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3 years and counting

It’s been quite a while since we’ve posted anything on our page.  It’s about time.   What’s been happening in the last while since we’ve made a post?  A lot of nothing punctuated by jubilations as well as the familiar feelings of helplessness.  But, overall, I think it is safe to say that we’ve moved from being the cancer family to a cancer survivor family.

In February, we’ve made our annual trek down to Memphis, TN.  This time around, we drove the 1000 miles trek.  Maya has a lot of “dead space” in her lungs and she is not suppose to fly.  So we drove.  The visit was hectic as usual and we rushed from appointment to appointments trying to squeeze in all the visits we were supposed to.  Succinctly put, everything is fine as we could expect.

Her counts are good.  Her chimerism is 100%.  Her lungs have stabilized and don’t expect additional deterioration.  We don’t have any room for further deterioration.

Maya is enjoying her life to the best that she can.  She is active in drama, violin and has sleep overs with her friends on a regular basis.  She is doing well in school, and while we, as parents would like her to do better, it’s nothing to complain about.  We do have to deal with lung issues, especially during the flu season.

And we do have to be careful for pneumonia.  And while we would rather be home, we have about a weeks stay here at Sick Children’s hospital here in Toronto.  Friday morning, Maya was a bit off, but well enough to go to school and even go on  a play date.  She was a bit under the weather Saturday and broke 40 degrees during the evening.  So, on Sunday, we decided to bring her in.  Yup.  Another day at the emergency.  Off we go.

And we settled in for a long day.  Maya was complaining about a soreness around her left chest area.  We gave her some tylenol up to now, but it was no longer cover her discomfort.  She was starting to ask for morphine.  And in the mean time, the chest X-ray showed some opacity that was thought to be pneumonia.  Well, we’re in for at least 48 hours.  In the course of about 1 hour, her pain became acute and Maya was screaming her lungs out due to pain.  Screaming didn’t help either.  It caught us off guard.  How can she go from being ok to screaming her lungs out in a matter of minutes?

Thankfully, our emergency doctor was Dr. Moss;  Maya’s old paediatrician.  He was the one who got us to come to Sick Kids when we were first diagnosed.  And we hadn’t seen him until very recently, back at sick kids emergency.  He was still troubled with the not catching the Neuroblastoma earlier, some 7 years ago.  I never looked at it that way.  If anything, he caught it early enough that we still had a fighting chance.  Had he not caught it when we did, 7 years ago, the story could have turned out much differently.

Well, hydromorphone was ordered right away and within 15 minutes or so, Maya was drifting off into the opiate induced dream land.  Thankfully, we were lucky today.  Had we waited, the amount of pain that Maya would have had to deal with would have been significant.

So, here we are.  We have pneumonia.  It’s not a big deal.  But for us, it is something that we have to deal with.  In the world of paediatric oncology, often, the ups and downs can occur within minutes.  For us now, these dramatic events are starting to come at a slower pace with less intensity.

A good part of Maya’s life was written for her.  It was written by her doctors, nurses and importantly, by her parents into her flesh. But regardless of the track marks, and puncture holes and scarred lungs, her spirit remains high, inspired and full of life.   We will go on with these visits and undoubtedly, some will require hospitalizations.

She may not be able to climb a flight of stairs, but Maya will always smile at Don, our crossing guard.  Maya will not be able to run with her friends, but she will always be a giant among her friends.  Maya knows the difference between morphine and hydromorphone and knows when she needs to listen to her body.  And while she may have spent more time in hospitals than most, she will engage her life with fervour and gusto that betrays her young age.   She will impress you with her positivity and her zest for life.   You would never know… how challenged she is.  And that’s just a beginning of a little girl who came to show how to live like a giant!

Two Years Post Transplant check up

[Feb 9, 2016]

Apologies for not updating sooner… Last week we got the results from Maya’s check up at St. Jude, she continues to do well, her chemistry was perfect! Bone marrow aspirations and biopsy were clear, chimerism of the blood is 100%, marrow chimerism 99-100%… Breath. We are beyond happy and grateful . Thank you everyone for your prayers and good thoughts .. They work!!! ‪#‎hope‬ ‪#‎faith‬ ‪#‎believe‬ 🙏🙏

A photo of maya exactly 5 years ago with her little cousin Lily and another one taken this past weekend

Gracias a todos por sus mensajes y oraciones, los resultados de maya han sido muy buenos. Maya sigue en remisión . Un abrazo ‪#‎fe‬

Maya con su prima Lily hace 5 años y la segunda foto es de este fin de semana

[Jan 28, 2016]

Thank You everyone for your prayers and support.

Maya and kirby made it to Memphis yesterday. They were supposed to arrive on Tuesday night but missed the connecting flight in Chicago due to weather/aircraft issues so with no luggage (they were asked to check in the carry on bag in Toronto) no clothes, no toiletries, and no meds, they slept in Chicago and took the first flight out to Memphis on Wednesday morning, no without being delayed again due to the plane being de-iced .

Maya had appointments starting at 7 am at St Jude, but only got to the hospital at noon. So kudos to Kirby and Maya who took it on stride and went straight from the airport to the hospital with the same clothes they had been wearing the day before (used as pjs as well) and endured a long day of appointments,only to check in to the hotel late in the day. Not to mention that maya had to be NPO for her 7am test which could only be done at noon, which was 1pm Toronto time with a hungry Maya not able to eat a thing.

Also thank you to St. Jude they were very supportive on rescheduling appointments not once but twice as their arrival time kept changing.

This is late at night. kirby and Maya exhausted after a very long day‪#‎facetime‬ . Today Maya starts appointments at 7am. She will be sedated for bone marrow aspirations and biopsies. Thank you for your prayers

Back to Sickkids

We can hear it. The wheezing in the chest. Yup. Maya has a cough and she’s been persistently coughing for a couple of days. No fever but we know that there is something going on in her chest. It’s most likely something she picked up, although we haven’t had too many visitors at home. Something to keep an eye out for. And we push the irrational worry that wants to bubble over.

We had our regularly scheduled chest CT scan this past week. Two weeks ago, we had a chest CT. It showed something else; something called Ground Glass Opacity. etiology could be one of many things.

  • Bronchiolitis Obliterans
  • pneumonitis
  • fungal infection
  • etc etc.

Our BMT Doctor was very worried.  Just like that, our back is against the wall.  I tell myself, here we go again. we’ve been here many times before. We’ve always came through. I’m sure we’ll get through this again.  On this past Tuesday, we didn’t know enough to be that scared. But, as reason finds us, the dread over comes me. As mind spirals out of control, the first thoughts are, will I need to give her one of my lungs? Will it even fit? Is it even healthy enough for my daughter? Well… if it comes to that, I would happily give her mine, and more.

Settle down… We need to keep our composure. So, Bronchio-Aveoloar Lavage (BAL) was ordered. Basically, they take a camera down her lungs to take a look, and wash the inside of her lungs with some saline to collect whatever might be growing inside. We’ve had this procedure before and although it sounds scarey, it’s relatively easy procedure to go through. Maya is under anathesia for the procedure.

The fear is simply this: Because Maya’s immune system is still not 100%, she is under antibacterial (for Microbacterium Avium infection), antifungal (caspo-fungin) and antiviral (acyclovir). Still, within two weeks, the GGO has gotten significantly worse. If we are dealing with an infection of sort, we have not much else to give her.

On top of that, she is receiving pulse steroids for Bronchiolitis Obliteran (BO). If it is BO, this is also a grave issue. What can we do aside from the pulse steroids?

In short, we are running out of things we can apply to help Maya. Moreover, everything that we have thrown at Maya seems to have significant side effects as well work against each goals. For example, giving Maya steroids weakens her immune system. Hence, she is not able to fight off infections as well. If we stop the steroids, what do we do about BO? And antibiotics, antifungals can be harsh on the liver as well as the kidney.

So, on thursday, Maya had a BAL procedure. Everything went smoothly and we were able to get a good mucus sample from Maya’s lungs. Outstanding! Except… we have not found anything… I mean, yes we did see a couple of different types flu viruses and that’s all good, but flu viruses do not typically cause GGO. We were thinking that the GGO was the result of aspergillus fungal infection, but that too came back negative. So, we don’t yet know what is causing the GGO.

I was mildly upset enough to get snarky at the doctors. At this age, we still can’t identify bugs easily enough… You have good mucus sample. How come you can’t seem to find the bugs? As is typically the case, we’re on a “fishing expedition”. Since we were on caspo-fungin for anti-fungal, if it is a fungal infection, it is not working. So, we’ve switched over to voriconozol. Now, voriconozol level takes quite a while to build up in the system. So, until we get a good serum level, we’re also on Ambisome, which is harsh on the body. We also stopped rifampin, which was one of the antibiotics used for microbacterium Avium, which works against voriconozol.

At this point, we don’t know what is causing the GGO. Hopefully, we’ll be able to find the cause of the GGO in Maya’s lungs. But if nothing comes back in the next two three days, we may be in for a lung biopsy.

Now, if you look at Maya today, you would see a happy go lucky girl, albeit a girl who coughs all the time. But you would see an upbeat little girl who wants to be outside playing in the snow with her dog. Maya wanted desparately to be outside so she can spend time with Tofu on her first winter season. Again, Maya is well enough right now. But we have no room for any additional degradation in her lungs.

Maya was well enough to get a day pass.  So, we came home to relax.  And Maya took full advantage of her short lived freedom.  She spent a good hour or so outside with Tofu.  Maya loved it and so did Tofu.

So, nothing to do but wait and make sure that we pass the time, until we find out what we’re dealing with.

Maya  is just an amazing little girl.  She sure keeps us on our toes…

Status Quo

Dear All,

It’s been quite a while since we’ve posted a new blog entry. Part of the reason for that is that we have spent our energies more on the facebook page.  However, there are those of you who are not facebook friendly and so I thought we should post a follow up.

As you may know, there have been some complications with Maya. There are three issues which we are currently dealing with:

Brancholitis Obliteran is the result of all the chemo we have received. There is some thought that this disease was caused by Melphalan, which is one of the chemo used to kill off Maya’s bone marrow. We have had Melphalan before, but for whatever the reason, this time around – perhaps due to the high dose – it may have caused the lung damage. In order to treat this disease, we have been getting the high dose “pulse” steroids for three rounds. The good news is, the downward trend seem to have stopped and nominal amount of lung function has been restored. At this point, we no longer worry about losing her lungs. It is however unclear whether fibrosis has set it. If so, approx 50% lung function is what Maya will have to live with. The doctors at sick kids feel that an additional three rounds of high dose pulse therapy may be beneficial. Without doing a lung biopsy, we won’t know if we have significant fibrosis. In other words, we won’t know if the additional three rounds will be beneficial. In other words, the next three pulse doses will be diagnostic in whether there is fibrosis.

Now, all things in medicine is a double edged sword. While giving her the pulse therapy may be beneficial, it is not all together without risks. Specifically for Maya, we are also dealing with Osteoporosis. Many of Maya’s back bones have compression fractures, some caused by cancer itself and others likely due to all the therapy she has received. Maya may have had a very slight hairline fracture in her right ankle due to osteoporosis. So, Maya is also taking calcium suppliments. We will likely see a naturopath to see if we can provide additional bone support for her.

And additionally, we have also tested positive to a rare bacterial infection; Mycobaterium Avium. The bacteria is not that uncommon. However, being infected in the lungs is rare because typically the body fights off the potential infection. Of course, with compromised immune system, somehow, Maya picked it up. This means Maya will be on an antibacterial for about a year. The cons: we may lose color vision and we have also noticed a nominal additional hearing loss.

These three issues are “under control”. Hmmm…. not quite under control, but it is not out of control. What we feared the most was the possibility of losing Maya’s lungs. What would we do if that was to happen?

We have now two additional teams to deal with. The first is the chest team, who are following Maya’s lung functions carefully. We are also being followed by the Bone clinic at sick kids.

Maya continues to do well. She is the most well adjusted child that I know. She is happy and the worst of her complaints is that she does not like to miss school. Maya will not start school until January if all goes well. But she keeps busy. Firstly, she loves loves loves her puppy Tofu. Out of the blue, Maya wanted to play the violin. So, we have a violin teacher coming for lessons. We also have ear plugs for the family, at Maya’s insistence.

Other then that, things here at the Kim Family has been rather “normal”. We are enjoying our time with the family. It’s been refreshing to be caught up on the typical issues of a life in the city.

So thank you all for keeping an eye out on us. We appreciate your support and your kindness.

Breathe

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!

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.

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.