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!

One of the Lucky Ones…

I had a chance to talk to a lovely physician who was  interested in telling our story as part of an initiative to tell the healthcare stories.  We agreed to the interview fore-mostly because I think we have a story worth telling. More importantly, our success was built on those who came before us;  through their participation in the therapies that are available, through their losses and successes. We are now, part of that larger landscape. We add our name in wanting to help in whatever capacity we can.

To be sure, we are an outlier in a continuum that has more success stories than ever before. Our story is important because it shines a light in an area where the challenges are still greater than the successes.  More than half of the children diagnosed with Stage 4 Neuroblastoma will not survive 5 years.  Out story is important because addressing the needs of the subgroup which we belong to, (stage 4 subgroup) the hope is that the benefits will translate to other sub-groups. At least that is my rationale.

There are two dominating emotions that we deal with on a daily basis. The first emotion is that of ineffable gratitude. Yes! Maya is with us. All the possibilities can still be play out. The future concerts, plays, school events, first kiss, first love etc can all still play out. We can still watch her sleep at night and have our hearts overflow with the love of our child.

We are grateful for all the people who helped us in our journey. And there are so many people to thank. Doctors after doctors, nurses after nurses, who looked after our Maya…  Those who prayed for us, chanted for us… there is an unending number of friends, teachers, colleagues that all played a part in keeping our Maya alive.

The subsequent emotion is that of anger. How could you do this to our child? Again we are part of the larger landscape that will live with the effects of the therapies. We started with “Stage IV High Risk Neuroblastoma”. We are now, High Risk Therapy Related Mortality group.

  • Maya has lasting damages.
  • Maya is likely to adjust poorly in society.
  • Maya will not do well economically.
  • Maya will not live as long.
  • Maya will likely have other complications.

While I applaud every little successes that comes our way,  questions arise.   When will we save our children from dying? The image of children, those friends of ours, are forever etched in my mind. Those friends who are no longer.

You (Oncology) have to do better. Our current methodologies are not good enough. Not by any stretch of the imagination.

  • To whom do I forward my questions to?
  • To whom shall I vent my frustrations to?
  • The oncologists? They’re part of the machine too and they are in the trenches with us.
  • The bureaucrats?
  • The Government?

It is not clear. And when such criticisms are voiced, often, the type of response that we get are:

  • It’s much better than 10 – 15 years ago. Yes. Maya would likely have died 10 – 15 years ago. So, yes. But have we really come that much further? I wonder.
  • What do you want us to do then?  Well… do better. Why would you ask a non physician such a question? Do you tell your auto-mechanic how to fix the intermittent knock coming from the car?

We accept and live with what we have, even if each little cough that Maya has, is a dagger to our hearts. Even so, that is something to be thankful for. Because the possibilities are still great.

And in the meantime, Indira and I can now turn inwards. We look at the wasteland that was created inside ourselves in our efforts to keep Maya alive. The damage is also in us. PTSD that has been noted in the paediatric cancer parents is real.

The thoughts and the emotions which we have lived with need to be dealt with as well;  those terrible terrible days when the blackness overwhelmed us.   The anguish that came with not being able to do anything to help our daughter must also be dealt with.  The consequence of hanging onto those terrible emotions will continue to hurt us.  And we will not give another inch to cancer.

We have lived through an extraordinary event in our lives.   We are not alone.   Because we know what that “place” is like, we want to help, although it is not yet clear how.   We will find a way to contribute more than we are now.

We are the lucky ones.   There is no denying it.   We hit a jackpot.  And we are thrilled!  And even as we inspect the damages in us, we bask in the warm sunshine called Maya.  We bask in the profound human conditions called Love, Devotion, Compassion and Hope.

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

Breathe

When we were in the “thick of it”, all we could do was wish for the days when we would leave all the madness, this nightmare behind. We would live our lives quietly and simply. We would live with humility and gratitude for this precious thing called… life.

Perhaps we would even laugh at the terrible terrible nightmare we had lived through. In this idyllic world, there was a distinct line between being a cancer patient and not. Where did I get this impression from?

It’s not that simple.

Being in remission is a continuous process. Time is of the utmost essence, where longer you are in it, better your chances. This fact is well known, albeit it is discussed in terms of 2 and 5 year event free survival.

So, it took us by surprise when we found ourselves in that all too familiar “space” again; We are back in the battle mode.
No, cancer has not returned. We are making an acquantance with their ugly cousins, the side effects of cancer therapy.

For us, the issue is her lungs. She has has moderate amount of GVHD and Bronchiolitis obliterans has (most likely) reduced her lung function. We were around 50% on FEV1.

Now, it has decreased to 42% range. Maya’s oncologist (our favorite doctor) already has the ball rolling. We must act now! Why?

“Chronic GVHD, which occurs in 30-70% of allogeneic transplant recipients, is the major risk factor. The prognosis is very poor after development of this fixed airway lesion, with a survival rate of 13% at five years”

We are once again, pushed into action. Current thoughts are:

  • We are dealing with some sort of infection. This is unlikely as Maya’s been on anti-viral, antibiotics and anti-fungal. But it could still be some sort of infection.
  • We are dealing with pulmonary fibrosis. PF is not reversible. If we are dealing with PF, the best we can do is not to lose additional lung function. In this scenario, we’d take the 50%.
  • We are dealing with Bronchiolitis Obliterans. There are a couple of options:
  • We treat with SAMS. (Steroids, Azythromycin, Multelukast and Symbicort) There are existing studies in phase II. So, there is some traction here.
  • We treat with Imatinib.

Side effects from Azythromycin and Imatinib are something else. And we are also discussing whether a lung biopsy would be instructive.

I tell myself that we’ve been here before. Many many many times. While we can’t say that it feels comfortable, but all the emotions we feel are all too familiar, all too real.

Is this it? Will we lose her from the complications?
What are we dealing with? We still don’t know. And we still don’t know which direction to take. There are millions of things rushing through our heads and none of the thoughts are comforting.

We push these demons back and focus on Maya and what we need to do. In the mean time, our oncologist has set the wheels in motion.

We are starting a dialog with the surgeon for a lung biopsy. The decision has not been made yet, but we need to be prepared.

And each time Maya coughs, it’s feels like a dagger to our hearts. Push it back! Time to focus!

We’ve been hugging Maya more. We show her how much she means to us. How much she is loved. And this is how we spent the past few days. Worried, hoping for the best, spending time again researching. And it is with hope and reservation that we did another PFT this morning.

The result was astounding. From FEV1 value of 42% a week ago, it’s up to 54%. This value is better than what we were accepting. This is unheard of and definitely unexpected. It has taken a year to get Maya’s lung function to improve just 8%. And over this week, it’s increased 12%.

The week of worries simply evaporated. And we sigh a sigh of relief.

We don’t know what tomorrow will hold. And just as we were getting used to our “brave new world”, cancer and its thug friends threw us a gentle reminder that there are no guaranties in life. Ultimately all we have is now, the confluence point of both the past and the future, which we call the present.

As we peel back the sheaf through the kaleidoscope which we call cancer, we are left with the most important things in life; this mere moment with the ones you love. And that, is all we ever need.

Vaccination Drama

Recently I got into a heated discussion with some folks in the paediatric cancer forum regarding vaccinations. I think a healthy debate is beneficial for everyone who cares to listen. In any argument, the hope is that one can walk away from the debate with a better understanding to make the right choice for themselves as well as others. We all benefit from such a debate!

The issue of vaccination has landed in the same theme park as a religious arguments, climate warming, UFO, big foot etc, and no amount of reason seems to prevail. Regardless of the mountain of evidence that exists on this subject matter, still some view vaccination as evil.

Many people have written about it better than I can ever articulate. So why add to the pile?

Because I want to give a perspective from a pediatric cancer family. Not vaccinating may be harmful to individuals, community and society and possibly deadly for us. Of course, vaccination isn’t without risks. If you are immune compromised, or have other issues that require special attention, it may be wise to consider your options. This fact could not be more clear for us, who have a immune compromised child due to cancer therapies.

In the course of the said argument, I was especially drawn to the social aspect of the issue; One gets vaccinated to not succumb to diseases, but also to help the society at large as well. We all have a social responsibility to ensure that we do not harm others. In my opinion, altruism is part of our genetic makeup. From the social responsibility perspective, it seemed to me that not being vaccinated is akin to drunk driving.

Do all drunk drivers end up killing others? No. Probably only a handful of people end up hurting others. But it is understood that driving under the influence is a bad idea for our society and subsequently we do not allow such behaviors. The risk is substantial enough that we do not allow drunk drivers to get behind the wheel.

So, why is it that some of us, including some in the pediatric cancer circle, think that it is OK not to vaccinate? Some arguments I’ve heard are:

  • It’s a personal choice.
  • vaccines have poisons in them. Mercury, formaldehyde and Adjuvant are very unhealthy for people.
  • We have had horrible reactions to it.
  • There is a conspiracy to harm people through vaccination

If we translate some of these arguments into a drunk driving scenario, one can immediately see the failures of this line of thinking.

  • It’s my personal choice to drive drunk.
  • I had a horrible experience by not driving home drunk. I don’t know where I ended up.
  • There is a conspiracy for cash grab by the government.
  • I’m fine even if I have a few drinks.

There are genuine cases when vaccination may not be right for you. One of them is if one does not have a good immune system. In such a case, vaccination is not something that should be considered. But such a consideration should be made in conjunction with your doctor.

Moreover, there is a difference between getting the primary vaccines over flu vaccines. The primary vaccines which we get for diptheria,Tetanus,Rubella, Polio, etc saves lives and horrible consequences of the disease. Flu vaccines are more to protect you from unnecessary down time. Does it work always, no. But generally it is a good idea, although for most people, it is not deadly to not get the flu vaccines.

Notwithstanding a handful of acceptable reasons, if you do not believe in vaccination, all I can say is that you are prejudiced and put others in danger; prejudiced because because the opposing arguments flys against the substantial evidence. It is also very dangerous for those like us, who have been immune compromised for years.

What is incomprehensible for me is this:

  • 1 / 1,000,000 dose of vaccine results in 1 person being compensated. (We can say that one person either died or became seriously ill. Those who suffered as the result of vaccines, most were elderly with weak immune system)
  • 2 / 10,000 children under 5 will get cancer from CT scans.
  • 2 – 3 / 100 pediatric cancer patient will get secondary malignancy from the cancer therapy.

Huge frustration that the paediatric cancer families often deal with is the lack of concrete data. We are often left to make decisions without any form of data to back our decisions. We make life and death decisions not based on facts, but gut feel. Will this clinical trial work? Will we have to deal with severe adverse reactions?, are but two of the questions we deal with on a regular basis. So when we are presented with concrete and credible information, it should be a no brainer.

Except it isn’t. I fail to understand.

  • Why would you not vaccinate your children? (outside being immune compromised and with the consent of your oncology team)
  • Why would you be OK to give chemo or radiation to your children when the chances of these therapies having severe adverse effect is so much higher?
  • Why is it OK shirk your social responsibility?

I shudder at the thought of having survived two cancers, and having Maya exposed unnecessarily to other infectious diseases. It took all we had to keep Maya alive. Even then, the ripple effects of cancer just about destroyed everything it could touch in our lives. Everything!

Why would you insist on not getting vaccinated when it could potentially harm others? Why is your right not to vaccinate more important than my right not to be sick or die from your decision? Drunk driving is not acceptable. It destroys lives, just as much as not vaccinating you and yours.

I welcome your input from anti-vaxxers. Help me understand why you won’t vaccinate? And by the way, do you think drunk driving is OK?

PS: According to the WHO link below. 1.5 Million children died from vaccine preventable death in 2008 alone, against 1 / 1,000,000 death due to vaccine.

sources:

http://www.ncbi.nlm.nih.gov/pubmed/23790993
http://www.who.int/gho/immunization/en/
http://www.hrsa.gov/vaccinecompensation/data.html
http://healthimpactnews.com/…/zero-u-s-measles-deaths-in-1…/

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.