Day +8 and all is well...Platelets are a little iffy though.

Top of the morning to you! Feeling great again today, actually thinking of making a run for it and find the path by the water Kristy has been running on.  That is my dream at the moment. All going well I should be allowed to walk around the 25 bed unit in a few days. I started neupogen shots yesterday, I thing they are to remind my WBC count to start up again so maybe in a few days I'll see a count other than < 0.1.

I got Platelets yesterday and I always seem to have issues with them after a few transfusions. So in case of any problems they pre-med me with 25mg Benadryl, 50mg Hydrocortisone, 20mg Pepcid and 650mg of Tylenol.  Well yesterday I had a reaction starting with my eyes - they started to get scratchy so I checked in the mirror to see if my eyelashes were falling out and getting stuck in my eyes. Well one look told me I was reacting to the platelets. My eyes were red, swollen and watering and wanting to close. I mentioned it to Pam my nurse and she had an NP look at me. By this time my hands were itchy and I had a rash and some hives. So next time they are going to 'wash' the platelets before I get them, they say it cuts down on plasma and other 'stuff'. It's all beyond what I understand so I'll trust that their 'cleaner' does a good job!

My hair has started falling out so I shaved it all off...not really a good look but it will have to do for now.

Thank you Patrick and Katie for the t-shirts!

Day +6

Well, it's been a couple of days since the last blog post and thankfully there's not much to report.  Brian ended up needing another platelet transfusion yesterday for a platelet count of 9, but didn't need any transfusions today.  Today his counts were: WBC 0.1, hemoglobin 8.5, platelets 19, and creatinine 1.3!  His hair started falling out yesterday, so we shaved it off today - hopefully we'll post some photos tomorrow.

He's still getting anti-nausea medication around the clock, and typically it allows him to eat pretty well after taking it so that's good.  Tonight he still felt too nauseated to eat, but thankfully that's the exception for him and not the norm.  Tomorrow they start him on Neupogen injections, which will help his white blood cell count to increase and therefore protect him against infections.  This is the beginning to having his counts recover and be stable so that he can be discharged from the hospital - very exciting!

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.