Pokies Suck!

M:  I don’t want another pokie, daddy.  I already had 4 yesterday, and 2 finger pokes today.

K: I know that Maya.  We dont’ want to give you pokes, but we have to take blood samples to see what’s going on inside?

M: Why do I have to get pokes all the time?  I don’t have cancer anymore.

K:  Well Maya, you are still very sick.  You know, if I could take the pokies for you, I would do it in an instant.  But, I can’t.

M: I know that.  You tell me that all the time.

K: That’s because it is true.  You know I got in trouble with the Doctor today, because I told them no pokie today.  They wanted to do another poke.  And I also told you today that tomorrow, you will likely have to do a poke.

M: I am scared.  Doctors are humorless people and they’re boring.

K: Who told you that?

M: I don’t know…

K: And when you hurt, Mommy and Daddy hurt too.

M: Well, not literally.

K: Yeah OK.  But it hurts us to see you hurt.  Do you like it when Mommy cries?

M: No.

K: Well, I don’t either. I don’t like to see you cry either.  And when you do, it hurts mommy and daddy.

K: So, this is what I think.  I think we should put in a line.

M: Noooooo…

K: Just listen. If we put in a line, then you won’t have to be poked all the time. And because there is a little cup under the skin, so the nurses won’t miss.   And there are certain things you dont’ get to decide Maya  because you’re still very young.   It means you get only 1 poke when we get chemo and that’s it.  But tomorrow, I think this is what we should do. Firstly, we’ll see if we can get blood return on the P(eripheral) IV.  If we do, then no poke.  It”ll probably not work, right, because it didn’t work today.  That’s why we did the finger pokes. I think we should put in a butterfly at the bend of your arm.

M:  Noooooo it hurts!

K: I know.  But, you don’t have good veins Maya.  And the nurses miss all the time.  I know that the bend of the arm hurst more, but it’s only one poke.  And it’s less likely that we’ll have to poke you again and again.  But I’ll let you decide that.  We can let Rita (RN) take a look tomorrow, and if you want it somewhere else, that’s ok with me.  But you have to remember that if we go to your hand, they might miss.  At the crook of the arm, because the vein there is large, they’re not likely going to miss.  And most likely we’ll be able to use that line for the rest of the week.

M: I don’t want any more pokies.

K: I know Maya.  And I wish I could take the pokies…  So that’s what we’ll do tomorrow OK?  And Daddy will come to the hospital and make sure you’re ok and help you through it OK?

M: Ok…

 

The nurse missed the vein at the crook of Maya’s arm.  Tried digging for the vein four times before giving up.  We ended up getting a line put in on the top of Maya’s hand.

Rock and a Harder Place

About two weeks ago, we had another bone marrow aspiration.  It’s one of those procedures that we’ve become used to.   We walk her into the CuJo’s room, we kiss her good bye, and we meet her at the recovery room, some 45 minutes – 1 hour later.  By then, she will be asleep, with a big patch on her back.  It’s never easy to see your child go through an operation, albeit, a minor one.  Maya even pushed propafol herself.  We laughed about it.

The results have come in.  In her bone marrow, some colonal masses were found.  Out of 70 cells tested, 2 showed abnormalities.  The translocations are back.  Technically, we have relapsed.  You can never relax with Cancer.  No wonder “we” the parents develop PTSD.

Since then, Indira and I have had the chance to talk to Maya’s primary Haematology team as well as the Bone Marrow Transplant Team.   We are back where we were around this time, last year.  All the undertainties, worries and fear are back.  The difference between last year and now?  We are a bit wiser in the ways of blood disorders, which does not bring any comfort to us at all.

So where are things now?  There is only one known cure for MDS.  And that is a bone marrow transplant (BMT).  The BMT team here at sick kids are mobilizing.   We’ve had two meetings with the team here;  The first was with the BMT team, the second with Maya’s primary Haematology team.  The summary is as follows:

KIR Therapy

Killer Immunoglobin like Receptor therapy.  This therapy is offered in St. Judes, in Memphis Tenassee.  Our BMT doctor, Dr. Schechter-Finkelstein feels it is the best option for Maya.  We have a lot of faith in Dr. Schechter-Finkelstein.   She understands us… KIR therapy uses Haplo-Transplant.  For us, it was thought that I (Kirby) would be the best match for Maya.  It’s because between Indira and I, I am more different to Maya.  The long and short of it is that they want the new blood to be sufficiently different such that my blood will at some point attack the reminent of left over Maya’s blood.  In other words, my blood will seek and destroy Maya’s blood, once it becomes grafted in her bone marrow.  However, I must be a suitable doner.  The tests are being done now to see if I can be a doner.  Additionally, both Indira and Taylor are getting tested to see if they can be back up doners as well.   All we can do is wait to see which of us can provide the stem cells for Maya.

BMT

Second option is to go ahead with the Bone Marrow Transplant that is offered by Sick Kids.  We have done this before.  It almost killed Maya.  Dr Schechter-Finkelstein worries about Maya not being strong enough to survvse the second transplant.  This fact alone is worrisome.  But, as our backs are being pushed against the wall, what shall we do otherwise?  It is available for what it is worth.  And if push comes to shove, we will walk through this door.

The haematology group feels strongly that we should be taking the BMT therapy.  “It is simply the only known curative therapy for MDS”.  It is always better to go through the BMT when there are very few blasts in the system.   Wether we are talking about KIR therapy or BMT offered at sick kids, the possible outcome is difficult to accept.

In both cases, the chance of “catestrophic event” due to therapy is around 50%.  KIR runs around 30 – 40% chance, and BMT is over 50% chance.  And the little pirahna’s we’ve been forced to use drops our chances, because after all, chemo is poison.  We have been weakening Maya’s system for the past 3 1/2 years.

Well, we are gearing up for another Bone Marrow Transplant or sort.

It’s difficult to “grok” what is happening.  If you look at Maya, you’ll see nothing but a happy 8 year old child who is full of life, full of spunk and beans.  You see a happy child, a bit mischievious but nevertheless she is a lovely lovely girl.   Contrary to you what you see, there is also a child who is deathly ill.  How can it be?

Part of me understand that we have a challenging times ahead of us.  It’s unmentionable, really.  Another side of me is gearing up for the battle.  She is our daughter, a varitable treasure among treasures.   Of course, in a fool’s romanticism, I will gladly carry what I must for this gift that’s been given to us.  For Maya, and by extension Taylor, what would we not willing to go through for them? Time to nail down the hatches again.

Treading water below the water line

is what it seems like at times with cancer.   And the little piranhas (chemo) are forever nipping at you making you slowly bleed, while the people on the boat are yelling procedures in german.  You actually begin to understand what they’re saying.  (Sie denken es ist lustig?) They mean well.

But first things first.  You need to exert certain amount of energy to take a big breath.  Then, you may have a moment to ponder about the pirhanas or the fact that you might be getting tired or that the blood loss may catch up at some point.  All these points, are academic in this place you are in.  Time for another breath.  Huuup!!!

I dont’ know if I am losing my mind.  Nothing seems to make sense, while questions just seem to pile on and on.  The irony is, those people on the boat are saying, “You guys are doing a great job treading water!”   None of these germans know how to swim either.  Although some are just lovely human beings.

 

Maya relapsed.  MDS is back.  The people on the deck of the boat are mobilizing.