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kyahsjourney
19 November 2010 @ 10:30 pm
Next Sunday our beautiful girl would have turned five and I often find myself daydreaming about what she would look like, what her personality would be like and how tall she would be!

Rather than use words this time, I'm going to share a video montage which sums up Kyah perfectly - always shining.

Thanks for still reading and commenting xo

http://tiny.cc/q6hrs
 
 
kyahsjourney
19 November 2009 @ 04:00 pm
A year goes by so quickly. Just when you're throwing out the last of the broken christmas toys, it sneaks up on you again and you think, "hang on! I haven't even taken down the tree from last year!"
Each birthday has you commenting on the speed at which they appear...

The last year has been no exception. 365 days ago - and almost to the minute of writing this - I was gently placing Kyah into the transfer car to be taken away to the funeral home. I vividly remember being stressed because she wasn't in her carseat and also because she was going to a strange place without us. It was our first time away from her in a long time ... but it was be the start of our new forever.

Fast forward to today and everything has changed dramatically in such a short period of time. I never once imagined my life taking such a drastic turn and while I've hurt others and been hurt in the process, I wouldn't do any of it differently. I am truly happy and I can deal with the hard knocks on my own.

Jason and I became another set of statistics in June when we separated. It was solely my decision. I had little direction after Kyah and threw myself into anything that kept me away from the house. It meant we grew apart and we grieved differently and on our own. I was unable to support him which ultimately drove a wedge between us.

The only sadness I feel is that once again, Kaleb and Jordan are being forced to accept a situation out of their control. But as always, they soldier on knowing that they are loved unconditionally and have routines in both their homes!

Not a day goes by that I'm not consumed by Kyah. I rarely dream about her anymore and I don't feel her presence but I still talk to her and about her as if she was here. Some days I have huge meltdowns and cry until there are no tears left. These have been more recent in the last few weeks leading up to her anniversary and usually when I'm home alone. I miss her immensely and as we near her 4th birthday, I constantly wonder what she would look like now, how tall she would be, what her voice would sound like, what kind of things would she be doing.

Today we went up to Whitireia Park and released balloons at 11:55am. It was a perfect day - she put on the weather after I asked nicely and I know she would have been thrilled at the amount of pink balloons headed her way!

In two weeks, myself and three other extremely brave (or is that crazy?) cancer mums will shave our heads. It's going to be televised and we're still aiming for our $50,000 target. Shoot for the moon and if you miss, you'll be amongst the stars!
www.fundraiseonline.co.nz/funrazor09

The book is STILL waiting to be written. I sat down a few times and started to write but nothing flowed so I figured it was just the wrong time. I know that one day I will be overcome with the desire to write the entire thing in one sitting and when that day comes, Kyahs Journey will be in print not long after. Until then, I will put my writing skills to use in my Facebook updates and maybe the odd email :o)

So a year has come and gone. I don't dare predict what the next year will hold for me - though less drama would be nice! I will continue to live each day as it comes and enjoy watching my boys grow and develop.
 
 
kyahsjourney
31 December 2008 @ 09:14 am
What a year! It's not all been bad... 2008 saw us coming home for good, it was filled with hope that Kyah was in remission, we got five fantastic months without any major treatments or illness, she got a few months without the need for her 'wiggles' or her ng tube and most importantly, we got to see what normal was like again.

While I'm looking ahead to 2009 with my fingers crossed that it HAS to be a good year in comparison, I can still reflect back on the last 12 months and smile - we really did have a lot to be thankful for.

Everything has an ending.  For Jason and I, it seems fitting that we close this particular chapter of our lives on the last day of 2008.  Kyah's Journey has brought a network of people together and you have all found a common bond through her - love and appreciation.
I ask that you share with us your most favourite memory of her, whether you knew her in person or not.  They can be private messages that won't be unscreened or they can be shared with the world.

The one that stands out for me was one night in Ronald McDonald House.  Kyah refused to go to sleep so I ignored her and came on here to update.  She gave me a few minutes of peace and then proceeded to play "boo" with Giraffe. I started laughing and once I had her attention, she yelled out to me that she wanted cuddles, so I jumped on her bed and we both dissolved into fits of giggles.  I remember her arms wrapped around my neck as she laughed and laughed.

Take nothing for granted.  We got to spend  three magical years with our butterfly princess and while it was not nearly long enough, we have thousands and thousands of special memories to treasure.

Thank you for reading and for supporting us.  What started as a means of communication for friends and family and a document for myself has turned into an amazing tribute.
Look out for the book :o)

With all our love,
Shanell, Jason, Kaleb, Jordan and Kyah
xoxoxoxo

 
 
kyahsjourney
29 December 2008 @ 11:31 pm

Birthday - tick!
Christmas - tick!

It wasn't nearly as bad as I anticipated.  For the third year running, Jason and I were up before the kids which meant there was no morning madness - we were showered, dressed and refreshed before we woke them :o)

We opened Kyah's Twinkletoes present together and it was just perfect.  I now have her feet and hands sitting beside me on the wall.  It is so detailed and it is amazing to stare at them and remember just how delicate her hands were.
We also received a painting of Kyah from a friend's friend.  It is so lifelike and when I talk to her, I find myself seeking out this portrait - the expression in her eyes is just so surreal!

Val and Nick (Jason's parents) bought me a book by a NZ author named Mary McCallum.  Inside was a note that said (I'm heavily condensing this) Mary was happy to spend a few hours with me discussing turning Kyah's Journey into a book.  Basically I can pick her brain and actually get the ball rolling.  VERY exciting!
My only dilemma is whether I keep the book as a diary form (i.e. don't change anything) or I rewrite it from scratch.  I've had loads of feedback and there are pros and cons to both ... I guess it'll come clearer at a later stage.

It's going to give me such a focus.  I've still been so torn between wanting another baby, wanting to travel, joining the Police force and just doing nothing.  To date, the 'just doing nothing' seems to be the priority but I'm going to get very bored, very soon.
So now, I throw writing a book into the mix and it doesn't seem quite so hazy. 
I write - it's what I do, I love it and it makes complete sense to put everything else on hold and focus solely on making Kyah a bestseller.

I've had many comments asking about the Funrazor next year.  I haven't backed out despite getting cold sweats everytime I think of it! I created a new journal so that all progress (and lack of) can be tracked there.
http://funrazor09.livejournal.com/ Add it to your favourites and keep checking back.  It won't be updated as frequently as this journal but we will put all the fundraise online details up sometime into the new year, along with photos and various other bits and pieces.

Finally, just so you can appreciate what I get to stare at and gush over whenever the mood takes me...




 
 
kyahsjourney
24 December 2008 @ 10:23 pm
This time last year, Kyah was discharged from CHOC after a five week stint following her stem cell transplant.  I remember feeling so happy that we were able to wake up together as a family on christmas morning...

I'm pleasantly surprised at how excited I've been during the build up.  I really thought I would turn into the Grinch and opt to sleep until the day was over.  I put it down to having Kaleb and Jordan around me - their excitement is contagious!

On the flipside, I am constantly reminded that Kyah is missing.  Her santa sack is still folded up in the linen closet - putting it out and knowing it will stay empty is too much, too soon.  Maybe next year..
The tree looks bare without her stash of presents underneath... we're all just so aware.

Jason and I are seriously looking at getting some form of councelling now.  Our lives have been focused solely on Kyah for the past 17 months and now that she's not the centre of our attention, we're learning how have a relationship again.  It's very easy to become complacent and shut out aspects of my life that I don't want to deal with.
We are such different people when it comes to grieving and I openly struggle when he needs me to be strong.  Just as I struggle to completely breakdown when he is around.
I'm not sure why it makes me uncomfortable but I don't like seeing my dad cry either.  They are my symbols of strength and if they break, then what?
Yes, I'm aware my perception is very skewed!
Though oddly enough, I can blubber with the best of them in front of Kaleb and Jordan.  I think it's important that they see us sad every so often. 

And on that note, I think Santa is on his way.  The milk and lolly cake (we've obviously run out of biscuits) and carrots and water are on the table awaiting his (and the reindeers') arrival.  The longer Jason and I stay up, the longer it'll take for him to get here ;o)

Merry Christmas!
 
 
 
kyahsjourney
19 December 2008 @ 11:27 pm
Today marks a month since Kyah's passing.  How fast has that gone?  It comes as no surprise that Christmas has snuck up on us and now we have to face yet another major 'celebration' without her.
Shopping has been difficult.  Every store seems to have an abundance of three year old girls and there I am, walking up and down the pink aisle looking lost.
Tonight, I bought a pink scented candle and a plaque in her memory and will display them both on Christmas Day.  We will also have her Twinkletoes hands and feet casts to unwrap.
But it's not the same.

And quite possibly, it's still not real.  I think I still might be in denial.  I cried an ocean the other day because it was real then - I accepted that she wasn't coming back and I sat and watched her montage and listened to her voice and it very nearly destroyed me.  The tears wouldn't stop for a long time and my eyes burned.
Then I had to pick the boys up from school, so my focus shifted, I stopped crying and slid back into that denial.  I guess it's denial because if I really did accept that this is our life from now on, I would never stop crying.

Or maybe I'm just being realistic. 

Not having done this before, I don't know why my emotions range from one extreme to the other.  What I do know is that I miss her.  Lots.  I want to keep hitting rewind and live the last 'almost three years' over and over and over and over.
I'd quite happily go through Groundhog Day if it meant a day with Kyah.

However, the world still keeps turning and we have to move with it.

Jason and I have been discussing another baby.  It's purely at the 'what if' stage and will probably never happen for a number of reasons.  We always said three was our magic number, regardless of whether one of our kids died ... but that was an easy decision to make when the three of them were healthy.
Now I have this HUGE void to fill and I happily admit that.  It's more whether I want to fill the void with a new baby or have another Kyah to take away the pain.
Once I can honestly answer that, then we take the next step.  Until then, it's just discussion but it brings with it hope. 

Kaleb and Jordan have finished school for the year.  I'm looking forward to spending time with them (though ask me again in a week...) and keeping myself busy.  Right now there are more hours in the day than I require so it will be good to have the distraction - even if they do argue constantly!
 
 
kyahsjourney
15 December 2008 @ 10:07 pm
...  
My phone broke recently so while they were fixing it, I had a loan phone.  I couldn't transfer my contacts over as my phone kept crashing the system!  So I lost ALL my contacts (there were some tears..)
I got my phone back yesterday and I only have a tiny percentage of my contacts on it.

So the point of this entry is that if you have my number and you haven't heard from me in a few weeks (excluding me being a snob and not replying!) PLEASE text me so that I can re-add you.

Thanks :o)
 
 
kyahsjourney
12 December 2008 @ 06:13 pm
All clouds have a silver lining.  If I keep saying it, I'll start to believe it ;o)

My car looks as though it's going to be written off as the cost of the structural damage outweighed the cost of the car, so fixing it would be in our favour, but not our insurance company's.
It's just a car.  Really, a piece of metal with wheels, but you would have thought they were telling me Christmas was cancelled forever.  I almost cried.
We had plans to sell Jason's car, not mine so it's been a decision made for us and quite frankly I don't like decisions being made for me!

We had to go to the tow-yard today to clean out our personal items and again I had to fight back the tears.  Not only did my car look out of place, there were many, many wrecked cars that had been in serious accidents.  It was awful to know that perhaps not all the people in those cars survived.  Kind of hit home just how freakin' lucky we all were yesterday.

Today we went shopping for a new car.  It's much cheaper to buy up here and we found the deal of the century! 
We've converted from Japanese to European and from manual to automatic but it's beautiful and safe!  I'm sure Kyah would approve :o)

Tomorrow we drive home and I'm really looking forward to it.  I miss Kaleb so much and dislike being away from either of them for long periods. 
 
 
kyahsjourney
11 December 2008 @ 05:26 pm
Jason and I have decided that 2008 is not our year and are both hoping that 2009 brings us some more luck ... or a Lotto win ... or even just some good news!

We were in an accident today in Tauranga.  Our fault.  We ran an intersection that we thought we had right of way and a guy on a scooter ploughed straight into the rear passenger door. 
It happened so fast.  I recall yelling out as I saw him coming towards us, hearing Holly (Jason's cousin) scream and then the impact. 
Despite being shaken, everyone is ok.  The rider and Holly were taken to A&E in an ambulance, him with scrapes and to do a precautionary check and Holly with bits of glass (the passenger window exploded on her) still stuck in  a few cuts on her arms and legs.

The police were fantastic.  My car not so much.  It has been towed and luckily our insurance company have a travel policy which means they pay for us to get home in a rental car.  We're due to come home tomorrow but neither of us feel much like driving that kind of distance right now. 

We are so fortunate that it wasn't worse.  That Jordan wasn't sitting in Holly's seat.  She saw what was happening and knew to bring her arms up and shield her face, Jordan wouldn't have - so it could have been us sitting in A&E with him covered in cuts to his head.   The rider never slowed (funny that - he didn't expect a car to come out of a give way sign and hit him!) so he could have easily gone over the car, but he didn't.
And then there was the monarch butterfly who stayed with us from the time we pulled the car over til we got into the police car (just to get a ride to the hospital!) ...
I really do believe that Kyah was watching and making sure we were all ok.

The rest of the holiday has been as expected - relaxing and calming and just what we needed.  The weather picked up yesterday so we've spent a bit of time at the beach.

Tonight I am going to drink a lot of wine.  I worry with 20 days still remaining of this year, what else can happen!  An optimistic person by nature, I really am struggling at the moment!
 
 
kyahsjourney
06 December 2008 @ 07:52 pm
The Funrazor was brilliant!  Dad, Jason and the boys raised over $12,000!  There are three mums who made a pact with me (Becs, Alli and Catherine..) and we have all agreed to shave our heads next year.  We are putting a $50,000 pricetag on our locks (combined) and imagine we won't have any problems achieving that target.
So I have approximately 360 days to get used to the idea!

Jason, Jordan and I are off to the Mount tomorrow for a week of relaxation.  Kaleb has a fun week of electives at school so has opted to stay behind and hang out with Grandad.  It's going to be weird going and leaving two kids behind... (technically, Kyah will be coming with us but you get my point..) Jordan will have the entire backseat to himself - no squishing into a carseat or his big brother.

As requested...




















 
 
 
kyahsjourney
03 December 2008 @ 10:53 pm
We are still plodding along - sometimes with purpose and sometimes aimlessly.  No two days are the same and some days I think I have a handle on it all and then it all backfires.  The firsts are still coming thick and fast - some I barely notice and others just plain suck.
Taupo was fantastic but it wasn't that long ago that we were there (in the same park) with Kyah; yesterday I drove Kaleb to art therapy and it was the first time I reached the lights and didn't make the turn to the hospital (or CCF) - I bawled silently so that I didn't upset him.  We then drove past the park where he played his last soccer game of the season and lo and behold, we had Kyah with us.
So yeah, some days I walk around in circles and try my hardest to distract myself - other days distraction comes easily and my 'Kyah thoughts' bring smiles.

It would be easier if each day got a little easier but there is no rhyme nor reason to our meltdowns.  Two weeks today and it still doesn't feel 100% real.

I'm not feeling Kyah around me anymore either.  I think maybe in that first week, I was looking for signs in everything.  That said, I was talking to her today and my front door opened.  It has been windy and it's highly likely I just didn't close it properly ... but I'll take what I can get!  Some things I do/say/wear I feel a sense of peace? (hard to explain) but there's not the excitement that comes with waiting for a sign.

That's the hard part.  As much as I want to believe, part of me is convinced that when she died, she died fullstop.  And then I worry that she's still alone, scared and confused.
I really wish the other 93% of my brain would kick in - surely it would make this grieving process clearer.
To be honest, I don't know what to think when it comes to Kyah's spirit.  She needs to appear in front of me ...
What I do know is that I am and always will be a little bit broken.  To say I miss her doesn't even scratch the surface.  There is a gaping hole and sometimes it causes a physical ache.
Jordan said a few nights ago, "I just want one thing for Christmas - Kyah".  I couldn't put it better myself.

Anyway, again I need to state that I am ok.  Jason is ok.  Jordan is ok.  Kaleb is 12... but mostly ok!
This hurts more than anything I've ever known but my days aren't filled with tears and depression.  I have moved back into my old routine - I see friends, I go to the gym, I play netball, I clean my house, I taxi the boys around, I cook dinner (very infrequently I might add!), I grocery shop, I do it all - I just do it without Kyah. 

The Funrazor is tomorrow.  It's dad's birthday and he gets to shave his head - woohooo!  I am gobsmacked by the donations.  The reasons people are donating, the people themselves who are donating, the people who are shaving their OWN heads!  Kyah's journey will amaze me for years to come.
www.fundraiseonline.co.nz/Jaseandtheboys

It doesn't end there though.  There were a group of people in Christchurch who cooked dinner for the families in Ronald McDonald House last night because of Kyah.  There is a Trademe t-shirt still doing the rounds, collecting usernames to raise money for CCF in Kyah's name.
The positives are still flowing and she's not even here anymore.

If ever there was a reason to smile, it's because of people's generosity.  Thank you all so much.

If you're in Wellington, entertainment kicks off from 3:00 and the shaving starts between 4:00 and 4:30.  Midland Park on Lambton Quay.  Come along and support all the shavees :o) 

Lastly, good vibes and healing thoughts need to be winging their way to Marg.  Marg is our CCF support worker (I've mentioned her many times) and was hit by a car on Monday.  She is going to be OK but it still comes as a huge shock and again reminds us just how fragile life is.  I have no doubt that she will be back to her wonderful self in no time.  And if you're reading, Marg - we have a cup of boiling water set aside awaiting your return xox
 
 
kyahsjourney
28 November 2008 @ 05:01 pm
If Kyah were here, it would be the perfect birthday.  The weather is stunning!

The boys have just released three monarch butterflies outside after spending time with them in Kyah's room (thanks V - you did good!) and tonight we will check our constellation map and look for Kyah's new star (thanks J - the boys went "wow!")  She really will be a diamond in the sky!

The cards, the presents, the flowers, the messages.  Thank you all so much!  She's a pretty spoilt girl ;o)

Soon, we are going to eat McDonalds while watching Madagascar and then we'll play a game of Elefun.  All her favourite things :o)

Jason has made a butterfly cake and it's going to be unbelievably sad singing Happy Birthday to her but I imagine she'll attempt to blow out the candles alongside us.  The boys took cake and cupcakes to school this morning to share with their classes.

Tonight I am travelling to Taupo with my two girls as D is riding around the lake.  K and I are the support crew (think wine, sun and great food!  Oh, and lots of cheering!).  It's going to be a lot of fun and I think Jason will enjoy the break from me!  We originally planned to leave at midnight as I refused to go on Kyah's birthday but I compromised (with who? I don't know) and will leave at 11:00.

I thought today was going to be really hard to get through but surprisingly, we're all ok.  If this particular 'first' is anything to go by, we might just be alright :o)
 
 
kyahsjourney
28 November 2008 @ 12:02 am
Happy birthday to our gorgeous girl.  Three years ago I was waiting to meet the little person who would change my life forever.
I didn't know it was possible to miss someone as much as I miss Kyah.

Love you to the moon and back, baby.
xoxoxox
 
 
kyahsjourney
26 November 2008 @ 11:12 pm
Kyah is home again.  Albeit in a small white box ... but I feel comforted knowing that we have her back for good.  It's been a week since she died and I didn't even register the day until I got home from the gym.
It was 11:00am, Jason had gone into work for a few hours so I was home alone and then it hit me. I sat here on the laptop and watched her montage and I got so many goosebumps so I started talking to her and the goosebumps never went away, so I think that she was there watching with me.

It's not enough though.  I'm yet to go through the *motions* (that's what they always say after a death apparently) but I'm feeling selfish and I don't want Kyah in the form of a moth.  A freakin' moth! I don't even like moths!
I don't want animals, I don't want goosebumps, I don't want flickers out of the corner of my eye.  I just want her.  Physically.  I need to be able to touch her but I can't and it hurts.
So I'll have to make do with cuddling a box instead.  Can't cuddle a moth.  Can't really cuddle a box either.  My options suck.

Jason and I have been having [serious?] discussions about cloning Kyah.  We have enough of her DNA still floating around and figure if they can clone a sheep (hello, like we don't already have millions!) then they can give us Replacement Kyah.  We have Replacement Giraffe waiting on her bed already...

Black humour strikes at the weirdest times..

We also got the funeral DVD and have just finished watching it.  I cried when I saw Kyah being carried in (damn those bagpipes!) but for the rest of it I laughed, analyzed and picked things to bits! Ha!
The perfectionist in me is never satisfied...

I'm feeling so blah.  In two more sleeps, Kyah turns three but won't be here to celebrate it with us.  We have to make it a happy day for Kaleb and Jordan but really, what's to be happy about?

Would you believe that I'm actually doing OK?  Despite my journal ramblings, I'm quite sane (though some will disagree).  I laugh, I smile, I love, I live.  I cry lots too but the headaches aren't as frequent...

The cards are still pouring in - thank you.  All of Kyah's birthday cards are up on her wall and will stay there for a long time but the sympathy ones are going into her memory box.  It hurts to read them at the moment but one day I will go through all the memories that we've created for her and I will be able to read the cards that talk about our loss without sobbing.

I'm still undecided when I'm going to stop writing.  I initially said her birthday would be the last entry and it still might.  As theraputic as it is to write, it's hard to write about her.  I'm talking in past tense.  I can't look around to see her on the couch.  There is no "muuuuuummmmmy!".  All those familiar sounds and sights that were a part of this journal are no longer.  So to end this would make sense.
We'll see.
 
 
kyahsjourney
25 November 2008 @ 01:15 pm
I've put Kyah's funeral montage up onto Onetruemedia so that it can be viewed by those that missed the service. 
http://www.onetruemedia.com/shared?p=77703dc9f1a19cef56ac1f&skin_id=601&utm_source=otm&utm_medium=text_url

Also, her eulogy.  I tried writing this a few weeks prior to her passing but the words refused to flow and so I left it.  In the wee hours of the morning on the same day of her funeral, I started writing again and two hours later I was pretty happy with the final result....

Kyah's Eulogy

A confirmed pregnancy brings with it a whole raft of emotions – excitement, anxiety, fear of the unknown, joy and it allows you to dream of the future.

Kyah was no exception. As soon as the test said positive Jason and I were both giddy with excitement but a bit anxious about having another baby and transitioning to three kids.

Eleven weeks into the pregnancy, my brother Dale was in a car accident and spent two weeks in ICU before he passed away. At the time I begged to whoever was listening to my thoughts that I would swap the baby for Dale. He was real and living and I couldn’t imagine my life without him. The baby was just a peanut of a being and the only indication I had that I was pregnant was morning sickness. Besides, I could always have another baby.

No-one listened. Dale died and the little person growing inside me continued to develop.

At 19 weeks, we discovered that our baby was a girl. After two boys I wasn’t sure if I would cope. Us? A daughter? A little girl to dress in pink? It was a little overwhelming and admittedly I didn’t really believe that I was carrying a girl until the day she was born.

Jason and I spent days trying to come up with names for our daughter – what I liked he turned his nose up at and what he liked, I laughed at. We never seemed to agree until he found the name ‘Kya’ on a website. It was African and meant ‘diamond in the sky’. I liked it (but not as much as the name I had chosen) so we decided that it would go on the short list and be the safe name should we still not agree on anything else.

The night before she was born we still couldn’t agree and figured we would know once we saw her.

On the 28th November, 2005 at 2:42pm a new person was brought into the world. The second she was held up, we knew then the name that suited her and we welcomed Kyah Dale Milne into our family.

She was perfect in every sense of the word. We spent six days in hospital and I openly struggled with separation anxiety. I had visions of Kyah being swapped while I was out of the room so spent many hours soaking up her details so that I would know if someone tried to replace her.

It was a very real fear and looking back now I wonder if my subconscious was telling me that something wasn’t right. 

Once we came home, the peaceful and serene little girl that we had grown used to disappeared and left a screaming and grumpy child in her place. For eight weeks Jason and I dreaded the witching hour. It started at 5:00 each night and lasted anywhere up until midnight. In that time Kyah would scream and I have fond memories of Jason wearing a path in the lounge carpet from walking back and forwards for hours with a small, red thing that yelled lots in his arms.

During that time, when Kyah was six weeks old, we thought a holiday at the other end of the country would be beneficial to everyone. As we would be staying with family, it was sure to be relaxing and we would have many hands on board to help with a new baby.

Clearly we were still suffering from a lack of sleep combined with nappy brain and what seemed like a fantastic idea at the time soon wore off once we were in Taupo trying to console one very upset baby who screamed everytime we so much as glanced at her carseat. .

Taupo was five hours into the trip – we were still seven hours away from our destination.

The majority of the journey was a blur but I recall arriving, handing her over and then taking comfort in the knowledge that I would catch up on sleep. Kyah had other ideas. We were forced to accept that witching hour had followed us from Wellington and got accustomed to holidaying with a newborn in tow.

And then it occurred to us that we needed to make the trip back home…

Once Kyah was a few months old, she settled into a routine and became an absolute joy to be around. I often found myself staring at her, so happy that my perfect family was now complete.

She became mobile at an early age, learning to crawl at six months and walking by 11 months. Always wanting to be on the go I found it both exhausting and rewarding running around after her. Her personality was much different from the boys. Kaleb and Jordan were cruisy babies, happy to just go with the flow. Kyah, on the other hand, was a bundle of activity from the moment she woke up until the moment she went to bed.
And even daytime sleeps proved interesting when she got to the stage of being able to pull herself up in her cot but not being able to get back down….

I will say that she was an absolute delight to be around and I felt fulfilled spending my days with her.

She quickly became a seasoned shopper and we were often found trawling the racks at Pumpkin Patch. Kyah had an eye for fashion and would happily pick one of everything to take to the counter. 

Kyah’s first year flew by. Her birthday came around without any warning and while I looked forward to the future, I recall feeling sad that 12 months had gone so fast. She was the only one out our three children that didn’t have a huge first birthday. I figured there would be plenty more to celebrate…

Her second Christmas was spent in Mount Maunganui with our family. Excitement grew as Kyah knew all about presents and was even happy to check out Santa from a distance. Unfortunately she came down with chickenpox on Christmas Day so for the next week our holiday was all about baths with pinetarsol, calamine lotion and 1am drives to help her sleep

It’s funny to reflect back to that time and remember how we thought that was the most awful thing to happen to us.

Jason and I got married in April ‘07 and for a few months beforehand our lives were consumed with planning our wedding. Kyah was 17 months old and got her first proper cold around the same time. She was our beautiful flowergirl but didn’t get to spend much time with us as she was feeling unwell.

She took some time to get over her cold and once it disappeared I booked her in to get her MMR immunisation.

Kyah had two weeks of being unwell and regular trips to our GP saw her scratching her head trying to come up with a diagnosis.
Little did we know that the suspected pneumonia Kyah was admitted to hospital with was actually a large tumour growing in her tummy and it wasn’t until it had spread through her body that she presented with any symptoms.

Cancer. It was a horrible word. It was only something that happened to old people, not 19 month old babies and most certainly not our 19 month old baby.
She was diagnosed with stage 4 Neuroblastoma and we were suddenly thrust into a world where they spoke in medical jargon and statistics were bandied about, but not in our favour. We went from being a happy family with healthy children to a confused family terrified that we were going to lose our daughter.

Nothing made sense. Treatment was to start immediately but that consisted of lots of drugs that we couldn’t pronounce and didn’t sound particularly nice. We were forced to take a backseat and let the professionals do their job. That was one of the hardest things I’ve ever had to do – hand over the control and watch helplessly not knowing a single thing. 

More problems arose and due to Kyah being too high risk in a unit that wasn’t secure we were sent to Christchurch and spent six months there for the majority of Kyah’s treatment. Despite being taken away from our support network, it was a turning point for us and coming back to Wellington was harder than it was to leave. We met many, many wonderful people while living out of Ronald McDonald House and have formed lifelong friendships. 

Kyah’s time in hospital was memorable. To read what she went through would have most people’s heads spinning but she handled everything with such grace, it was impossible to feel sorry for her. For someone who had the poorest prognosis to begin with, she showed such determination and we won our very own lottery the day we found out her tumour had shrunk and her bone marrow was clear.

It meant the next phase of treatment would happen.

On the 30th October, Kyah had major abdominal surgery to remove the bulk of her tumour. She was in theatre for eight hours and came out looking completely different from the little girl we had said goodbye to earlier that day. She was swollen, there were tubes everywhere and she was hooked up to so many monitors. We were told that she would be looking at a two to three week stay in hospital but in true Kyah style, she was discharged nine days later.

That was Kyah in a nutshell. The doctors told her one thing and she showed them another.

We prepared for Kyah’s stem cell transplant in late November and it meant she had to spend her 2nd birthday in the ward. Again I didn’t worry because I knew there would be many more birthdays to celebrate once we got through this journey.
As it turned out, her birthday was a huge celebration in every sense of the word and I will never forget the nurses in CHOC singing her Happy Birthday. The walls shook that day – it was one of the most poignant moments to date.

Christmas approached for the third time in her life and as she recovered from her transplant we were desperate for her to get out of the ward. Five weeks later and on Christmas Eve, Kyah was discharged back to Ronald McDonald House.
Christmas had special meaning that year. We finally understood the family aspect and our most favourite present was having our baby wake up with us on Christmas Day.

In January we got the news that we could come back home indefinitely as the Wellington unit was starting to get back on its feet.

Saying goodbye to our friends in Christchurch and leaving the security of CHOC and Ronald McDonald House caused mixed emotions. We were settled but we had to pack up and move again and adapt to familiar, yet strange surroundings.

Life eventually settled back into a sense of normality and we were able to pick up where we left off. Kyah adjusted extremely well and we even moved her back into her bedroom. Having slept side by side for six months, it was more of an adjustment period for me.

Radiotherapy was Kyah’s final major task and she sailed through her 14 treatments with the most minor of side effects.

Relapse was still at the back of our minds but it was getting less scary and it didn’t stop us from living.

Kyah had her hickman line and nasogastric tube removed in June and it was then we dared to dream that the worst was behind us. To have our girl at home with no tubes was fantastic! She could have a bath with lots of bubbles and she could splash as much as she wanted and no-one had to worry about keeping her ‘wiggles’ dry.

I enrolled her back into playgroup and she joined the crèche at my gym and life just eased into a routine.

Kyah had many favourite past times and was famous for being the only one in our family to make the perfect loaf of bread. It may have had a lot to do with her gung ho chucking of the flour, the eating of the milk powder and the spraying of the oil.
Whatever her secret, the loaves she assisted in were always light and fluffy.

She was fairly competent when it came to working the laptop and Xbox (definitely Jason’s daughter!) and worked her way through the Reader Rabbit series with ease. 

She was a gifted movie watcher and it was the hours spent in hospital that gave her a true appreciation for Madagascar, Barnyard, Finding Nemo and Nanny McPhee.
She even got to see Kung Fu Panda on the big screen which then saw her trying out her moves to anyone who would show interest. Kung Fu Kyah was born and it was impossible not to laugh as she high kicked her way around the room.

In early August, Kyah started to show signs of illness and for the next six weeks she was in and out of hospital having blood taken, tests done, antibiotics administered and general check ups. No-one could tell us why she wasn’t getting better. The tests that were specific to Neuroblastoma were clear so relapse wasn’t talked about initially.

We flew back to Christchurch for monitoring and on the 16th September a CT scan showed that the disease had come back. Kyah was officially terminal.

Nothing prepared us for it. Our hope was diminished with that one word – relapse.

We made lots of plans in a short amount of time to make Kyah’s final months memorable which included a trip to the Gold Coast to go to the theme parks but sadly, the cancer was too aggressive and she was unable to travel.

A special mention must be made to Giraffe. Giraffe has been around since before Kyah was born. He was waiting for her when she came home from hospital. It took awhile for her to become attached to him but once she did, they were inseparable. Kyah would spend hours twirling his tail between her fingers and it was how she knew whether we had tried to sneak Replacement Giraffe in when she was asleep. His tail was way too fluffy and so in the deepest slumber, she would still know and ask for her Giraffe. During Kyah’s treatment, Giraffe endured every procedure alongside her. He stayed with her during surgery, he offered his tail when the chemo had her constantly vomiting, he was there for every scan and test and he even tried to glow in the dark during her radiotherapy.

Kyah would also use Giraffe’s tail to comfort us when she knew we were sad. To have her rubbing his tail on our arm or face was a privilege and you knew you were part of an elite club if you got to experience it!

Giraffe is more than a soft toy – he was Kyah’s best friend, comforting her during her low points and celebrating with her during her high points. Because of this, it is an absolute must that he accompanies her into the next phase of her journey.

We will miss Giraffe immensely– he had a huge personality for an animal that didn’t say much.

The last 16 months have been the biggest emotional ride any of us have ever experienced. There have been many tears but they have been far outweighed by the smiles and the laughter. We have had the last 16 months with Kyah because there was a team of people dedicated to treating her and supporting her.
The staff in CHOC, the staff on Ward 18 in Wellington and the staff at Ronald McDonald House in Christchurch – each and every one of them played a role that combined, helped us to have quality time with Kyah.

In her final weeks, the community nurses were our saviours. They kept Kyah comfortable, they acted on our concerns and they batted for us when our gut instincts told us to go against procedure.

Ari and Carole – you became much more than Kyah’s carers. You became our friends, our counsellors and most importantly, our sanity. Your impact on our family at the most crucial stage of her treatment has been huge. We would like to thank you both for going above and beyond the call of duty and being there when we needed you.
Black coffee with one sugar, tea with milk and no sugar and plenty of baking will always be available.

And of course, Ari, we are still waiting on you to sing for us…

We will never make sense of Kyah’s cancer and we will never fully grasp why she was taken so early but we do understand the impact that she’s had on a nation and beyond. Kyah has in every sense stopped the world and taught everyone to slow down and appreciate everything positive in their lives. There is so much beauty surrounding us and it’s because of this one small person that we notice and enjoy.

Of course, we would give up her life lessons for another year, another month, another day or even another hour of her laughing and talking, but instead will have to treasure her legacy and know that she has touched the hearts of many.

To Kaleb and Jordan. You have been awesome big brothers to Kyah. Jordan, some days you were the only person that could make her laugh and dad and I loved hearing you both giggle together. It truly was music to our ears. Kaleb, you have been Kyah’s knight in shining armour and her love for you was set in concrete when she was unable to communicate clearly but still asked for you at midnight. Both of you treasure your memories with your baby sister. She will be watching over you and feeling so proud that she got the best big brothers in the whole wide world.

Goodbye and sweet dreams, nice dreams our beautiful butterfly princess. We love you more than the moon and the stars combined. We are honoured to be your family and we will miss you forever. 



 
 
 
kyahsjourney
23 November 2008 @ 09:27 pm
It feels strange writing in the day as it's not really about Kyah's journey anymore...

Her service was beautiful and even though I only got to briefly hug and say hello to people afterwards, it was just so cool to see people that I didn't expect to be there.  More people follow this journal than I realise!

Everything went so smoothly and I am looking forward to getting the DVD from the videographer so that I can watch it properly - pretty hard to remember all that was said.

We had a few hiccups with TV3 - they weren't supposed to film inside (we had only agreed to a pan shot outside) so it was a surprise to see ourselves on the news that night.  Kaleb was upset knowing that we had no control over who was watching so we asked TV3 to pull everything from the website.  They were really good and it had just come down to mis-communication.  No hard feelings - we have been very happy with how it's all been handled.
Today marked the final media involvement.  Kyah's journey has ended, the papers we have dealt with wrote their farewells so it's now a closed chapter.
Not to mention it's a bit weird to go out in public and know that complete strangers are staring and whispering! 

It's been a mass exodus this weekend and we've said far too many goodbyes to friends and family that travelled from out of town.  I'm struggling a little with this but am fortunate to still be surrounded with such great support.
My girls have kept me distracted and when I'm out with them, I'm 'Shanell'.  It's when I get home and see Kyah absolutely everywhere that I feel numb and keep walking around in circles.
It's that reason that I am avoiding home like the plague.  Jason is the opposite and would rather be here so we're spending a bit of time apart.
I guess there isn't a set way to grieve and we're both doing what works for us.

I talk to Kyah all the time, especially in her room.  I tell her my plans for the day and when I'll be home.  I look for signs in everything and if something strikes me as a possibility, I hold fast.
We have had a white moth flying around our lounge since Friday night.  It is shaped like a butterfly and it appears at infrequent intervals.  The logical person in me knows it's come in because it's attracted to the many flower bouquets in the house and the mum-who-desperately-misses-her-baby believes that it's Kyah.
Kaleb and I were circled and 'talked' to by a finch on Friday as we were sitting outside.  Both of us were grinning like idiots once it flew off and we both agreed that it was Kyah telling us things were ok.
I probably sounds nuts ... and I do have plans to get some kind of grief councelling ... but I need to believe that she is here.

The loss of her physical presence is devastating.  But she is everywhere:  a dummy on the bench, a toy on the floor, clothes in the washing pile, photos everywhere.  Knowing that I can't see her, hold her, play with her, take her out and just be with her is just so sad and unfair.  I would sell my soul to have her back.

We have spent the weekend doing 'firsts'.  We went to Waitangi Park yesterday - the last time we were there was Father's Day and she played in the park, dug in the sand and ran around with Kaleb and Jordan.  Today I went to Eastbourne - the last time we were there was when she and I had our Wednesday dates and we hung out at the beach.  Tonight we went to Lonestar and the mood was very sombre.  I kept thinking about the last time we took her there (five weeks ago?)...

The four of us now just hop in the car and we go.  There is no buckling Kyah into her seat, making sure I have a bag in the car, putting her buggy in the boot, getting her a requested toy or book.  Nothing.
It's just us and it sucks.  I have a carseat that is sitting in the lounge and I don't know what to do with it.

I miss her so much.  I just want one more 'cuggle' from her.  Crying doesn't do anything except give me whopper headaches.  It doesn't bring her back.

None of this makes sense.  It was only a few months ago that we were excited because we were so close to the last course of retinoic acid.  And now I have funeral service sheets everywhere.  Where did it all go so wrong?

I can't anticipate this getting any easier but tomorrow is a new day and I have many reasons to get out of bed each morning.  I will go back to putting one foot in front of the other and I will get through this.  Diagnosis was so easy in comparison.  I still had Kyah and I had the end of treatment to look forward to.
Now I don't have her and there is nothing to look forward to.
 
 
kyahsjourney
19 November 2008 @ 01:43 pm
Our beautiful baby girl took her last breath at 11:55am and passed peacefully with Jason and myself right beside her.

She has gone to a place where she can run and play just like any other 'almost three year old' can, where she is surrounded by butterflies and Polly Pockets and where she is no longer in pain.

Thanks for being there with us.
xoxoxox

~~***~~   A celebration of Kyah's life will be held on Friday, 21st November at Lychgate Chapel in Johnsonville.  It will start at 1:00pm.
Full details will be in the Dominion Post tomorrow. ~~***~~
 
 
kyahsjourney
19 November 2008 @ 11:42 am
Kyah's breathing has changed to short, sharp bursts so we are fairly certain this is it now (though we've been saying that for how long? Five weeks?!)
She hasn't had any urine output in over 48 hours so the tumour is either blocking her bladder or obstructing her kidneys.  Either way it's not good.
It feels like a lifetime since she's been in this state of sleep and we have willed her to release but now that it looks as though the end is fast approaching, I'm not ready for her to go. 
A new drug has been added to her syringe driver (cyclozine) to try and combat the constant vomiting.  As Kyah's body is not even tolerating the smallest amounts of water, it is awful to then watch her vomit on an empty stomach.

It's all happening so quickly after being stagnant for so long.  I'm very close to rambling so will end this here.

I continue to hope that Kyah's end is peaceful.
 
 
kyahsjourney
17 November 2008 @ 10:32 pm
I'm re-neging due to a certain 'almost three year old' continuing not to play by the rules.

Kyah is still very much here but essentially in a drug induced sleep so it's not the most ideal situation but it's better than the alternative.  She is not in any pain and we can move her freely without stirring her.  We limit her movements to taking her upstairs at night, downstairs in the morning and turning her from side to side to prevent pressure sores.

It's been an eventful few days with Kyah having an abscess in her left leg that had been brewing for a good three weeks.  It was the cause of the pain that we always assumed was nerve or bone and kept giving her morphine bolus'.  It possibly led to an infection which is why she was so unwell last week.  Her morphine was increased over three days from 150mg to 250mg and her midazolam doubled from 10mg to 20mg (which is why she is sleeping now).
Around the same time of the abscess resolving, Kyah's tummy decreased dramatically - to the point where I have her in normal nappies again and she can actually wear s3 clothes, rather than s5-s6.

No-one knows why this has happened but there is talk of an abdominal abscess or something similar.  She continues to vomit bile regardless of whether her ng tube is on drain or not.
She is literally wasting away before our eyes because she is not eating and only managing the smallest sips of water.  Because her tummy is now almost normal looking, it's accentuated just how tiny she really is.
Tonight I made up a toddler milk and have been syringing a few mls at a time into her mouth.  She kept it down for a good half an hour before vomiting so I hope that some of it was absorbed.
We are stuck between the hardest rock and the hardest place: She can't ask for food so we don't know if she wants it or not.  To starve her or to prolong this phase.

Cancer I get.  Suffering I don't.

We noticed blood in her nappy today and no urine.  There is also an extremely hard lump in her pelvis but buggered if I know what it is.  The question is, will it obstruct something vital?

Medical guff aside, we are all doing swimmingly (I love that word!) well.
I had a terrible meltdown yesterday when I was home alone with Kyah but I got over it and have been in pretty good spirits today.  Jason is still plodding along, having highs and lows.  Kaleb is flexing his 12 year oldness again so yay for art therapy tomorrow.  If that doesn't improve his mood, I'm going to gag him for a week!
Jordan is Jordan.  Not fazed for the most part but still coming out with some award winning questions!
They were both in the CCF float in the Xmas parade yesterday and had lots of fun.  If everything with Kyah remains the same, they will be attending sibs camp this weekend. 
CCF run sibs camp each year and it focuses on the siblings of cancer kids as they are most often the ones who are overlooked.  It's a feelgood weekend and the boys both got a lot out of it last year.

I'm not going to update publicly everyday.  Jason reckons I'm *going* to turn this into a book which means I do need to document everything - nasty stuff included - so I'm still writing lots but keeping the entries private.

Kyah amazes me.  Her body is failing her in so many ways but her will to live is worth 10,000 men.  She clearly has unfinished business and whether she's waiting for her birthday (11 days!) or for the drugs to wear off so she can tell us she loves us... I don't know.
I love that she's peaceful and painfree and it's also pretty cool being able to sing to her without her telling me to stop! Haha!

Dads Update
In addition to Shanell’s entry I too have been having meltdowns.  It is bloody hard just sitting around home watching her waste away, watching the meds get doubled then her falling into a drug induced sleep.  Carrying her to the bath and looking at her completely limp body is heart wrenching.  

One of the last phrases I remember saying to me is " I want you"  (which means she wants cuddles), that seemed like a week ago, since then there has been no spoken words. 

I sit with her often and read her stories even though she doesn’t respond but then again she doesn’t tell me to stop either.  I read her the same stories each time Giraffe's can’t Dance, Hairy Maclery, Brown Bear and Green Eggs and Ham.  She used to go to sleep holding these books before the meds were increased.  I also talk to her a lot and I am sure I hear a "yeah" but it really is just her breathing.

Yesterday Shanell and the boys put on a Christmas song CD I got teary thinking of what Christmas will be like this year and then went shopping to get out of the house. This must have been when Shanell snuck the breakdown.

We have Ari and Carole back on board this week so it was great to see them and Carole has been on holiday for the last 10 days and I think she was surprised to see Kyah still here.. well so are we.  We asked them if they have ever had a case where they have decreased the meds at this late stage and the answer was no.  That’s our Kyah one medical mystery always writing her own book and never obeying the rules.  

There have been many downs but the ups even though small mean so much.  My Dad once again flew down at short notice to help out with the boys due to us thinking it was Kyah’s final hours ... yeah right.  He has been instrumental once again in relieving a lot of pressure and keeping us fed and healthy.  It was his Birthday on day 500 so we had a party for him even though he cooked but it was the first time I have been around for his birthday in a very long time.

Today Shanell and I went on our first date in a long time.  We drove to the supermarket for 15 minutes then back home again lol.  Small things mean lots :)

Tomorrow is another day with more challenges and decision making in store Kyah is sleeping peacefully and we both pray for at lets a "go away" or "leaf me alone" from her though would prefer one of our names  :) 

P.S  Thanks to all those that have made donations to our fundraising for the Shave on the 4th Dec and also to those that are fundraising around the t-shirt signing.  You are all awesome.

Jase


 
 
kyahsjourney
14 November 2008 @ 05:43 pm
She did it - 500 days! What a journey! Today needed to be acknowledged :o)
Kyah is still sleeping peacefully and following her own agenda.

xoxox