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