KEITH'S JOURNEY TO MOSCOW TO RID HIMSELF OF MS
Hematopoietic Stem Cell Transplantation for MS
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DAY +9: ENGRAFTMENT

4/10/2013

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Finally...the day we have been waiting for!!!  Engraftment!  So what happened overnight to make us think that something may be a bit different?  Let's take a look at todays blood values comparted to yesterday's.

TODAY'S BLOOD VALUES                   YESTERDAY'S BLOOD VALUES
HEMOGLOBIN 106                                HEMOGLOBIN 106
LEUKOCYTES  6.04                                  LEUKOCYTES  1.24
PLATELETS    127                                    PLATELETS  64

So yes, officially those little stem cells are back in my marrow, doing their thing in full effect to reboot my immune system from scratch!  Of course my first question to Dr Julia was when do my isolation parameters begin to loosen?  At first, she thought I may be alright to wander the halls tonight on the iso ward (with mask, etc), but after conferring with Dr. Fedorenko (who is away in Estonia presenting papers this weekend), he suggested not to loosen restrictions and to stay in complete isolation for another 24 hours.  I believe the rationale for it was due to the sudden jump in the leukocyte numbers, which may predispose the individual to certain viral infections.  I'll confirm that rationale upon that upon his return, however in the mean time, I'm just as happy to spend another day in here in safety, letting my body do whatever it needs to do!
Great news from Moscow...this is what we're he
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Day +8:  up, up but not quite there yet...

3/10/2013

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Blood values came in elevated again today.   Much more recovery with the leukocytes, but the neutrophils are still quite low.  Not engrafted yet.  Dr. F. strongly expects tomorrow, which means I may be able to break open these isolation doors for the first time in over a week.  Facial hair started slowly coming out today...guess that'll save the shaving thing for a bit. 

Today's Blood Values:  (I'll put yesterday's in parenthesis for comparison)
Hemoglobin: 106 (108)
Leukocytes: 1.24 (0.22)
Platelets:  64 (47)

Great improvements overnight.  I suspect that all systems are now revving up, as this is likely the most fatigued day I have had since in isolation.  Perhaps a combination of being in this box, coupled by the fact that my bone marrow is rebooting my immune system.  All I can honestly say is that I am ready to get moving!!!
With everything being considered, a crummy feeling day like today is a short term price to pay for something that relatively speaking has run very smoothly from the get go.  If anyone has some energy left in their tanks, send it to Moscow...we're running a bit low:)
Love from Suite 328!

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Day +7:  *slowly* beginning to rise

2/10/2013

7 Comments

 
Another beautiful day here in Moscow.  Well....at least it is not raining....but there is some sun.
Blood results have started to show what we expected at this point in time.  After being down next to 0 for the past three days, I am starting to experience some minor, although significant changes in my blood levels.  This is as expected, as full engraftment still will not occur for another 2-3 days.  That being said, we are starting to migrate up, even if only a bit at a time!  Once the engraftment happens, there is usually quite an upward spike in all blood component values.

Todays' Blood Values:
Hemoglobin:  108
Leukocytes:  0.22 (Neutophils are still way down at 0.1)
Platelets:  47

Comparatively to where they were yesterday, yes they are up, but just enough to say we are getting the rebooting process started!
All is great over here.  The days have been surprisingly productive and isolation will soon begin to loosen once the engraftment process truly happens.  Let's hope for the weekend!
All the best from Moscow!
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 day +6:  staying low but feeling great

1/10/2013

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All blood work came back good again today.  All the important parameters were staying at good levels (for someone who wants to be neutropenic)  Really didn't budge much from yesterday's values so we are relatively stable.

Today's Blood Work:

Hemoglobin:  114
Leukocytes:  0.08
Platelets: 36

So far, nothing too new to report.  I would expect the levels should slowly start to give a bit, since this is day +6, but as Dr. Fedorenko states, every body is slightly different and things will occur according to how your internal machinery makes it happen.  Aren't we truly amazing beings!
Short and sweet today as outside of the hemoglobin being up slightly, not much else to report on.  2 continuing education courses done for shoulder rehab....and also maybe a bit of Tiger Woods PGA  golf APP.  It's all about multitasking!
All the best from Moscow!
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dAY +5:  hOLDING STEADY

30/9/2013

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As expected, at this point in the journey, my numbers have started to stabilize.  This should remain this way for likely the next 2 days, until we start seeing first a slow rise in my blood counts.  This will be followed by a rapid spike once engraftment of the stem cells in the bone marrow occurs.  It's almost like catching timbers to a flame before the logs catch fire...see I'm already thinking of the cottage:)  Good sign!
Dr. Fedorenko ran full blood biochemistry this morning to check in on the liver enzymes.  Good news in that all functions have returned to normal.  ALT is still a bit elevated, but a third of what it was a few days ago.  He will be administering another round of hepato-protective agent this afternoon, simply as a caution, but certainly I am relieved.  He leaves nothing to chance, always staying one step ahead.

Today's Blood Counts:
Hemoglobin:  103
Leukocytes: 0.08
Platelets:  38

All counts are remaining in safe territory, so along we go.   Day 4 for isolation today...I'll have to either start looking for some more interesting APPS to download or get going on more continuing education credits for work.  We will see which one wins out:)
All the best to you all.  Thanks as always for your support!
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Day +4:  still dropping....

29/9/2013

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Good morning again from suite 328!  The day, as always, started at 7 am with my blood work and IV fluids (glucose/dexamethasone), followed by the normal routine of prepping for the day.  As a father of 3 boys, I have to say, things get done a lot faster without the little people running around you.  Problem is, I get everything done, then have nothing to do:)  This isolation thing has an upside!  I think I'm going to have to give myself a bit of a pep talk before heading back home to the usual busy life:)
Dr. Fedorenko has given me my updated numbers and again I am pleased...
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Hemoglobin and platelets are still floating in reasonable territory, and those Leukocytes are getting pretty darn low to boot!  Well done guys....this is why we do the chemo!  Hope for more news tomorrow.  
Dr. Fedorenko will also be checking full blood biochemistry tomorrow to be sure the hepatic function has returned liver enzymes have dropped back down and kidneys are functioning well.  One more down in isolation!
Love from Moscow!
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Day +3:  Down they go!

28/9/2013

8 Comments

 
Day three post transplant and Dr. Fedorenko has provided me with my numbers after today's blood work.  Needless to say I am pleased with how they are looking so far! 
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The important one of course, is the Leukocytes, which again over the past 24 hours, have dropped from 0.57 down to 0.11.  Hemoglobin and platelets are still maintaining at acceptable levels.  
All I can tell you, is that my day consisted of a waking up, eating a simple breakfast, having a shower and cleanse....and that pretty much put me back wanting a nap.  So you know what?  I did.  While here, you listen to your body and do what it tells you it needs!  Certainly there is no where else I can go or things I can do...lol!
Quiet day here in isolation suite 328.  Just numbers going down where we want them to go.  More updates to come tomorrow!
Love from Moscow
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Day +2:  Isolation begins!

27/9/2013

11 Comments

 
     Before going into the many events of today, I wanted to give a quick explanation.  The reason for the title is that the day of your stem cell transplant occurs counts as day 0.  Each day from that one forward, are simply numbered outward from there.  No, that's not Keith's original thinking; rather just the way things are referred to within the process.
    Slept very thoroughly last night after about an hour walk outside with mom.  The sun, after 3 weeks of being here in Moscow, decided to pay us a visit.  Glorious!  Boy it felt good to get fresh air (like 8 degrees) with a crisp fall feel to it.  Amazing what that does for the soul.
    I was in the dead of sleep this morning at 7am, when the nurse came into take my daily blood draw.  I think I managed 'Dobrayeeee' out of my mouth (not the full Dobraye ootra for good morning in Russian) and I was back asleep.
    At 11, Dr. Fedorenko returned dawning a mask and full body aprons, and I knew the results were heading in the right direction.  Overnight, my leukocyte levels had dropped from 3.2 down to 0.57.  It is now time for Isolation to begin!    These numbers should continue to drop over the next 2, maybe 3 days, until they bottom out.   When it comes to the leukocytes, the lower the better.  My hemoglobin and platelet levels appear to be holding well within the comfort zones.
I have mentioned many times how impressed I have been with the staff and protocol utilized here at this hospital.  They do many, many transplants, some for autoimmune, more for cancer.  As such, when the time comes...it's down to business.
I was given a half hour lesson on cleansing the body using various sanitary lotions.  Now, you may think 'a half hour to learn body wash?'.  Let's just say after the incident where the armpit thermometer went into the mouth last week, I paid extra attention.  Thank goodness in all the pointing and gesturing about the thermometer, she didn't point to her bottom!
     While you cleanse and change into new sterile clothiing, the nurses are garbed up and sterilizing your entire room.  Walls, chairs, linens, you name it, it is disinfected.  The hepa filters in both the inner chamber where I live and the outer chamber where the fridge and bathroom are located are now running 24/7.  A UV light remains on in the bathroom at all times, while I am not in there. Don't need any burns on the top of my new lid...more on that in a bit!   Again, I am duly impressed at how thorough the regime is, and your safety is always of utmost importance.
    They have already started supplementing me with g-csf shots, which were the same shots utilized for four days prior to stem cell collection.  It is now a single shot, and the dose is about half of that which they used back then, but it will help enable my stem cells to reboot this immune system a little quicker.  I knew this was used, but other than for speeding recovery, I thought I would ask Dr. F more about the logic behind it.  It purely comes down to the fact that it decreases the time the patient spend in a neutropenic state.  Our immune system will definitely reconstitute.  In fact, this would even happen in the absence of a transplant (just takes much more time).  However, with that said, there appears to be a critical time where infection rates rise dramatically with fungus, bacteria, etc while in a neutroprenic state.  This timeframe is usually in the 2-3 week range. Therefore, the cost associated with the prophylactic g-csf injections ultimately far outweighs fighting any untimely infections which may arise in a prolonged period of neutropenia.  Enough of that...on to the new do....
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One last reminder of what 'with hair was like'
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Leave the burns?
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I think the last time I did this was when I was 17, so it was kinda fun!
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And there we have it.  Going to be just in time to go home and get ready for a serious Canadian Winter!
We will wait and see what tomorrow's results come in at.  Hopefully we will continue to see those auto reactive leukocytes disappear.  As always, thank you all for following.  Your feedback has been great and a very special shout out to Scott and Michelle at their wedding tonight.  Sorry I can't be there with you guys.  Hope it is a wonderful celebration!
Love from Moscow
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Day +1

26/9/2013

2 Comments

 
For the next few days to week, the focus will be on leukocyte levels.  I will include the daily updates for the daily blood draws.  We have officially hit neutropenia when my leukocyte levels drop to be a level of 0.5.  This is the period where I will enter into full isolation and wait for engraftment to occur.
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These are the blood values which were taken during my initial testing week. All these values represent numbers for Hemoglobin (Hb), Leukocytes (Leuk) and Platelets (Plt).  At the point in time of registering these values, all fell within the normal acceptable limits.  This would have held true until the completion of the chemotherapy, which starts to drop the numbers appropriately.  Today was my first blood draw since the stem cell re-infusion.
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So here is where we sit with my values today.  Both platelets and hemoglobin have dropped, however are still within acceptable levels that Dr. Fedorenko expects to see.  Notice that the Leukocytes are now at 3.2.  This is a bit of a drop, just now below what are considered normal values in the human body (4-10).  We will wait to see where they go to tomorrow.  Ultimately, I want to see these numbers diminish dramatically over the next few days to near imperceptible levels!
I do also have a slight elevation of my hepatic (liver) enzymes.  This is a normal occurrence in about 60% of patients, and so as with everything else here in this Hematology department, Dr. Fedorenko has simply infused some hepato-protective agents in to me and these elevations should be quite transient. 
Day by day we will watch these values, hoping for increasing drops in leukocytes.  So far, so good. 
I feel great, just fatigued and needing sleep!  Next update, day +2!
Love from Moscow
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September 25, 2013:  My new birthday!

25/9/2013

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    OK, so it's not my 'real' birthday, but today I was able to experience an extraordinary event.  This was the day that my islolated hematopoietic stem cells were re-introduced back into my body.  It is figuratively called your birthday, as it is the day your brand new, non compromised immune system begins to reboot in your body. 
The morning started of as usual, many symptoms had been better than the night before with the chemo, their intensity reducing more and more.  Got up, had a stretch, ate some breakfast, walked the halls, then thought to myself...geez, I need to go back to bed!  Well, good intentions sometimes get pushed by the wayside, as it turned out to be a busy morning.  Today, my friend Kristy from Australia is heading back home, and another girl from Edmonton Alberta, named Maja has now joined us up on the third floor.
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This is a picture of Kristy, Maja and in the lounge.  I am sad to see Kristy go as she has been fun to have around and another great source of information for what to have expected through this process.  I wish her safe travels back to Oz and healing for years to come!
After goodbyes, easy conversations and a few laughs, I did return to my room to enjoy yet another sub courtesy of mom.  Sheer pleasure! 
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    I really had to enjoy this one, as it may be the last allowed for a while.  Dr Fedorenko is suspicious that I may be entering into leukopenia.  We will know more over the next few days, but he is already going to the side of caution.  No infections allowed!
After demolishing my sandwich, I laid down to wait for the Dr. and assistants to come back in to check up on me.  The strangest thing happened...SLEEP.  Not the light dozy stuff I do at night, followed by being awake for three hours in the middle of the dark, but comfortable, deep sleep.  I awoke a couple hours later almost wondering where I was and what time it was.  Fortunately for me, it was time for some excitement!

Welcome to the transplant!

    Now, while many people are nervous about this portion of treatment, I can truly say; not me.  Not even in the least.  This is what I came here for and represents one of the last major hurdles for me to cross.  The nurses came in, garbed me up for the procedure, placed an ECG, heart rate monitor, and BP cuff on me and we were ready to roll!
Dr. Fedorenko and Dr. Julia then showed up with my stem cells, which were still frozen in liquid nitrogen and began prepping them for transplantation.
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Liquid nitrogen container with the stem cells!
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Rewarming the stem cells from their frozen state!
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Dr. Julia re-infusing one of several vials of stems cells. Everything just felt right!
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All stem cells returned home! Way to go guys!
    The entire procedure lasted about 10-15 minutes.  This again was followed with a couple of hours of sleep!  I was happy to have the rest, and it's now what my body needs to do, rest and repair.
Leukocyte Watch:
    Now for the leukocytes.  Each morning, blood draws will occur to measure what all blood components are maintaining at, or more importantly, decreasing to.  My stem cells will take about 10 days to engraft (find their home in the bone marrow and start regrowing my immune system.)  The daily blood draws will also confirm which day will be necessary for me to enter into full isolation with no risk of outside contamination.  A short, but highly necessary period.  Unfortunately means no oranges, apples, eating out, people visiting, etc., but again only for less than two weeks.  Heck we've come this far!
One last fun part to the transplant process is that you get to ceremoniously throw your liquid nitrogen across the hospital floor.  Adds that last little bit of satisfaction to having come this far and really is just a lot of fun for doctors and patients alike!
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Almost got Dr. Fedorenko's foot. How's that for appreciation for a job well done!
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Good laughs and companionship. A real healing environment!
All in all, an exciting day.  A day to reboot the old defective with something new and compliant.  The next few days will be a bit more subdued as it is more of a waiting process to see what the chemo is doing with the leukocytes and the possible need for isolation.  I will do my best to post the results of the daily draws. 
As I close tonight, I have to say this is the best I have felt in the past week.  I am tired; I am not sick.  I am aware my body needs rest; not afraid it is injured.  Quite the opposite...healing is happening and that is beautiful!
Love from Moscow
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