Jan 30th, Back Home

We are back home!!!  Maya got discharged on  this past Thursday.   On Thursday morning, Maya was allowed out of the room (she had to wear a clean outfit) and wheeled to have an MIBG scan.  While the scan was taking place, the doctors came into Maya’s room to clean up  and scan every single piece of item that belonged to Maya, that Maya had touched, or that had been brought into the room.   Maya’s pj’s were labeled too contaminated and so we left them there, but most of the the other items we brought we were allowed to bring them back home.

Righ after the scan Maya was set free, and yes she felt like a free bird,  running on the halls and having fun in the playrooms.  By 4pm we left Montreal and arrived in Toronto late Thursday night.

Friday was  a low key day for us.  We just mainly recovered from the 8 days spent at the Hospital.   Maya is doing quite well, she continues to be a bundle of energy, running, jumping and wanting to play at all times.  Looking back at our experience, I think that  aside of the hellish first day  the rest of the time went very smoothly.  Loong days, a lot of “I am bored, I am bored”  but thankfully no complications.   We had a wonderful experience with the staff at Sainte Justine’s.  The Doctors, nurses and everyone there went out of their ways to make our stay comfortable.  They were very helpful, very friendly, and we are very thankful for that.  THANKS Sainte Justine.

Maya’s counts have started dropping, she is not yet neutropenic though.  Blood  counts will bottom out 14 days after the MIBG infusion, hence this thursday or friday for Maya.   Maya wants to go to school.  Most likely she will go  1 or 2 days this week, and then we will see how long her immune system takes to recover.  The expectation is that we will be going to the clinic 2-3 times per week to receive blood and/or platelets transfusions.  If in 4 weeks Maya continues to require transfusions, then the plan is to give her/infuse back Maya’s own stem cells.  Thankfully we still have 3 bags (1 was used during the Bone Marrow transplant).  In 6 weeks Maya will have an MIBG scan, and it is only then that we will know if this MIBG therapy that she had in Montreal killed any of the cancer spots…..

We were not supposed to go to SickKids until this coming Thursday, however, last night while giving Maya a bath, we noticed that her central line  (CVL) was a bit bumpy.  Sure enough, I took a closer look at it before changing her CVL dressing and it was all red, and with some discharge.  I panicked as we really do not want Maya to get an infection right now, when she is about to have no immune system, no defenses.   This morning, we got up and headed to the cancer clinic at SickKids.  A swab was taken of the site, and  a cardiovascular nurse was called in to assess the situation.  Maya was given intravenous antibiotics, and will be taking oral antibiotics for the next 10 days.   We will be back at the clinic this coming thursday, they will look at the site again.  If  it has not improved then there is a possibility that the CVL line will get removed.  I am hoping that this is not the case as we have avoided pokes for the longest time with that line.  I will keep you updated.

As always, when we go to the clinic we see familiar faces, other families, nurses, doctors, cleaning staff, etc.  It is weird to say it, but I felt like I was home again.   SickKids has become so familiar.  I did not feel lost like I did in Montreal, being new to the Hospital there and trying to figuere out how to navigate the system there.   Today, Maya was happy to see Kayden, another NB warrior.  Maya and Kayden played  while waiting to be callen and then they requested for adjacent rooms in the daycare (ward of the hospital where transfusions and day chemo is administered).    Maya then wanted to visit Jake .  We headed to 8A, chatted with the nurses for a bit and went to see Jake.  Jake is recovering from a very hard cycle of chemotherapy.    I know I always ask for prayers and support, and so again, please send your positive energy to these wonderful kids who are true warriors and have faced so much.  Thanks from the bottom of my heart.

Every day is a gift for us, and today was a good day.  Maya is doing well and we hope that she continues to do well.   Thanks everyone for your support, your kindness, letters and emails, we draw strength from them.

 

Indira

Jan 24, So Far, So Good

We are so very humbled by all the messages of love and support we have received.  We appreciate them and we thank you very much.

Maya continues to do well, she is just a bundle of energy, wanting to do anything and everything at once.  Because she was supposed to be in bed with the catheter, I really did not pack clothes for her,  but since she is walking around in the small space she has, she wants to change every day.  I cannot really wash her clothes as whatever comes into the room stays, specially things like clothes that are in close contact with her.   Other items like the ipad goes inside a ziplock bag before given to Maya.

One of the hardest things right now is giving Maya the lugol (to protect her tyroid from the radiation) every 4 hours.  During the day this is not a problem, but at night it is.  Maya has to be woken up every time. Last night at 1am, then 5am.   Maya hates it, and grunts at me for like 5 minutes before sitting up. Because she is half asleep, she does not swallow the pill so it usually starts melting in her mouth and she throws up.  This was our story last night, we tried 4 times until she swallowed.  Of course by then end she has a melt down.   We go back to sleep and 3 1/2 hours later is the same story.   Anyhow, I take this anytime that seeing my daughter in pain.

Maya’s  dream  is to be awake all night long.  The first day we were here when we had the chaos of the catheter I made the mistake of saying to her, that this week Maya would do anything she wants and we would try to have fun.   Maya asked to stay up all night.  At the moment without thinking I said ‘yes’, big mistake.   Last night it was 11pm, I was very tired and I kept asking Maya to go to sleep.  Maya was painting and kept on saying that she was almost done.   Then I gowned up and went close to her and said, “you need to go to sleep” trying to be stern and firm.    Maya looked at me and said “Mom, sometimes I think you are not my real mom”,  I asked her why, she said “because you are mean to me, and you just yelled, and you do not keep your promises”, the way she said it with so much innocence  made me feel guilty.  Different thoughts crossed my mind “Maybe, I am being too harsh, maybe I did yell”…. Well, sometimes I think Maya is not 6 but an adult, and I have to remind myself constantly that Maya is just 6 years old, and that she is a master of manipulating mom and dad, more mom than dad.   Maya was allowed to finish her painting, and then she could watch a movie, or as many movies as she wanted in the ipad, but she needed to be in bed.   It worked, Maya was peacefully sleeping before midnight.

Our experience here at Sainte Justine’s children’s hospital in Montreal has been great.  The staff has gone out of their way to make us comfortable.  They do her best to assign an english speaking nurse to Maya.     The Oncology ward is in a new building connected to the hospital of course.  The rooms are big and comfortable.   The food is just like any other hospital food, Maya has not eaten any of it.   The plus side is that the ward has a spacious kitchen for parents.  Thers is a stove, oven, etc.  This makes life so much easier as we can prepare quick meals there.   I wish they had one at SickKids.   I know that many hospitals spend a lot of the money they fundraise in renovating their facilities and not in research.  I have mixed feelings about that, but one thing I can tell you, hospitals like SickKids and St. Justine’s do make hospital stays a lot easier on both the parents and the kids.   It makes a bit difference  to be surrounded by brighteness, color and space and to have these additional extras that make life so much easier than to be in a dark, small gloomy hospital waiting area/room.   For all of us parents dealing with so much stress of having one’s child go through treatment and having to be at hospitals almost daily, these things do make a bit of a difference.

Likewise, the Ronal MacDonald Manoir that is behind the Hospital is a new facility.  I am not sure what I was expecting but I was very much surprised to see such a wonderful place.  The huge kitchen is a state of the art.  The dishwashers are small but wash the dishes in 3 minutes.  I want one of those.   For us right now, it is just a place to sleep as we have not spent much time there.   St. Justine’s is a big hospital and I got lost a few times.  I know my way now, and if I walk inside towards  the old section of the hospital there is an exit that is right in front of the Ronald McDonald Manoir, so it is very convenient to quickly go take a shower, change and come back.

We have been doing this for almost 2 years, but still saddens me every time i walk through a cancer clinic.  The kids, young kids with no hair, nose tubes, the parents, and yet for all the amenities, toys in the play rooms, the reality is that there is a lot of sadness in these places, a lot of tears, despair, anger and at the same time hope.

Maya says hi and thank you! 🙂

Thank you for sharing our journey through neuroblastoma

Jan 22: Another Day

Hello, First of all I wanted to say a big THANKS to all of you who have left comments, emailed, sent messages of support.  We thank you so much.  Apologies for not replying back, it has been a crazy time, but hopefully later this week we’ll have more time.

Today, Sunday,  was a day of recovery basically.  Last night it was my turn to look after Maya.  Kirby left for the Ronald MacDonald House just behind the hospital around 9pm.  Radiations levels have dropt so we were allowed to put the reclining chair inside the room by the door, and stay behind a couple of lead shields.  I thought it was going to be a quiet night, but again I was wrong, and in a good way.  Maya was just so full of energy and wide awake.  The “I am bored” song started.   So she stayed up until 2am playing, dancing, singing.  I was dead tired and every time I sat down I did not want to get up.

At 5am, after 3 hours of sleep ( for me I thought I had just closed my eyes), the nurse came in with Maya’s lugol.  I tried to wake up Maya, and she would only grunt at me lol.  She refused to sit up.  She just wanted to sleep.   Then I asked her to just open her mouth, I put the pill in her mouth and gave her some water. The pill popped in her mouth, and of course she threw up.  In all we had to ask the nurse to prepare 5 different pills.  By the fifth try, she was wide awake.  She peed (important as she has to pee every 2-3 hours now), and she wanted me to read a book.   It was  almost 6am by then I was standing next to Maya reading “Super Diaper Baby”.  Maya laughed so hard with this book.  It was nice seeing her laugh, but I needed my sleep as I was becoming cranky.

by 9am  the nurse came again, with another lugol pill, gosh, again I thought I had just closed my eyes.  Thankfully Kirby arrived at the same time.  We woke Maya up, she took the lugol, Kirby made her some breakfast and I left to get some sleep.   I must have been so tired that I slept from 10am to 5pm.   Maya had a good day overall.   We are just running out of ideas on how to keep her entertained.

While trying to get some sleep at the Ronald MacDonald house, i was thinking, that we have been in similar situations before where the treatment was difficult at the beginning and then  sort of calm, and then like the VOD episode, things got bad.  Of course in my head i cannot stop thinking, why is it being relatively calm now?  Maya will get Neutropenic in about a week.  We are just crossing fingers that she does not develop any complications.

It is Monday morning already, Maya continues to do well.  I had to stop writing yesterday as somehow I got very sick, a very excruciating headache and just throwing up.  I had to go back to the Ronald MaCdonald house right away after they quickly checked my vitals here.  I think it was maybe dehydration and just being overtired.  I am good this morning.  Maya is doing quite well, a happy child.

Thanks again for your support.

Indira

Some photos from Montreal -MIBG therapy

Jan 21: easy? Wrong!!! Cancer is Never Easy

[Update]

There you go! More photos to come…

It is Saturday morning, day 2 of this treatment, I cannot even begin to think about the events of yesterday.   In a previous posting Kirby said it was going to be trivial, gosh he jinxedit,  it was nothing like that.

Kirby had night duty, he was up all night, Maya and Kirby are now sleeping and I just read a posting in Kirby’s blog about Maya, my beautiful Maya, and here I am outside Maya’s room, with tears streaming down my face while her room is being scanned for radiation levels.  Yes Kirby, If the world was more like Maya

I have not really posted much in a long time, maybe because I want to run away from this cancer world, and now that I am writing there are so many emotions, so many things to write about, but for now I will write about the events from yesterday.  I do not usually like to write sad postings, but yes cancer is sad and never easy, and Maya if one day you read this, please know that you are such a fighter, You make your mom and dad so proud, and Yesterday even though you hated me, and screamed and yelled, I was so damn proud of you.  I was in awe of you, you speak your mind and tell it as it is…. I need to learn that from you Maya.

Maya got prepared for the catheter with benadryl, and gravol.  We know her better and asked for ativant as well, it was denied.  A few minutes before the procedure, we explained to Maya what was going to happen, she freaked, the fear on her eyes, the trembling, it was hard to watch.  She would not even open her legs, she lost it, screams of terrors, looks of terror, hard to watch.  Ativant was ordered, she calmed down but when they tried to insert the catheter again, she lost it again.  she would scream and say “Please, listen to me, all of you just listen to me, you can put it in, just give me sleeping medicine”.  Maya trust me we asked for it, but in the hospital world, that implies calling an anasthesiologist, involving other departments and it gets complicated, you will know the word burocracy when you grow up.  Maya we tried to be strong in front of you and sometimes stern, but your mommy and daddy were crying with you, inside and out.  Kirby and I took turns to quietly weep.   When we asked for the sleeping medecine, the response was “nobody likes a catheter, all children fight it”.  Once it was in,  I could feel Maya felt so violated, so angry.   She wanted to pee, but of course she needed to go to the toilet.   Every time she peed she would scream in pain, and shake her legs.   “Please Maya just go in the bed,  the pee will go in the tube, do not move, you are hurting yourself”, she would  respond crying “You are not the boss of me”.   At some point she went to the bathroom, and locked herself in, she wanted “privacy” and kicked Kirby and me out.  We could hear her from outside, she was screaming, crying, ranting.   From outside my thoughts were, why do we put her through this? would this therapy work? .  After a while she called me in, more like she ordered me in, she would cry again and say that she hated the tube, “please take it out”, “I hate this hospital”, “the doctors here are dumb, and the nurses too, they do not know anything”.  She kept on removing the ancher on her leg which held the catheter tube, she said it needed to go a bit higher, oh boy she was right, it was not placed correctly and with her direction, it was put a bit higher, she felt better but still would refuse to go pee.   Every time she went pee, the pain would come, and she hated me, “You are the worst, meanest mom ever, get out”.  Oh Maya, yes I would feel like crap too if strangers came and put a tube inside me, and I would be angry, and in a way I am thankful you were able to release all that anger, even if you hated me.

By late afternoon, we noticed Maya’s urine to be a bit pink, with Maya still refusing to pee (weird as with the catheter she would not have had the need to go pee), we noticed blood cloths on her urine, her screams and pain, reminded us of the horrible hemorragic cystatic Maya had after a round of cyclophosphomide.  Kirby and I know by now to be extra vigilant, to advocate for Maya, to ask and push for additional information, for more care, for more precautions to be put in place.   They said, that Maya was moving too much and perhaps the cloths were from the stress of the catheter inside her bladder.  The plas was to deflate the ballon push the tube inside a bit more and inflate the ballon again.  More ativant, benadryl and gravol were given.  Maya was feeling “oooozy”, and sleepy,  but when the time came she put on another fight, and she vomited.  Of course everyone freaked because of radiation contamination.   Our wonderful  doctor (Dr. Lambert) came back to the hospital late at night to scan the room and the people for possible contamination.   The people were good,  the sheets and everything that Maya touched, were put in plastic bags and taken away.   After the procedure was done,  Maya seemed a bit more comfortable.  Kirby and I were exhausted.  The room right across Maya was empty so the nurses offered the room to us to sleep as we could not be in Maya’s room but in a chair outside her door.   I went to sleep for a bit, but around 1am Kirby woke me up. Maya had vomited again, and there were big cloths of blood on the tube.   Maya continued to freak when peeing.

Once another Neuroblastoma (NB) mom told me that she never knew deep fear until NB came into her life.  I share that feeling.  Fear paralyzed me, “what are we doing to Maya?”, “Is the MIBG radiation burning her bladder?”, terrifying thoughts crossed my mind.   The doctor was called again, the plan was to pull the catheter out, but how did  we ensure Maya got rid of all that radiation, she needed to pee to get rid of the radiation. She cannot have pee in her bladder for too long, it is too dangerous.   So the catheter came out, Maya was put in diapers and we needed to change them every hour.  Of course an hour passed by and Maya’s diaper was dry.  She was never going to go pee on her diapers, she has been out of diapers for several years now, so we had to wake her up and make her go pee.  With hemorragic cystatis every time Maya went pee she would be in excruciating pain, and she would pass blood cloths.  So I am pretty sure, Kirby was holding his breath when he took Maya to pee.  Good news, she was not in pain, and no blood cloths!!!, and by this point May was so sedated that she just would say “I want to sleep, I want to sleep”

I was up by 6am, and came out of the room to find Kirby tired from all the bathroom trips, and cleaning pukes all night long.   A good thing that had happened overnight was that Maya was now taking her lugol (to protect her tyroid)  every 4 hours with no problems.  This is a disgusting black liquid, I am not sure how kids take it.  Maya was puking every time she took it.   The lugol was being put in a capsule.   Maya is now a pro at taking pills, so it was  soooo much easier for her and for us.   I took over the morning shift and Kirby went to sleep.  Dr. Lambert was back at the hospital before 8am.   They were not sure what was causing the blood cloths, it was too soon to be hemorragic cystatis.  But with Maya, we never know, she has been known to be extremely sensitive to the treatments she has received.

And so it is almost noon on  saturday.   Maya woke up at 9:30am, she was a different girl from the nigth before.  She was happy, asked for pancakes.  I went to the kitchen to make her some, when I came back, she had taken a urine hat next to her bed, and sat on it to pee :-).  Of course it was a bit of a mess,  and we had to dispose of all the things she touched and bed sheets, but it was good to see her doing well. I thought to myself “what  a mess”, but dared not to say anything, as Maya was doing her best to help, and I did not want to be called “ungrateful” by her :-).     She can now pee with no pain, and the blood in her urine is going away slowly.

What a difference a day makes,   what I wrote does not even come close to all the tears, the panic, the fear, the anger that Kirby, Maya and I endured, and more so Maya.   But today is a new day, and with a new day there is new hope.  We wish for things to go smoothly now.   Iodine 131 has a half life, so Maya’s is only half as radioactive as yesterday, and we are now inside the room but separated from Maya by a lead shield.   Maya remembers she was feeling “ooozy” last night and that she had to kick her legs when she peed because it was painful, but she does not remember much else, she was too drugged.

As for Kirby and I not being able to touch Maya, well… let me tell you that yesterday we were inside the room constantly, taking Maya to the washroom, cleaning her vomits, holding her while they tried to insert, and fix the catheter.  Yes we wore a gown, and gloves and booties at all times.   I was not going to let radiation stop me from comforting my daughter.  Now that I think about it, it sounds silly, but at the time given the situation,  it was the minimal we could do for her.

Dr. Lambert told us today that Kirby and I did good, that yes we were in contact with Maya a lot, but we did well.  The night nurse would not come close to Maya unless she rolled the lead shield with her. I would let Kirby explain the details of the amount of radiation we received and how it works and how we are not worry about it.  But if you happen to see our family turn into spiders do not be surprised :-).   Maya asked over and over again why she needed the catheter, we talked to her about radiation, and used Peter Parker from spiderman as an example, and Maya said “I wonder if after I finish this treatment i would be crawling on the walls like spider man” .   Yes Maya we hope so too 🙂

Thanks everyone for your loving words and support, keep sending all those thoughts and prayers our Way and on the way of all those innocent kids fighting cancer.

If the World was More Like Maya

It’s 2 AM, Saturday January 21st, 2012. In 5 months to this day, we will be somewhere north of the arctic circle, to look for the illusive (to us southerners) 24 hour sun light. But right now, we are coming to a closure of a long and somewhat difficult day. The details are not that important for this posting.  However, I do want to share what I really think about Maya.

Or it is that I don’t know any neuroblastoma child who is not extraordinary in their particular way.  I think they are extraordinary because they are closest to who We really are when they are under such a paramount fight for survival; when even the little bit of social program they have had time to acquire, has no room in this epic battle.  These children’s battle can not be any more raw, can not be stripped away more and can not be any more heroic.  And in these children, I see who we are,  what our true nature is. And through them, I see that we, the dominant species on this fragile planet, have hope.   Is it wrong for me to think that we should all be more like these children?  Is it wrong for me to think that we should all be more like Maya?

If people on this planet were more like Maya, firstly we would hold more grudges.  People all over the world would pout and “will never forgive you”.   Without a doubt there would be more international incidents.  Can’t you see it?  With Latin flaire for drama and korean political know how (IE, Kim Jong Il), of course there would be more international flaire ups!  However, inevitably, she will want to be your friend and play. Vengence is not part of her reality.

Mr Presidents of the world, won’t you listen just a little?  International policies can only be better for everyone if there were more fart and burp pranks in the middle of meetings.  Of course then, some leaders will start coming to these meetings more “prepared”.

If people on this planet were more like Maya, everyone would be stingy beyond belief.  No one would ever throw anything away. So, we would all conserve and be more green. And yet paradoxically, she would be generous to a fault and share everything that she has. World hunger problem would not exist.

If people on this planet were more like Maya, more people would demand to be loved!  She will drive you crazy with her demands. She is stubborn beyond all reason and never appologetic. I find that refreshing. Always stick by your guns! She can be very tiring, but she’s worth it, don’t you think?  Are we all not worth it?

If people on this planet were more like Maya, more people would know to bare down when one needs to bare down.  When things are tough, when things are bleak, when everythings seems like it’s falling apart, they would know how to “tighten their belts” and push through. She has the constitution that would shame a full grown man. And she would drop the grown man while being stoned out of her mind on Adavent, gravol and benedryl, as she was just hours ago.

If people on this planet were more like Maya, they would know ‘joy de vivre’.  Regardless of the fact that she’s been cut, poked, poisoned and bled,  and many a times she’s been so ill that that she could hardly lift her head off the bed, she will wake up with a smile on her face.  She will engage her life fully and fight to stay up late to experience her life, just another minute.

While she may cry in fear, be suspicous of the adults in the hospital who often hurt her,  including her parents, when the pain stops, she will want to play.  She will not dwell in her past pain, she will not dwell on her disease, she will not dwell on what she has lost, she will focus on the joy that is her life.  And to two people who put her through these therapies, the pokes, the pills and all the indignities, she will even love them back.

And as her father,I can not imagine being more proud and grateful for such a child.  She amazes me.   What problems I may have to deal with seem trivial in comparison.  She lives in the inspired realm.

Yes. more people should be like my awesome little girl Maya. And that’s just how I see it.

Let’s do Time Warp Now

Well… we’re here, at St. Justine’s in Montreal. It’s been a typical hospital day. We hurry here to wait. We arrived around 1 PM and sat around as per usual. And really, there wasn’t much to do. All in all, Maya got a physical and had to give up wee bit of pee.

And we got to “check-in” to our timewarp machine. Well,it’s a typical hospital room, except the room is a lead box. Ofcourse, you wouldn’t know, if you didn’t know. It’s a timewarp machine because tomorrow, we’ll be tightly bound to this room and time will become a blur. The only thing that we’ll note the passage of time is that each day, we’ll be able to move a bit closer to Maya. And in few days, we’ll all become a bit stir crazy. So, what’s in the agenda for the rest of the week?  Jeez, we understand this routine, already.  We’ve done this many times before.

There will be some excitement tomorrow as we get the “stuff”. And Maya will get a folley; AKA THE catheter. That will be tough. Other than that,it will all be anticlimatic, so I think. Early afternoon,Maya will get the MIBG 131 which will be administered over 2 hours. Maya will stay in this room by herself for the first 24 hours. Indira and I will fight over the much covetted recliner outside the room. We may be allowed to enter the room for minutes. And we’ll wait for time to pass. In terms of response from Maya, she’ll be pretty bored the first day and on second day, she may become lethargic due to minor radiation poisoning. She is expected to bounce back within a day or two.

Maya has a folley so peeing won’t be a problem. The other stuff actually has to be put in a plastic bag and also put in a lead container to be disposed in some way. I suspect that they’ll just burn it. Also, the room gets covered in plastic. Really, the only reason is so that there isn’t any fluid that will come into contact with the room and stick around. OK… whatever… after all,1/2 life of radioactive iodine 131 is, I believe 13 days or something like that. Dangerous dose of radioactivity is minimal. And of course, the dose is nothing close to what Maya is getting.

Any ways, we’re here and will keep you all posted on the timewarp here. We’ll post some pictures, as that may give you the best idea on what we’ve got here.

Wish you all well,

 

Friday 12:30

We’re sitting outside the room right now.  The MIBG will start in 30 minutes or so.  Maya is in a middle of her melt down right now.  She did not like the catheter at all.  She freaked, and this is even with adavent, benedryl and one other meds.  Strong constitution.

She’s in the washroom now angry. Anything and anyone is in her cross-hair.  This is the worst part of the whole week…. cross fingers.

Happy 6th Birthday Maya!!!

Happy Birthday Maya.  Yup, she is a big girl now.  Maya’s Birthday was on Jan 5th.  Since it was still winter holidays, we decided to have a small celebration for Maya on her birthday and have the party a bit later.

The kids had a great time.  Hope, Maya’s class mate said it was a “groovy cool party!”

And our thanks goes to all those who took the time to come out to celebrate with us.  It was also nice to see Maya’s Gymbore friends. They are friends Maya made during her Gymbore days.

So, thank you for helping to make Mayas’ day! It means a lot especially since it meant driving in the prime traffic time.

Take a look.

Frank

Who’s Frank?  No not Frank, but frank.  I wanted to put down some frank thoughts. But sometimes, I hold back. Why?  Who knows…may be the sense of nakedness.

Cancer is a weird disease.  Rather, being put in a situation where you are looking down the throat of a certain beast, a certain reality does something to people.  On one hand, even without a possible catastrophic event, some people -even us- run from their  reality.  Others, -like me- require a real kick in the head to focus on what’s important.

You know that silly didactic tale about a jar and small, large stones… well it’s true.  But that’s not enough.  At least for me.   And it’s taken a heavy cost for me to come to some realizations.

We find ourselves in a situation where the certainty of our daughter’s future is lost.  But it was never guarenteed.  And yet, it’s caused some pretty heavy toll on our family.  Indira suffers, Taylor suffers and I suffer.  Indira has her issues, Taylor his and I thrash about trying to keep things together.  And somedays, I can’t keep it together.  I won’t speak for either Indira and Taylor. I can only describe my own experiences.

So what is it?  Maya is well right now, but we live in constant fear.  The odds are stacked against us; this we know very well.  And yet, there’s nothing we can do, but do everything possible to give Maya the best odds.  Sometimes, it means doing things that goes against your intuition.  Why would  I give my kid mustard gas?  Yet we do, except we call it chemotherapy.  Why would we expose our child to radiation that will compromise her more, even when we know that we’re damaging her now and possibly forever;  the stats says so.  We are forced to face the fact that we have no control over our lives.  Do we ever though?

And when we are faced with our childs’ mortality,  we face our own mortality.  And  what do we do?  Go to work…  make dinner…worry.  And be angry; angry that we have to go through this.  Angry that the doctors don’t know how to deal with this.  Angry that both modern medicine as well as cancer is hurting my child; my beautiful and just incredible child. I should think if there is any justification to anger, my anger is justifiable. Yet… it is also very destructive… and there is no solace in anger.  So, I push anger away, even though it wants to embrace me. I put on a brave face, though at times, I can only muster a half hearted attempt at that.

What about fulfillment? What about doing something worthwhile?  What about doing something or being part of something greater than yourself, ourselves?  Where do these things fit in?  Did we not all have these dreams? of making a difference?  Or is this some perverse socio-cultural programing which we were all inducted into?  Does it take a kick in the head to think about these things?  Apparently so.

So, this summer trip represents breaking out of our present circumstances. It’s an attempt to gain some degree of control over things we have no control over. Let go! There’s more to life than worrying what’s around the corner.  There is now!

It’s my attempt to do something worthwhile; something that feels right!  Really worth while.  It will be for me.  It is for Maya and Taylor. I want her to explore this great country and marvel at it’s wonders.  I want to hear Maya giggle in delight. I want Taylor to see the country, but also, want him to see a way to deal with a profound events in one’s life.  Hopefully that is, with some dignity, some stoicism, with a dash of WTF, even if one does falter at times.  Get up and do the best we can. That’s all we can do.

I have to tell you a little story.  It’s not much really. At times, Maya will be playing or something, preoccupied.  I will say, “MAYA” in an affirmative tone, the tone that says, “Hey, I have something to say to you”.  She’ll often roll her eyes and ask me “What?”  in an impatient or in a resigned voice “What, daddy?”.  And at that moment, that silent moment, I can only radiate my complete love for her.  After two heart beat of impass, we’ll both break out in a laughter simultaneously.  I don’t know why it is funny, but at that moment, it is just hillarious.  And most importantly, my love is communicated.  She gets it. And that’s it really. I would like this trip to provide us with opportunities that I can communicate my love for my children. At the end of the day, it’s all we ever have; these moments.

It seems to me, I find myself in bed way too often, way too soon, always wondering, although I hardly get 5 hours of sleep a day.  “Gosh, it’s bed time again…”  And I ask myself, what I’ve done to push the agenda of doing something greater than myself today.  Often it’s not much.  Today, it might be just this blog posting.

But each day, I ask this question and I am hopeful to say I’ve spent 5 minutes pushing in some worthwhile direction.

  • Did I make a new connection to make this website I am working on a reality?
  • Did I come to a new understanding of how this website will happen?
  • Did I make even a small change?

A drop in the mighty river Ganghis it might be, but each drop counts towards it’s greatness.

We have this day!

Happy New Year

To one and all. So… we have 11 months and 20 days or so before the end of the world, as we know it.  Rack up your credit card folks, cos it’s all over on Dec 21, 2012.

Sorry Taylor, no birthday present for you this year… Taylor turns 17 on Dec. 22nd, 2012.

Maya continues to do well…. She’s grown quite a bit in the last little while.  She’s also lost a couple of teeth and about to lose a couple more. It’s quite cute.

The Christmas in our house was a quiet affair.  Yes, we spent too much money, but it seemed not worth the hassel to worry about that.  I was hoping to have purchased an RV in time for Christmas, but that did not materialize.  Oh well… And the reason for the RV?  We’re going to take minimally a couple of months off next summer travelling around.  The idea really started with this video, which some of you have seen already.

This video was taken last July, during our visit to the National Cancer Institute in Washington DC.

A new travelogue is being constructed right now for our trip.  What will our trip look like?

  • two motorcycles (my BMW with a sidecar for Maya as well as the Ducati)
  • An RV
  • And slew of people to join us parts of the way.  Starting point will be Anchorage Alaska.  We’re planning on being there the last week of June.  We want to catch the 24 hr sun. Then…
    • Mt MacKenley, Beaufort sea
    • Internal and Coastal BC
    • Yellowstone
    • Redwood forest
    • San Fran
    • Nevada (Area 51, here we come!!!)
    • Utah (Valley of the Gods)
    • Arizona (Grand Canyon)
    • New Mexico
    • Texas (See Ara and Spirit , if he’ll have us)
    • Louisiana for crawdads
    • Florida for the everglades
    • back up North hitting every freeaak’n beach
    • Bay of Fundy for the longest tidal area in the world
    • gros morne national park
    • anywhere else??

So, let us know what you think.  We want to know if you think we should go to any specific area worth visiting.   There are no dining cars on a freak’n side car.  We’ll keep you posted in the new travelogue section.

As you know, we’re heading to Montreal in a couple of three weeks for MIBG (I-131) therapy to Montreal, St. Judes Hospital)  And that has meant that Maya had to get a new set of tests done.  Getting these tests are always stressful, if GFAR is involved.  GFAR is the kidney test and unfortunately, it involves a “pokie” for Maya.  Maya hates needles and who can blame her?

However, this time around when Maya did find out that she was getting the GFAR test, in the lab, she swallowed hard and got on with the needle.  Indira tells me that Maya did not cry, although tears streamed down her face.  We were very proud of her.  On the other hand, I found it incredibly sad.  Such little things are part of neuroblastoma, which we have to chalk it up as part of the deal.  Whatcha gonna do?

Anyways, we wish everyone a very happy and blessed new year.  We hope for the best too, but intend on living this year to our absolute best!

The Kim Family.