As you all know, we’ve been wrapped up in the cancer world forever it seems. These years have been spent with little victories, a whole lot of sleepless nights, and bare knuckle rounds with cancer. We did not escape unscathed. No one does. We are not one of those families that you see in commercials, all smiles. And while we celebrated a major win in being in remission from two cancers – a miracle in its own right – cancer does not let lose it’s strangle hold so easily.

The Pulmonary Function Test (PFT) is a metric that measures one’s lung function. Maya’s lung function has decreased significantly over the past few months. Her lung function is roughly the third of what it should be. It was thought that it could be pulmonary fibrosis or Bronchiolitis Obliteran. Pulmonary Fibrosis occurs due to some chemo, effectively turning the lungs into massive scar tissue. The scarring is not reversible and there is no treatment for Pulmonary Fibrosis. Bronchiolitis Obliteran is similar to PF in that it is also a non reversible disease once fibrosis sets in. It is associated with GvHD. The initial response to therapy has a significant impact on the over all survival rate. Like all the other odds which we’ve been dealing with, the survival rate for either PF, or BO are dismal.

When Maya’s lung function was determined to have deteriorated, the recommendation was to perform a lung biopsy. Although we have had many biopsies, we declined this time around. Performing the biopsy would not have been instructive on what we could do. Additionally, it would have meant additional pain and suffering for Maya. Pulmonary Fibrosis has no known therapy or drug, so if Maya developed PF, there is nothing we can do. If it was Bronchiolitis Obliterans, we can treat with high dose pulse steroids. If we are dealing with Bronchiolitis Obliterans, how she responds initially, like most therapies we’ve had, will shed some light on the prognosis.

In the mean time, we are again hyper-vigilant. We have noticed that Maya’s loss of appetite, one of the symptoms of PF. We have noticed a lot of little dry coughs. Each little cough is a dagger jabbing into our hearts. How will we get through this complication?  The wild horses are running wild again.  Is this how the story ends?

We have today and we enjoy this day with the greatest gift in our lives.  We are thankful for this day…

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!


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?”


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…


April In Memphis

It’s been a few weeks since we’ve posted anything on our blog.  Main reason has been that Indira started a page on Facebook.  The link to the facebook page is here.  So, what’s been happening with the Kim family?  Not much!    In the past month, we’ve noted our four years with pediatric cancer.   We have now spent more than half of Maya’s life fighting for her life.    There are many emotions that run through, when I think about such a thing.

As many of you know, we’ve had some bumpy rides along the four years.  Just looking through the amassed blog entries speaks volumes of our tribulations.  But, Maya is alive and getting better.  And at this point, one of the greateset emotions that we have is that of gratitude.   Grateful that Maya is alive.  Grateful that there are therapies out there for us.  Grateful that we were able to access the therapies.  Grateful for the support from everyone around us.   It isn’t that the ride was smooth.  You all know that.  As bumpy as it has been, Maya is still with us.  That is enough.

So, why is this therapy been so lengthy?  Let me put down what we underwent.   The therapy was eradication of Maya’s blood system, replacing it with My (Kirby) system  (Non myeloabalative Haplo transplant with NK cells)   Why?

  • Using Maya’s own stem cells (autologous) was not a good idea because there was a predisposition for cancer.
  • There is a higher chance of relapse because, cancer is part of her body.

Therefore, using someone else’s immune system was the way to go.  We also want someone elses immune system because it can recognize the cancer cells as being foreign and will kill it.  Of course, the ideal is a complete match, but there aren’t too many Ecuadorian/Korean mixes in the world that have the same MHC typing with KIR mismatch.  Thank goodness that a haplo match could be used.  If this therapy was not available, Maya would not have gotten a transplant and she would have succumbed to MDS, sooner or later.

So, I (Kirby) was the donor.  Maya is half like me, so that’s good. But different enough that my immune system can recognize her cancer cells as being foreign. If there are cancer stem cells still in her body, my immune system will recognize it and will attack it.   The problem is, my cells do not differentiate between her cancer cells and her body.  This effect is known as Graft Vs Host Effect.  If the new immune system attacks her body, it’s a Graft VS. Host Disease (GVHD).  If severe enough, it’s fatal.  But that rarely happens anymore.  What does occur is a chronic GVHD, where there is a chronic war between the body and the immune system.  While not fatal, it can be substantial.

So, how does one deal with that?  You deal with it by slowly bringing the immune system back, through the use of immune suppressors and steroids.  In particular, the naive T-cells are killed off for the first few months so that both the body and the immune system can readjust.   The naive T-cells migrate to thymus where they are “taught” to fight off a specific type of infection.  Once these naive T-cells are “configured” to fight off a specific infection, it no longer will be triggered to attack Maya’s body.   We do see a mild forms of GVHD in Maya.  The disease presents as skin issues, inflamations and joint issues.    Maya definitely had skin problems with lots of peeling.  But these are getting better.  When my stem cells were injected into Maya, the T-cells were reduced but not completely removed.  For some unknown reason, residual amount of T-cells are required in the transplant.  But the numbers of the T-cells were reduced by a 1000 fold.

GVHD can arise anytime within the first year or so. However, longer one goes, less likelihood that GVHD will arise. Since the transplant, we’ve spent the time monitoring Maya for GVHD.  And to a large degree, the physicians here were “tweaking” her immune system.  For example, use Immune suppressor (MMF) That was a mistake for Maya.  Maya had a severe toxicity from it.   Ironically enough, initially Maya’s protocol included serolimus (AKA rapamycin)  However, at the last minute, the doctors changed it to MMF because MMF was less toxic.  And use steroids to suppress the immune system.

So, at a higher level, it’s not too complicated.  But in implimentation, it’s something else.  I think listing the drugs will give you some idea on what we are dealing with:

  1. Ursodial (For H-VOD)
  2. Gabapentine (Neuropathic Pain)
  3. Voriconozol.  (Anti fungal)
  4. Acyclovir (HHV6 and HMV, antiviral)
  5. Gancyclovir (BK, antiviral)
  6. antibiotics of different flavours
  7. Benedryl (For Neuropathic pain, nausea)
  8. PPI  Proton Pump Inhibitor.  For Acid reflux
  9. Sucralfate (Acid Reflux)
  10. Fentanyl (Pain)
  11. Morphine (Pain)
  12. pancrelilpase (For digestion)

Well, the list is from my recall.  I’m sure I’ve missed a few.

Any ways, Maya is doing well.  After all these years, we’re coming to trust what we see in Maya. We know when Maya is well and when she is not.  And for the past few weeks, Maya has been eating like crazy.  Often, she’ll nibble at her dinner for 2 – 3 hours.  That says volumes.  If one is not well, food is the last thing one thinks about.  So, we are happy to see Maya eat.

We are all weary from being away from home.  But it’s only few more weeks.  Hopefully we’ll be home for early May.  And we look forward to a great Summer for Maya and us.

Oh, Maya and I have been talking about how she has my immune system.  We have explained to her that her blood is that of a 48 year old man; namely me.  We also explained to her that her blood is male.   Today, she was seen explaining to Steve, her uncle that she had the DNA of a 48 year old man.  It’s all true!

And lastly, here is a little bon mot for you.  Suppose in twenty years time, there was a homicide.  A man is found dead.  There is no evidence whatsoever at the crime scene.  However, there was a single drop of blood left at the crime scene.  It was mine (Kirby) or was it?  What happens to the reasonable doubt aspect of legality?  Lawyers, discuss!

Alive and Kicking

It’s hard to believe that four years ago, on a Saturday afternoon, oh around 2:30 PM, our lives changed forever.  In four years, Maya has gone through unimaginable things.  We as parents have watched our daughter go through unspeakable events.  There were more than  a couple of occassions, when we were afraid for our daughter’s life.

Four years.   In that time, we’ve watched our friends fall.  But, against all odds, we’re still here.   Roughly put, Maya is beating something like 1 / 100,000,000 odds by surviving this long.  Getting neuroblastoma is approx 1/100,000 odds in children.  Getting a secondary malignancy is put at 2 – 3%.  This type of figure puts Maya at 1 / 10M children.  Of these 2 – 3%, not all of them get MDS, as Maya has.  If we say 1 / 10 children who get MDS out of those who get secondary malignancies, we’re 1 / 100 M.   Crazy figures, even if we are off by some margin.

We are still celebrating being here, with Maya.  And right now, Maya is upset.  She does not like Memphis.  She does not like the hospital.  She does not like the Doctors or nurses.  She does not like being stuck in isolation.  Most of all, she does not want to be special.  She just wants to be a normal kid.

While she may be disgruntled and cantankerous, we can’t blame her for wanting to be just a normal little girl.  While it may not be so easy for her, we are glad that we still have the chance at having a normal life for Maya.   This precious little child still has the opportunity to be a normal little girl.

So today, I wanted to say thank you to all those who have watched over us.   While we did not choose to have such a devastating illness in our lives, and while it has not been the easiest of roads to travel,  nevertheless, we celebrate Maya’s life.  In such a short time, she has made quite an impact in people’s lives.  Her journey is both a story of her indomitable spirit but equally as well, a story about human kindness and compassion in all of you.

Today especially, we shall also remember all the children that have fought this tough tough battle.

From the Frying pan into the…

I returned to Toronto on March 10th.  At least one of us has to work.  Already, we’ve both taken a significant amount of time away from work because of our circumstances.  It’s never easy to leave your sick child behind.  But, we do what we must.  Thankfully, Indira’s mom came down for a week to help out.  Last friday, with my brother inlaw we drove down to memphis together.  Since I am back to work, we needed someone to help Indira.  Having a car down there also helped quite a bit.  Surprisingly, Steve has been quite the help.  So, a big thank you to Steve.

While it was nice to be back  – and being back home made me feel displaced not belonging neither here in Toronto or there in Memphis – it turned out to be one of the worst days of our lives.   On sunday during rounds, Dr Shook pulled us out and told us that  they found neuroblastoma cells in Maya’s bone marrow.  It was partially differentiated, but still it looked like ganglioblastoma, which means it is malignant.   It was like being hit by a mac truck.   Oh dear god.  We’ve finally run out of room was our first thought.   What we were told were:

  • Roughly 10% of the marrow contained ganglioblastoma.
  • We can’t draw any conclusions based on a single view of the marrow.
  • We know that a BMA performed some 50 days or so did not have any evidence of neuroblastoma.
  • Good news is that there was no myelodisplastic cells.  In other words, we are cured of MDS.
  • Maya is not strong enough to get additional chemo.  For that matter, it was suggested that our time with chemo has come to an end as well.  After all, after four years of chemo therapy, it has not resolved Maya’s disease.

Oh no.  What do we do now?  Both Indira and I had a good cry.  And over the course of the weekend in the midst of dealing with our own grief, we’ve had some pretty sobering discussions.  We are close, but it’s not over yet!

Firstly, the doctors from St Jude were also shocked.  They were also scrambling to determine the next steps.  Our principle investigator Dr. Triplett reached out to the solid tumor team to gain some insights into what the next course of actions could look like.   Dot the I and cross the T’s is what was recommended.  In other words, we need to determine what the disease status is.

  • Look at the catecholamine level in Maya’s urin.  Catecholamine level correlates with neuroblastoma.  Although not fail proof, for most, it provides the disease burden metrics.
  • Let’s follow up with MIBG and CT to get a better look at the disease status.
  • Maya would likely not qualify for any therapy in the solid tumor because she has a secondary malignancy. However, given that Maya technically does not have MDS now, Dr Triplett would make a strong case for additional therapy.  That would mean NK cells + antibody.  So, not chemo per se.

In the mean time, steroid use was stepped down aggressively.  Since steroids suppress immune response, we wanted to have her immune cells come back and start taking care of this new progression. Why is neuroblastoma acting up?  There were two thoughts.  First conjecture is that since we’ve removed Maya’s immune system, neuroblastoma was progressing unchecked. Second idea is that azacitadine used for MDS had some efficacy against neuroblastoma.  Of course, these were all conjectures.

On our side,  Indira and I discussed and agreed that if St Jude can not offer us anything that we could not access in Canada, we would take Maya home.  If we’ve reached the end of the runway, we’ve reached the end.  And I promised Indira that Maya will not suffer as much as some neuroblastoma children have in their last days.  In her passing, Tayah Fairweather showed us how to minimize the suffering.   Tayah… thank you.

The weekend passed and in the midst of these troublesome times, we were also discharged.  Currently, there was no reason to keep Maya in isolation.  And with that, we were discharged.  Keep tomorrows worries for tomorrow.  Both Indira, Steve and I enjoyed bringing Maya to the Target house.  It’s so nice to see Maya sit up on the couch and simply watch T.V or play a game. So much better than being infirmed.

And yesterday finally, we had our MIBG scan.  The results were puzzling to us.  Maya did not light up at all.  In all the MIBG scans in toronto, because Maya still has a lot of bulky disease, she lit up like a Cristmas tree.  Here, there was no uptake of the Iodine isotope.  In addition, catecholamine level was normal.

At this point, the thought is that during BMA, we hit an old section that had some residual disease that’s been hanging around.  Of course, there is no way to tell.  So, the scans are being sent to Toronto so that the team here can take a look and make an assessment.  The only way to tell is where we are with the next BMA in 2  -3 weeks from now.

These wild swings are not atypical for us.  We’ve been here before. But it’s never easy.  With a sentence, we were cast down into a the depth of despair. And with a sentence, we are able to breath again.  Such are the lives of a pediatric cancer family.  Regardless of what happens in two weeks time,  two months time, or two decades time, what I can tell you is that there is no joy like being Maya’s parents.  She, along with Taylor are like the sun, the moon, the stars and everything for us.   As Sharon Richard, who lost her son to neuroblastoma said,  the cost of losing her child was worth having him in their lives.  We feel that way too.   Precious is this life we take for granted.  While I can not say that I am thankful for being in our predicament, I am thankful to get to see how wonderful life is to have our children in our lives.

Wild Horses…

It’s been… over two weeks, since the last update. We are at T+33 today. Where has the time gone?  Ah.. yes, the time warp.  What a whirl wind.  How shall I describe what the past two weeks have been like?  Perhaps we start with the conversation I had with Maya just an hour ago.

Maya wants to go get a slushy at the local store by our house.  Yes, Maya.  As soon as we get home, we can walk over to the store and get one.  And it’s good that you are practicing walking.  Because we’ll need to walk there.  Yes Maya… We can go to “Simply Yummy’s”.  I will buy you two snow cones if you want them.  After all, it’s only fair.  Yes, we’ll invite Bridget and Marley.   Yes, we can go to Yoghurties and get ice cream there as well.   And we can go to the movies.  I can have a vegetarian pizza and you can have the red slushy, with a hot dog, cotton candy and tiny-tims donut.  I promise.   Whatever you want to do, daddy promises to do them with you.

Maya walked 11 laps in the BMT unit just to prove to herself that she can walk to Yoghurties.  She wants to run like the wind, just like her older brother Taylor.  She laments the losses of her motor functions because she’s been bed ridden for the past … 5 weeks.  Five hard hard weeks.  Although… god bless the children.  They don’t know what difficulties mean.

How fragile is this vessel, the human body?  In days, we’ve watched a robust girl become wistful, in a significant amount of pain and passing parts of her own colon in a never ending diarrhea. The wild horses must be quelled repeatedly…. again and again and again.  How can she live passing so much of her own intestine out?  In the face of this horror, each time,  we look to the doctors to convince us once again and again that what we are seeing is not out of the ordinary. It is truly not as bad as it looks.  Yes, the doctors are not taking the hemorraghic colitis lightly, but it is something they are not gravely concerned with.

In seeing our daughter like this makes us wonder.  What have we done?  How can we do this to her, knowing fully well she may not survive; that we may have inadvertantly shortened her life.   The wild horses run amok.

Let the wild wild horses run.  But the eight year old girl who’s been constantly febrile, with hemorraghic colitis is not talking about the difficulties.  She is talking about what she wants to do.  She wants “her life back”.   Her parents, although very aware of the difficulties, are not dwelling in the horrors that is cancer.  We are focusing on getting Maya better.  We are happy to change the pull-ups repeatedly. We’ve gone through 800 + gloves in the past few weeks changing diapers.   Maya is alive and we take great comfort in looking after a sick child.  Maya is still with us, motivated to get her life back.

Maya is eating although she can not taste the food in ways that she did before.  It is  a gift from the chemo.  But she is eating because she does not want to be discharged with the personal TPN backpack.  That would mean that she’s fed intravenously. She won’t have it. She made a herculian effort to swallow pills because she did not want the nose-tube back in.  She insisted on walking a mile (11 laps) because she wants to walk to yoghurties  for icecream.   She wants to go to Canada’s wonderland, go to disney in Orlando with her cousins and visit her aunt’s dogs in Vancouver.  And she can’t wait to be discharged so that she can go see the Lego Movie and the Muppet Movie.  There are just too many things to do for us to dwell in what it has cost us. And what has it cost us?  While we don’t know what the long term effects are, for now, it’s nothing which we can’t accept.  I can look at all the puncture marks on my little childs’ body.  They tell a story; the nephrectomy, the pleural effusion puncture mark, unending bone marrow biopsy marks, entry points for double lumin catheters, femoral catheter.  The scans add another dimension to this story  as well.   It’s OK. We accept the consequences on our daughter’s behalf.

The seed that is the essence of our being is not the meat that we slog around day in and day out.  It is much more than that.  It is much more stronger than that.  It allows us to survive difficulties.  It allows us to put one more step ahead of us, when we think there is nothing left.  It allows us to take one more breath when it counts. But above and beyond that, it allows us to smile again.  Our heart is not filled with grief and bitterness on what we have lost.  Not now. It is filled with love and gratitude; Love for our extraordinary daughter, and gratitude towards everyone who helped us, some extraordinary doctors, family, friends, our community.

And we have much to be thankful for.  There are infinite possible futures out there for Maya.  So far,  the futures are still alive and possible for our little girl even though she’s already amassed significant cracks on her “frame“.  Perhaps that’s why she is so loved.

Right now, we’ve gotten over the most critical part of the therapy. We wait for Maya to recover.  We welcome the boredom.   So, let the wild horses run.  But the wild horse this time are not the fearful thoughts, but a spirited little girl pushing through yet another epic challenge in her life.  Because, she is still capable of running wild.

Annie, Get Your Gun

As you know, I’ve been using the Russian roulette metaphor, which I think it rather appropriate.  In this entry, I thought I would provide an example of  what we are dealing with in it’s gory detail.   And in doing so, I must also put a discretionary warning here.  This entry is not pretty. If you are sensitive in nature, I do not recommend that you read on.

I know it’s a bit of a bait.  After all, I have roused your curiosity.  But, I don’t know how else to proceed.  Indira and I have discussed whether we should post such an entry.  One of our goals is to show what it is like to deal with paediatric cancer.   Part of us starting this blog was to have online some information that could be beneficial to others.

Additionally, I also want to highlight the difference between the commercial side of cancer and reality.  There is rather a large discrepancy.  I understand why commercials are necessary.  It helps with funding as well as create a perception that everything possible is being done to help those who develop cancer.  It also makes those who decide to support cancer causes feel good about themselves.  There is nothing wrong with that.  And if that is the end goal for some, that’s great on it’s own right.  We would not be as far as we are without the funding from those who have so kindly decided to help.  James Fund is but one of the great organizations that people can donate their funds to.  We have a great amount of respect for the Birrell family who decided to take up the cause after they lost their son.

In commercials, there are smiling children (and adults) who are triumphant in their “victory” with display of gratitude for those who help beat the disease. Of course, the numbers do indicate that there are more survivors. But truthfully, it’s somewhat misleading.  There hasn’t been any signficant advances in cancer.  Advances in paediatric cancer is almost non existent. WHO expects the rate of cancer to double by the year 2020.  This figure should be of significant concern.  One does not need to look at the stats.  We all know and lost friends and families.  That wasn’t the case some thirty odd years ago. But this post is not about the politics and/or beauracracy.  This is about what it’s like to deal with cancer in an intimate detail.

And lastly, as you know we are in Memphis TN, at St. Judes.  St. Judes is probably the best hospital that we’ve been to.  One of the things that is most impressive about St. Judes is the recognition that paediatric cancer affects the entire family and they have made a significant effort in ensuring that the family is integrated in the treatment.  It is also free for those who are accepted. So, I must also state that what I am stating here is not about a short coming of this particular hospital. Rather, if I had anything to say, I would say that St Jude is a wonderful hospital.  And given the serious nature of Mayas’ disease, I don’t think we could be at a better facility.  I believe without a doubt that our odds are better here than anywhere else we’ve been to so far.

Fasten your seat belt. It will be bumpy.

Staring at T+2, things turned on a dime, as is often the case in cancer therapy.  The symptoms started to appear. The following two video, before and after,  really high lights how tough the therapy is.  These two videos are taken about 10 days apart. This therapy is not as toxic as the one we’ve had before.  We elected to participate in this therapy because it was not as rigorous as other type of transplant.

The symptoms were:

Fever started and continued for a week. Several times a day, Maya spiked a fever.  When she did, she would shiver violently and asked for warm blankets and hot packs.  Often, we could not give her the warmth that she so desparately needed because we did not want her to overheat.  Moreover, tylenol was held back because the source of the infection was not known.  We did not want to mask the symptoms in case it was some sort of bacterial or viral infection.  Without an immune system, if untreated, the infection could become septic very quickly.  After all, Maya right now is a perfect human petrie dish. So, the fevers were very stressful. What does she have? Is it bacterial, viral or fungal?

The only thing we can do is stand by her feeling completely helpless, running possible outcomes in our minds.  Helplessness is a constant companion of ours.  She is there like an uninvited guest overstaying her welcome.  At all times our thoughts jump to sepsis and losing her through complications of the transplant.  This happens to 2 – 3 % of children.  Is this how we lose her? is always at the forefront of our mind.  For a few days, we could not even offer her the comfort of warm blanket.  How do we console our daughter?  How do we explain why this is happening to her?


Diarrhea also started around the same time.  Maya was not able to control her bowl.  So we put pull-ups on her.  Again, the cause was not established.  Could be any one of causes, including the new cells that was infused into her.   Diarrhea got progressively worse and around T+5, we were changing her over 20 times a day.  This lasted for about 10 days. A diaper change consisted of:

  • pulling her pull-ups off.
  • clean using a vapor barrier creamed wipes.
  • apply soothing cream
  • put back the pull-ups
  • If she soiled her PJ, we have to change her as well.
  • If she leaked to the covers, entire bedding was changed.
  • Try for a sitz bath or even a shower.  Shower is tough, when Maya can’t stand on her two feet.
  • There were several hand washes in between these steps as well

Again, significant care is required because she is neutropenic and is very susceptable to infection.  The staff is available to help us, but can any parent relegate such tasks to someone else?  Well, I can’t do that.  We take care of our child.

To call Mayas void as diarreha is somewhat misleading. It’s more or less water with green tinge (bile) passing through.  Part of the reason why it was so runny is because the lining of her GI track was sloughing off.  Both Indira and I watched in muffled horror as we found strips of her intestine being passed into the diaper.  This is but one of the side effects of the chemo.  We dare not show our internal state to Maya. We dare not show our emotions even to each other.   We simply had to grin and bare it.  Each time we pull her diaper off, we put our “game face on” and keep our heart in check.  Doctors have seen this before and they assure us that it’s not unexpected and the lining will come back.  We can only find solace in the doctors words, although the gap between our mind and our heart is miles apart.

Nausea became also a constant companion as well.  For a few days, it was not controlled.  The sources of nausea could be:

  • The new cells comming in.  Watch carefully.
  • Infection
    • Apply antibiotics (Cefepime and Vancomycin).  Vanco causes redman syndrome for Maya. Therefore, apply Benedryl.
    • Apply Antiviral. (Acyclovir and Ganciclovir)
  • Side effects of chemo
    • The GI track sloughing off will make her nauseous.
    • Added Ativan, Bendryl, phenergan at different doses.  Also added Marinol for nausea as well.
    • Is she absorbing these drugs at all?  It is questionable since her GI track is under duress.
    • All we can do is wait for my cells to engraft and help with the repair process.

During these few days, Maya stopped eating all together.  Subsequently, a NG tube was added. Maya hates it. But at least we can introduce some nutrition as well as drugs.  It is questionable whether there is any absorbtion of drugs and nutrition, but nevertheless it is necessary.

Maya also had very thick mucus build up.  It built up around the NG tube that was running down her esophagus. The mucus is so thick that she can not swallow it. It also made her throw up.  The best way to deal with it is as Maya is throwing up, you grab it with your hand and try to pull it out.  It’s not pleasant for Maya, but infinitely satisfying to see it removed from her throat.  For an hour or so, Maya would find nominal relief from nausea.  We start over.

All of the antinausea (anti-emetic) drugs made Maya sleepy.  (Ativan and Phenergan are antiemetic as well as anxiety reducing drugs.  Benedryl is an antiemetic as well as anti-itching drug)

Oh, let’s not forget morphine and hydromorphone to control pain.  Both of these opiates makes Maya very itch.  You can see from the above video clip how itchy it gets.  If left to her own devices, Maya will scrach until she draws blood.   For the itchiness, Benedryl gives her some relieve.
Stressed Organ Function

As we’ve loaded Maya with all these drugs, inevitably, Maya’s liver and kidney objects.  We are hypersensitive to her liver function because of her history of VOD.  We are hypersensitive to her kidney function because Maya has only one kidney.  The left kidney was sacrificed to the god of Cancer in exchange for Maya’s life when we began our journey, some four years ago.

Watching the liver and kidney function is a daily exercise.  How is Maya’s liver?  AST/ALT/Bilirubin are treding up!.  Oh no…. please please stop!  Maya is kept dry to reduce her chance of developing VOD again.  Heparin and Ursodial are also given to Maya prophylactically.   Heparin is infused into her blood system, so no problem. However Ursodial is oral.  Is it being absorbed?  We question it as we see the liver enzymes continues its upward trend.  Oh no… Oh no…  We try to rationalize.  Although Maya is complaining of some stomache pain, clinically Maya does not look too bad.  Portal vein looks OK, no backflow of blood indicating blockage, and her weight is not increasing.  Doctors are not worried yet, although they are keeping a close eye on the liver.  We are defintely worried.  But, stiff upper lip is required here.  There is no sign that she is developing VOD yet.  Please please, stop rising!

Maya’s kidney was doing very well for the amount of drugs that’s floating in her system. That was a relief, until yesterday.  Suddenly, Maya’s creatinine / BUN started to rise very suddenly.  Oh no! Oh no!!!  Within 12 hours or so, creatinine spiked.

Time Creatinine
5 AM  0.83 Woops!  This is a bit high. Let’s do another test at 2 PM.
2 PM 1.43 OK. This is definitely not good. What’s going on? We need to hydrate Maya more.

Saline Bolus was given and her fluid level was increased.

8 PM 1.60 Oh My God!!!! it’s still going up.
12 PM 1.40 Thank god, it’s trending down!!!!

We feel helpless.  Again, the wild horses are out.  is this how we are going to lose her?  Did we shorten her life by agreeing to this therapy?  If so, she could have lived another year or more.  How did we find ourselves in such a situation?  How will we live without our little girl?  We have nothing but time to run these scenarios in our heads.

For about 8 hours or so, we were on the edge of an abyss.  Of course, the doctors are supportive, but no one can tell us why Maya’s kidney is stressed.  The doctors recommend hydration and Dopamine.   It is thought that the renal dosing of dopamine may be helpful, but not harmful.   We do a quick search on the renal dosing of dopamine.  Even in the scientific literature, the results are all over the place.  Some suggest it works, others suggest it does not work and is not recommended.  Others still suggest it can be harmful. Further, the literature is based on the adult setting and not for paediatrics.  Of course, we take our lead from the Doctors.   But, they are not certain how Maya will respond either.

Yes to additional hydration and let’s wait on the dopamine. If Maya’s kidney remain stressed, we will go head.  We sit and wait.  Please please please… Time is both our friend and our enemy.   Please let the hydration do it’s thing.  We need time for the kidney to respond to the additional hydration.  If the problem is not related to just being dry, we are eating away at the precious time to find the solution.  We envision the worst possible outcome.   OK.  I can give Maya my kidney.  Indira thinks the same.  Since Maya has my blood now, my kidney would be more compatible to Maya at this point.  We don’t want Maya to lose her kidney and that would be very bad.  But, losing her only kidney would not be as bad as losing the liver.  Losing a liver will mean the end.  We could recover from losing the kidney, if we can perform a transplant. We wonder if we just pulled the trigger with the bullet in the chamber. What do we do now?  Only thing to do is wait and watch the wild horses gallop away.  At midnight, labs were drawn again.  We wait another agonizing hour for the results to come back. It is 140.  A wave of relief washes over us.  140 is still very high. But the kidney is responding to the additional hydration.  Click…

We are by no means out of the woods yet.  And there will likely be additional scares in the near future.  But for now, we’ve side-steped a potential catastrophe.  We sigh a sigh of relief.  The adrenalyn running in my body can do it’s part and make me ache. Happily.     Both Indira and I push our heart back down only to notice that it is once again overflowing with love for our child.


[Colitis Feb 16, 20:30 update]

Well, that didn’t take that long.  This post was written on Feb 14th. In that time, we’ve run into another complication.  We are in the midst of our current drama.  We will update our current status as we move forward.

When Maya’s liver enzymes started to increase, an ultrasound was performed.  Maya did not enjoy that at all because her liver was slightly enlarged and it hurt to have the ultrasound device pushing down on her liver.  The team here was trying to assess whether we were dealing with VOD.  One of the findings of the study was that Maya’s colon was inflamed (Colitis).  On T+13, MMF was started. MMF is used as an immunosuppressant.  We don’t want my cells to come in too quickly for fear of GVHD.  While all her counts were coming in nicely, Maya had severe nausea as well as persistent diarrhea.  During Indira’s shift last night, she got a big surprise.  Diarrhea had significant amount of blood in it.   So, when I was called, I was somewhat prepared for it.  Yes, there was significant amount of blood in the diarrhea.  But Maya’s counts look good and I saw some clots.  So, no big worries yet.  After all, we have good platelets and that should mediate the bleeding in the colon.

This morning during the rounds, Dr. Leung felt that MMF was the culprit and stopped the infusion.  Further, in order to control the inflamation, Maya was started on infliximab.  Both MMF and Infliximab have wide ranging serious side effects.  What are we dealing with here?  There is a talk of performing a colonoscopy in the morning.  It is too early to determine what the issue is.  And each time we change the diaper, we put our game face on.  It’s not easy to see so much blood in the diaper.  Again, we have but time to look after our precious daughter.  Looking at the side effects of these two drugs is especially heart wrenching for Indira.

Me personally, I reason with myself.  The counts look good.  Maya looks…. OK clinically.  She just needs to heal from the assault.  Too early to  jump to any conclusion.  Perhaps I need to hear myself convincing myself.   Again, the wild horses are running amok.  We wait.



This account is but a sample of what we the paediatric cancer family deals with.  Of course, it’s not like this for all families.  It depends on the disease, the stage as well as the histology of the disease.  If you are stage 4 with unfavorable histology, while the details may vary, but helplessness, the fear are common.

Still, we are blessed to have Maya with us.  Yes, there are hardships.  But hardship is just hardship.  There are many things that are greater than hardship;  Love, devotion, compassion, inspiration and human spirit all rise above hardship.  These human traits are all still with us.

If  a time comes when we feel that it’s time to let go, we will do so.  Hesitantly, but nevertheless, we will let go.  It is not about fullfilling our needs at all cost. But that time has not yet come. There are still hopes and dreams for our little Maya.  Where does our road head?  It’s impossible to tell.  But our future is only friviolous meandering from our current position.  Thankfully, we have a sick child to attend to.

And thankfully, again, the ringing sound  in my ear was that of the hammer hitting an empty chamber.  Click!

Diary of a Wimpy Parent

Cancer world is a strange world. So far, we’ve been in active therapy for the majority of the past four years. Once you are here, you are submersed in it. It consumes all of your energy. Nothing exists outside it.

Social conventions often are stripped away from us. We live a subsistential life. How do we keep Maya alive takes most of our energy. There is little room for anything else. Battle fatigue is but one additional burden we carry on our already overloaded shoulders.  Could we ever go back to a place where we would post what I ate for breakfast on facebook? Not me.  But it would be nice to have such luxury of mind.

The most profound difficulty we deal with is the uncertainty from which we are asked to make decisions. How many times have we made decisions purely by the seat of our pants? How many times have we “pulled the trigger” not knowing if we are making the right decision?  How many times have we “pulled the trigger” knowing that longer we are at it, inevitably the bullet will fire? Is this it?  Have we finally run out of options? Of course, the gun is pointed at Maya. For example:

  • Will you perform the primary tumor bed irradiation? Irradiation will cause additional stress to an already inflamed liver and it may cause additional “complications”.
    • If you agree, you can proceed with the protocol.
    • If you do not agree, you will be off the protocol.  Maya’s chance of survival decreases.
  • Many of these therapies can cause secondary malignancies, such as lymphoma, MDS. We got MDS.
  • Would you like to participate in the Fenretinide clinical trial? It has been shown to work with maturing the neuroblastoma cells. No thank you. Why? Just did not feel right. We’ve learnt to trust our instinct.

We’ve made tough decisions not based on reason and rationale, but rather on gut instinct. In many cases, there isn’t sufficient data from which to make a sound decision. MDS for example is not a disease children get.  There are only handful of children who got it, most as the result of therapy. Most of them are dead. We make these decisions based on what literature we can find on a specific therapy or a study. In the case of MDS, there aren’t any.  Although we have learned quite a bit along our journey, we do not have the background to digest enough information to make the optimal decision. So, gut it is.

And why would you not trust the doctors in these matters? Very very few doctors will make recommendations. Why? I don’t know. However, I suspect some of the reasons are:

  • Unless you are at a larger and more reputable centers, oncologist themselves are not aware of the bleeding edge therapies. You are on your own.
  • There may also be egoes involved. “If we can’t help your child, no one can…”
  • Legal liability? I can’t tell you which therapy you should try because I may be sued.  No one gets fired for following protocol.

These are just my guesses. Whatever the reason may be, the outcome is the same. We are put into an impossible situation, expected to make life giving/taking decisions without the necessary tools or support. When we are forced into a situation where a decision is absolutely necessary, we try to understand to our best ability, we make a prayer, with our hearts in our throat, pull the trigger. The pressure that comes with such a decision is ineffable. It is overwhelming.

Given the circumstance which we find ourselves in,  after all that we’ve been through, we are often gob smacked when some doctors or nurses, typically a plebe, who insists on text book approach to Maya’s care.  They are too eager to flex their technical prowess. They have not yet understand that above anything else,  it is their compassion and empathy that will make them a good health care providers.  Often they balk at our questions and requests with the air of paternalism which is so misplaced.  To them, I say this:  Please please save my child.  If you do, or even if you just try your absolute best with personal investment in Maya, I will do whatever you ask of me. If you can’t, then perhaps you should reassess your significance in the lives of these desparate people, such as ourselves.

Perhaps it is because we have challenged the system that Maya is still alive.  Nevertheless, the system has worked for us thus far.  Maya  is alive and full of beans.  We will never discount that and we are grateful that we have had opportunities to keep Maya with us.  Of course, the cost has been exacting in many many levels.

After four years, we are but a handful of parents who are still left standing. We stand with our daughter with gratitude. We also feel guilt towards those who have fallen along the way. Why us?  Will we be next? I still see Connor – the first neuroblatoma child we met and lost-  walking the halls at Sick Kids, whenever I see a five or six year old bald headed boy. When we meet the surviving families, there is an intimacy that can only be shared between us.  It’s hard to put into words what that is.  I suspect it is not too different than what soldiers – brothers in arm – must feel. There is a deep level of connection, happiness in seeing them as well as sadness and guilt in being alive.  We know that the battle scars are all there.

At the end of the day, those who stand and those who faced the horrors have nothing more to do than the luck of the draw. A close (neuroblastoma) friend we know of figuratively dodged a bullet in flight.  After four years or more, we don’t really know why we still stand. Perhaps it’s a combination of luck, timing, some lucky decisions on our part, support from some incredible doctors, and the constitution in our children to weather the greatest storms of their lives.

We did not choose our children to be ill. It isn’t anything we might have done or even genetics. I don’t know if there is a lesson to be learned. I don’t care for one really. What I do know is that it has challenged and tested our love towards our child beyond what I thought was possible;  that part of our success as a species necessitates such dedication and devotion towards our children in all of us. Therefore, one can be assured that if an unfortunate circumstance arises in life, everyone is capable of withstanding the demands of it, although the outcome may vary.

There is nothing remarkable in this story aside from the fact that we are given the opportunity to express our love. That and the realization of human spirit and kindness.  If there is a realization in me, it is just that I love my children more than I could have ever imagined. And that is good.  We do what we must.  And presently, we can still enjoy our daughter.  That is enough for me today.