Day +4

Today was another fairly uneventful day.  Matt Long came by to hang out with Brian for a little bit(thanks Matt!) while I was being treated to a NY Jets game by my friend Kara!  Right now it's late and I'm pretty tired, so I'm going to keep this short...

His counts today were: WBC 0.1, hemoglobin 9.2, platelets 5, and creatinine 1.4.  Needless to say, he got another platelet transfusion and all went well.  Not quite sure when hemoglobin will start dropping, but we're not really gamblers so we're just taking it one day at a time and thankful for each day that he doesn't need a transfusion.

Today was also James's 4th birthday!  We were very sad to not be with our son on his birthday, but we got to sing to him via Skype and that put a smile on his face!  If I had a glass of wine right now, I would be raising it to having many more birthday celebrations together as a family - that's the whole point of this transplant...to continue being a family for many, many years.  So although missing one birthday was difficult, in the big scheme of things it's worth it if it enables us to have many more than we otherwise would have.  (I hope I'm making sense at this late hour!)

Day +3

Today Brian and I reflected over how differently this transplant is going thus far compared to his last one...it's amazing because according to all of the textbooks and what the doctors have said, an allogeneic transplant (donor cells from another person - the type of transplant he just got) is a much rougher transplant to get through than an autologous transplant (your own cells - the type he got 1.5 years ago).  Well for Brian, this has not been the case at all...he had so many complications with his autologous transplant from the very beginning that really seemed to set him back, and so far his allogeneic transplant has been completely straightforward and he is surpassing everything the doctors hoped for in regards to eating, drinking, exercising, etc.  It is so refreshing for both of us - obviously for Brian this has been so much better than he expected, especially in terms of how he feels physically.  But for me it's also been such a relief and so much less stressful to not have to have the threat of dialysis thrown at us every day.  We know the next 6 months to a year are crucial in terms of not getting infections, etc., but so far he's just coasting right along and we're hoping that this is a great start to a fresh beginning!

Today Brian started to feel a little bit more fatigued than he has the past few days, so I'm guessing his hemoglobin will start dropping soon.  He did not need another platelet transfusion, but just barely - his platelet count was only 11.  He'll definitely need another one tomorrow, but that's ok he handled the first one just fine.  The last several times he received platelets in the spring of 2011 he had reactions to them - hives and chest tightness - so now he gets premedicated with Benadryl, Tylenol, and steroids.  Yesterday went just fine, so let's hope that whatever he needs in the next couple weeks continues to go just as well!  His counts today were: WBC 0.1, hemoglobin 9.1, platelets 11, and creatinine 1.4.  Although he didn't get a platelet transfusion today, I've included photos of his transfusion from yesterday...I having a "girls night out" with a couple of girls, so I didn't get to do the blog.

"The goods"

Relaxing in bed while getting tanked up on platelets:)

Day 2 and all is well.

Well an uneventful day, which is nice. A nice if not huge thing for me was that I went from 2 to one IV pump. I'd just never had to have 2 pumps in the past.
I am eating enough that the TPN consult (IV feeding) people said they don't need to see me unless things change.
My platelets were down to 6 today so I got a transfusion as expected, with plenty of pre-meds so all went well.
Blood is fine and creatinine is still 1.4. I hope it stays there now, I can't see any reason why it would go crazy. My experience with this transplant has been so different so far (don't worry I'm touching wood), it is a nice change for sure.
Nothing else to say, I am a little tired this evening, so for now I bid you adieu.

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!