10 June 1997

A BOMBSHELL:
 

As to what is going on around me at the moment, I really don't know how to feel.

It is so hard to think that our little man is going to die.

In a week our lives have been turned upside down. On the 26-27 May I took Dylan up to Middlemore Hospital, for a chest x-ray, and to find out why he was leaning his head to the side. I was told that it was just a muscle spasm in his neck, and the fact that he was chesty was because I smoked. I was called a paranoid mother and sent on my way.

On the 28 May we took him up to Dr Donald who was concerned about his head but wanted to clear up the vomiting, which had been going on for about 2 weeks. He thought the vomiting was a reaction set up in his stomach from all of the antibiotic's Dylan had been on over the last month.

Happy with that reasoning, we took him home, only for him to get worse.

Saturday arrived and I was looking after Natasha and Lagi, while Mum was at work.
 

Dylan was vomiting blood and his eyes were rolling back in his head. So I left the two girls and Anaru with Steve and took Dylan up to the A&E in Otahuhu. The doctor was about to send us to Middlemore until I told what had happened there only three days ago, so he sent us up to Starship.

This is where our nightmare begins.

Within an hour Dylan was over at Auckland hospital having a CT scan, then after an hour of waiting for the results we were finally told what was wrong.

Dylan had a brain tumor, called a medulloblastoma.

On Monday 2 June Dylan went to have surgery, 5-6 hours later we finally got to see him. He was the most precious site I had ever seen.

Dylan was recovering fairly well and the on the 6 June we found out the tumor was malignant, with less than a 50% chance of survival.

We spoke to the oncology team who gave Dylan a 30% chance of long term survival. Steve and I had decided anything over 25% was worth a try, they gave us just that 5%, so we went ahead and Gave the Chemo a chance. Without it Dylan would have been gone in a couple of weeks.

He will have two cycles of very intense chemo the an MRI, if it is working they will keep going until he is two, then use radiotherapy.

11 June 1997
 

Dylan is very much the same today, although he is starting to drink a little bit more now, he is still vomiting.

Hopefully we will be going home on Friday or Saturday, we are just waiting for a suction unit to come through.
 
 
 
 

11 June cont.
 

Wayne and Paulette came up yesterday and took Anaru for the night, and I think they are taking him to the zoo today. So it gives Anaru some much needed attention.

He is so young and it is so hard to explain to him what is going on, although I think he understands more than we realise.

How do explain Cancer to a child when adults don't even understand it?

A very courage young man.
 

12 June 1997
 

Dylan and I went for a walk down to the flower shop this morning and brought Linda a big, bright sunflower for everything she has done for us, she has gone beyond the duties of just being a nurse.

She has been a wonderful support person, and a shoulder to lean on.

I took some photo's of her with Dylan, so will give her some copies when I get them done.

I have her phone number so I will keep in touch with her and let her know how Dylan is getting on.
 

23 June 1997

FIRST CLINIC APPOINTMENT:
 

If the chemo reaches a stage when is not working anymore then we will have to stop and just enjoy what time we have left with him. We want him to have quality not quantity, both would be better.

It will be so hard if he does die, not hearing his giggles and seeing his smiles, not knowing what he will do when he grows.

Anaru is going to feel the pain as much as any of us. He loves Dylan so much.

It is his 5^th birthday next Wednesday, I hope it goes well for him. This is all so hard to accept still feels like it's not really happening.
 

26 June 1997

Dylan started treatment today, although he wasn't well last night, we had him up at Starship last night, because he had started vomiting again, it was from the pressure from the tumor again.

Came up to 27b to get his central line put this morning, so he can start the chemo this afternoon.
 

27 June 1997
 

Yesterday went O.K, he was really sleepy while he was having the chemo, but perked up every now and then. He started vomiting about 5-30pm, with blood again and he was pulling on his line making it bleed. Really rough night, at least he is sleepy now so I can have a sleep as well. The nurses up here are very casual, so at least you feel comfortable in here.
 
 
 
 
 
 
 
 
 
 
 

28 June 1997
 

I came home today to try and get some sleep, being in the hospital really drags you down sometimes.

Mum and Sue have been over and cleaned the house up, it looks absolutely beautiful.

Dylan has been pretty good this morning, he was sick a couple of times this afternoon, and is just really sleepy.
 

29 June 1997
 

Today Dylan is a pale shadow of himself. He is really sleepy and grumpy, he's been sick once this morning. He has the antidote for methotrexate today and until his blood levels return to normal.

Hopefully he will be home on Wednesday for Anaru's birthday, I doubt it though.
 

30 June 1997
 

Dylan pulled out his central line this morning, much to everyone's disbelief.

The first question I asked the doctor was "how do you expect to keep the line in",

he just laughed and said "don't worry we're used to kids and we haven't had one pulled out yet".

So from then on Dylan was known has houdini.

He has an ordinary hickman line in at the moment, until we go home then, for his next treatment they will put another line in.

He finished his chemo on Saturday so now we're just waiting for his levels to return to normal.

Sue is putting on a birthday party for Anaru and Kerr this Saturday. Hopefully Dylan will be there.
 

5 July 1997
 

Dylan is home at the moment, until the 14^th which is when he is due for another cycle of chemo. He was only just home for Anaru's birthday which all went well. Dylan looked really gaunt and pale.

But in saying that he is doing really well at the moment and is climbing all over me as I'm trying to write.
 

7 July 1997
 

We had Dylan up at A&E at 7-00 this morning. He was having trouble getting rid of all the mucus, and we didn't have a suction unit at home, as last time we went up to Starship they wanted it so I took it, and didn't get it back.

The we had him back up there at 11-00 tonight because he was finding it hard to breath.

After having a nebulizer he was fine.
 
 
 
 
 
 
 
 
 
 
 
 
 

8 July 1997
 

Took Dylan up to see Dr Donald today, now on top of everything else he has croup.

Ended up at the A&E for another nebulizer at 6-00pm.
 

9 July 1997
 

5-00am Dylan was again at A&E on the nebulizer. They gave him adrenaline, and once again he picked up. We have figured it out that he needs to have a constant temperature,

because as soon as it drops Dylan finds it hard to breath.
 

10 July 1997
 

9-00pm up at A&E, he now has an ear infection, so he's on antibiotic's at the moment.

This is so hard to cope with at times I just feel like walking out the door and not coming back. But then I look at him and what he is going through and how strong he is, and know that I couldn't do it.

I haven't had a decent sleep for about 6 months, and feel like I'm going to drop at any time.

I just want one day where I can just relax.

Steve is really good with him and at times I feel a little jealous. At the moment all I hear about is the bike, at the moment it feels like if Dylan dies that's going to be it, I know that Steve isn't like that but with everything that is going on I feel like I'm going to lose both of them, and I don't want to lose either of them.

It feels like I don't have anyone to talk to. So I write it in here, everyone thinks that I am so strong, but nobody has actually asked me how I feel. I guess I should just say, but it's not that easy sometimes.
 

14 July 1997
 

Dylan is back in hospital. We actually thought it was just for clinic today, then at about 9-00 this morning I got a phone call to say he was having another cycle of chem.

He will be getting another line put in this morning and starting treatment tomorrow.

This is second cycle of chemo and after this he will have an MAR. to see if the treatment is working.

God I hope so.
 

16 July 1997
 

Dylan actually had a porta-cath put in which is beneath the skin and each time he has treatment they put a needle through the skin and into the port.

He goes for his scan on the 28^th and then we will have to wait a week for the results to came back, so it is going to be one hell of a week.
 
 
 
 
 
 
 
 
 
 
 
 
 

2 August 1997
 

Change of plans Dylan went for his MAR. yesterday. We were up at the hospital at 9-30am as stated, went down to MAR., at 10-20am and sat there until 11-45am for him to go in.

He came out at about 1-15pm, everything went well, so now we just have to wait until next Monday for the results (4^th).

If all goes well Dylan will be back in on Monday for another dose of chem.

If not I guess we will be coming home.
 

4 August 1997
 

Well we got the results, and it was neither good or bad. The tumor hasn't grown but it also hasn't got any smaller. Steve's Mum and my Mum came up to the hospital with us, Trish was bouncing around the room, I was relieved, but in the back of my mind I am still thinking he worst, but still keeping positive.

The plan now is to give him two more cycles of intense chemo then another scan, if it is working then they will tone it down until he is two when they will treat him with radiotherapy. He starts another cycle tomorrow and then hopefully we will be home on Sunday.
 

5 August 1997
 

God this is so hard to deal with at times it just feels like a dream, but then when you do pinch yourself you realise that it is reality.

We are back in room 2, Campbell is in here at the moment, so at least there is someone to talk to.

Dylan was really happy when I saw him today, Steve is staying in with him tonight.
 

11 August 1997
 

Well my birthday came and went, I share that day with Campbell, so Sandy had baked us a banana cake and brought it up, Campbell is going home today, hopefully we will be out of here in the next couple of days, just waiting for Dylan's levels to come back down.

He has a naso-gastric tube at the moment as he isn't putting on any weight, so he is having overnight feeds.

Steve and I have to learn how to put the tubes down so he can have the overnight feeds at home as well.
 

18 September 1997
 

Well a lot has happened since then and now.

We found out on the 16^th that our little man is not going to make it. The chemo has done nothing the tumor is growing again, as well as another and he also has three cysts, which could be drained.
 
 
 
 
 
 
 
 
 
 
 

18 September 1997 cont.
 

Scott talked to us about radiotherapy, all of the side affects. We had a 30% chance it would work, but Dylan would have still been a vegetable, and there was no guarantee that the tumor wouldn't grow back plus there was a 70% chance that he would get more.

So how do you make a choice like that do you put your child through more hell just so you get a few more days with them or do you just let go.

It is one of the hardest choices to make.

Steve and I decided together that we would rather enjoy quality time with him pain-free, and happy, rather than in hospital sick and miserable.

The hardest part of this whole thing is going to be to tell Anaru. He loves Dylan so much, and this is going to break his heart.

It will Dylan's 1^st birthday on the 27^th so we are planning a big party for him, John is going to put an umu down. The doctors don't think that Dylan will make it to Christmas, so we're making the most of the time we have with him.

He is a strong little boy and an inspiration to all. He can't walk but has already taken more steps than most of us, are ever going to have to make in a lifetime.

He is an example that life is worth living, not giving up on. I know that he is going to go through a lot of changes before he goes.

I hope he is not in any pain at the moment. He is on paracetamol 4 hourly at the moment, once that has no affect then he will go onto morphine.

Each wave, each smile is just an overwhelming sense of achievement, not only for him, but for us as well.

The hardest thing about all of this is that Dylan means so much to so many people, he was a very wanted baby and his name has a lot of meaning behind it as well.

Trish wanted to name Steve's brother Rob, Dylan but was basically told not to, so we decided to name our son Dylan for her, and Trevor is my Granddad's name.
 

29 September 1997
 

Dylan's birthday was awesome. Dad, Nana, Jo, and Renee came up, and Cherie came up for about a week as well.

400 balloons later everything was perfect.

We got $180-00 from everyone as we asked for money not presents. There was heaps of food and I'm pretty sure that everyone had a good time.

Now onto the funeral arrangements, I just don't know what to do.

Nobody wants to know about it, like it's not going to happen or something.

I just feel that if I don't get it done now when the time comes it will be taken out of my hands.

Trish brought us a video camera for Dylan's birthday so we got some pretty good stuff on tape.
 
 
 
 
 
 
 
 
 
 

5 November 1997
 

Well our little man is now on morphine twice a day, sometimes I actually wonder if it is doing anything at all, then other times he just bounces of the walls.

He's vomiting in the mornings now which is a sign of increased pressure from the tumor.

He seems pretty happy, but then he can't tell us if he has a headache or not.

We had a family portrait done the other day, it turned out really good so at least now we have a picture of the four of us.
 

7 December 1997
 

We took Dylan and Anaru to Rotorua for a week thanks to the Child Cancer Foundation and Andrew Thompson. Everything was perfect except for the fact that we forgot Dylan's much loved blanket, so he wasn't a very happy chappy.

We went to Wakarewarewa, Anaru moaned while we were in the thick of the steam but as soon as we got to the boiling mud he really started to enjoy it.

Apart from that we couldn't do much of anything else as it rained the whole time we were down there. Dylan loved the swimming pool and practically lived down there.

The only day that was fine was the day we were coming home, so when mum came down went up the gondolas and took Anaru down the luge, then we out to hells gate.

Dylan was the best he had ever been down there must have been the sulphur.

We came home today, and found out that Campbell had relapsed.
 

12 December 1997
 

Campbell died today. We saw him yesterday thank God.

It is had to think that we are going to be in this position very soon, and I'm not looking forward to it.
 

17 February 1998
 

Took Dylan up to clinic today, it's funny but it's almost as if it is his goal just to make it to

the next clinic appointment. Several times we have been up there and they have made another appointment, and then said that the doubt if he actually made it till then. It seems strange that we won't have to come up here again, after living here for so long.

Dylan ended up in Starship on Boxing Day and ended up staying for three days for fluids.

He was really sick, but we figured out that he just missed Anaru, so we took him out on the boat for a week.

Halfway through the week he ended up vomiting everything he ate or drank, and has started to lean his head again, so not long now.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

27 February 1998
 

This is it.

At 11-00am Dylan started going blue, from lack of oxygen. He has been chain stoking for the majority of the day. Gwen came to check on him and didn't want to leave as she knew it would be the last time she saw him alive.

Dr Donald came down at about 1-30pm and told us we had about 6-8 hours left with him.

But Dylan having a mind of his own died at 3-00pm, peacefully in my arms where I wanted him.

During the morning Dylan was still responding to us, but at about lunch time he slipped into a coma.

I was actually on the phone ringing everyone to tell them that Dylan was going t go at any minute, when Trish called my name and said " Shona I think he's gone", they were the words I was waiting for, but dreaded to hear.

I just threw the phone down and grabbed him off her and looked at him and said "don't you do this to me you little shit", because I had wanted him in my arms when he went. At that Dylan partly opened his eyes and took his last breath.

I had got my final wish.

Mum had gone to pick the girls up from school and Steve had gone with her to pick up his prescription. The last thing I wanted was for Steve to have an asthma attack and have no medication.

I saw the car pull up outside, and took Dylan out to meet them, both Mum and Steve knew that he had gone.

Dr Donald came down, to issue the death certificate, and helped explain to Anaru what had happened, who thought Dylan had a broken heart, and I guess in a way it was.

About an hour before Dylan died he made a noise that sounded like he was crying. It broke my heart to hear that noise and I will hear it for the rest of my life.

It was almost like he was saying goodbye.

I love you my little Angel goody.
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

19 April 1998
 

To my Angel up above

I hope my darling you are well

We miss you bub

Help us to go on

It is so hard here without you

We see your face in all your pictures

But slowly you are fading

The memories are still there

And always will be

But your face is blurry

Help me let you go

I'm sorry for any pain and grief

Please forgive me little man

I wish you were here in body as well as spirit

I can't feel you around me I wish I could but I can't

Honey don't be mad with me

I did what I could to take away your pain

I could feel it to

If I could have

I would have taken on every little bit of the battle

And fought it for you

Everyone misses you

Please look over Anaru

And be there when he needs you

He loves you so much

Mummer and Dadda are trying little one to help him

Can you help him to

Mummy brought you a jacket today

You would have looked so beautiful in it

I miss your smiles

And your little hands moving to be picked up

Everything about you

Down to your little nose

That always had dirt or chocolate right on the tip

Rest easy our little angel

Only lent to us for awhile

We all love you

Mumma
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

23 August 1998
 

Well my darling it is nearly 6 months since you left us. We are all doing o.k, but it would make it so much easier if you were here.

Anaru misses you and talks about you all the time, his baby brother he is so proud of you.

We all wish that we could just hold you again.

It's funny sweetheart, I miss you but I don't, it does and doesn't get easier as time goes by.

I wish you never had to have left us, but obviously you were needed somewhere else or by someone else.

I will always remember and cherish the time we had with you.

Please once again my angel, forgive me.

My love always little man

Mum
 

6 September 1998
 

With your birthday nearly upon us, your presence is missed greatly. Hope all you kids are behaving yourselves, it is getting easier slowly without you here.

We are all o.k, but still miss you greatly.

Mum and Dad are thinking of having another baby, I hope that you are happy my son.

I can't wait till the day I see you again, and I know that one day we will all be together again.
 

27 September 1998
 

Your birthday is here, but you are not.

You would have been two today

And I guess you would have been into a lot of mischief

We all went down to see you today,

Mark and Jamie came over as well,

I guess you were looking, and laughing

About what a bunch of idiots, we must have looked

With our twisties, coke and chocolate biscuits

You were in our thoughts all day

And always are, everyday

Happy Birthday sweetheart

Love forever

Mum
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

19 December 1998
 

Well my darling you have been gone nearly a year, and you are still very much missed.

Anaru still talks about you all the time.

It is getting easier but we still miss you like crazy.

Christmas is not the same without you here.

Anaru talked about you the other day like you were still here. It was sad to listen to him, because you could still hear the hurt in his voice.
 

30 December 1998
 

My angel.

I miss your smiles, miss your hugs and your kisses. I long to see you again just to touch you and hold you, and to smell your sweetness, one day we will be together but for now we have to wait.

Mum and Dad are having a few problems at the moment. We will try to work it out but I can't make promises my angel.

Christmas wasn't the same without your smiles and giggles. We wish that you were here to be part of it all.

It just isn't fair my son I know that you are always with us in our hearts, but sometimes it's just not enough.

I thought that I could cope with all of this but am beginning to realise that maybe I can't.

I don't know how to ask for help anymore, because it has been so long since I had to.
 

15 January 1999
 

This is one of the hardest times, that I have ever had to go through. With your anniversary only a month away, and having to cope with losing you, we lost another baby last week.

It is so sad because all of the memories of you came flooding back, and seem to dominate our minds more than ever.

Anaru is starting to settle down now, and is enjoying school now.

My little man, how could this be fair to take away a child, you just don't expect to be saying goodbye, and burying your own children. It just doesn't seem natural, or fair.
 

This is a short story of Dylan's life from Steve's point of view, intended to be sent through email to a friend.

I think most of the dates are wrong, coz I have such a bad memory, and I've
probably left heaps of important stuff out.

On the 27 Sept 1996, my son Dylan Trevor Keate was born in Middlemore
Hospital to myself, and my girlfriend of three years, Shona. He was a healthy
baby, and he weighed in at 7 pounds something. I was the proudest Dad in the
world, Shona was the proudest Mum in the world, and Shona's son from a
previous relationship Anaru, who I see as my own son, was the proudest big
brother in the world.

As time went by, Dylan grew bigger, and stronger, but he wasn't completely
healthy. He was troubled by chest infections, which no amount of anti-biotics
seemed to cure, he also started holding his head over to one side for no
apparent reason. After a few months, he started vomiting daily, then several
times a day. We were going from doctor to doctor, and even went back to
Middlemore, but no-one seemed to be able to diagnose Dylan's problem. A
doctor at Middlemore told Shona she was paranoid.

Finally, after one night of almost constant vomiting, Shona took Dylan to the
local A&E clinic, where the doctor sent her straight through to Starship
Hospital. About 45 minutes later, I got a call from Shona telling me to go to
Auckland Hospital. She was crying, and I could tell that she had something
important to tell me.

I was prepared for bad news, but what she told me left me completely, and
utterly stunned, and shattered. Dylan had a brain tumour. I felt as though I
could have died, and if I could have, I would have gladly traded places with
him.

2 days later, Dylan had an operation to remove as much of the tumour as
possible. We all had our fingers crossed that the neurosurgeons would be able
to get all of the tumor, and Dylan would need only light chemotherapy. It was
another blow when the surgeon's sat us down about a week later to tell us that
the tumour was so large that they were unable to get all of it. Dylan would
need agressive chemotherapy to have any chance at life.

Soon after, we had our first appointment on the Oncology Ward of Starship
Hospital, where we met with the Head Oncologist. He told us that Dylan would
have a 30% chance of survival with the most agressive chemotherapy it was
possible to give a child of his age. Me and Shona had already agreed that if
chemo would give him a 25% chance of survival, then it was worth the risk. We
both laughed when the doctor told us that they planned to give Dylan his chemo
through a line stitched into his chest, because we thought he'd just pull it
out. The doctor assured us that he wouldn't.

We would find out in three cycles (courses) of chemo, whether Dylan's tumour
was under control.

The next week Dylan went in for his central line (an IV line connected to
arteries near his heart, for the chemo), to be followed by his first dose of
chemo, and a week in hospital. Shona and I decided that she should stay at
the hospital for a few days, while I stayed at home to look after Anaru,
her son from a previous relationship, then I would be at the hospital for a
few days, and Shona would look after Anaru. Halfway through his first stay,
Dylan pulled out central line #1, meaning more time in hospital for him.

Dylan came home for week, but had to return after two days because of an
infection in his second central line. The oncologists conceeded defeat, and
fitted Dylan with a portacath, a device that stays under the skin, and was
impossible even for Dylan to remove. It didn't stop him pulling out the
connector though.

By the time they had finished clearing up Dylan's infection, his next session
of chemo was late, meaning even more time in hospital. Shona and I were only
seeing each other as we passed in the hallways of the hospital, and our
relationship was getting very tense. But we had no choice but to keep going,
because there was no one else to do what needed to be done.

What times Shona and I spent together, we were at each other's throats
constantly because of the stress we were under. The months went by, with our
relationship growing colder and colder. The time came that Dylan's MRI was due
to see if the chemo had worked, it was a harrowing experience, and it drew us
closer together. We had to wait a few days for the result.

When the time finally came for the doctors to deliver us the results of the
MRI, We both knew before he even spoke that his news wasn't good, with tears
in the corners of his bloodshot eyes, he explained to us that Dylan's only
other option was radiotherapy, and that because of his age, it was likely to
leave him crippled, he said he wouldn't recommend it. We chose to stop
treating Dylan, and let him enjoy what time he had left out of hospital.

We were told that Dylan probably wouldn't make it to his first birthday.

My relationship with Shona went from strength to strength, we were getting
closer again. Together we felt invincible, and we were close in a way we had
never been before. As true friends.

Dylan's first birthday was probably the biggest first birthday any baby has
ever seen, with about 60-80 people there. It was a strange atmosphere,
everyone knew about the birthday boy, so it was a little more subdued than it
could have been. His birthday came and went, and Dylan was still with us, and
almost healthy. The doctors said that they would be surprised if he made it
beyond christmas.

In Novemember/December, we talked to the child cancer foundation about Anaru,
who wanted to have a holiday with his baby brother and was obviously not taking
the idea that Dylan was going to die soon at all well, breaking down into tears
whenever anyone mentioned Dylan's illness. They arranged an all expenses paid
trip to Rotorua for all of us, and Dylan obliged by being healthier and more
active than he had in weeks. He fell in love with the heated pool at the motel
we stayed in.
 

After our holiday, Dylan took a turn for the worse, and was unable to hold
down the oral morphine he was being given for pain treatment, his weight began
to plummet, and he looked old beyond his years. We all knew that we didn't have
much longer with him, and the nurses were constanly increasing the doses of
morphine to try and stop the pain.
 

Christmas came and went, and Dylan was still with us, but he was starting to
show signs of the tumor again. He was having trouble holding down food, and
coughing a lot, as the tumor affected his windpipe diapragm and swallowing.
Dylan was beginning to die.
Boxing Day Dylan ended up in hospital again, after a very rough night of
vomitting.
 

Mum and Dad had taken Anaru away on the boat for two weeks, Dylan came out of
hospital three days later but didn't seem to be getting any better.
Shona was sitting with Dylan, watching video's we had taken of the kids, and
dylan was happier than he had been in days.
When Shona turned the video off Dylan began to cry and say
something.....Aaaaaa, he was missing Anaru.
He was getting sicker and sicker so Mum and Dad cut their holiday short and
came home.
As soon as Anaru walked in the door, we saw somthing we hadn't for the last
week.
Dylan was smiling again.
 

By the 27th of February 98, 17 months to the day after he was born, Dylan was
simply unable to move, or cry. His breathing was slow, and laboured. Our GP
visited at about lunchtime, and told us what we all knew, that Dylan was going
to die very soon. He took a photo of Shona and I holding Dylan. It's the last
photo of him alive.

At about 3:00pm, Dylan passed away peacefully in his mother's arms, I held
him while he still felt warm, and layed him down on his favorite blanket and he
looked more peaceful than he had in weeks.