We might be Giants

It’s been a little over two weeks since we’ve come home. Maya has been ecstatic, as have we all. The past six months have been extraordinary in unanticipated ways. Perhaps it’s more a commentary on me than anything else. Millions of little voices in my head are swirling aroud the recent events to steep them as palatable memories.  I am still trying togrok them. These events have already had a strong influence on my outlook already.  I suspect it will have additional influence in my life still to come.

To sweep all these ideas into a coherent theme would be to say that we are … not what we appear to be.   To state that we are simple beings made of “dirt” is to miss the essence of who we are.  Would anyone call a Renoir or Picasso but a collection of oil pigments? Of course, we are animals on an offshoot arm of a nondescript spiral galaxy.  But to simply see us as a gooey mess composed of mostly water, amino acids and some trace elements is far from who we are.   There are those of us who try really hard to be no more than a gooey mess, but even then, we have the habbit of regularly overcoming our gooeyness. For example, overcoming addictions or turning the other cheek, say from a holocaust survivor.

Although we may be made of “dirt” and be hopeless beyond imaginations, We are giants.   The universe has conspired for 14 billion years to create something that can only be seen as an utter marvel beyond words.  Or to put it in another way, the simple fact of existence,  against all odds that could have extinguished us,  makes us extraordinary. This remarkable lesson was taught to me by Maya.

For the past four years, both Indira and I were thrown in the chaos that is pediatric cancer.  Dealing with Maya’s illness has been the most difficult event that we have endured.  The complexity and the dimensions associated with pediatric cancer was not something which we expected nor was it something which one could prepare for.   Simply put, all we could do was hang on for dear life;  Maya’s life and so we did!

There were times when Indira and I both fell apart completely, although thankfully, not at the same time. How does one look after a severely sick child when just getting out of bed takes a herculian effort?  How does one make sense of the disease or the therapy?  How does one make decisions on which therapy to try next when the main stream therapy failed? Why can’t the doctors fix our daughter? Why a second cancer, as if one was not severe enough? How does one deal with the familiar stresses?  Work stresses? Financial stresses?  All these stresses and more were being piled on regularly, while we saw our friends falling around us.   What a nightmare. And if that was not enough, Maya had complications after complications and set back after set back.  How do we keep Maya alive?

K: “How are you Maya?”

M: “I’m good dad-dee”.

These words were the begining sentence in many lessons for me. Even when things were tough, even when we thought that we were finally at the end, when hope started to fade, Maya always answered back that she was good.  This shocking fortitude from a little girl has always surprised me.  She inherently understood how precious life is.   Indeed, it is precious.  It is so precious that all the pain and suffering she had had in her very short life was worth it.   It is so precious that the long term damages, such as her hearing and infertility and organ damages, and …, and… and are worth it.   The damages never got to Maya, the person, a little girl who loved her life, who constantly insisted on engaging the world.

All the possibilities available for Maya are still possibilities for us and for Maya.   Yes it was worth it. And when we had put her through so much, and cost her so much, shall we waste them away?  Should we indulge in anger? Should we lament the losses?  Should we squable over how the doctors could have saved this or that?  You bet your life we won’t!  Every scar that shows on her body is the reminant of a resolve that changed an almost certain outcome of a very sick child.  If these scars invoke an emotional response in anyone, let it be the that of wonder, inspiration and amazement. At the end of the day, it has not taken away from that which is Maya.  There were days when these scars used to make me sad, helpless,, angry, out of control. Why are they doing this to my precious precious daughter?  Not anymore, not today.    Although we will never know what is in store for us tomorrow, everything that we’ve paid for with despair, anguish, horror, endless nights of worries were worth it.   The cost was worth it because Maya can walk to Yogurties, Maya is now a dog owner,  and Maya went  to see the movies that she so wanted to see.  And that is enough.  Every moment hence forth is a gift to be treasured.  Every moment we have with Maya was the result of a slugfest with cancer.  And it took miracles to get us here.

Maya is a giant and she opened my eyes with those simple words. “I am good Dad-dee” Four years old… and a meistro in her own right.  Some fours years later still,  with countless scars, with tubes still coming out of her body, recovering from the devastating effects of chemo,  Maya still has twinkles in her eyes.  She is learning to walk again, happily. She is well and she has her life back.  Maya is a giant not only because she has faced unbelievable challenges and came through on the other side, but because she maintained her “self”, who can laugh, love, and carry on with her life!

K: “How are you Pookie-doo?”

M: “I’m good dad-dee”.

She says that with a twinkle in her eyes.  She never lost it, although for a time recently, it did “go under”.  It didn’t take long for me to figure out that what I saw in Maya was  not particular to Maya, but rather, it is something that is inherent in who We are.  It is not good enough merely to get through an ordeal.  Anyone can do that as time will push us forwards.  Regardless of the fact that one may have endured a devestating trauma of sort,  and one may coddle the trauma for a period of time, when the time passes and the pain stops,  it is necessary to regain our humanity, compassion, love,  inspiration, our joi de vivre.   This resilience is what makes us human, what makes us giants.  I learned that from an eight year old child.

Even as we live in an ever isolating world, we can never forget that what makes us Human, what gives meaning in our lives, are not the things that we surround ourselves with.  Rather, it’s being able to stand “naked” and offer ourselves to each other in however small an act it might be.  At times, even a minor act of kindess such as holding someone’s hand in their need could be a paramount undertaking.   For example, could you offer your hand to those who oppressed you?  But it is exactly such an act that gives us the ultimate strength and the unbelievable sense of lightness of being.

In these past few months, I was overwhelmed by the support we’ve received.  Even though we live in an impersonal world where it is so easy to lose track of our humanity, we found ourselves on the receiving end of love and support.  At times, it’s been hard to be on the receiving end.  Silly pride. We’ve been surprised, humbled, honoured… Our faith in humanity has never been stronger.  We also hope that you, our friends, family and community, were given the opportunity to exercise your humanity, your compassion and your faith.  Of course, not for a moment would we consider that we are free from debt.   There is a mountain of debt which we are all too happy to spend the rest of our lives repaying back.

Thank you, friends, teachers, principals, neighbors, colleagues.   You’ve really made a difference in our lives.  We hope to live fulfilled and in gratitude for our precious precious lives.  Thank you for this day.  Today, we are thankful for the joy that is Maya.  What a gift!

Happiness

The past five months have been filled with challenges.  Obviously, our primary challenge was trying to keep our daughter alive.   We were lucky to have overcome our odds and finally bring her home this weekend.  There are so many things I wanted to share with you, but I am afraid all could be considered rather uneventful and possibly boring.  Well… a boring post may not be so bad.

I flew down to Memphis, this past weekend of May 16, 2014. I think the thing that I’ve noticed the most this time around was the visible twinkle in Maya’s eyes.  She was very very excited to go back home.  All she could do was barely contain her self and count down the hours.   And even during the long clinic days, Maya was up beat.  The old Maya, the Maya who used to be bubbly, full of energy, who’d run like the wind down the halls of hospitals seemed to be back. To see Maya come back around was really good to see.

Maya and Indira flew back on May 17th, while I started the 1000 mile drive back home.  A couple of blinks of my eyes and we found ourselves home in Toronto.  We had a very small celebration at home.  Maya’s cousins showed up to celebrate her return.   For Indira and I, this little celebration marked a monumental milestone in our lives, one which we were not sure that we could attain.

So, how did we get here?  Here are some remarkable events from the past 6 – 8 months:

  • Deciding that we are now at the end of the road.  We need to follow through with another Bone Marrow Transplant.   Recall, the first BMT almost killed Maya.  We did have an offer for another BMT from Sick Kids.  However, we didn’t feel comfortable with it for obvious reasons.  How many scenarios have I run in my head, trying to optimize the amount of time we might have with Maya?
  • Acceptance to St. Jude. It took well over a year in the making, but somehow, against all the odds, we got accepted.  It was dicey to say the least.  In a course of a couple of weeks, we were on/off at least two times, each time the hope of keeping Maya’s life would evaporate with a word or two.  The stress at that time was unbearable.
  • Initial consultation trying to get a sense of who St. Jude was and what they were offering. Coming down to discuss the therapy was the deal clencher for me.  You can “feel” it in the air.  But we were also not under any disallusions.  We were very aware that there was a chance, actually a very good chance that we would not all come home together.
  • DAY-0 and the stem cell infusion.  Just 10 ml of the stuff (my stem cells) could either give my daughter alive or could kill her.  I recall seeing my own stem cells coursing into her and being overcome with emotions.  I recall thinking, it is a life saver, or it could might as well be sewer water.
  • Complications.  The days and days of pain, blood, and the never ending diapers.  We could never imagine what hemorrghic Colits would mean for us. I will never forget watching AST/ALT and creatinine creep up on that day in February.  Both Indira and I were willing to give Maya one of our Kidney.  If it had come down to that, it would have been my kidney as Maya would not have to deal with organ rejection, as her immune system was becoming my immune system.  May it protect Maya for the rest of her life!
  • Maya’s questioning why these horrible things were happening to her.
  • Maya’s resolve to walk…
  • Neuroblastoma scare.
  • Miso soups
  • steroid driven rages
  • pills after pills after pills.

We fought hard.  Somehow, against all the odds, we got home.  We all came home.  In hind sight, I wonder how much of our fights mattered. The important fact though  is that we made the right decision in taking Maya to St. Jude.  The therapy worked and Maya is still here with us.

For the first time in the past six months and largely for the past four years, the predominant thought for Indira and I is not about cancer. Our lives revolved around cancer and what’s required to give Maya a fighting chance.  It’s hard to know just what to do now.  Live?  Yes, of course, but… ah… how do you do that?  I don’t know.  Need to figure that out…. And I’m not talking about, just running to/from work/school etc.

It has been strange the last couple of days.

  1. We have not all sat at home in the past six months.  It was vaguely familiar and completely caught me off guard. Oh yeah… that’s what it feels like…
  2. Having Maya just sit on my lap at our local fire works for the May 24 weekend.  Maya along with our greatest neighbors walk to the Lessard park to watch the fireworks.  There can be very few events that could have topped this moment.
  3. Having Maya’s friend drop by at home.  Hearing them play with their silly girl things is music in my ears.
  4. Watching Spiderman 2 with Taylor and Maya.  I don’t remember a darn thing about the movie.  But it was great!

It’s hard to articulate what we’re feeling.  There is a sense of surrealism that we can’t seem to shake so readily.  Is this real?  Can we live normally now?  Is this possible? Strange feeling of comfort and familiarity in the cancer world is not something which we’re ready let go.   Can we dare relax?  Not with Neuroblastoma.  Not stage 4.  But all in good time, I guess.

A while back, a very close friend wrote that she did not need the hardship of pediatric cancer in their life to know what was important in life.  But I wonder if we (Indira and I) would have clued in on the absolute preciousness of life without the real fear of losing it.  I wonder if we would truely come to understand the power we have; that when things truely matter, you will find the strength. Or that human compassion and love truly represents who we are… Can we ever look at the world in the same light as before?  Would we want to?  Things have changed for me in the past six months.  It’s hard to articulate how, but things have changed.  And I guess in some ways, a part of me died in Memphis.  It was a good trade off.

We are looking forward to a wonderful summer where Maya can readjust to her very own surroundings and home. She deserves it and there isn’t a parent who would be happier than us fulfilling her wishes this summer.   Any ways, we are talking now about going to look at Malti-poo puppies.  Maya decided on a Maltipoo because one of Maya’s friend is allergic to dogs and wanted to get a dog that didn’t cause an allergic reaction.

We are looking forward to “normal” things in the near future.  We hope to bring you boring entries, hopefully for a long while.

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….