me properly by taking me out for a Guinness...I'm not quite sure that's what I would want (I can't stand the stuff!), but if he can drink a Guinness I think we'll be back in business!

As far as his counts go, things are still pretty stable.  His platelet count dropped to 18 today,  so he'll likely need a platelet transfusion tomorrow morning.  They didn't budge for so long (we thought he may not even need a transfusion) and then all of a sudden they just plummeted.  Oh well.  Creatinine hasn't budged, it's still hanging out at 6.1...the good news though is that it hasn't gone up any more, so they're hoping this is the plateau and the downward slope will hopefully start soon.  Please say a little prayer that that happens.  White blood cell count is still 0.1 - we're hoping they start reproducing in the next few days.  Hemoglobin dropped a little bit to 7.2, but the drop is likely due to all the blood they had to take for blood cultures and labs (almost 100mL!).  I'm guessing he'll be in the hospital for another 5 days or so, we just want him home for Christmas.  And then we'll be back to being a clinic patient - can't believe that actually sounds easy!  Funny how perspective changes...

The kids and I are all doing fine.  My mom has been wonderful and took 2 weeks off work to help with the kids...thank goodness or I don't know what we would have done.  Sophie is very excited for Christmas, I have a feeling that this will be our first year that we'll be awakened at 5am with her excitement.  James is just cruising along without a clue that anything is wrong with Daddy.  He senses that Brian is different and doesn't have the energy that he had before, but every time they're sitting on the couch together James tries jumping all over Brian...just like he always does!  My parents are doing well, but I know my mom could use a break...so if anyone has any free time just give us a shout and we'll take you up on your offers!!

Here's a picture of Brian walking around in his new robe this morning!  He still looks pretty good (even though he hasn't shaved in a couple of days)!

I'm too sexy for my robe...!

Wednesday Dec 15th (Day +6)

First of all, sorry we didn't post yesterday...we were both just too exhausted.  Brian is increasingly more tired these days and spends most of the day in bed.  It's kind of weird because he's never been a napper, but naps are good for him and he doesn't wake up feeling worse than before (which is how he would normally feel after a nap).  Eating is his biggest hurdle right now - he still doesn't have too many mouth sores, maybe a few little spots, but the sight, smell, and texture of food is appauling to him and makes it very difficult to eat anything.  Drinking is now fine as long as the taste is ok.  Berry flavored Propel water is his drink of choice at the moment!
As far as his "stats" go, we think his creatinine has finally peaked!!!  Today was the first day that it didn't go up, it just stayed about the same...so 6.12 is the new record for him.  He was very close to having a dialysis catheter stuck in him, but hopefully we have avoided that altogether.  They'll draw another level tomorrow morning and we're hoping for a number in the 5 range.  His other counts are abnormal but expected post-chemo.  White blood cell count is 0.1 today.  They started the Neupogen shots again yesterday to start boosting the stem cells out of the bone marrow and into the blood so that they will function as baby white blood cells.  Hemoglobin went up again to 7.7, so no further transfusions needed there.  Platelet count dropped to 51 so he will soon be at risk for increased bleeding...so no shaving except with an electric razor, no flossing teeth, and other things like that.  Overall he's doing pretty good, just very tired.  Hopefully in the next 4-5 days he should start perking up a little bit more and hopefully will also start getting his appetite back.  At that point they'll let him come home - just in time for Christmas!
Thanks again for all of your prayers and support - they have helped tremendously so far!

Monday Dec. 13th (Day +4)

This is going to be a short blog entry...I'm getting ready to leave hospital to go home and see the kids and thought I should write a quick note here.  Creatinine was 5.67 this morning, still trending up.  The kidney doctors and the BMT doctors are both happy to continue watching it at the moment because Brian still isn't showing any signs of being "in trouble" from his kidney dysfunction...he's not puffy anywhere, still making lots of urine, lungs are still clear, and potassium level is normal - all good signs.  Hemoglobin was 6.3, so he got his first blood transfusion this morning.  The doctor was optimistic that it could potentially be his last transfusion as well!  Platelets continue to be ok, they're lower now at 111, but nowhere in need of transfusion.

Having his dressing changed by his nurse, Brooke

Having his first blood transfusion

All done!

This afternoon Brian seems to have turned some sort of corner and is eating and drinking a little bit easier.  He still needs very soft foods and liquid, but doesn't feel like he's going to gag or choke with every bite.  This alone has cheered him up quite a bit.  He is still longing to guzzle down an ice cold glass of water, but that will come in a few days.

Sunday Dec. 12th (Day +3)

It's Kristy writing again...Brian's been in bed most of the day.  He's feeling pretty bad and not looking foward to potentially feeling worse over the next week.  His creatinine today was 4.9 and they're going to check it again in about an hour.  No plans for dialysis yet, just monitoring things.  He's still producing a lot of urine and his electrolytes are ok.  They said at this point it's unlikely to need dialysis, but they still want to keep him because it's a fine balance between a high creatinine and a low white blood cell (WBC) count.  His WBC count today is 0.7, they expect it to drop again and hit it's low point tomorrow.  Dr. Aljitawi rounded on him again this morning and said that it may not drop all the way to zero, it may bottom out at 0.2 or 0.3...we'll see.  Then they start giving him the Neupogen shots again on Tuesday to "encourage" his stem cells to come out of the bone marrow and start fighting infections.  Hemoglobin was 6.8, so it's also dropping but no blood transfusions yet.  Platelets are 144, they haven't budged too much in the past few days, so we're good there.
Basically, we know we're entering a very hard week, but that doesn't make it any easier to cope with feeling like crap.  At least he still doesn't have any mouth sores or skin rashes, that's a plus for him!  At the moment it's still difficult to eat and drink just because of the thick coating in his mouth and throat - he feels like he's going to choke every time he tries to eat something solid.  Nausea is still slightly problematic but it's getting better.
That's about all for now, I'll write more tomorrow.

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!