All posts by Maya Kim

604 days and counting

It’s been a while since we’ve posted on our own website. Can you believe it? our domain name expired. Duuuh? Mia Culpa. We’ve been posting on facebook, as it provides us with the social medium, which a static website does not. But having said this, we are not oblivious to the fact that our website has grown into something of an epic journal, an archetypal journey through cancer and life.

The last treatment that Maya received was in January, 2014, at St. Jude. We are almost 2 years post treatment. So far, Maya is well. And we are well. Slowly, we are returning to our “new” normal as well. In terms of Maya’s health, yes, there are the impact of the “chemo fallout”. Imagine post world war II, London; There were a lot of damage, of which some will always be there. IE, Maya’s lung damage.

Maya started school. She was beeming with joy. And already, Maya has been noticed by both her mates as well as her teachers. What wonderful bunch they are! Of course, everyone at her school knows who Maya is. It didn’t take long for the new teachers to already notice her. For example, teachers noticed that Maya is overjoyous to be at school. “What? Trust me. It’s great to be able to come to school!” Or she’s been heard saying, “My dad says, you can never give up. You have to always try and try and try.” Some things are rubbing off. Could not be more proud!

We haven’t been to sick kids in over a month. The time we’ve had away from the hospital has been good for everyone. The luxury of simple worries of day to day events quickly fill the hours of our days. It’s a blissful anticlimax.

In the mean time, Maya is enjoying her life. Both Indira and I are ecstatic about that. She’s had a very busy summer, with trips to Florida, camp for a couple of weeks and swiming with salmon in Vancouver Island. Although there are much we would rather forget in our past, one thing that we will never forget is the preciousness of life.

So, we do the best we can to appreciate and give thanks. We give thanks by living the best way we know how. And with that, our next trip will be to swim with the whales, somewhere. That’s up to me to figure out.

And in the mean time, it’s September, pediatric cancer month. Please help if you can. It’s really really hard dealing with cancer. However, when it comes in the form of pediatric cancer, it’s doubly difficult. So, please donate, run, spread the word or just send a note of encouragement. We can all use a bit of compassion. Children with cancer and their families could use your support, as we found out.

Dreaming of Butterfly

Today, March 26, 2015 marks 5 years since Maya’s diagnosis. 5 years ago, everything changed. Everything. We have seen unthinkable things. We’ve journeyed to hell with our daughter and back. Our hopes were raised and then dashed. We lived on prayers and the goodness of those who were kind enough to extend their hands to us.

There were many times when we thought Maya would not make it. There were many times when we would have gladly have given our lives for hers. There were many times when I would have gladly pulled out my organs for her. I will take these deals even now.

And we saw many children taken by this horrible disease. Why did that happen? What fault could a child have to deserve such a fate? Why are we still here? These are some of the questions that cross our minds regularly, if not daily.

Each time I engage my daughter, there is still a sense of surreality that accompanies the interaction. There are hundreds of millions of potential outcomes in this story. Perhaps they all happened in their respective timelines. Yet… my focus and reality is this timeline where Maya overcomes two very serious cancers. Why is my reality the one that works out?

Each moment is precious to us. A simple jesture of a smile or a belly laugh is a wonder of wonders. It truely is. It could have so easily not happened. It could have so easily have been snubbed out. Yes, we have all heard that each one of us is a miracle and that each moment is a moment unique in both time and space. But I would have never truely known this, had we not gone through such hardship.  I would not have known unless thissimple existence was so severly challenged.

Yet… we are here, even with some amount of guilt. We are here. And our daughter Maya, although she has battle scars befitting an old soldier, unlike such a warrior is still able to smile with a sense of innocence, awe and wonder for this thing called life.

And in these five years, we were supported and sometimes even propped up by those surrounding us. There were many candles lit at the Vatican, to countless chanting services and prayers by our family, friends and some we don’t even know.

Why should this be our lives? I don’t know.

We are a pediatric cancer family. We will always be a pediatric cancer family. But, what I can tell you is that we will live each day, each moment the best way we can; with love, compassion and gratitude for this wonderful thing called life. That would be just the beginning of how we can repay back for the support and love we have received.

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…

Bah hahahahaha

Wait for me!!!

Maya bounced up the stairs at the humber cinema last night, chasing her friends. I’ve seen this a couple of times in the last two weeks. What a joy!

Yes, you can see a little awkwardness in the way she climbs the stairs. Her arm flairs up with each step as if the stairs a little too high for her. She is slower than her friends. But Maya is bubbling over with joy. If you didn’t know, perhaps you would not even notice. It is only Indira and I who notice these little things. Wonder of all wonders!

It’s hard to believe what we are seeing. Is this even real?

When we got home in June, we were over-filled with joy. The fact that Maya could even walk a few steps or that Maya had to crawl up the stairs was enough. It was more than enough. She was just thrilled to be home. We were thrilled to have her home. The dull aches in our heart seeing our daughter crawling up the stairs were quickly squashed with the knowledge that she was home; we were all home. That gave us hope.  The grizzlie affairs are all but a memory.  Not a distant memory, but nevertheless a memory.

Now, Maya is climbing up the stairs like it was almost nothing. When I look at the odds of her being with us still, I can’t comprehend it all. The odds were wrong? Maya had 100% chance of survival? What does this mean? Why Maya? Why us?  Surviver’s guilt? It means, we give thanks each day, for this day, for this experience, for this … grizzlie, and horrific and… beautiful life.

The fallouts are many. The issues are never ending, it seems. But I have yet to hear a more beautiful sound than Maya (and Taylor) belly laughing. And we have that. We remind ourselves that when we have that in our lives, it is OK.

We just put Halloween behind us. Indira took it upon herself to invite many of Maya’s friends from the neighborhood and from school for a Halloween party before the trick or treat. I thought she took on too much, as we also had to work. But somehow, it worked out just fine. There were too many children with their children in our house. But everything worked out. Maya was ecstatic for a few hours on halloween to live like any spoiled child should. The belly laugh coming from Maya made it all worthwhile.

So, what’s in store for us?

Maya is getting a bit better day by day. The words, GVHD seems so distant now. No, we are not out of the woods. But we’re not in the thick of it anymore. Memphis is a distant fog, although in January, we’ll be returning for our first annual check up.  Comming up to a year since we’ve walked through the doors of Bone Marrow Transplant unit in Memphis Tennessee.  It’s just around the corner. We are trying to process all of this.

Bacterial Infections are all well controlled.  Maya’s lungs are stable.  She can belly laugh.  The joy of childrens’ laugh is doubled, trippled with Maya’s laughter. It means she can breath!  She is getting a handful of strong antibiotics and they have their own side effects. But we deal with these issues too.

Maya’s hair is getting longer and she’s put on a few pounds. All a good sign for us. In January, Maya will be heading back to school. We can’t wait. Maya misses being at school with all her friends. Thank goodness for Tofu. She spends a lot of time with the dog even though, either Indira or I am home with her all the time. We are lucky that we have the flexibility of working from home on occassions.

Is it really over?  The emotions are hard to process.

But, we put these emotions away.  These emotions will not rule our lives.  We give thanks for our beautiful Maya.  We give thanks with Love.  We’ve seen enough heartaches both for ourselves and others like us.   We won’t give anything more to cancer.

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.

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.