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.