Category Archives: Kirby

all things involving Kirby

One of the Lucky Ones…

I had a chance to talk to a lovely physician who was  interested in telling our story as part of an initiative to tell the healthcare stories.  We agreed to the interview fore-mostly because I think we have a story worth telling. More importantly, our success was built on those who came before us;  through their participation in the therapies that are available, through their losses and successes. We are now, part of that larger landscape. We add our name in wanting to help in whatever capacity we can.

To be sure, we are an outlier in a continuum that has more success stories than ever before. Our story is important because it shines a light in an area where the challenges are still greater than the successes.  More than half of the children diagnosed with Stage 4 Neuroblastoma will not survive 5 years.  Out story is important because addressing the needs of the subgroup which we belong to, (stage 4 subgroup) the hope is that the benefits will translate to other sub-groups. At least that is my rationale.

There are two dominating emotions that we deal with on a daily basis. The first emotion is that of ineffable gratitude. Yes! Maya is with us. All the possibilities can still be play out. The future concerts, plays, school events, first kiss, first love etc can all still play out. We can still watch her sleep at night and have our hearts overflow with the love of our child.

We are grateful for all the people who helped us in our journey. And there are so many people to thank. Doctors after doctors, nurses after nurses, who looked after our Maya…  Those who prayed for us, chanted for us… there is an unending number of friends, teachers, colleagues that all played a part in keeping our Maya alive.

The subsequent emotion is that of anger. How could you do this to our child? Again we are part of the larger landscape that will live with the effects of the therapies. We started with “Stage IV High Risk Neuroblastoma”. We are now, High Risk Therapy Related Mortality group.

  • Maya has lasting damages.
  • Maya is likely to adjust poorly in society.
  • Maya will not do well economically.
  • Maya will not live as long.
  • Maya will likely have other complications.

While I applaud every little successes that comes our way,  questions arise.   When will we save our children from dying? The image of children, those friends of ours, are forever etched in my mind. Those friends who are no longer.

You (Oncology) have to do better. Our current methodologies are not good enough. Not by any stretch of the imagination.

  • To whom do I forward my questions to?
  • To whom shall I vent my frustrations to?
  • The oncologists? They’re part of the machine too and they are in the trenches with us.
  • The bureaucrats?
  • The Government?

It is not clear. And when such criticisms are voiced, often, the type of response that we get are:

  • It’s much better than 10 – 15 years ago. Yes. Maya would likely have died 10 – 15 years ago. So, yes. But have we really come that much further? I wonder.
  • What do you want us to do then?  Well… do better. Why would you ask a non physician such a question? Do you tell your auto-mechanic how to fix the intermittent knock coming from the car?

We accept and live with what we have, even if each little cough that Maya has, is a dagger to our hearts. Even so, that is something to be thankful for. Because the possibilities are still great.

And in the meantime, Indira and I can now turn inwards. We look at the wasteland that was created inside ourselves in our efforts to keep Maya alive. The damage is also in us. PTSD that has been noted in the paediatric cancer parents is real.

The thoughts and the emotions which we have lived with need to be dealt with as well;  those terrible terrible days when the blackness overwhelmed us.   The anguish that came with not being able to do anything to help our daughter must also be dealt with.  The consequence of hanging onto those terrible emotions will continue to hurt us.  And we will not give another inch to cancer.

We have lived through an extraordinary event in our lives.   We are not alone.   Because we know what that “place” is like, we want to help, although it is not yet clear how.   We will find a way to contribute more than we are now.

We are the lucky ones.   There is no denying it.   We hit a jackpot.  And we are thrilled!  And even as we inspect the damages in us, we bask in the warm sunshine called Maya.  We bask in the profound human conditions called Love, Devotion, Compassion and Hope.

Vaccination Drama

Recently I got into a heated discussion with some folks in the paediatric cancer forum regarding vaccinations. I think a healthy debate is beneficial for everyone who cares to listen. In any argument, the hope is that one can walk away from the debate with a better understanding to make the right choice for themselves as well as others. We all benefit from such a debate!

The issue of vaccination has landed in the same theme park as a religious arguments, climate warming, UFO, big foot etc, and no amount of reason seems to prevail. Regardless of the mountain of evidence that exists on this subject matter, still some view vaccination as evil.

Many people have written about it better than I can ever articulate. So why add to the pile?

Because I want to give a perspective from a pediatric cancer family. Not vaccinating may be harmful to individuals, community and society and possibly deadly for us. Of course, vaccination isn’t without risks. If you are immune compromised, or have other issues that require special attention, it may be wise to consider your options. This fact could not be more clear for us, who have a immune compromised child due to cancer therapies.

In the course of the said argument, I was especially drawn to the social aspect of the issue; One gets vaccinated to not succumb to diseases, but also to help the society at large as well. We all have a social responsibility to ensure that we do not harm others. In my opinion, altruism is part of our genetic makeup. From the social responsibility perspective, it seemed to me that not being vaccinated is akin to drunk driving.

Do all drunk drivers end up killing others? No. Probably only a handful of people end up hurting others. But it is understood that driving under the influence is a bad idea for our society and subsequently we do not allow such behaviors. The risk is substantial enough that we do not allow drunk drivers to get behind the wheel.

So, why is it that some of us, including some in the pediatric cancer circle, think that it is OK not to vaccinate? Some arguments I’ve heard are:

  • It’s a personal choice.
  • vaccines have poisons in them. Mercury, formaldehyde and Adjuvant are very unhealthy for people.
  • We have had horrible reactions to it.
  • There is a conspiracy to harm people through vaccination

If we translate some of these arguments into a drunk driving scenario, one can immediately see the failures of this line of thinking.

  • It’s my personal choice to drive drunk.
  • I had a horrible experience by not driving home drunk. I don’t know where I ended up.
  • There is a conspiracy for cash grab by the government.
  • I’m fine even if I have a few drinks.

There are genuine cases when vaccination may not be right for you. One of them is if one does not have a good immune system. In such a case, vaccination is not something that should be considered. But such a consideration should be made in conjunction with your doctor.

Moreover, there is a difference between getting the primary vaccines over flu vaccines. The primary vaccines which we get for diptheria,Tetanus,Rubella, Polio, etc saves lives and horrible consequences of the disease. Flu vaccines are more to protect you from unnecessary down time. Does it work always, no. But generally it is a good idea, although for most people, it is not deadly to not get the flu vaccines.

Notwithstanding a handful of acceptable reasons, if you do not believe in vaccination, all I can say is that you are prejudiced and put others in danger; prejudiced because because the opposing arguments flys against the substantial evidence. It is also very dangerous for those like us, who have been immune compromised for years.

What is incomprehensible for me is this:

  • 1 / 1,000,000 dose of vaccine results in 1 person being compensated. (We can say that one person either died or became seriously ill. Those who suffered as the result of vaccines, most were elderly with weak immune system)
  • 2 / 10,000 children under 5 will get cancer from CT scans.
  • 2 – 3 / 100 pediatric cancer patient will get secondary malignancy from the cancer therapy.

Huge frustration that the paediatric cancer families often deal with is the lack of concrete data. We are often left to make decisions without any form of data to back our decisions. We make life and death decisions not based on facts, but gut feel. Will this clinical trial work? Will we have to deal with severe adverse reactions?, are but two of the questions we deal with on a regular basis. So when we are presented with concrete and credible information, it should be a no brainer.

Except it isn’t. I fail to understand.

  • Why would you not vaccinate your children? (outside being immune compromised and with the consent of your oncology team)
  • Why would you be OK to give chemo or radiation to your children when the chances of these therapies having severe adverse effect is so much higher?
  • Why is it OK shirk your social responsibility?

I shudder at the thought of having survived two cancers, and having Maya exposed unnecessarily to other infectious diseases. It took all we had to keep Maya alive. Even then, the ripple effects of cancer just about destroyed everything it could touch in our lives. Everything!

Why would you insist on not getting vaccinated when it could potentially harm others? Why is your right not to vaccinate more important than my right not to be sick or die from your decision? Drunk driving is not acceptable. It destroys lives, just as much as not vaccinating you and yours.

I welcome your input from anti-vaxxers. Help me understand why you won’t vaccinate? And by the way, do you think drunk driving is OK?

PS: According to the WHO link below. 1.5 Million children died from vaccine preventable death in 2008 alone, against 1 / 1,000,000 death due to vaccine.

sources:

http://www.ncbi.nlm.nih.gov/pubmed/23790993
http://www.who.int/gho/immunization/en/
http://www.hrsa.gov/vaccinecompensation/data.html
http://healthimpactnews.com/…/zero-u-s-measles-deaths-in-1…/

Shell Shock

The soldiers were hugging the walls in the trenches. The attack had begun. The bombs were going off all around them. Anyone who could muster even false bravado to rush out from the trenches were cut down like they never mattered. I guess they never did matter much. The old vets who’s been around these offences enough times knew better. Yes… here we go again. We just need to hunker down. The bombs will start the offensive. May be there will be some mustard gas. Did I clean out the canister the last time? Better hope so. Might regret later. If you don’t get too crazy, you’ll be OK. Hunker down and don’t be a hero.

The german foot soldiers will rush the line. Hope they won’t get to the trenches. If they do, that’s going to be bad. Soon enough, there will be blood. Lots and lots of blood. Limbs will liter the battle field, mingled with blood, urine and shit. That’s not so bad, until the bodies start to decompose. Yes, we’ll lose some good men now. Will it be Rob over there? Or may be it’s Sali over there. May be it’ll be s my turn this time. If it’s time, it’s time. There is no rhyme or reason. That’s just the way it is.

There is nothing scarier than the quiet that follows the bombing. What will it be next? Will it be the tanks? Will it be the gas? Or will it be the foot soldiers rushing towards the trenches?  You know, the funny thing is you often notice the stupidest thing when you’re worked up.  Me, I feel my lower lip tremble, when we get to this place.  Oh… and the ache … the adrenalyn ache.  Still, the thoughts run amok. How many tours so far?

blink…. blink…. thump-thump… thump thump.

Has it sunk in? What do you mean?

“Oh try the antipasto. They’re to die for” [non descript laugher]

“Did you hear about those sightings of Rob Ford on the subway?”

“So and So, lost 50 lbs”

“So and So posted a picture of their dinner. It looked yummy”.

What the fuck are you talking about? But…. but the germans. They’re still there. They’re just hiding. They can rush the line any moment now. We need more ammo. Where are the back ups? They are still there!!! You’re wrong. They’re still there!

I need the kevlar. I need the rations. What are you’re talking about losing weight? Are you mental?

“Where did you go for the summer vacation?”

“Did you see Kim Kardashian’s ass?”

“Did you know Prince Harry was in Memphis?”

Whaaa???

Even if we got back home, we can never talk about Kim Kardashian’s ass. I’ll need at least my side arm. What do you mean it’s illegal?

What do we do now?  What do you mean relax?  I know what it means but what do you mean relax?

But… But…

Ah….

This is Life

Part of the protocol we are on is the stem cell collection from a donor to be used in the bone marrow transplant. That donor is me.  You can see the schedule here.

Preparation starts T-5, where I am injected GCSF, which stimulates my bone marrow to generate more stem cells. These stem cells are collected at T-1 and T – 0, where it is injected into Maya. She will fight the cells.  And we will have fevers to deal with.  We will also have to be very careful with GVHD.  Some additional photos are here.

DSC_8195A wonderful nurse here at St. Jude prepared me for what was to come. She compared the effects of GCSF to giving birth, in terms of pain it could cause. “Dont be a macho man. Get the pain killers because you’re going to need it.” She had first hand experience. It feels like a bad flu, and some feel the pain more than the others, I was told.

I had advil and tylenol with codine. Alright. We’re good. And yup. It felt like I had a bad case of the flu, body achy and my bones hurt. But, so far so good. Nothing I can’t handle. And of course, there is the notion of doing this for Maya. This is the first time in the past four years, where I can actively contribute to the wellbeing of my child. It hurts, but it felt good. The caveman in me who wanted so badly to protect my child was happy in pain! I would do this thousand times over. I even told a very good friend from South Africa that it wasn’t so bad, I can handle this and we were good.

Of course, that was the universal trigger to bring on the pain. Oh boy… At T-2, the pain started. I hurt everywhere. Every bone in my body seem to rebel against the artificial urging of the production of stem cells. The general pain was punctuated by sharp shooting pain as well. I could only guess that these sharp pains were the result of colonal masses leaving the bone in to the peripheral blood system. In terms of pain, yes, it’s right up there with any that I have felt in my life. While I have never broken any bone in my body – though I’ve come close in a couple of occassions – I imagine it wouldn’t be too different from what I was feeling then. I did load up on the tylenol but it was not enough. I also felt nauseous… because I took too many too soon. So I grunted the entire night in pain. But, in some romantic notion, I suffered for Maya. Yes, I would do this a thousand times over for my children, though I am not saying we need to test this statement out.
And in the morning, the pain just disappeared. This morning (T-1) I took a short walk over to the donor room where I was hooked up to an apheresis machine. It’s like a dialysis machine, where the blood is drawn from me, the stem cells harvested and the rest of the blood returned. The funny thing is, I felt woozy because of the caltrate that is added to the returning blood. It also made my finger tips and my lips tingle. Caltrate is used in the anticoagulant while being processed. A while back when Maya had the same procedure, I was stumped on how they’d separate the stem cells from the rest of the blood product. It turns out it’s obtusely simply; they just spin it to separate out the blood component based on the specific gravity of the parts.

Any ways, I am happy to be so actively participating in Maya’s therapy. In blood, she is me. This will never be more true after our therapy here at St. Jude. We will share the same blood.  A father and his child will never be more intimately connected, in some ways. I am grateful that the technology exists to allow a life to be saved in such a way.

I am very happy

St Jude Summary

St. Judes is a world class research Hospital.  Dr. Tal Schechter-FinkelStein, our BMT doctor in Toronto went out of her way to get Maya down to St. Judes.  And gosh, she really went out of her way!  We’ve just returned from our initial consultation.  We’ve had a battery of tests and had the opportunity to meet with everyone who will be involved in our care.  Three of the doctors we’ve met are Dr. Brandon Triplett (Chief Investigator), Dr. Momcarz (fellow) and Dr. Pai (Radonc).

Dr Triplett

There are three main factors that have overall outcome; Disease Burden, GVHD and Relapse.

Disease Burden:

Smaller the burden going into BMT, better the outcome.  It’s simple as that.  Matter of fact, some patients are in complete remission and they still undergo the therapy.

GVHD

Graft Vs Host Disease is a man made disease and come about as a result of the allogenic Translplant.  Namely, putting in the donor’s blood into a patient causes the recipients body to violently object to the process.  The donor’s blood and the recipients blood go to war with each other.  If an acute GVHD develops, it is fatal.  Until a few years ago, GVHD took up approx. 1/2 of the “Non Relapse Mortality”.  The other common complications are due to infections.

GVHD is all about naive NK-Cells and the fine balance thereof.   To a large extent,  we need the selective NK-Cell functions.

  • donor NK-cells should not attach the recipients tissues.  (GVHD)
  • donor NK-cells should attack recipients blood products.  (GVTE, Graft Vs. Tumor Effect)  This is the part that you do want.  We want the donor T-cells to destroy the recipients blood component including the cancerous cells.

Relapse

With blood cancer, relapse is a big deal.  You need to get rid of all the cancerous cells.  Simply relying on the chemo does not work well.  Hence, autologous transplant is not an ideal therapy.  You really need the graft vs. tumor effect.  The donor blood cells, once grafted, will seek out and destroy the cancerous cells in Maya’s body.

And this is where the balancing act comes in.

  • NK Cells cause GVHD.  But, it’s the naive NK cells that are the culprit.  Naive NK cells are those cells that have not been activated.  That is, “called” to battle.
  • So, NK cells are severly reduced from the transplant.  Approximately 1/1000 th will make it to the host.
  • In order to reduce GVHD, Total Limph Node irradiation (TLI) is performed as well.  We don’t want the “nuclear bomb” to go off inside maya.  Even with such reduction, GVHD can still occur.  However, GVHD at St. Judes is in the 5% range, as opposed to 20 – 65% reported prior to these two adjustments.
  • Since you reduce the NK population as well as have a limited number of T and B cells, you are open to infections.  You are likely to get viral, bacterial and fungal infections.    And until the stem cells graft, which typically takes 10 – 20 days or so, you are severely immune compromised.
  • The “study” part of the treatment is that within these parameters, the doctors will add NK cells at some point to see if that has any positive affect.

Yes, the therapy is tough.  And yes, there is mortality associated with the therapy.   The big concern with Maya is that she’s been heavily treated.  So, in this sense, it’s not certain how Maya will respond to the therapy.  That’s part of the reason why St. Judes takes Maya’s overall condition under consideration.  Dr. Triplett has turned down patients, because he did not feel that the therapy may benefit the patient.  In other words, as difficult as it may be, he has turned down patients because he felt that the patient was strong enough to survive the therapy.  Thanksfully, Maya is not in that category.

St. Judes also has a set of guidelines.  For example, if the rate of Acute GVHD is greater than 10 %, St. Judes will shutdown the study.  Also, if Non Relapse Mortality rate is greater than 15%, St Judes will also shut the study down.  In other words, St. Judes Guideline is that if they are losing roughly 1/4 of the subjects, the study will be shutdown.  The fact that the study is open and recruiting candidates, implies that the mortality rate is lower than 25%.  So far, in this particular study, they’ve done well.  There were 8 patients so far, and although not discussed in detail, it seemed that all of the patients have survived thus far.

Although this study is relatively new, the “back-bone” therapy has not changed in 10+ years. That is, the use of KIR mismatched, haplo transplant.  Each new study has been a progressive refinement of the initial idea.  So, while one can’t rely on the statistical measures here, the overall difference would not be significantly different.

Dr. Pai

Dr. Pai is a Radiation oncologist.  In this study, part of the protocol is a Total Lymphoid Irradiation (TLI).  It used to be that the protocol used to involve total body irradiation (TBI).  However, TBI did not increase the overall survival (OS).  Hence, TLI came about.  The objective of the TLI is not to kill the cancer cells, but rather, to immune suppress the patient further.  The suppression in turn will help with the grafting and subsequently with relapse. The overall numbers were impressive.

In terms of dealing with GVHD in the 50 – 65% range, now, Acute GVHD occurs in less than 5% of the patient. And overall side effect were all temporal and not burdensome, because the overall amount of radiation is significantly less.

With our consultations,  I felt much better about heading into this therapy.  Would I choose to walk through these gates, no.  Will it be fraught with difficulties and challenges, absolutely.  Is there a significant chance that Maya succumb to therapy?  Yes.   But… it really is the best option for us now.

  • Will Maya develop GVHD?  How will I deal with this potential outcome?
  • Will Maya graft? If so, how long?
  • How much discomfort will Maya have to endure?
  • How much additional damage will we done to Maya?
  • Will we all come home?

These are not easy questions to entertain.  But, it is with hope we proceed.

Often, I will take a giant step back, insofar as I am capable of it, and take a look at ourselves as well as those around us.  Yes the medical science is severly wanting.  We are lead down a path that is so difficult to walk.  Sadly, that will not change anytime soon.

What I do see is the “true color” of human nature. I see it from our neighbor who so kindly shovels our walkway or makes us dinner on the night that we returned from St. Judes.  I see it from the teachers at Maya’s school.  I see it from other (NB) parents, who always keeps an eye out for us.   I see it from our colleagues at work.

But mostly, I see it in my little daughter’s eyes.  She is the epitome of “Joi de vivre”.  She celebrates life each and every moment of her day.  Whether she lives another year, or another 80 years, I don’t think it matters as much as how she lives it.   Her joy comes from her inner self.  It really has so very little to do with us, the parents. If there is small credit that we might take as her parents, it is that we did not cover or smother her light.

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.

Cancer Dad

I am a cancer dad.  Didn’t choose to be one, but I am.  On this side of the blog fence, I give insights into what is going on in our world, most often pertaining to my beautiful daughter.  And indirectly, it is a point of view of a cancer dad.  In this post I thought I would put more of an emphasis on me and what it’s like to be a cancer dad.

So, what is going on? Here is a brief look.

As you can all imagine, finding out that Maya had cancer was a devastating news.  It was a proverbial baseball bat to the head.  Both Indira and I were stunned.  We didn’t know what to do.  And inevitably we put on the “stiff upper lip” and put on the romantic air of fighting this dreadful disease.  If you have been following our blog, you know the gamut of emotions that we were dealing with.   If we were to play a simple word association game, I suspect I would say something like this:

Frustration

There is a huge amount of frustration in dealing with the “machine”.  Simply put,  We (medicine) don’t know what to do about cancer.  Why do I say that?  Simple.  People die of Cancer.  As a friend said,  part of the frustration comes because there is a descrepancy between what is expected and what we are getting.  The reason for this descrepancy is ignorance and commercials.  That is to say, most people (including us and the oncologists) don’t know how to effectively treat cancer.  A lot of people die and the mortality rate will increase over the next 10 years (WHO).  Secondly, the commercials lead us to believe that everything possible is being done in battling cancer.    What a crock of shit!!!

Our oncologist is a very learned person.  And I don’t doubt that she is doing the best she can.  Except, her best and hence the oncology world in general isn’t good enough. Not by a long shot.

As an engineer, it has been particularly challenging to deal with pediatric cancer.  The architypal caveman in me can’t understand how to deal with this invisible enemy.  There is a strong urge to somehow solve this problem.  Must kill, and bring food for the family.  Must protect… but all fails.   More over, as an engineer who has been trained to ask “Why”, it is particularly frustrating:

  • Why do you give the same therapy when you say each child is different?
  • Why do you not do personalized therapy?
  • Why isn’t there a better solution?
  • Don’t you have better models?  Mice aren’t children…
  • Why does it take so long to get a drug into trial?
  • Why are these kids dying?????

The list goes on and on.  Then, inevitably someone says,”Oh it’s so much better than, twenty years ago”. Twenty years ago, internet was just begining to take off. No one had cell phones and Windows 95 was the big thing.  Remember that?  Twenty years ago lap top looked like a carry on luggage.  Twenty years later,we have an equivalent technology that we carry in our pockets.  THAT is twenty years of progress.  I am frustrated because there hasn’t been any considerable gain in medicine.

Initially, you are motivated.  You search high and low for an alternative therapy, hoping that you’ll find something.  May be I truely believed that there was an answer.  I don’t anymore.  And this is an important point:  I don’t believe there is an answer outside the conventional  therapy because, cancer is a heterogeneous disease.  Cancer is like Flu.  It’s not just one thing. And like the flu, it mutates.  So, any alternative therapy must also in its approach must deal with this.  If there is a therapy that had a positive result, it is only through luck and specific to that child.

The machine does not understand what it is to be on this side of the fence.    I as a caveman, am failing.  Nothing about this is easy.

Anger

When you can’t solve the problem, the subsequent emotion is anger.  Anger is particularly harmful because it taints all of your faculties and your judgement. Perhaps anger helped when  we were cavemen being hunted by a large animal.  It’s not very practical with respect to cancer.

When Taylor was born, on his second day  the hospital needed a blood sample for his blood typing.  When they poked him, I almost decked the nurse.  How could you hurt this little boy?  Imagine then, what it is like for the nurses and doctors to continuously poke, prod, cut and hurt your child?  The fact that they are trying to help is of little reprive.  They are hurting your child.  It does not get easier over time.  Maya has so many little scars.  It makes me angry, even though I can rationalize them.  It is never easy to see your child being hurt even in light of the fact that it is to save her life.

The fact that there are no answer is also difficult to accept.  The fact that we put Maya through hell has little meaning.  It is not one of those things that you can grit your teeth and bare it.  “If you go thorugh this painful process, you’ll be all better”.  No.   You could go through all the therapies and still expire.  But, this is what it is.

Despair

As is the case, we inevitably watch children die.  Some we know well, others are on the periphery.   Watching children die is one of the most difficult things to deal with.  The disease that your child has is the same disease that has taken friends away.  You watch these beautiful children whither away knowing what’s ahead of them.  All you can do is put on a brave face and try to provide some comfort to the parents.  It’s a lie. But, what else can you do?  “The child has earned his wings”.  How I hate hearing that.  Take those wings and shove it up your ass, I say.  I have no use for them.

It is like having dodged a bullet in the game of russian roulete.  All you can do is ever so selfishly  hug your child just a bit harder and sigh a breath,  knowing fully that the next bullet might be the one for your child.   The horror!

How many nights have I, or has Indira cried in silence because,…?    How many nights have we tossed and turned, unable to sleep? How many times have I turn into the computer monitors at work to hide my tears?  Too many to count.  Will we see Maya’s eighth birthday? Her nineth?  Tenth?  What will we say when Maya clues in?  How do you answer your child when she asks “Daddy, why is this happening to me?”

It is a mad mad world we live in.  And out of this chaos, all we can do is what we do now.  And it is with some degree of hope that we live our lives.  There is little else to do.  So, I take trips with Maya and Taylor.  Indira just returned from her trip with Maya.  We are planning for another trip in december to the Galapagos.

Somehow, 3.5 years have passed since we’ve found out that Maya had cancer.  It’s been a while.  And we’re all weary of having *it* in our live.s  But one can’t simply walk away from it, can you?

Every little ailments,every little aches, every little temperature spikes immediately sets our focus to cancer.   Is this it?  And of course we suspect the worst.  Cancer is active. It’s metastasizing… What if there are activities?  What if there are metastasis into the brain?  What if….  Is it normal?  Of course not.  Is it extraordinary?  Not at all. Pediatric cancer parents often times suffer from Post Tramatic Stress Syndrome.  I guess we are too.  And it’s not a surprise.

As we have, to our friends who are in trouble, we say things will get better. No one knows better than us that this is a lie. The truth of the matter is, you don’t recover from cancer.  It’s not something that you  heal from.  The damage that’s incurred is life long and often does not show up immediately nor are they visible.  For example, while Maya enjoys her soccer practice, she will not be a stellar athelete.  Maya has 60% cardiac function due to chemo.   What you do see is that Maya can not sustain a jog for more than a minute or two.

But that’s OK. Atheleticism does not encompass Maya’s entire life.  And even with all that has happen to Maya, she is an unappologetic fighter. She will always make the most of her life. Because that is who she is.   Maya has my respect for that.

These stressors keep me busy, more than I cared to admit.  Now, we need to fit in life.  It’s not easy.  You know these useless trivia facts:

  • You spend more than 1/3 of your day at work.
  • Your relationship with your manager is the second most important relationship.
  • blah de blah.

While I am thankful that our employer has been very understanding, work does bring on it’s own stressors.  There’s little time for much outside cancer.  Not much time for Indira nor is there enough time for Taylor.  Time for Taylor is something that hits me hard.  He understands.  But a nail to the heart is a nail to the heart regardless.

Then, what about time for me?  You sacrifice something when it is absolutely necessary.  The analogy of putting on your air mask first in an airplane disaster is a good one here.  You can’t look after others if you aren’t well.  Of course, we don’t talk about the fact that the plane might be hurdling towards the ground.

Under these circumstances, it is not difficult to question things.  Why is this happening? What have I done?  Did I do something ever so evil to deserve this?  What lessons shall I glean from these experiences?  I will simply take, “it happens”.  To try to put any other rationale is an exercise in madness.

We stumble through this fog called pediatric cancer.  It’s just the luck of the draw for the majority of families that are found in this fog.  Yes, the machine is there to provide support.  But the end analysis is this:  They don’t know why some kids live and why other kids die.  It’s almost indepent to what kinds of care you might get.

And for me, if there is anything that is clear, it is this:  My job is to help Maya through whatever she needs to go through.  If that means tough love, that’s what it is.  If that means helping her bare down, that’s what it is.   I am her strength.  Indira is her warm and safe place.   Somewhere in this mess, along with the tears, are also laughter of a little girl who is very much alive with life and spirit.  And in the days where nothing seems right, we must constantly remind ourselves that the tickling sound in our ears is the proof that we are doing something right.

Road Trip Part 4 (Post Script AKA Haida Gwaii) Odds are Good but the Good are Odd

On July 3rd, 2013, Taylor, Maya and I headed out for Vancouver again.  Why not?  We have made it to the summer.   We have seen a lot of little frustrations in our new Paradigm over the past year.  We’ve had many scares.  For example, there were nights where I could not sleep because Maya’s platelets were so low.  A simple sneeze could cause an internal bleed that would end her life.   Improbable?  Even with platelets as low as 5 (average is 150 – 400), yes, improbable.  But we’re not so unfamiliar with improbabilities in our lives.  And a slight fevers have meant a trip to Sick kids emergency.

Oh, here is a little side note for you.   One evening, we decided that we needed to take Maya in.  Maya was running a fever. We, to our distinct displeasure have a “VIP” status at sick kids emmergency.  As soon as we arrive, we’re ushered in.   One parent who were waiting in line got really upset that we cut the line and started to complain to the triage nurse about us.  Of course, the nurse can’t diverge any info due to privacy issues.   I heard about this after the fact as I went to get coffee.  I even try to find this woman afterwards.   I wanted her to know why we get preferential treatment at sick kids emmerge, not because I somehow feel the need to justify to her.  But rather, if she knew, then perhaps she would not feel so frustrated that she had to wait a bit longer.

Here’s another side bar:  When Maya runs a fever, there is an infection of sort.  It is either viral or bacterial.  Virus, you can’t do much about that and most of the time and it just needs to run it’s course.  If it is bacterial, then you’d want to know so you can treat it.  Now with bacterial infection, you have to culture it and see what it is.  The problem is, with certain types of bacteria, it can run amock before you find out.  You may develop sepsis and it can kill you.  Such an event can happen in just hours, so it is not taken lightly. Generally, the hospitals will apply a heavy duty antibiotics with wide coverage prophylactically just as a precaution.  Not a bad thing.  Except, these antibiotics, such as Vancomycin also have pretty significant side effects, including nephrotoxicity and hearing loss.  We are not too crazy about these side effects.  Maya is sensitive to Vanco and she had developed red man syndrome when she was given Vanco.   “Yes, Maya has allergies.  She is allergic aminoglycosides, she is allergic to platelets and no Vanco!!!”   There were times when Indira had to yell at a resident at sick kids because he was trying to strong arm her into giving Vanco to Maya.  I was at home and Indira out of frustration, called me to talk to the resident:

Resident:  We are concerned about sepsis and we should give Vanco.

Kirby:  Do we know what the bug is?

Resident:  No, but it’s part of the standard of care.

Kirby:  I know that.  But, Maya is different and we know Maya is sensitive…. plus Maya has lost a significant portion of her hearing.  Her temperature is stable. She is well hydrated. She’s coherent, eating and there are no signs that Pip – Tazo is not working.   If we are going to potentially sacrifice Maya’s hearing all together, then it is with a clear understanding of the trade offs and because we want her to live.  But I strongly object to sacrificing her hearing because you want to follow procedure.

Resident:  We should give Vanco because one of the more common bugs, gram-negative bacterium can cause Sepsis very quickly. That’s what we are likely dealing with.

Kirby:  But that’s why we have Pip-tazo going.  You can’t suck and blow at the same time.  Either you don’t know what the infection is  and within a couple of breath tell me that you think it is gram negative.

Kirby:  Thanks for the concern, but we’ll keep a close eye on Maya and hold off on Vanco.

Well, just a couple of side notes.

We’ve also witnessed a wee bit of a miracle with Maya as she now has no evidence of MDS!   I often wonder what the odds are.   Roughly put, we were at 10,000,000 to 1 in terms of getting neuroblastoma as well as getting therapy related MDS.  Children do not usually get MDS and to survive it for a year?  There is just no numbers you can pull out of a clinician anywhere that will peg the statistics.  So, we are blessed to have Maya with us.

Matter of fact, Maya has put on some weight, almost to a point where I don’t want to see any more weight.  But then, I immediately look back at times when Maya would not eat for days on end, due to her illness.   Let it ride.  Her hair is long now and I take distinct pleasure in brushing her hair after her bath, even if each stroke is encountered with an “Ow, ow, ow…”  My paternal advise to her?  “suck it up kid!”

Maya is well.  And the opportunity is here.  If not now, when? So, off we go.  Maya wants to see the dogs, daegee and chokomon.  We have Vancouver Island to visit and possibly,  Haida Gwaii?  But how?  Flying is cost prohibitive for the three of us. And we’d need a car when we get there.  Ferry is equally prohibitive.    Nope!  Do I really want to drive there and back with two kids?  Ummmmm….. don’t want to?  Alright.  That’s “tomorrow’s” problem.  Let it be resolved then.

Maya had a great time with the dogs.   My sister Susan kindly picked us up from the air port.  When we got to her place, the little rats jumped all over us, Maya in particular.   I worked a few days remotely from Vancouver and during the evenings and weekends, we went  to enjoy this beautiful part of Canada.  I think Maya was the busiest of us all.  What de hell???  And she hung out with Tia Jenn on the Kitsilano beach.  She took the dogs our for walks with Auntie Susan.  And on the first weekend, we took a trip to Vancouver Island.  At the recommendation of Tia Jenn, we went to the botanical beach.  It really doesn’t matter where you go, BC is just lovely.  Also, my (not so) little nephew, master Jon Jon,  drove down all the way from Kelowna to join us for the weekend.  That was really nice.  So, we spent a short weekend on  Vancouver Island.  We also borrowed a tent from MEC and so we were able to camp, with a fire, hotdogs for dinner and of course Marsh Mallows.  We also got to see the botanical beach and the China beach.  So, all new to us.  Taylor on the other hand, had a friend to visit on Comox.  So, that was also nice for him.

Now what to do about the time I took?  Fuggedabou-it!  Just do it.  Ummm…. 1500 km to Prince Rupert + 7 hours Ferry ride.  That’s going to be a bit painful.  We are motivated!  Well, I am motivated.  So, on a wednesday morning I packed up the car and headed out.    If we can make… 17 hours, to prince rupert, that would be really really good.  Since we took off around 6:30 AM, that meant we’d arrive in Prince Rupert around… midnight.  I hope the hours will just melt away.  As is the case when I am on a bike trip, first part of the day is all about fidgeting.  Time crawls. But at some point much later, miles seem to just melt away.  At 11 PM, we decided to stop, just outside Prince Rupert.

The ferry ride was non eventful.  Perfect actually. May a found a couple of kids around her age and she played for the entire trip.  That was awesome.  It was just what I needed.  When we landed at Skidegate, we drove another 100 KM to get to Massett, where we booked a hotel room.  What can you say about Haida Gwaii ? I think it’s a paradise.  It’s not a paradise in the tropic deserted island sense, but a paradise nevertheless.

Land is something very special.  I think if we dig deep inside our DNA, you see how land affects you at the very core, at the fundamental level.  After all, it nurtured all living things on the planet. Just as much as Utah impacted me, Haida Gwaii impacted me in another way.  Utah was rugged, harsh and utterly beautiful.  Haida Gwaii is … different.  I think mother earth might have called Haida Gwaii one of her homes.  It’s nurturing.  There is very little that can kill you, (except your stupidity) and the land/sea provides bounties that is hard to believe.   It has a feel that time slows down on this island.  People are friendly, but a bit odd.  Our guide told us that.  And you do need to be a bit odd to live in a place where you are removed from the main stream.  I loved it.  As I write this blog post,I realize that I haven’t taken any time away from Cancer in 3 1/2 years.  It was the first time when we did not worry about it.  Maya was well and we just enjoyed each others company in this wonderous place.  No finger pokes, no IV’s, no scans, no chemo. But of course, we understand now what to look out for, such as petechiae and bruises.

We drove around to different places on the island and fully emmersed ourselves in this place. We had a guided tour of the Masset area,including the Naikoon Park.  We enjoyed it so much that we decided to camp there.  We were right on the beach,looking North to Alaska.  We can see it on a clear day.  We wanted to do a day tour to  the south, but the tours were full.  Oh well…I guess we’ll simply have to go back one of these days.

One of the most wonderful experience for us was crabbing.  You simply wade in oh about knee deep in to the water and you look down and grab the crab right out from the water. The locals were using fish nets.  We didn’t have one.  But we could simply grab them out of the water.  That was just awesome.  We contemplated grabbing a half a dozen or so for our dinner but decided against it. Had we fishing gear, I am sure that we could have done some fishing as well. But, we didn’t and that was fine enough.

We were also told that in late August,  Salmon would be teaming up the rivers.  There were no shortage of fishermen around prince rupert in many tributaries. But fishing in the rivers on Haida is illegal. I would have liked to have seen the salmon come up the stream.

Haida was a strange place. I could not really put a finger on it. And I am not sure that I grok it entirely.  If I had to guess, I think it is that this placed lacked an agenda.  Things were as they were because they were as they were.  There were no developments to speak of.  There were no expansions.  There were no bigger or better. People lived.  It’s a place where “rat race” could possibly be understood literally.  So, it may be a place to revisit again.  Regardless, I am glad that my kids and my sister were able to see this place that seem to offer nothing, but at the same time offer everything that we brought.

I was also glad that I had the opportunity to cross off the place that I so wanted to see from the previous summer.  It was crossed with a sense of accomplishment but not with a sense of victory which one often feels.  It was not a place like that nor was the trip about fulfulling my own sense of achievement.

For a moment, we lived.

Road Trip Part 3 (Brave New World)

One pleasure which we did not account on was my sister Susan’s dogs.  Maya and Susan became best of friends.  They are both dog people.  I will never understand that, but ok.  Maya talked about the dogs all the way home and then some.  Maya already made plans to visit the dogs in the near future, perhaps in December.

In the mean time, we had to make time.  We had over 4000 KM to drive and only three days to do it.  We really had to make time.  Of course, making time when making time is needed is when accidents happen.  Just outside Ellensburg (Washington?)  we blew a tire.  That was scarey!   Bang!  bang bang bang bang……. Initially, I had thought we hit something.  Then, as the sound was related to our speed, I knew we blew a tire.  Now what the hell are we going to do?  We quickly  pulled over and took a look.  Again, there were transport trucks all over us and it seemed to me a bit of miracle to have made it to the shoulder.  It wasn’t so bad.  Yes we blew a tire and the blown tire chewed up the panel around the wheel.  But, we were all ok and the inner tire was fine.  Now, where do we go?   We limped into Ellensburg and asked around.  It was Monday evening around 5:30 PM when we blew the tire.  It looked like we were stuck.  I hoped it was an easy fix and hoped that we would be mobile if not tonight, by early morning the next day.

Luck would have it, we found a shop.  Although they had already closed for the evening, they were willing to do the tire change.  That was something else.  I even tried to leave them a little tip and they would not have it.  So, with the tire fixed, we were able to shave another 250 km from our journey.  It was also difficult to pass by Yellowstone without stopping.  We just didn’t have any time.

The hardest part of the trip was this:  At this point,  I knew something was very wrong.  Although I wanted to  believe that we were just dealing with a hiccup, in my heart I knew we were dealing with something serious.  We were being called back. We were being called back!!! Alaska was out of the question.  Haida Gwaii was but a dream now.  But what could I do at this point?  Indira was already back in Toronto, and while I wanted to share this with the woman who should know, and god knows it was brimming over inside of me, I could not.  I didn’t have the heart to bring it up to Indira.  I wanted to save her even just a few days of anguish.  Taylor was riding shotgun for me, but I could not bring it up to Taylor either. So, I suffered in silence.  There was simply nothing else to do but drive and brood over the possibilities that were unfolding in front of us.  It seemed that each mile, I would wonder what the problem could be.  What it would mean. My head was racing a thousand miles for every mile driven.  Each mile seemed like an eternity. Are we dealing with leukemia?  What does that mean?  How will we deal with this?  Is this it?

I don’t really know how I did it.  It’s a blur; Walmart parking lots when too tired to drive, meals on the road, and even squeezed in an oil change in Walmart parking lot  to get to Grand Rapids. I recall that the appointment was on Aug 16th, 2012 at 10 AM.  We arrived in Grand Rapids at 3 AM that morning.  Indira drove down to meet us there at the Ronal McDonald house.  I fell into a troubled sleep out of sheer exhaustion for few hours before having to face what was to come.  I was hoping…

Following day, our lives once again changed.  When Dr. Sholler approached us with the devastating news, both Indira and I cried and cried.  Dr Sholler also cried with us…

Four weeks prior, we started our journey with renewed hope that Maya was going to beat neuroblastoma.  If you will, it was a new start. With DFMO therapy, we were very hopeful that may be, just may be we’d be back to some sense of normalcy.  We would get our lives back, and chalk up the past three years as an ordeal of a pediatric cancer family. Just a bad nightmare.  With one blood test, our hopes were crushed.     What I recall then is that MDS/AML is very “difficult”.  That is one way to put it. The only question at that point was whether MDS/AML was painful.   Even in the midst of our anguish, the gravity of the situation was not lost.  I did not want to lose Maya to neuroblastoma, which is … painful to say the least.  Perhaps, losing her through MDS/AML is a blessing in disguise.  A in AML stands for Acute.  It can’t be more succint.  The thought at that time was that we had few months.

And now, almost a year out from that fateful day, I wonder how we’ve made it another year.  What does this all mean?  For me, it seems that life is grizzly.  It can be unfathomably difficult at times.  I try to cope with meditation.  And  at times, it takes many hours a day just to stay afloat.  Most of the time, I can deal with it.   Yes, there are those who have it tougher.  But that does not negate or diminish our suffering.

In one of my first blog I wrote that sadness had not soaked through the fabric of our lives.  After three plus years, it has.  It has soaked through and through.  It is sad.  And it’s grim. There are no bright shining smiles you see on commercials in reality.  And if We (the cancer families) put on the brave face, it’s a fascade.  Perhaps foremostly we are trying to fool ourselves.

We live frozen in time deathly afraid to do anything but to focus completely on Maya.  At the same time, we are forced to do something, anything because the alternative is devastating.   We live in fear.  It’s doubly hard when children die from either neuroblastoma, or neuroblastoma and MDS, as was the case in the past couple of weeks.You all have asked us.  “Don’t know how you guys do it.  Can’t even imagine what it’s like” It’s been unbearably difficult for all of us.  Each of us have tried to find some ways to deal with it; sometimes well, other times, not so well.   There are cracks on top of cracks in our lives.  When we are able, we somehow patch it and move one more step. This is the cancer world.  We still have hope whatever the odds may be.   For many, at some point, even hope dies…  But this is how it is.

In the midst of this nightmare, you can only focus on the little miracles that present themselves.  These little miracles provide you with just enough oxygen to carry on.  Combing my daughter’s hair, oh what pleasure that is.  Watching Youtube videos with Maya on my lap after the evening bath.  Scratching her back because daddy is the only one who can do it right.  The little pot belly Maya is developing.   The way Maya always skips when she walks. Or seeing her in pink helmet riding with dad.  These are the miracles from  a little girl who is so broken.  And her belly laugh…

And out of this madness,we somehow carry on.  What else is there to do? Get up!  At times, it takes herculean effort  And squeeze in more life! Squeeze in more life… In the midst of the turmoil, the anguish, the anger and being lost, I try to hold on to what Viktor Frenkel, a holocaust survivor and a psychiatrist who wrote -again, sometimes well, and other times not so well – :

And there were always choices to make. Every day, every hour, offered the opportunity to make a decision, a decision which determined whether you would or would not submit to those powers which threatened to rob you of your very self, your inner freedom; which  determined whether or not you would become the plaything of circumstance, renouncing freedom and dignity to become molded into the form of the typical inmate.

Seen from this point of view, the mental reactions of the inmates of a concentration camp must seem more to us than the mere expression of certain physical and sociological conditions.  Even though conditions such as lack of sleep, insufficient food and various mental stresses may suggest that the inmates were bound to react in certain ways, in the final analysis it becomes clear that the sort of person the prisoner became was the result of an inner decision, and not the result of camp infleunces alone.  Fundamentally, therefore, any man can, even under such circumstances, decide what shall become of him – mentally and spiritually.  He may retain his human dignity even in a concentration camp.  DOstoevski said once, “There is only one thing that I dread:  not to be worthy of my sufferings”.  These words frequently came to my mind after I became acquainted with those martyrs whose behavior in camp, whose suffering and death, bore witness to the fact that the last inner freedom can not be lost.  It can be said that they were worthy of their sufferings; the way they bore their suffering was a genuine inner achievement.  It is this spiritual freedom – which can not be taken away – that makes life meaningful and purposeful.