Day +1...and so the journey begins

Brian had another good day today!  He woke up this morning, took a shower first thing, put on his 'runners', as he calls them (AKA 'running shoes'!), and had a nice cycle on his peddler.  The swelling in his hands and feet has gone down and the rash is gone.  The painful neuropathy is still there, but the doctor hopes it's just temporary since he never had painful neuropathy before.  He's experiencing more heartburn due to the mucositis in his esophagus, but so far no mouth sores.  Counts today were: WBC 0.1, hemoglobin 9.1, platelets 16, and creatinine 1.4.  I would almost put money on him needing a platelet transfusion tomorrow morning...but that's fine and it's all expected.  I'm surprised that his hemoglobin is hanging in there - I'm wondering when it's going to take a downturn.  I guess only time will tell.  We are both still so thankful that his kidneys have decided to behave - he doesn't even have a renal consult!

So what is the next step, you might be asking?  First we wait for the new stem cells to start growing in his bone marrow and start producing new blood cells - white blood cells, red blood cells, platelets, and plasma.  This is called the Recovery Phase.  After that, he just has to maintain, which means frequent blood draws to make sure his blood counts are staying at an ok level and also means staying clear from infection.  They say that his immune system will be like that of a premature infant.  He will be at a high risk for infection for the first 6 months to a year, so our goal will be to keep him as healthy as we possibly can.  This means not going out in crowds, staying away from people who are sick, not eating out, etc.  It will be interesting to see how things go with both kids in school...

Many of you have asked us how the kids are doing - I am happy to report that they are doing just fine.  My parents are keeping them very busy...I'm just hoping that it's not too exhausting for them.  There have been lots of family events over the past two weekends due to birthdays (my grandma turned 90 this past Sunday!), so they've really been too busy to miss us much.  We try to Skype when we can, but it's like pulling teeth to get to talk for more than a couple of minutes - they're much more interested in looking at themselves on the computer screen than in what we have to say.  Oh well, it's hard for us but at least they're happy!

Transplant Day

We're finally here!  It seems as if this day has been looming over our heads for so long and now it is finally here.  Today started off pretty slow (must be the dreary, rainy day...) - doctors didn't round until about 11am and it seemed as if all of the staff were sort of in slow motion all morning.  Brian is starting to feel the cumulative effects of all of the chemo, therefore he's not feeling 100%...so his patience with the nurses (and me) was a little short at times.  He woke up with some swelling, new nerve pain, and a slight rash on his feet so he didn't really feel up to being out of bed much today.  They think it's from the thymo/ATG he received, so they said they aren't worried about it, they'll just be watching it.  The thymo is given with a whole bunch of steroids, so they think it's flared up now because he hasn't received any steroids in a little over 24 hours.

His counts dropped again as expected today: WBC 0.1, hemoglobin 8.9, platelets 27, creatinine 1.4.  Once again he was ecstatic that his creatinine dropped!

Dr. Sauter holding the "liquid gold"

He received his stem cell transplant at 5:48pm tonight.  It was all very anticlimactic (as we expected) and only took 2 minutes to infuse.  Because it was T-cell depleted it was a very small volume, only about 20 ml in all...crazy.  The nurse practitioner told us that the stem cells should circulate in his blood for about an hour, and then should be in his marrow.  I'm just amazed at how this all works...one of medicine's modern miracles I suppose.  Here are a variety of photos of the stem cell transplant/infusion (sorry for the messiness of the layout - I can't get the photos to do what I want!):

Dr. Sauter and the Nurse Practitioner double checking the cells

 

 

The Nurse Practitioner giving him the actual transplant

Brian took video footage of the whole thing!

Close up view of the cells

He had an audience - Dr. Sauter, the NP, 2 residents, his RN, and me.

Rest Day

Looking great and flashing his charming smile!

Today was Brian's "rest day" which means he did not get any chemo nor did he have his transplant.  It is a day for the chemo to get out of his body so that he is ready for the stem cells tomorrow.  For the most part, he had a good day.  This morning he started his day with some push ups and squats!  The doctor and nurse practitioner were pretty surprised by this...it's always good to keep them on their toes!

His counts dropped quite a bit today, which was expected due to the ATG he received yesterday.  Here are his "stats" for today: WBC 0.1, ANC undetectable, HGB 9.7, platelets 39, and...drum roll please...creatinine 1.5!!  I have not seen him smile quite so big as when they told him his creatinine - what a relief that his kidneys are "playing ball".

As far as the events for today go, there were only 2 unusual things that happened.  First of all, he had a breathing treatment called Pentamidine (see the photos of him in the plastic tent), which is an inhaled antibiotic to protect him against PCP pneumonia.  Here at Sloan Kettering they do Pentamidine for everyone during this phase of transplant because the 2 other main medications for PCP pneumonia have the potential to suppress your bone marrow, so they take every precaution to avoid suppressing the marrow for longer than necessary.  He did these breathing treatments in Kansas after he lost his graft and had to be re-transplanted back in April of 2011, so these photos might look vaguely familiar to many of you.  The other thing that happened is his primary physician here, Dr. Koehne, came by to check on him and see him.  We haven't seen him since his last doctor's visit, so it was nice to see him again and chat for a little while.  We made sure he saw all of the pictures of our kids up in his room so he knows how important it is for Brian to make a full recovery and get back home to those darling kids of ours!

Getting his Pentamidine behind a plastic tent

This evening he has started feeling the effects of the chemo...he has a slight sore throat, is pretty tired, and has a little headache.  I'm guessing tomorrow he will not be quite as spry and will likely not be doing push ups or squats.  But all in all things are going well and we feel extremely fortunate that he's been feeling so well the past few days.  Yesterday the nurse practitioner told us that most people have already stopped eating and drinking by this stage, so I think Brian is doing remarkably well considering all that he has been through.

Still feeling okay, but not for long I'm told...

Walking Sept 2.

Brian here, I had a couple of rough days where I was pretty out of it. 10 rounds of Busulfan,  4 days of Fludarabine the 2 days of Melphalan and now I've got through the first of 2 days of Rabbit ATG - this brings down what is left of my immune system and destroys my own T-cells. I spiked a fever of 102ish yesterday and am continuing on antibiotics. I slept most of the afternoon, but  felt better in the evening. So just one more day of Fludarabine and Rabbit ATG before the transplant. I ate the bacon out of a sandwich and some other less interesting food for dinner. We walked the halls again thinking it may be my last time my ANC would allow (when it goes below 1 I have to stay in my room). So here's a picture of the very walk. I get ATG again today it normally goes in without a fight the 2nd time so it should be a quiet day. I did notice my resting heartrate sitting here in bed is 120, so that's a little high and maybe a reason I haven't been sleeping. Everything else
on target I think. Got my counts while out in the halls this morning and they show thst this is my last steps out here for a while.
WBC 0.5
ANC 0.5
Hgb 10
Platlets 65
Creatinine 1.6 - very pleased about this number at the moment!

Almost there

Sorry for the delay in posts...I ended up getting really exhausted and going to my aunt and uncle's house in New Jersey for a good night's sleep last night.  11 hours of sleep (with no mask or gloves) later I feel much better!

Today Brian has started his final drug called Rabbit Anti-Thymocyte Globulin, Thymo in short.  Yes, it's from a rabbit's blood and it is made of antibodies that function as an immunosuppressant to suppress his T-cells so that they don't attack the new stem cells.  This drug has to be infused over 12 hours both today and tomorrow because of the side effects that it can cause - mainly fever, chills, and rigors (shaking).  So far Brian has tolerated it well.  They have been able to titrate him up to the maximum dose and he hasn't had any side effects yet, except just in the past 20 minutes or so he's started to feel cold.  This means that he will likely get a fever and have rigors soon, but we'll see...

As far as his counts go,  things started to drop today.  For those of you who are interested in his "numbers", here they are: WBC 1.6 (down from 2.6 yesterday), ANC 1.4 (down from 2.5), Hemoglobin 10.1, platelets 95, creatinine 1.6.  We're so happy that so far his creatinine is holding stable!  Thank you for all of your prayers and good thoughts over this!

The past two days have been fairly uneventful thankfully.  Brian has actually felt a little bit better, so has been able to walk around and eat a little bit.  It was a good time for me to get away and take a little break.  The biggest thing that happened is that we changed rooms yesterday so now we have a room with a view.  It's cloudy and overcast today, so I will post a picture once we can get a nice, sunny one!

Quick update

I wanted to post a very quick update (I'll update more later) that Brian developed a fever last night and had to have blood cultures, a urine culture, and a chest x-ray done.  He still has a slight fever this morning, so he's on 2 IV antibiotics (Vancomycin and Zosyn) along with his antiviral and antifungal medications.  Pretty soon he's going to be bionic!  He's still very tired but seems to feel a little bit better than he did yesterday.  The doctor came in and said that the chemo he's on right now (Fludarabine) is very well tolerated and so he might even regain his appetite for a few days before everything starts to hit rock bottom...we'll see.  Last night was a very rough night, they were either in here checking his temp and other vitals or his IV pump kept beeping all night.  I don't think either of us got more than 1-2 solid hours of sleep.  Brian's sleeping again right now and I'm going to try to go back to sleep, so if you try to call us and we don't answer, that's why.  Brian is really not up for phone calls these days, so if you send him messages via email I can read them to him.  Thanks to everyone for all of your support!

Halfway point...of chemo!

We're halfway done with chemo!! Today he got his 2nd, and last, dose of Melphalan and he also got his first of five doses (one per day) of Fludarabine...so 2 down, 2 to go. Counts are still fine, actually went up today which is kind of weird, but we'll take it. And creatinine is stable at 1.6 for now.

Today started off rough - the first thing he did when he woke up was vomit...no fun. But after that they've been pretty aggressively managing his nausea, so he's actually been sleeping most of the day. I'm confident that he will NOT remember these next few days due to the antinausea medication (Ativan) causing him to sleep and also having that lovely amnesic affect. I, on the other hand, will remember it all. I've often said that they should also seriously consider medicating the caregivers:)

What's missing from this picture?  His IV pole!!  He was free
and then tuckered out after his shower.

Not much really happened today.  The most exciting thing was that they changed all of his IV tubings, so he got to shower without the IV pole. This only happens every 4 days, so he took a nice, long shower and enjoyed it.  Also, we ordered some photos to hang up on his walls and they arrived today, so I got to decorate:)  Tonight my brother, Zach, is coming into town and we're going to have dinner together to celebrate my birthday (which is tomorrow). I'm really excited to see him and to have a little fresh air along with a nice glass of wine!

And a decorated cabinet, too.

Our decorated bulletin board