cycle – 2 cont…

It’s Saturday morning.  There’s a distinct laziness that pervades all weekend mornings and we are also enjoying the weekend.  Rather than spending the morning in our bed at home, we’re at sick-kids, on the 7th floor.  Maya started her third day in her second cycle.

The process is simple.  First, antiemetic drug is administered.  This will help with nausea and vomiting. Then the chemo follows.  This process takes one hour and this morning,  it means three batman episodes on the laptop.   Maya is a girly girl.  Pink and barbie and dresses are her thing.  Except for Batman.  Go figure.

We’ve had two cycles of chemo and we’re starting her third.  She spent the entire day yesterday roaming around the 8th floor.  Maya is starting to look anemic again.  Her skin looks pale and dark circles are starting to form under her eyes.  Par for the course.  Her blood count is still OK.  But in a day or two, it will drop. On the white board in our room, there is a list of the when and how much urine Maya has produced.   During chemo and for a couple of days afterwards, this is our ritual.

We’ll have to be more careful as well. That also means the number of times we wash our hand goes up as well.  20 – 30 times a day?  Easily.  We will lose what little that’s left of her hair in the next week or so.  Maya has a cute pink hat on.

Home again, home again

So…. we’re part of the cog that is the big oncology machine at sick kids.  For the next little while we’ll be in and out of the clinic and admitted as necessary.  We already feel like we’re getting the hang of it.  Maya is also coming around as well. But, she was very happy to be home.

It must be getting nice outside again, as children come out with their parents in tow.  All her friends were outside and Maya could not let that pass.  Our wonderful neighbors have been very supportive and their kids are all great. Nothing like friends to keep your spirits up, even (or especially) if you are only  four years old.

The children were outside playing.  Parents congregate too,  with an occasional hover about the children to re-establish parental parent-ness.  An occasional shouts can be heard from the parents in the midst of frenzied shrieks from the natives.  It’s a lovely habitat!

Maya was happy to slip back into her world.  We are happy to see her in her familiar setting.  But in this new paradigm, new little worries exist.  Hope she doesn’t get a cut.  Her blood count should have started to fall and with little platelets,  Maya will bleed.  It’s still OK.   Or, is that something at the back of my throat?  I hope not.  If it is, then I’ll have to keep myself away from Maya.  That’s not good for me.  In three days time, we’ll need to be more cautious as her neutrophil count will be down significantly or even to none.  That means effectively Maya will have no way of fighting off infections.

Well, that’s later. Once inside, Maya watched more batman.

Home again.

Maya:  Opa (Taylor)  I have something terrible to tell you.

Taylor:  Oh? what?

Maya: Karen doesn’t have any black eyed peas.  She only has Lady Gaga! Isn’t that sad?

The Suffering

I don’t understand.  I always tried to live well.  I mean I always tried my best to do the right thing.  What have I done to deserve this?  My daughter…..  I mean Ok, Ok… so she has cancer, but does she have to treat me so badly?  Just the other day, she told ME that I should not talk back to her.  Can you imagine that?  Noooo….. You can’t possibly even begin to imagine what it’s like. Now days, I hear that spanking is frowned upon. Oh boy, some days, I could just?.

Help me!!! My daughter is a princess! ?No I?m not? she will say. ?You?re a princess? or ?You?re a Nazi?. And this is the behavior when Maya is relatively well. When chemo kicks in, oh boy, the scene from Exorcist comes to mind. There is no doubt that Maya has taken after her mother.

There are moments in one’s life where clarity becomes him.  This is not that moment.  If I were to have such a moment,it would not to be lost, lest you anger the universe with my impudence.  I must take charge over my dominion. Clear, simple, beautiful. I harden my resolve and approach her. Maya Kim!!!

“Dad-dee…  I love you.”   Puss in boots (from Shrek) has nothing on Maya.  You know, the moon looking big is an optical illusion? That same phenomenon exists with Maya?s eyes. They become larger and googly and renders me entirely helpless.I am beaten. Oh…. for the love of humanity!!!

Most fathers with daughters would look forward to that fateful day when a boy will come to ask for the daughter’s hand.  Not me!  I imagine I’ll say something like, “Son… do you know what you’re really saying?  Not too bright a lad are ya? Run along now. Before ya lose an eye or something.” And if the boy insists, I guess I?ll have to have him sign a release form with multiple initials to ensure that he understands that he too will be wearing a skirt.

And so, I live with this impertinence, humiliation and travesty of life.  Some might ask, dude, then like why do you put up with it?

I can only say because… I love her.

 

P.S:  Indira says Maya does not take those traits from her.

Can’t Imagine

When Taylor was a toddler, he spent a few days at sick kids.  Even though his injuries were serious – could easily have been life threatening- we knew he was going to be OK.  One evening, feeling particularly overwhelmed, I bummed a cigarette from a couple of ladies who were smoking outside Sick-kids. Naturally the question came up.  “Why are you here”?   I told them what happened and they were very sympathetic.

These two ladies answered back in turn.  My son has leukemia.  My 2 year old daughter has brain tumor.  I was floored.  For a couple of seconds, I could not breath.  My son was hurt, but he was going to be OK with no permanent impact on his life.  Even so, to see him hurt was devastating for me.

Here were two women with children whose futures were  uncertain. I could not fathom what they were going through.  “I can’t even begin to imagine what your ladies are going through”.  They simply said, “well… we just take it day by day.  It’s all we can do”.

This theme of incomprehension is something we’ve heard from our friends and family. “We can’t even begin to imagine what you are going through”.

If you’ve had a sleepless night because  your child was sick, then you understand.    If you hurt because your child is in pain, you understand.  If you would take your child’s pain/disease without a second thought, you understand. The worries and the love you have for your child is what we have for our little girl.

The difference, I guess, is that this (false) sense of continuity has been stripped away for us.  That is,  we do not know where this journey is taking us.  But then again, who really knows? Where will we be in a years time or two or three?

The only thing I can rely on is now.  It is only now that I can have with my wife, my son or my daughter. And we take it one day at a time. And today, it is good.

 

cycle – 2

Ohhh…. why do we have to go to the hospital?  But I’m better now, Maya said last night as we packed up for sick kids.  Maya you are much better now, but you are still sick.  We want you to get fully better.  That’s why we have to go back.

We checked in last night to start the second chemo cycle.  The second cycle consists of the same chemo drugs that were used for the first cycle;  Namely Cyclophosphamide and topoteecan.  I’m not sure if the dosage is the same yet.  Next step will be the stem cell harvest in the next week or two.

This time around, checking in at sick kids was pleasant.  It wasn’t under the heaviness of having a very sick child coming to the ward.  Maya walked in to 8A and was immediately greeted by the nurses who took care of her just a few days ago.  They were all very glad to see Maya.

Maya did get agitated when the nurse came to collect some blood and mucus samples.  However, this episode was over quickly and with no “pokies”.

Also, Maya has made friends with other sick children and immediately asked for Rana a 9 year old who has leukemia.  Rana was there before we got there initially and she was still there. We didn’t have the guts to ask when she can go home.

We also met another girl Stephani, also 4 years with Leukemia. Like Maya, Stephani has compression fracture in her back due to the cancer spread.  Maya quite eloquently gave a dissertation on her tumor and how her back was hurting to Stephani. Maya is feeling much better now and Stephani will be too, soon enough.

As soon as the IV was connected, Maya was out the door and down to the play room, with the IV pump in tow.  They wanted Maya to be well hydrated before the chemo starts.

Maya and Indira settled in comfortably.  Chemo will begin thursday sometime.

Nothing Matters But the Weekend

This weekend was perfect! We brought Maya home on Friday, after being at Sick-kids for three weeks. The primary thing on our mind was, is the house clean enough? Although Maya’s blood count was returning, it was far from being “normal”. She can easily pick up an infection and we’d be back at sick-kids. That would not be good for anyone’s spirit.

Karen, our nanny and Indira’s mom did spend Thursday and Friday cleaning the place. Was it good enough? Time will tell. Once we’re back home, Maya had a couple of melt downs. All her toys were in the wrong place. “This is not right!!!!” Maya would say.  Who knew chemo can talk? After the first couple of hours, Maya settled down and was back to her normal self.

Late Friday afternoon, Maya and Indira went down to High Park. They had a picnic. Indira made a special picnic basket consisting of nutritious food (candies, marsh mallows etc) and went to spend a couple of hours under the open sky.

Saturday afternoon we took Maya to see “How to Train a Dragon”. Maya really enjoyed the movie. She sat transfixed to the screen and watched eating popcorn and drinking slurpee. Every so often, she would hand me her slurpee so that I can mix and melt the content for her to drink again. I was perfectly content with the task that was so generously bestowed on me.

Many times Maya had belly laughs from the movie. What a beautiful sound. As the movie was ending, I could see that Indira had tears in her eyes. So did I. Something so simple and so casual as watching your child enjoying a movie had a profound effect on us. For a while, cancer ceased to exist.

Sunday afternoon was the ROM. We went from floor to floor looking at different things. Maya loves the Bat-Cave. In the dinosaur area, there is a little sand pit with some bones which the children can discover. Even though Maya wanted to put on the safety goggles there, I did not let her put them on. Later that afternoon, Maya told her mom that she couldn’t put the goggles on because she had cancer.

One great news we had over the weekend was that the daily shot of Filgrastim (GCSF) that Maya needs to take does not need to hurt. Although Maya has an IV in her arm for the shot, the medicine going in burns. Irena, the home care nurse showed us that if you inject the medicine very slowly, it will not hurt. This is contrary to what we were told at sick-kids; GCSF will hurt! We were very happy to find that GCSF does not need to hurt. It’s interesting that Maya’s heart rate prior to this knowledge was around 160 bpm. Afterwards, it remained around 100, which is the normal heart rate for a 4 year old. We’re happy to see that Maya’s anxiety level has gone down.

For the last couple of days, Indira and Maya’s been sleeping in the little tent that Indira bought for Maya. It’s funny to see the two of them lying inside the tent in our bedroom. Maya insists on camping and Mommy should also camp with her. So, for the last couple of nights Indira’s been sleeping on the floor half inside and half outside the tent. Indira’s been complaining about her back aching from sleeping on the floor.  We called it happiness.

We start second cycle chemo this coming Wednesday.

COG Protocol

On March 31, we started chemotherapy.  The word brings fear and loathing to some of those who must face it.  There are good reasons for this fear.  Chemotherapy is apparently harder on adults than children.  Of course, we typically do not hear from children about Chemo.

Sick-Kids is part of COG (children’s oncology group) that shares information across US and some european countries.  COG follows 21 day chemotherapy cycles.  It involves 5 days of chemotherapy followed by 16 days recovery period. COG procedure for stage 4, high risk consists of induction phase and consolidation phase.  Some European organizations follow 10 day cycles with the same total amount of drugs.  While there has been some rumblings of better outcome,  oncology team at sick-kids feel that the results are inconclusive.

Maya’s procedure is (ANBL0532)

Induction phase

In induction phase, the chemotherapy is used to stop and retard tumor growth. Different types of chemo is used in conjunction to meet this goal.  21 day cycle is used  to provide maximum period of recovery time without providing enough time for the tumor to regrow as well.

After the first two cycles, Maya will participate in peripheral blood stem cell harvest.  The harvest is made in preparation for stem cell transplant in the consolidation phase.  The stem cells are harvested after the second cycle to reduce the amount of cancer cell that may be floating in Maya’s blood. Harvesting will take anywhere from 1 – 3 days.  Maya will have a femoral vein catheter inserted in one of her legs.  While the catheter is in place, Maya will be bed bound.

There will also be another CT scan to see if the tumor has reduced as well.

After her 5th cycle, Maya will undergo a tumor resection.  Surgeons will remove the tumor from her primary site. The tumor resection is left until after the fifth cycle in hopes that the tumor has reduced in size or died off to a larger extent.

Consolidation

By the time that 6 cycles of chemotherapy has been administered, under ideal condition most if not all of the cancer should have disappeared. The main goal of consolidation phase is to ensure that all trace of cancer is removed from the body.  Firstly, Maya will undergo a high dose chemotherapy using three  chemo-cocktails.  The dosage will be much higher (3 times higher) than what she has received until now. Maya will have partial hearing loss and she will be infertile.  It is also possible that she will have compromised organ function or organ failures.  Bone marrow will have died off and she will require bone marrow transplant that has been harvested earlier in the process.

Radiation therapy will also be administered as well.  While NeuroBlastoma is responsive to radiation therapy, receiving radiation increases the chances that secondary cancer may develop in future.

Maintenance Therapy

Maintenance therapy attempts to address the issue of recurrence.  After all, all cancer patients have produced the cancer cells.  Undetectable amounts of NeuroBlastoma may exist in the body and come back as relapse NB.  Relapse is more difficult to cure.

Accutane (13 cis retinoic acid) is a Vitamin A derivative has shown to mature some  NB cells thereby making it non cancerous.

The big advancement has come from “immunotherapy”.  At sick-kids, they use the chimera antibody derived from both mouse and human. This antibody attaches to the NB cell (on ganglioside, GD-2) and thereby alerts the immune system to attach and destroy the cancer cell.

While the process has been mapped out quite clearly, it does not mean it is rigid. Along the process,  based on Maya’s response, the process will be adjusted to ensure maximum benefit with minimal adverse side effects.  For example, if it is determined that Maya’s hearing is being significantly impacted, the dosage of the chemo, which causes hearing loss will be reduced.

This is serious. As Dr Paul Gibson has put it, “We’re in for complete cure”.

Alternatives

Sick kids are open to alternative therapy. However, they do insist that they are aware of the alternative treatment that is being administered.  Quite rightly,  sick-kids does not want the alternative treatment to have an adverse effect or reduce the  potency of the treatment that sick-kids is providing.

We are interested in alternative therapy and if you have any suggestions please feel free to pass this information along to us.

Coming Home

Yesterday was a good day.  We were able to bring Maya home.

In a lot of ways, this drive home was very much similar to the drive that took place some four years ago.   Back then, we were joyous, tired and scared of having to look after an infant. We were responsible for this little person.  What do we do now? How do we feed her? How will we change the diaper? What if she gets sick?   All these questions were new to Indira.  For me, ten years  worth cob webs took some time to clear up.

Maya looked so fragile. But we were enamored with this little person that is the product of our love.   We’ve become parents. The brave new world consisting of diapers and baby goo were in front of us.

It was a beautiful day out; Sunny and warm.  The car was packed with stuff from home as well as gifts which we received.  Maya was in her car seat quiet but happy as can be.   We are joyous, tired and scared of going home with a sick child.  What do we do now? We’ll have to deal with cleaner environment, fevers, needles and going back and forth from Sick-Kids.  We’ll also have to deal with a little girl who has been poked and prodded who’s been compensating by developing quite a bit of attitude. It’s  hard to fault her but nevertheless not something that can not go unchecked.

Although the details have changed, the feeling is the same as the ones we’ve had four years ago. As we have done so four years ago, we’ll adjust to our new life.

I was never so happy to be driving with my little girl safely tuck in her seat.

Gratitude

Life is strange.

Three weeks ago, the thought of having to deal with a major life issues such as  cancer would have been furthest from my mind.  Three weeks ago, we were all wrapped up with work, kids,  making dinners, grocery shopping etc.  The days were hectic and by the time we were home, we were typically exhausted.

That was three weeks ago.    It’s very strange that one word could turn this upside down so quickly.   Superfluous issues seems to have marked itself as irrelevant and have all but evaporated way. Funny…. all that seems to be left are family, friends and genuine goodness of humanity. I find this surprising.

I’ve matured enough to understand and accept that there are times in one’s life where one is faced with difficult issues.   There is no shame in asking and accepting help.  And having to deal with Maya’s illness, I have asked for help and have received support from everywhere I turn.  I am surprised (overwhelmed) and humbled with the amount of support that we have received.

Sadness have become a companion of mine. And there are times where life is punctuated with periodic spells of desperation.  But these episodes pass by and have not become part of the fabric of my life.   Instead, and surprising to me is the overwhelming sense of gratitude I feel towards those who have went out of their way to provide me with support. To them, I am grateful.  Thank you.

I am grateful to our families for being so vigilant. I am grateful to Toronto Zen Center and the Sangha members for showing so much support.  Every morning chants are dedicated to Maya for her wellbeing.  I am especially grateful to Sensei Henderson  for providing support and good will towards my family.  There are too many Sangha members to thank who channel their energy for my little Maya.  As one very special Sangha member has said to me, by allowing the Sangha to channel their energy to Maya, Maya become s part of theirs as well.  Indeed, Maya also belongs to the Sangha.

Our neighbors also have been extraordinary.  Visits from the Currie family as well as the Acton’s have brightened Maya’s days.  Food parcels from the neighbors have been both nutritious for body and mind.

Visits from Tia Jen was also very good for Maya.  Tia Jen made a special trip from Vancouver to see her niece. Maya was very happy to see her.

To all those who have sent Maya presents and good wishes, my sincere thanks goes to you.

I take great strength from all the positive support we’ve received. While we are in need right now, I am certain that in the future, we will return our positive energies back to the pool that belongs to humanity.

 

Thank you.

 

Kim Family.

Home Sweet Home

Hurray!!!  We’ve just learned that Maya was given permission to come home!

It’s been exactly three weeks since Maya was admitted on March 25th. For Indira and I, these three weeks have been one of the most intense and trying times as parents.

From now on, we’ll be in and out of Sick-Kids as out patient. Most of the children will end up back at Sick-Kids due to some kind of infection sooner or later.  So, we’ll need to be very careful with keeping everything clean and make sure she is protected from unnecessary germs/viruses.  During the times when Maya is receiving Chemo, she’ll be admitted for 5+ days.

We are just starting our process with our special group and I am sure there will be many challenges.  But for now we have everything we need; Our friends, our family and most importantly Maya and Taylor.

What more can we ask for?

Time to define our new normalcy.