Lab Visit Wednesday.

Hello, just to say my lab visit yesterday was pretty uneventful. There were a few things that could have gone better but it is just their administration that need to be a bit sharper...
Anyway counts were good Hgb 9.5, Platelets 128, Wbc 4.2. Creatinine was 1.8 and that was only because they left me on potassium supplements a little long plus a little dehydration - all sorted now.

I notice I'm getting stronger every few days which is great, I go in tomorrow for blood work just to check everything is normal again regarding the potassium. On Wedesday I also had my central line taken out so that will make showering easier!

Kristy leaves on Saturday and my sister Helen arrives as my next 'carer' tomorrow which will be fun. I'll of course miss Kristy she has been great (even in the face of a demanding husband), but I'm glad and envious she gets to cuddle the kids on Saturday!

I hope all is well with everyone! Thank you again for your support.

Sept. 24 Day +19

We are playing catch up a little bit today...the wifi connection at the Hope Lodge does not allow us onto the blog website, so we can only write updates from the public computers downstairs.  Needless to say, it takes more organization and therefore we haven't been as faithful at writing daily updates - sorry!

Here are some photos from our first outing after being discharged from the hospital - picnic in Central Park! Our friend, Alysa, came to NYC to visit for the weekend, so she's in a couple of them.

Eating lunch on a bench with Alysa

In the Great Lawn of the park, Smurf's castle behind us!

 

The next doctor's appt is on Wed and we're hoping that Brian's line is pulled that afternoon, but it will be dependent upon his labs (which they expect to be ok).  He continues to gain a little bit of strength each day and today his nausea seemed to be better.  One thing that Brian has commented on is that he can really tell a difference every few days in his energy level and strength - when he had his autologous transplant 2 years ago it seemed like progress took much longer (or so he feels), so this is very encouraging to him!  As we prepared for this transplant we just expected the absolute worst...everyone said how much more difficult an allo is vs. an auto...he is happy to report that this has not been the case thus far for him (knock on wood)!

This week seems to be getting busy, as I'm preparing to leave on Sat. morning, so I'm trying to get things in as much order as I can before leaving (which of course includes a little bit of shopping!).  We're both kind of nervous about it, but we know he'll be in good hands:)  It's a bittersweet thing...Brian will miss me and of course I'll miss him, but it will be great for me to be back with the kids at our house... and unfortunately I have that thing called work to get back to.

We now have a mailbox here but of course we left the address upstairs in our room...we'll include it on the next blog entry!

Day +16 spent in Central Park (well some of it).

I am really tired generally and I had my first visit to outpatient clinic post transplant. I would have bet my hemoglobin was low and I might even need a transfusion but it had gone from 7.7 to 8.8 and platelets had gone from 32 to 53! So no blood products needed...I'm just tired! And I guess 16 days post transplant, thats okay. After lab we went to Central Park found a tree with shade and sat and ate and chatted. Alysa a friend from KC is here for the weekend so all 3 of us got to spend over and hour sitting and enjoying the park!
This evening Kristy and Alysa are going to see a show which should be fun. I have planned a very quiet evening, today was great but I am bushed! I haven't any photos with me right now but we have some nice ones and will post them soon.
Thanks as always for the notes of encouragement.

Day +14 and I'm leaving for Hope Lodge

Hope Lodge found a room for me so I leave today! This is about a week earlier than planned so I am pretty happy. I still feel tired but that is just a combination of drugs, low hemoglobin, a hospital bed and getting up at 5.30 - if only I could jump on a bike at that time I'd be a very happy boy.
MSKCC has been great, the nurses day and night are really great and everyone else have also been great. Having said that I hope I never stay here again!
The outpatient lab will be a twice a-week trip from now, but that is fine. Staying outpatient is my plan. Today I finished opening the cards Kristy secretly organized for me. Thank you for the words or encouragement it was a fun thing to do every day.
So now the next phase begins, Hope Lodge will be my home for the next while and hopefully I get stronger and stronger there. Staying infection free is the plan and letting my body heal.

Day +12 Out for an early walk. Sept 17th.

Well I had 2 nurses come into my room this morning pretty excited about my 'number', before I could guess they said 4.8, my wbc is 4.8! So I was going to be allowed out and though I didn't have any other numbers, went rooming for the first time in 14 days. 6 quick circuits of the floor before 7.30.

Other numbers are ANC 3.5, Hgb 7.4, Plts 15 and creatinine 1.5, so no transfusions today.
I have been very tired today and napped between visits from Bob and Matt.

There is talk that I could be transferring to the Hope Lodge by the end of the week which is amazing!
As long as I keep drinking and eating and don't get an infection. No more neupogen shots so we'll see how my wbc does on it's own.

Day +11 Good pain, hurts less than bad..

Okay numbers first: Wbc 1.3, Hgb 7.2, ANC 0.8, plts 13 and creatinine 1.4.

So I had little sleep last night because of bone pain, the good pain which meant my wbc was growing and my marrow was starting to work. By tomorrow I will be able to walk the hall on my unit because my anc will be over 1.0. I've been confined to my room for 14 days! So that should be fun.

Also Dr Jakabowski predicted that I might be able to move to the Hope Lodge by Wednesday! I can't believe how quickly this seems to be going. My body still feels pretty tired but it is getting better. Hopefully I keep clear of any infections and keep eating so Midweek is at HL.

Day +10 Nothing to see here..

As the title says things are nice and boring here. I got washed Platelets yesterday and needed them again today without any drama. My wbc started the day at 0.2 (around 5am) and they checked it again at 5pm and it's 0.7, so that seems to be going well, Hgb started the day at 7.2 and for some reason this evening it is 8.2, if anyone can explain that - let me know. Platelets started out at 8, I had the transfusion and they are now 21. My creatinine went up to 1.5 this evening which concerns me but they also cut mt IV fluids earlier in the day thinking I was able to drink more than I can. So hopefully it steps back in to line by my next blood work. Sorry this is all very boring - but it is my day and I guess fussing over the little things is better to have more to worry about.

Bob came in to hangout again today, it was nice to see him and chat, I also got to Skype Kristy and the kids, Helen, Dad and Ben and Pauline and Richard. So not a bad day all in all.

Hair is all gone again. Photo: H Singh (tech)

So as long as the extra IV fluid brings my Creatinine down I'll be happy!

I met an Angel today

Patricia & Kristy outside my room.

My angel.

Today I got to meet a lady called Patricia Walka, she is an administrator here are MSKCC. Both Kristy and I had spoken to her at length on the phone. It was she who after all the appeals to insurance failed and calls to employers and anyone else we could think of failed, decided to find a way to make it happen because she knew our family needed this.  She fought on our behalf with insurance along with Kristy to get them to commit to as much as possible. But when insurance fell short, she made sure I could still have the transplant through a fund for the under insured. She made the difference, between it happening and it not. I could never thank her enough for this chance she has given me to live a long normal life. It may not happen that way - but I have a chance.

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.

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!