A Slice of Life, of a Cancer Family

Happy Family day everyone.  Hope everyone spent time with your loved ones.   I wanted to write down a couple of words on what it is like to deal with pediatric cancer.  It’s not like we haven’t had much to say, but here we go again.

On Feb 15th, Indira took Maya in for a regular visit.  That means a finger poke.  Not a big deal, even by Maya’s standards.  Today however, was one of those days, in so many ways typical in our lives.   Indira told me that Maya’s red blood cell count dropped significantly.  Moreover, ther retic counts also dropped dramatically.

Huuuh?  what does that mean?   When one drops on it’s own, as we’ve seen with platelets, it’s one thing.  When both drop significantly, well that’s something else altogether.  So, google goes into action on our behalf and very shortly, we see that having both drop is not a good sign.  It means something is going on in her bone marrow.  Further more, Indira thought that RBC and reticulocyte counts have been dropping for a few months already.   You mean there was a trend and we were not notified?  How could this be?  Surely trend of such nature is material information that could have a significant impact in Maya’s life.

We were already heading into the weekend and both Indira and I were starting to bare down.  A quick email off to Maya’s oncologists, haemotolgists and BMT doctor were responded to very quickly.  Also not a good sign.  Oh no…  OK… we may now need to rush into BMT.  We do have some understanding of how AML presents and what it can do.  The weekend was spent in somber moods over all.  Is this it???  You have thousands of thoughts rushing through your head. Will she live through this?  What complications can we expect?  Will we get to BMT in time?

On Monday, because Maya was presenting a fever for the past few days, we decided to take her in.  Oh geeze… there’a a day gone, and it was, even with the preferential treatment we get from Sick-kids emergency.  This notariety is an unwelcome one at best, but…  The visit was unevenful. Maya did spike another fever, but nothing  much was made of this.  The only issue we had was that Maya’s veins on top of her hand are scarred from prolonged use. As a result, when poked, there isn’t a good blood flow.  That means the nurse when drawing blood can damage the blood cells, through the artificial vacuum that’s created by pulling.  The consequence is that the blood reading may be off.  After a long day at sick kids, we made it back home, only to return in the morning for her regular clinic.

Another blood test…  And this time?  Everything came back positive. That is to say, Maya’s platelets remained at 80, from the transfusion she received yesterday.  Hemoglobin count was good as was the retic count.  What de hell???  Well… the culprit was the fever.  When fighting an infection, both platelets as well as RBC’s can get exhausted.  So, the long and short of it all is, Maya is doing well.  Platelets seems ok and RBC is also ok.  There is no trend, as it turned out.    While it is true that Maya has been complaining about fatique recently, it was not  as desparate as we thought over the weekend.

So, overall, everything is as good as it can be for now.  But, it’s not that hard to take what is seemingly a steady boat and have it rocking all over the place.  Such is the reality of our lives.  And we, on a daily basis, give thanks to what we have been given.    We are thankful that we have Maya with us today.

 

Platelets are…

Update:

We finished our fifth round of chemo this past Sunday.  Platelets dropped to 11 and Maya got transfused.  Oh well…  I suspect that Vidaza is impacting her platelet production…   Vidaza is known to suppress blood component generation.  So, the guess is,  Maya’s marrow is starting to generate platelets and Vidaza has temporarily suppressing it.  We shall see this week if Maya maintains her platelet count…

We are in the middle of getting our fifth round of Vidaza. There is little literature on this subject matter as therapy induced MDS/AML is not that common.  It’s even less common in pediatrics.  What literature there is seem to suggest the following:

  • If the patient responds early, that’s a good sign.
  • It may take approx 6 months to see any response.
  • It is not a cure.
  • And MDS will progress into AML

Well, Maya has responded very nicely to Vidaza.  For the first time since Aug 16th, when we found Maya had MDS, she is making her own platelets.  Her counts this week were:  Mon (16), Tues (14), Wed (14), Thurs (12), Fri (18).    Maya generated 6 points.   For a normal person, the counts are between 150 – 450.  In the past 5 months or so, we’ve become transfusion dependent where every week, we need to get platelet transfusion.  And when she becomes low, say less than 10, she shows signs of bruising and patiechiae (micro-veins popping)  And at this range, we worry that she may have internal bleeding.  We keep a close eye on her when her counts are low.

Today was a very good day.  It’s the first time in the past few months where Maya is generating her own platelets.  Yes, MDS is still there.  Yes, we worry incessantly. Sometimes, Indira can’t sleep because she worries about the bleeding when the counts are low. What if she develops internal hemorrage?  And yes, we have discussed and toiled over the decision process in stepping through the BMT (Bone Marrow Transplant) doors.   BMT is in our future.  Yes, the four of us will step through the BMT doors.  These doors may not bring tMaya out with us.   But today, today I shed one tear.  Just one.  And it was a tear of joy.  That magical number meant the world to me, to us.  And today, our little girl, my awesome little girl could not have given me a greater gift.  It has been a good day.