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Harry
| 24th November 2006
Disclaimer: Even though a “blog” is supposed to be a ‘Personal
web Log” I have wondered whether I should post the stuff in this
blog because it is maybe too personal. But then again,
my blog started off addressing friends and I have never really felt like
it has changed much as I have written it. Sure, I have gained quite a
few more readers, who I don’t know over the year I have been doing
it, and have had some links from Russell’s HARD NEWS which have
increased the traffic, but that hasn’t fundamentally changed my
view of it.
I still feel like it is for my friends, and if anyone else wants to read
it, so be it.
And this blog is about Harry, who a few people, who are strangers, have
kind of adopted online anyway.
I was concerned also because the blog is often just so trivial and flippant
and this is blog is so NOT like that.
But then again, the stuff I write about Harry, even if it is funny, has
a serious heart or at least a true heart and is always to some extent
very serious too..
So reader beware: this blog is a very personal weblog that has a seriously
true heart and low level flippancy (if you want to read something flippant
check my blogs on politics or something that really doesn’t matter)
If you dont know Harry, links to blogs about him are below:
Pre-birth:
Fatherhood
Antenatal
Class
Naming
the baby
The
birth:
A nice man Cometh / it's Alive!!
Harry
Harry's Smile
Harry Crawls
...................THE
TROUBLE WITH HARRY
Harry is crawling like maniac now, not a mad maniac, but kind of a mincing
one.
Gay, kind of mincing. Not that I am homophobic, it is just that while
I am at work I hear from Mrs K, how he loves going to Smith and Caughey’s
and how he enjoyed it at the hairdressers with Mummy, and I fret a little.
”Where the balance!” I say. imagining a night with my friends
watching boxing.
Mind you I was encouraged by his delight recently, at the portable drill.
A few weeks ago as Harry crawled with his superbly mincing gait towards
me, in the dim light of the corridor and I saw something funny in his
eye. I had glimpsed it before, a phantom whispy thing, but now I could
see it clearly.
A white thing.
I didn’t like it.
I told the wife and she said she had seen it too.
”Take him to the doctor.” Said his Dad.
”Don’t worry about it.” Said Mum.
”It will be nothing..”
But he had a fairly deep cough so a couple of days later he went to the
doctor anyway.
The doctor didn’t like what she saw in his eye either and we were
soon scheduled an appointment at an eye specialist.
I was on the motorway when my wife called me after the check up.
She offered up a superficial report on the examination and then there
was a silence, I knew from experience, the pause was a sign she was upset.
I would have to prompt her to speak;
”What is it? What’s the matter?”
“the specialist said…… it could be a tumor.”
That final word hit my as solidly as a block of stone, my head reeled
and I pulled over to the side of the road.
”A Tumor?”
”The eye specialist said that the worst case scenario is that it
could be a tumor and she wants to take him into the hospital for a closer
examination.”
And so it began..
The trouble is with ‘worse case scenarios’ is that,
as a parent, somehow that is all you can think about.
It doesn’t matter how many times someone will say;
“Don’t worry mate. I’ll be nothing.”
You can’t help but imagine what will happen if things turn out badly.
The examination was on the following Monday morning at Greenlane Hospital.
Even the fact that Harry had to go under a general anaestetic was a worry,
but the nurses and everyone were uniformly excellent, so we were sufficiently
reassured when they took him away.
Then the wait. Or what would be the first of several such waits as this
thing panned out.
Waiting for news of this sort is terrible. Nothing can distract your mind
from pondering the worst. Womans Day articles that are usually wonderfully
distracting at the traditional time-dragging zones, like the doctors room
or at the airport, provided nothing.
The combined lives of Katie, Tom, Nicole, Karl or even Brad and Angelina,
that are either; fabulously exciting or self-absorbed and vaccous, received
barely a fleeting glance…
Flipped through and discarded in seconds..
The eye specialist said she would come and tell us as soon as it was over
but the time dragged on well past the estimate she had given us, and I
knew the news wasn’t good when she told us we should “go downstairs
and get comfortable before we have a chat.”
Never had ‘getting comfortable’ sounded so frightening.
She confirmed our worst fears.
Harry had a tumor in his right eye.
The tumor is called a Retinoblastoma that only occurs in children before
the age of three and the most likely treatment option was to remove the
eye.
But, the more terrifying thing, the thing that seemed almost inconcievable,
was the chance it had spread somewhere else in his body, and because the
eye is connected directly into the brain through the optic nerve, the
most likely thing was it had spread to his brain.
We reeled, again.
A lifetime without it and now suddenly, we seemed to reel every couple
of days.
The specialist explained (very well.very professionally) the options/scenarios/likely
outcomes and treatments. And still, we reeled.
Harry had cancer. How could that be? He is only ten months old and his
body seems as pure and healthy as a body could be.
It just didn't seem right.
The next stage was a range of tests including an MRI scan, but because
of a misunderstanding, they were finally scheduled almost a week away.
So we were left with cancer in Harry’s eye, the possibility it was
somewhere else and a wait for what seemed like forever, until the next
stage.
I don’t think anything can really prepare you for this sort of thing
and we have gone though every sort of emotion and thought process imaginable,
trying to fathom it all out, to make sense of it, to quantify it and work
through the situation..
As someone who vaguely believes in the concept of karma, I have to wonder
exactly what we have done wrong deserve this..
I mean I have had what I guess could be called a ‘colourful life’
but I have never really done anything too awful.. The occasional hapless
drunken attempt to convert a car to drive home in, when I was younger
but nothing harmful..
I don’t think I’m too bad a bloke.
As for Mrs K, her life is almost completely blameless.
If you had a party for people SHE had offended in her life you could host
it in a toilet, and even then it would be a fizzer.
and what exactly has Harry been up to receive a bung eye.. His nappies
can smell awful but …..
But no one ever really deserves somehthing like this, it is just fate
or the lottery that the whole mess of things we call life is. You just
have to try and cope and get on with it, roll with the punches and do
your best.. (and, other cliches).
We have been forced to go some pretty dark places and to contemplate the
unthinkable; Harry dying. Or maybe something even worse; Harry forced
to endure something painful and horrible - then dying.
But you can’t dwell on that all the time, because it’s too
awful.
You develop a kind of survival denial. Erect barriers around the truth
because if you dwell on it and sink into that kind of thought pattern,
it will just consume you.
Not that you ever really forget about it, and I guess, in a sense, denial
is the wrong word, because you are always processing the facts or THE
FACT on some level, it is just not always on the surface.
Sometimes, a lot of the time, you even feel completely normal, sometimes
even happy. It’s weird.
Occasionally you forget about the obvious for a long while so that when
it comes into your mind again, it is like you have found it anew and it
just seems completely surreal.
A friend organized a makeover for Mrs K to make her feel better, afterwards
we went to a movie and then had some wine and seafood antipasto at a restaurant.
It was like our old life again pre-Harry.
On the way back it just suddenly struck me again, between the eyes.
Our son has cancer.
If it has gone into his brain, he will probably die.
Wow. I felt sick.
And one of the ways our friends were called on to help us out was to distract
us, even if it was only for a while.
One night Mark, Rachel and Steve came to visit. Steve did what he can
do best and cooked up a storm. He also brought three examples of what
Withnail would call “The finest wine known to humanity”(Pinot
Noir). Which was pretty bloody distracting, believe me. We argued about
music and for a brief while, edged thoughts about Harry back a little.
Not entirely of course and a toast to him was hearty, heartfelt and full
of love.
The stadium debate helped too. I could not ignore the ludicrous antics
of a council which, when given two options to choose from, picked another
one. (Carlaw Park). So thanks due there, you completely dysfunctional
nutters. Also special mention to George Wood, who said the stadium process
has to be SLOWED DOWN.
It is said that this sort of thing demonstrates what you are made of,
well I seem to be made of water, judging from the amount of crying I have
been doing.
But crying is good.
Crying is essential.
Like most things designed by nature, it serves it’s function perfectly.
When emotions overwhelm you, something has to give and you cry, and I
feel very sorry for people who can’t cry, because all that stuff,
all that tension, those powerful emotions have to go somewhere, and as
they say – ‘better out than in’.
So I cried with family and friends, cried alone in the car and cried late
at night when I couldn’t sleep.
Colin Meads would have been appalled.
Once, just before bedtime I was set off by the sight of Harry’s
toys strewn on the floor.
They suddenly took on so much “Harryness” and emotion, and
looked so desolate and sorry.
Anyone who has watched ‘Toy Story’ will know how lonely they
would be, without their little buddy.
Harry’s current favourite, is the perennial kiwi classic - the buzzy
bee. It’s noisy clacking brings squeals of delight when parading
past on the floor. But without Harry it would swiftly become an iconic
annoyance whose distinctive infernal racket would see it thrown on the
toy scrapheap forever. Destined to clack no more.
No wonder I cried, how bloody sad.
People all over the place have been praying for us. My mother in law is
a Headmistress at a primary school, so we even have the catholic church
on our side.
Even I have been praying.
Not to the big guy with the white beard, who lives in the clouds in Monty
Python skits. That would just be too hypocritical.
Ignore him for years and suddenly tap him on the back and say;
”Excuse my bro…Sorry I haven’t been in touch..but I
need a bit of a favour..”
No. My prayers have been more like a fathers anguished scream to the cosmos.
Like the Edvard Munch painting, but with crying too.
and, a plea to the universe’s sense of fair play.
Come on man, Give us a break!
And in our darkest hour, when things just seemed too impossibly ugly and
deparate we have simply mumbled to each other that timeless mantra of
the disgruntled child;
”It’s not fair..”
as though someone can come along and sort the whole mess out..
And meantime, in the middle of this maelstrom of emotion, love and anguish
Harry has been... well, just Harry.
Completely normal. The gorgeous, happy, sweet little kid he has always
been.
If anything, if it is possible, he has become even cuter than before.
He is babbling more than ever and he is now reacting more to you.
When I come home he scrambles, straight away, up to me, raises his arms
and bounces on his haunches for dad.
And he must wonder what all the fuss is about. The extra hard cuddles.
Waking up at night to find mummy staring into his cot....
The day of the various tests to see if the cancer had spread, my emotional
defences came tumbling down. All that being strong stuff takes so much
energy and even if you are practicing a form of survival denial, it’s
pretty hard to deny an MRI scan.
So Mrs K and I were fairly wrought by the time we got to take him into
hospital.
My wife’s parents, who have offered amazing support during all of
this, accompanied us.
Firstly, we had to go to the oncology ward at The Starship hospital and
I can tell you, visiting that place can be fairly humbling. If you are
under any illusion that you are the only ones going through this sort
of crap, go there. There were kids there with all sorts of problems. A
three month old with a tumor on her arm and various bald kids who had
obviously had chemotherapy, but played and carried on as though everything
was completely normal. and of course many parents. Parents just like us
who looked incredibly fraught but put on a brave face for the kids, even
though they may have been facing far worse scenarios than we were..
I think the wait during the MRI scan was possibly the worst time during
this whole thing for me. It took an hour longer than they first said so
I naturally assumed they had found something large and ghastly.
Then after the long walk back to the oncology ward we had to wait for
a meeting with the oncologist.
When a nurse arrived to tell us we would talk to a geneticist as well,
my heart sank.
Why would we have to speak to one of them if it was good news?
Then, when we walked into the meeting, the social worker we had met earlier
was there as well.
I felt sick. Why was he there? I hated that guy. Not personally, but what
he represented which I assumed was bad news, terrifying news.
My head was swimming, and we reeled (as usual). The oncologist started
the meeting by introducing herself, giving us her history blah blah blah.
Then she asked who everyone was, what we did etc.. etc..
You know chit chat..
In the meantime, I was going crazy.
Why didn’t she tell us if Harry had cancer anywhere else? For gods
sake..
I thought she was even going to ask us which sort of car we preferred..
Ford or Holden?
or which stadium option we liked….(Who here is circumcised?)etc
etc...
Eventually, she told us we would have to wait till the next Tuesday for
the results, because she wouldn’t want to speculate until a radiologist
studied them..
It was hideous.
Another wait. 5 days, and yet another weekend where we had to try and
distract our thoughts from the obvious.
On the Tuesday we got the results in a way that was almost an anticlimax.
The eye surgeon talked to us about the eye removal procedure and then
at the finish simply said;
”I hope you understand everything. Are there any questions?”
The ungrateful, witheringly sarcastic side of me (horribly unused lately)
felt like saying;
“Yes. I’ve got one. It a pretty good one too.. Is our son
going to die a horribly premature death because his body is riddled with
cancer?”
but I maintained some composure and asked if anymore meetings were scheduled
for us that day.
”Ah No. You can go if you like.”
I pressed on;
”It’s just that we were told that today is the day we would
find out the results of the MRI scan on his body and we would really,
REALLY like to find that out.”
“Oh Ok. I suppose I could have a look. See if it’s come through..”
"Oh. Go on. "
He fiddled about on his computer.
”ah Here it is. Ahh looks ok. I think. Ahh yeah it is ok. Clear.
That is..”
And so, even though the result was what we wanted , it was just strange
to recieve the news in that way..
I had been so focussed on this moment. The moment of truth you might say...
and to have it delivered in such an offhand manner was weird. It was one
of the most important moments in our life. I expected at least some importance
placed on it by the health system....
A meeting, some esteemed doctor (an entourage even, sweeping in majestically)
saying;
”We are please to inform you that your MRI scan is clear and your
son will live.”
We would drop to our knees and look to the heavens. There would be general
applause, someone would open some champagne, there will streamers, Paul
Holmes will shove his way in with a microphone..…
…At least that’s the way it played out in my head the countless
times I had been through the moment.
As it was we just felt numb, and tired. Sure we were relieved but the
way it happened was unexpected.
Much like our life lately really. Unexpected, too bloody unexpected.
Exactly three weeks ago all that concerned me was not having enough money
to pay some bill and the registration on the car.
Then I received THAT phone call from Mrs K on the motorway and now I am
in a situation where THE GOOD NEWS is that Harry is having his eye removed
in the morning.
It’s insane.
and when we first received the news of the possibility of the tumor I
stood with Mrs K’s father, who is a GP, in the definitive kiwi male
environment – a beer in hand around the Barbie, and he broke the
news that Harry could lose an eye and I my eyes watered, showing what
a sook I am.
A few weeks later and I am saying;
”I couldn’t care less about that eye. I’m over that
eye. It’s been nothing but trouble.”
So that is an indication of how far things have gone. How quickly the
stakes were raised, so that we were eventually worried about the whole
of Harry, not just his eye.
But now that we know Harry is safe and we are facing the removal of the
eye, I understand how stupid the offhand stuff about the eye is as well.
It’s been a great eye. It’s watched me come in to check him
at night and gazed upon my lovely wife as she gives him a feed.
It’s a beautiful eye.
The weird thing is you can see the cancer in it. It is clearly visible
there. Nature's most diabolical perversion. The devil incarnate, that
awful mutation.
The last day of Harry’s right eye was, of course hard. Another set
of emotions I would hopefully never encounter again. Fear about the operation.
Grief about the eye, but thankfully, no reeling. At least we knew what
we were here for.
Of course picking him up from the surgical ward after the operation was
awful; our child who had often seemed such a big boy recently. looked
so small on the big hospital bed, a bandage on his eye, or rather where
his eye used to be..
But, we had him back, he was still ours.
He slept most of the day, for hours and hours, and we, together with my
father and mother-in-law kept a quiet vigil by the bed. When he did wake
up he would cry and then suckle on his mums breast and then go back to
sleep.
With him wrapped tightly to avoid him ripping the eye bandages off, it
was like when he was just born again.
But around 5 in the afternoon he stayed awake for a while longer and had
a feed of some solids.
Then I got a precious little smile. A smile straight into his dads funny
face that showed me Harry was ok, that he was back..
Soon, he was crawling down the corridor like a crazy kid and giggling
wildly, the nurses fell one by one to his considerable charms and we felt
an amazing sense of joy and relief.
In
terms of cockle warming moments, that one was probably as good as when
he was born.
He was going to be ok.
The truth is harry probably won't be slowed down by this at all. It may
have screwed with our lives but he'll be just fine. He has so much spunk,
fun and life in him it's probably just as well he has some sort of handicap,
just to give those other kids a chance.
We
would like to thank everyone who has offered support and love and prayers
to us during all this ( the love TXT rules OK). Family, friends, people
have been amazingly kind. And believe me when I say that it has all helped.
Just to know someone has our back, and that people are there for us, has
been wonderful. Friends have sent us cards, flowers, toys; they have cooked
food and offered to clean our house. One friend simply sent us an email
and asked for our bank account number to deposit some ‘koha’.
Which absolutely blew us away, being – kind, generous AND practical
(The Trifecta!). Mostly people just sent their love and that was enough
because it meant we knew we weren’t alone in this, that help was
at hand.
My wife's Mum and Dad were at our side at all times through this and absolutely
there to do anything. Incredible.
But really, no one could face the truth FOR us and it was Mrs K and I
that, in the end, had to go through this.
A tribute then, to my wonderful wife. What an incredible, remarkable woman
she is.
and to think. . . when I met her that night at the Kings Arms I just thought
she was just a hot, interesting babe, who for some reason liked to talk
to me..
Shows what I know....
As for me, I just feel very, very lucky. Some people go through this stuff
and don't have a good result. They lose their kids. And I was shown what
a blessing that damn kid is and given a glimpse of my world, without Harry
(A miserable empty affair it looked like too). Nothing makes you appreciate
or realise how much you love your kids, what they represent to you or
how much meaning they give to your life more than the thought of losing
them.
and I have realised that everything in my life has brought me to this
point and that nothing in my life comes close to being a dad.
I love being a dad.
I love being Harry’s dad.
It’s the coolest job in 'our whole weird world'
..and,
.. it’s still mine.
Yay!
(Below: The last known photo of the Poo Poo Boy before he became a
swashbuckling pirate)

"Arrrgh ...Good Times ahead Daddy!"
said Poo Poo the Pirate Boy.
"As far as the eye can see m'boy!"
Said Captain Kumara.
(ps. Check out the title of my last blog. Bizzare coincidence or what?!)
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The
Jimi Page
Small minded Bigotry,Hypocracy, Rascism, Sexism, Xenophobia, Poor
Grammar - It's all here.
Also: Media, Politics, Football, Fishing, Quiz Nights and Gluttony.
About Me
Name: jimi kumara
location:
Auckland
more about me |
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