Monday, September 25, 2006 1:50pm

Kaity's birthday is approaching and I wish I had started party plans earlier.

Here's a version on the photo and phrase I am using on her invites.

More details to come.

Friday, September 22, 2006 9:32pm

Have you ever felt brain fried?

I've been so busy, with Kaity that everything else has just been too hard.

I have mounting bills, pieces of paper from school which are piling up, so much housework to catch up on, a pony who needs attention, kids who are in need of the same...

And I just don't have the time to do it all.

Anyway, enough of my whinging, all in all I am the richest person I know, and I'm not talking monetary values.

I have a miracle child, along with 3 other beautiful kids who understand our challenges and accept them with grace. I have my own home here on an acre in a peaceful country town, I have an amazing supportive boyfriend, and I have supportive parents.

Speaking of parents, my mother had thyroid cancer at the same time as Kaity suffered Neuroblastoma treatment, unfortunately a nodule has shown up in the lung on mum's scans. They will watch it for now and rescan in 3 months.

Speaking of scans, I am told I will not hear anything from the hospital unless of course they see a problem with Kaity's MIBG, so since I have heard nothing, I believe they must be A OK.

Which means.....

Kaity will be turning 7 soon, that was a very big goal I didn't think in the beginning we would see, we were certainly told not to expect it. Now.. I expect it and a whole lot more from this challenge of a child. Isn't she just amazing.

So with a frazzled brain I have to consider some serious party plans for the princess. Wish me luck.

Thankyou ALL for your continued support, we read ALL messages and although we don't reply they all make us feel very loved and supported.

THANKS!!!

--------------------------

RIP Christi Thomas, our hero.



---------------------------

Friday, September 21, 2006 8:40am

Not all results are in, but the ones that are all fine.

Tuesday, September 19, 2006 1:08pm

Tomorrow, we go for our results.

Kaity still has a hacking cough. She is still sometimes complaining of pain and occasionally not wanting to walk.

She had the biggest tantrum the other night. It's been so long since we've seen something so dramatic from her..

Last time... was during treatment.



-----------------------


Thinking of Christi and Kaitlin and their families as they complete their journey towards heaven.

Friday, September 15, 2006 6:32pm

I've just walked in the door from being absent from home with Kaity for a week.

Last Friday we made our way to Perth, Kaity visited with her Grandma and Poppy for the weekend and I picked her up Monday morning for her first scan which was a CT scan on her abdomen.

All went well other than Kaity not wanting to walk, and being tired and moody.

We were told scans for Tuesday and Wednesday were rescheduled to Thursday and Friday.

So decided to stay down in Perth for the week.

Kaity started coughing and is sick again! She isn't tolerating her Iodine drops so well and mentions "My legs are killing me" a lot.

Good news - scans are done. However we will not receive news on them until next Wednesday.

Now is a time I ask for prayers for other families who are going through so much more than ourselves at the current moment.

Christi and family are in dire need of prayers as her parents say goodbye to their angel.

Penelope is showing huge disease progression.

Kaitlin's journey to heaven is close.

Abbie has already become an angel, please pray for her family now she is pain free.

Friday, September 87, 2006 8:33pm

Yesterday we watched Peter Brock do time trials in Perth, his car was the very last car we looked at before we left the gates.

Today Peter has been killed in an accident during the Targa West rally.

Another Aussie Icon killed doing what he loves best.

REST PEACEFULLY



Thursday, September 7, 2006 8:33pm

Today we ventured to Balcatta in Perth where we met with Camp Quality to make our way by bus to the International Airport.

Why? you ask?

Targa West rally time trials!!!!!!

We were lucky enough to be about the only public admitted to watch time trials. Whilst standing against the fence Rikki was delighted to discover Grant Denyer standing close by. She wasn't aware he was a rally driver and mentioned that there was a guy who looked just like GRANT! We had taken poppy along with us and Poppy is also a huge fan of Grant's (I'm sure for other reasons tho). Poppy explained to Rikki that Grant has a mini and was driving in the Targa West event....

So... Here's Rikki and Brad with Grant (isn't he gorgeous!)



Of course Kaity wasn't real concerned about the event at all and was happy to munch on chip's and drink lemonade, she did like the bus ride however, here she is.



Kaity's legs are still troubling her, I'm still hoping it's because she needs to build them back up again.

Monday, September 4, 2006 4:19pm

With sadness we heard today that our hero Steve Irwin has died tragically.
Rest Peacefully crocodile hunter!!


This is Kaity with her hostess at the Australian Zoo on her make a wish trip. The small cub she is holding was a present from the Irwin Family.



Here's Kaity with Harriet at the Australian Zoo, Harriet also passed away this year.

Sunday, September 3, 2006 3:17pm

Today is the most gorgeous day that we decided to spend some time with Poppy for Father's day.

We spent some time in Pop's garden, Kaity picked some flowers for Pop too.

Here's Kaity today.

Saturday, September 2, 2006 10:11am

Spring is here! Hopefully the weather will be convinced of that real soon. The land is beautiful here in spring and this year is no exception.

Kaity is making small strides to getting well. She is suffering with her legs but she's had so much waste away that I believe it's from that, she just needs to build them up again.

So a little more about our hospital stay. Kaitlyn was hydrated the whole time, she didn't get out of bed other than to wee in the onsuite toilet. She was extrememly moody even throwing a face cloth at a nurse once. We had a single room which was nice and made me feel better about being on the infectious disease ward.

Our oncologist came to visit and stood in the doorway with the door open, in no way was he entering the room to be infected. Also Dr Rahman who was on 3B when we were treated saw us up there, upon leaving he shuddered and said thank goodness we were leaving that place as it was the worst place to be.

My stupid ex husband showed his intelligence by bringing his 6 month old child to visit. Which now confirms my belief that this man is not capable of protecting Kaitlyn. I feel sorry for the child that was conceived to give Kaitlyn a baby, a baby that Kaity doesn't need or want but it is pushed on her to an extreme, I'm sure it's called brainwashing.

I also asked this man to sleep overnight with Kaity for one night, unfortunately his response was no. I was feeling so ill, nearly fainting one night putting Kaity on the toilet. I just needed one night break away from the hospital room. He also sat and watched me struggle to put Kaity on a bedpan at one visit, no offer to help and no intention of helping.

Well anyway I'm sure that gets across the general type of person I'm dealing with. After two heated arguments I was glad when they said Kaity could go home and I would not feel intimidated by him and his family arriving together to visit, and the conversations Kaity would come up with after they left, one example being that she was going to live with him.

A Big thanks to Dawn, who as usual was my ear. Paul who suffered with having to listen to me, he also offered to spend the night with Kaity, she would have adored that idea as she still insists I will marry him one day.

I lost a couple of kilos from being at the hospital (a guy friend so kindly noticed straight away.. thanks), yeah the food was so terrible mostly it was easier to just not eat! I hardly left the compound and with our first visit I didn't even have a car. So going for something else was not an option. I managed to wash a couple of times, since Kaity was running out of knickers, the hospital has a laundry downstairs so that's handy. Thanks also to Dawn who bought Kaity some new PJ's on our first visit as it was such a rush trip by ambulance I didn't get to pack anything.

The flu that Kaity was dealing with was made her very unwell, in fact on the news last night was a story of a footballer, a strong healthy man who will now be taking the rest of the season off because of this same flu. The whole time in hospital I kept imagining Kaity being so sick during treatment, she surely would not be with us today, which is why she was protected from illnesses, she didn't have visitation access because she had to stay well. I'm so thankful I was able to keep her well during treatment, because ultimately it could have mean life or death.

So here we are back at home, Kaity is improving and eating ten fold to make up for the lost time. So other than the leg issues I think we are back on track to getting back our healthy girl. Thanks Caroline for the great suggestions on what to give Kaity to eat, you must be a very clever girl.

Next Thursday we have an afternoon trip planned with Camp Quality. I'll leave that as a bit of a surprise for now. Then the week after we have scans scheduled for 11th 12th and 13th.

Keep us in prayer until then please.
xo

PS Kaity was upset to miss our local show here, as we planned on a helicopter ride and camel ride. Our neighbouring town will have their show coming up, so look out, we're going to take that helicopter ride that Kaity was wanted for so long! It's not cheap and only a short ride, but will be worth her excitement.


Yesterday a parcel arrived for Miss Kaity from her Aunty Anne in Maine USA.
Aunty Anne sent an early birthday present, guess what Kaity got? A beautiful American girl doll which looks just like Kaity!

Here's a pic.



Thanks Aunty Anne, we love you!

Thursday, August 31, 2006 2:45pm

Just a quick update.

We left on Friday to go back to hospital.

We were sat in emergency with Kaity in the worst state and mood ever.

A lady and baby sat near us and Kaity shouted down the room yelling "I don't like babies make them move!"

So with Kaity's mood continuing and her condition not improving for a while we were stuck on the infectious disease ward for a while.

Finally Kaity began to feel better but her weight has suffered and we are now home trying to re-cuperate.

Thursday, August 24, 2006 10:03am

This is Kaity last Sunday under her pretty new quilt




Thanks for prayers, we are drinking.

But...

Complaining of much pain in legs and hips.

If you are the praying type, please pray for this issue.

Kaitlyn has lost so much weight, she is literally skin and bone, she has not eaten in over a week, is finding it hard to bare weight on her legs, is very very moody, and still coughing a great deal which must hurt her little chest.

Kaitlyn has her last scans coming up in September.

To see Kaity's whole quilt click on this banner -

School photo's came home today.

Have a look at our princess! Hasn't she grown so much

Monday, August 7, 2006 5:09pm

Again, it's been a while since I've written anything here.

Kaitlyn has been busy, she has so many wonderful people in her life to keep her occupied that she never has a dull moment.

This weekend she spent with her grandma and poppy, she even spent a day at the zoo with them and came home to announce her favourite animal is the Zebra!!

She spent a day last week with one of Rikki's friend's Mel. They enjoyed making jelly, watching video's and a lot of other busy things. Thanks Mel for keeping Kaity happy and occupied.

Kaity has received an appointment with a craniofacial specialist later this month. One reason for finding out if something can be done to improve this is for her ability to eat easier, along with hopefully avoiding horrible social issues in teen years.

Kaity has taken her new bike to school in hope of learning to ride with her Physical therapist and also her teachers aide. She leaves it at school so it's always there for her.

Brad had his 14th birthday and wanted a brand new Hoffman BMX, which he received and loves.

I was lucky enough to get a free ticket to the Lee Kernaghan concert this weekend. We had a fun ride on the bus to Merredin and set up camp. A great weekend with great company, although very cold camping out, luckily someone lent me their swag for the night.

Monday, July 30, 2006 8:41am

So after my concern's from last week, Kaity is now feeling fine again and is today back in school. I think the first week back to school took a lot of her energy.

Kaity has been granted a day and a half of teacher aide time. This time is broken up into time frames on each day. This has been allocated before she has been officially assessed.

Today she will do her IQ Psych evaluation with the school Psych. They only have one shot at this so please say some prayers today that Kaity will be in a good mood and willing to "play". The assessment will be the indicator of whether or not she will be allocated more aide time, which I am sure she will be in need of once she heads off to "big school" next year for grade one.

Last week we did visit with the local GP as I felt a lump in her neck, our GP was happy that they were normal nodes, he felt many.

Friday, July 28, 2006 10:18am

Just a bit concerned today.

Yesterday Kaitlyn complained of back pain. She NEVER complains of pain!!

Today she is complaining she is tired. She NEVER complains she is tired, she's always the last to bed and the first up.

So just a little concerning for me.

Thursday, July 27, 2006 4:02pm

School is back in, the rains are here along with the cold.

Kaity is great!

Tuesday, July 18, 2006 7:22pm

Friday we welcomed some visitors to our house.

We met Allie, Brett, Mikayla, Kiara, Brayden, and Beau when their little angel Kaleisha was having her second stem cell transplant.

Kaleisha was not only the first child we met at hospital upon Kaitlyn's diagnosis but the first Neuroblastoma child also.

We found Kaleisha, also known as "GRUB" to be the most intelligent little girl we knew. She was strong, brave and very very cute.

Unfortunately Grub relapsed in her lungs and passed away after a short remission.

So... Allie and Brett decided to bring their bus up for a holiday along with the kids. It was great to see them and Kaity clicked with little Mikayla immediately.

There was lot's of motorbike riding, a campfire and lot's of laugh's. We also spoke about Grub a lot and remembered how beautiful she was.

It was eventually time for them to leave and Kaity asked if she could give Mikayla (also known as "Macca") a cuddle and kiss. It was beautiful, Kaity leant down and did exactly that.

Today find's me with 8 kids at my dinner table. I know, I think I'm losing the plot. It's loud here, but good fun too although I'm kind of looking forward to school going back next Monday.

Work has been scarce during the school holiday's which has meant money is tighter also.

Monday, July 10, 2006 1:01pm

Hope you all caught little Dylan Hartung on channel seven last night.

His whole story had a somewhat surreal timing. Only days ago a beautiful girl from hospital passed away from her relapsed Neuroblastoma. Then last night I watched Dylan who is very much still in the fight. I must admit my tears flowed, along with the kids who decided they would pile into my bed to watch together.

It was nice having them there but Kaitlyn was missing, she's spending time at her grandma's and poppy's house for some school holiday time. It didn't seem quite right watching Dylan without Kaity beside us.

I am the lucky one though. My little Kaity will be back. So far she's a survivor of this terrible beast which has now claimed way too many little people we know.

So last night we chatted about our friends from hospital lost to Neuroblastoma, Wainey, Jarad, Jessica, Kaleisha and Lauryn. Other children from our hospital we never met but have very much read their stories and seen their pictures, Josiah, Kurtis, and Katie. Other children from our own hospital which we have not heard from or how they are doing, Sophia and Samuel. Other children from Australia lost to Neuroblastoma Bianca, Jesse, and Dakota. Then the aussie children still fighting, Dylan, Fraser, Amber, Jay, and Kahlilla.

These are just a few of the children from Australia who have dealt with Neuroblastoma. Imagine how many more there are that we don't know of.

So today my thought's are of our little Neuroblastoma friends we have come into contact with along the way.

If you'd like to visit with some of them at their websites, please visit our awareness page. Feel free to contact me if you are willing to add your child. It's my small way of connecting Neuroblastoma kid's around the world. Hopefully connecting the families to some type of support close to home.

Awareness page - Click here

Saturday, July 7, 2006 12:22pm

It's a date!

Sunday night, 8pm, Channel 7.

Be there!!!








-------------------------------------------------------
On a much sadder note, a little friend from hospital has gained her wings and flown to heaven. Lauryn was born the same year as Kaity only 3 months later. Lauryn was diagnosed with Neuroblastoma a year after Kaity. She has now become an angel after 2 years and one month of fighting Neuroblastoma. My thoughts are with Lauryn's family, and I will never forget her beautiful nature and cheeky smile.

Thursday, July 6, 2006 9:42am

The following is a letter I got home from Kaity's teacher yesterday -


Colleen
Thought I'd let you know Kaitlyn played chasey with the children at lunch time for about 10 mins.
She was running after the children smiling and laughing.
I extended lunch time to let “the game” continue.
Thought I’d better tell you in case her leg muscles are really sore tonight/tomorrow.
Chris



WOW!!! Kaity has just enjoyed her first real game of chasey with her peers!

Recently I feel like my little caterpillar is emerging to become a beautiful butterfly. She's changing so much and learning so many new things.

Monday, July 3, 2006 8:27am

I'd like to send you in the direction of a new angel's page, an amazing article has been written on little Benny Petz, the story is well written and has very emotional photo's to go with it. I followed Benny's story with Neuroblastoma for a long time and recently Benny went on to heaven and is now pain free.

Visit Benny




So the bike riding hasn't been as successful as I thought it could be. Kaitlyn has no idea on how to peddle, which means it's back breaking work trying to convince her to try. She also doesn't like the small wobble the bike has, she has a very insecure balance and doesn't enjoy sitting on the bike at all.

So.. onto the second idea of the head PT we saw.

Her idea was to set up obstacle courses so when Kaity rides her Possy she has some fun little games to do which will require some small amounts of physical exertion. But because she's doing what she loves to do she will not recognise it as a chore, rather more like fun.

The PT would like Kaity to begin Pony club also, but I'm not so sure on that yet. The PT is overjoyed that Kaity has a pony and said this is very good for her. She did say we are doing everything right for Kaity, and the fact we moved to a two storey house was another wonderful thing for Kaity.

Kaity's muscles are very weak and need extreme building up. She also has balance issues.

As the month of June ended and I changed our calendar, Kaity noticed and we had a huge conversation on why it wasn't July yet...

It went like this...

K - "mum it isn't July"
M - "yes Kaity it is now, see this is the day today" as I pointed to July 1st.
K - "no mum, Mrs Mann didn't tell us it is July"
M - "Kaity Mrs Mann will most likely tell you on Monday that it's July now"
K - as she looked closely at the calendar, she turned it to the next month and exclaimed "well ok then, because that means it's nearly August, and I like August"

Thursday, June 29, 2006 5:59pm

Today we met with the head Paediatrician along with head of OT and head of PT. The meeting was to ensure everything is being done to help Kaitlyn as humanly possible. I cannot name doctors or facilities as someone other than myself has tried contacting Kaitlyn's doctors asking for information on her.

After a wonderful meeting where Kaity was happy as ever we made our way to purchase a new bike. This was suggested by PT to build muscles. Her Birthday present will be a new trampoline as suggested by PT also.

Thanks go to the unnamed person who put forward the funds to buy Kaity a bike. A long time friend who has always stood by when needed. THANKYOU again.

Sunday, June 25, 2006 9:29pm

Another anniversary today.

3 Years ago today was the day we were told of Kaitlyn's official diagnosis, up until now we only knew she had a tumour.

3 years ago today we were told she had Neuroblastoma and she was at stage 4.

Many tears were shared as we realised the fight ahead.

Tuesday, June 20, 2006

Today marks the 3rd year anniversary since Kaitlyn has been diagnosed. In the past we've felt sadness on this day, but today, pure joy and amazement.

Kaitlyn rode her pony Possum, she enjoyed a bush ride and is learning to spell so many words, so we practised whilst riding.

Just a few which she spelt

Sun
Log
Pooh
Tigger
Rabbit

She's getting so very clever.


3 YEARS AGO

On that frightening Friday night I made my way to hospital with my baby in the back seat. She was in and out of sleep and had been sluggish for the whole day. It was dark and cold. We walked through the dark into the hospital and were put straight onto a ward.

Kaity was relatively comfortable to be there and we met with Dr Lana, who is now married to Peter Bell from the Dockers. She managed to feel Kaity's tummy which no one to that point had managed to do. She'd had an ultrasound a month or two before hand and everything was fine. It was then that Dr Lana felt a mass, unbeknown to myself thank goodness.

Saturday morning we woke up and Kaity was sedated to do an ultrasound on her tummy. It was then that the technician told me of a few abnormalities. We were sent back to the ward where Kaity slept solid.

An hour later I was informed of the mass inside my baby. Alone and terrified I managed to make some phone calls. A few of you would remember.

That afternoon we were sent down to the children's cancer ward, which later became home... WARD 3B.

That day will forever be etched in my mind.

Friday, June 9, 2006 10:09pm

Our hospital visit was a good one. Kaity picked a white mud cake to present to staff, with the words "Thankyou ward 3B, Love from Kaitlyn" she loved handing that over herself whilst I was nervous it was going to end up on the floor.

Tash and Dawn met us there to keep us company for the day. Blood counts were all within normal limit. We didn't get back urine marker counts.

Weight 19.7kg
Height 115 cm

Dr Angela is looking into the cranial/facial specialist to see if anything can be done for her chin.

We missed private OT due to time limits. Will need to reschedule that soon.

Captain Starlight was on his last day at our hospital so we made our way up to see him before leaving. Of course he remembered her well and was happy to see her doing wonderfully. He mentioned it was his first few weeks at hospital when he met Kaitlyn, so he knew it was three years ago since diagnosis, he was very excited. I thanked him for everything he did for our family and he in return said the pleasure was his, he will always remember our girl.

Yesterday we met the lovely Jo from local Physio. Jo will continue to work with Kaity in school hours from Kaity's classroom. This saves me taking time from work and keeps Kaity in her safe enviroment.

Not much more to write, I am pooped, so much happening in my personal life at the moment. It's all good.

Rikki turns 16 next week, busy planning her party also. She decided on a stereo system for her birthday,... ouch for the neighbours, we sit at the bottom of a hill on an acre and sound carries so well here.... oops.

Sunday, June 4, 2006 5:26pm

Kaity has been super busy. Her country girl spirit has shone through today as she woke and wanted to ride her four wheeler. Later she asked to go to town for a milkshake and of course you have to do that on your pony if you have one.

So this afternoon she rode Possum into town for a milkshake.

She then spent some time feeding watering and cuddling her prize possession. She then grabbed a mandarin off her tree and sat out eating it.

Tues she has speech, Wednesday oncology and OT, Thursday Physio. Another busy week coming up.

Wednesday, May 31, 2006 7:54am

There's a little girl we know, such a beautiful little character, and although we've not met her personally we fell in love with her personality and charm. Julia had many set backs during her transplant and is now resting in heaven. Please visit her page, have a look at her photo's, in particular there is one of her using her vent as a trunk to pretend she's an elephant. What an amazing little girl. Please offer your support to her family, I hate to think how they are feeling today from such a loss.


Tuesday, May 30, 2006 8:07am

Just a quick update as I'm finding not enough hours in the day to do everything required.

Yesterday I took Kaity to her new Occupational therapist. Kaity did great and loves her new therapist. She established that Kaity seems to have paused development. We will go back to visit again after our oncology visit soon.

We popped by to visit with Paul, Kaity managed to get comfy on his sofa and watched Ice Age in style on his big screen. We also did some food shopping, Kaity managed to add a lot of things to the shopping trolley. So this morning is enjoying spaghetti on toast for brekky, something I would not normally buy is spaghetti in a tin. She's a clever girl and certainly knows what she wants.


Today we have OT here locally and Alexis from Speech will visit with Kaity at school.

Kaity's IQ assessement may be done later this week, possibly Friday, so a very busy week indeed.

Saturday, May 27th, 2006 2:27pm

Another two Neuroblastoma angels

Please offer prayers and support to Abbigail's family.

and

Zachary's family.


Tuesday, May 23, 2006 5:47 AM CDT

So today I met with the school psych and other staff members from Kaity's school. I was really pleased with the results and decision to assess Kaity's IQ to determine how much aide time she will be entitled to.

However this afternoon my jubilation turned to dismay, I received in the mail a letter from her father's solicitor. I am now feeling very overwhelmed and the feeling of just pretending she is normal and forgetting all upcoming appointments would allow us the normal life, my other children's issues have not been dealt with and they have not come before Kaitlyn since her diagnosis. For this I apologise to them and I wonder if I will ever be entitled to be the mother they deserve.

I've not mentioned but I've been working for a few weeks now, I've had to find work due to Kaity's dad not supporting her financially, and I was hoping the extra money could be put towards her extra appointments which I was planning.

I've had to take a lot of time off work recently to get her to many appointments, and have tried to make up working hours during my weekend, which means the kids miss out once again.

So to find out today that I need to revisit a solicitor, is absolutely gobsmacking and the feeling of giving up overwhelming. How do I tell the boss that I need even more time off. Which means possibly making more hours on the weekend etc... I feel like I live in a disco ball forever spinning.

I want to get off the ball and can see the only way of doing this is to pretend she's ok. Let the system fix it. Why should I fix her issues before the other children, who in all likelihood will live longer than she.

Then I think of that thought, and I know that's not my way, I will help her to the best of my ability. She's mine, she's perfect but she needs extras.

Please god, grant me more time in the day, grant me energy to deal with tossers who continually throw me curve balls, and grant me patience.

Monday, May 22, 2006 8:02 pm

Finally today I have in my hands a hot little copy of Kaitlyn's last assessment.

I will copy here bits and pieces which are mostly relevant

Kaitlyn is 6 and a half years of age, main concern's are educational and developmental especially gross motor and fine motor. Bilateral mild high frequency sensorineural hearing loss, severe micrognathia.

Kaitlyn underwent a Griffith's assessment today at a chronological age of 79 months. She complied initially but would easily tire and her interest would need to be constantly engaged.

Results of Griffith's
Locomotor 42 months
Peronal/Social 40 months
Hearing/Speech 58 months
Eye/Hand 42 months
Performance 62 months
Practical reasoning 42 months

Her overall mental age was 47.6 which is equivalent to approx 4 years old and her GQ was 59.5

Kaitlyn needs significant help educationally and also with physio, OT and speech.
Perceived muscle weaknesses most likely to stem from repeated hits with chemo, radiotherapy and weight loss.



So there you have it.. I officially have results that prove our dear stupid friend WRONG!!!! It's going to take a lot more than Pro active education and determination to fix Kaitlyn's issues.

It's also been mentioned that some of Kaitlyn's symptoms could be due to some type of hereditary syndrome. Her Micrognathia, webbed toes, developmental delay and earlier hip issues all point to some type of larger issue. Thankfully all my other children are healthy, so I'd be thinking this comes from her father's side of the family.

Our paed is talking about chromosone testing but since I've finished having children this is not my concern and I will not go ahead with this.

Saturday, May 20, 2006 9:09 pm

Wow, what a week I've had personally.

Monday started out when I took Kaity and Rikki to Perth, Rikki-Lea had an appointment to visit with her new correspondence teachers as she has left school and will now study her TEE at home via correspondence through SIDE

Kaitlyn had an appointment with a private OT. Jill Creerie was very nice but Kaity was way too wiped out to aknowledge much at all. She was coming down with her very first sickness for MONTHS!!! A cold.

Jill has given advice to get in touch with another OT who specialises in children "Like Kaity" I am still yet to give this lady a call, I've been super busy and just haven't found the time, and Jill did advise this will be costly along with time consuming.

So Tuesday, Kaity had a speech appointment, this went better and she was more willing to "Play". I truly believe she is totally sick of being assessed constantly.

Thursday, I made my way to Perth, and dropped Kaitlyn at her grandma's and Pop's. There are certain rules that Grandma and Pop have to stick to otherwise visit's will be reviewed. They go something like this

1) she stays in their care
2) she does not visit with one said Person or receive visit's from said Person

After Kaity's drop off I headed to the shop's to finish finding an outfit and I had my hair cut. Then off to Pier 21 Resort in FREO!! Wow! Beautiful.. I wish I'd taken my camera as my apartment was right on the river with yachts right outside my balcony.. amazing and breathtaking.

I arranged for a taxi to take me to Royal Freshwater Bay Yacht Club where I ... along with other cancer parents were dined and wined. It was simply awesome and the company was great, we were all there for a reason, our reason, our children who all had one thing in common... CANCER. Some were old friends, some had lost their children. Two in particular was Michael's Family, who lost Michael just last year, Michael suffered severe burns in an accident as a young child and then aged 12 was diagnosed with Liver cancer. He was an amazing spirited boy, who took Kaity by the hand to play on a trampoline knowing they both had challenges. Sadly Michael died from his cancer. We will never forget that strong young man who made our princess smile.

Another family who we made friends with a while back informed us of Shaun's recent relapse. This brought many tears for us during the night, many hugs and in sorts closer together yet again.

So after dinner, all 35 restaurants who were participating in the Chandon Supper Club sent their table of patrons to an undisclosed after party. We found our chariot awaiting and had the noisiest ride to North Fremantle beach where the red carpet awaited and the media flashed their camera's in our eyes. An awesome party followed and we all eventually hailed taxi's to take us home at 3:30am.

Many celebrities were in attendance but once again the Chandon wine and champagne was too nice to allow my eyes to focus on who was who.

Friday morning I made my way sheepishly home, and then went out on a girls night out last night.

Kaitlyn will be home Sunday.

Thanks to all who still come to visit Kaitlyn's page, the support we still receive is amazing and I enjoy recieving emails from you all. Unfortunately I am a little behind in emails so if you have not heard from me ... drop me another line and I'll get back to you.

Before I do go, a BIG THANKYOU to a little girl named Illis who sent some clothes to Kaity which she had grown out of. Kaitlyn loved opening up the bag to find some new clothes and would not wear anything else all week. Another Angel in our support network. Thanks Illis and Felicity.

Wednesday, May 17, 2006 6:57pm

Mother's day was great!!!

Kaitlyn woke me early, and I was spoilt with many hand made presents.

She's so awesome that every day since Sunday I've had cuddles and kisses and "Happy Mother's Day!"

So basically, every day is a Happy Mother's day with Kaity in my life.

Friday, May 12, 2006 3:45 AM CDT

Two new NB Angels gained their wings
Noah

and

Jackson

Please remember their families and keep them in your prayers.




Lighthouse Laboratories (LL) is now at Murdoch University conducting NB research. LL has been given permission to conduct a street collection in Perth on the 16th of June; apart from seeking volunteers from all the students (100 hopefully), I am seeking help from other friends and contacts, i.e. to spread the word to others that they know in WA.




VOLUNTEERS NEEDED FOR STREET COLLECTION

Childhood Cancer Research - Animal free

When? 16th of June (a time slot between 7.30am and 6pm)

Where? Metro area to be allocated

Who for? Lighthouse Labs, a WA medical research charity located in Murdoch University.



If you can help or would like to know more: contact Graeme Tucker 9360 2122 or,

email info@lighthouselabs.org.au with the subject heading 'street collection inquiry.'

~Thankyou~

Friday, May 11, 2006 8:40am

Kaitlyn really loved Mother's Day celebrations at school, I got the most gorgeous bunch of flowers along with a hand made bracelet, mobile to hang up and card.... awesome!!!

This morning as I brushed her hair, she complained I was taking too long, "C'mon mum I'm going to be late... Ouch gentle!"

My mind was rushing with the thought's of baldness and remembering the days we just had to run a wash cloth over her head.... sigh.. that's one memory I love, the little bald head.

I always thought Bald babies were much cuter and was always lucky enough to have baldies.

So... back to Kaity... we have a few appointments coming up. We will be busy. She's been busy at school learning to ride the trike, with help from her wonderful teachers, and she has been practising for Cross Country..hmm.. I wonder how that's going ... Kaity HATES running.

I've been lucky enough to be invited to the Camp Quality Supper club night... OH MY GOODNESS... what will I wear??? Camp Quality are even offering to pay for my accomodation for the night.... they are so amazing. But I will be so nervous about finding the "RIGHT" outfit. Looks like I need to go shopping.

Friday, May 5, 2006 6:22pm

6 Months after Kaitlyn's diagnosis in December 2003 there was an accident in NSW, two little girls were critical with bad burns when a car smashed through their day care centre.

Sophie and Molly suffered massive burns when they were trapped under the car that crashed into the Roundhouse Childcare Centre at Fairlight.

Molly was released from hospital in March (2004) after enduring 18 rounds of surgery for burns to about 40 per cent of her body and nearly two months in intensive care. Sophie lost both feet, some fingers and suffered third-degree burns to 85 per cent of her body.

Sophies battle was huge and today she was been wheeled in a stroller across a pedestrian crossing only to be hit by a car which hurled her 18 metres down the road.

Please pray for this family, as if they haven't been through enough already.

You can leave wishes for Sophie here

To read more about Sophies accident


-----------------------------------------------------------

Here's an email I sent to the Nb list today

Today I added a ticker to Kaitlyn's website.

I've used it for working out how long it's been since Kaitlyn's last transplant/rescue.

It's now been - 2 years, 3 months, 2 weeks and one day since Kaitlyn received back her second lot of stem cells (she did tandem transplants).

In neuroblastoma world as you all would be aware I think Kaitlyn would be classed as "doing well".

I hope her story gives hope and strength to newly diagnosed parents.

Today I also received written confirmation that Kaitlyn has some type of intellectual disability which requires further investigation. Words along the lines of "Intellectual disability, developmental delay or Autism spectrum disorder" jumped out at me. So for now, this means more assessments, which in turn means a new department to deal with yet again which means more time I'm waiting to get help for my girl.

So my post is a little good and a little bad, but all in all, she's here with us and alive and happy.
Bless our miracle.

Friday May 5, 2006 8:50am

To celebrate the Western Derby this weekend the school allowed the kids to dress in their Footy colours. It's a bit much to expect my kids to support the same team so here they are in their individual team colours. Each child had to donate a gold coin, which in turn went to the Cancer Council of Australia.

GO LIONS, EAGLES, DOCKERS!!!!!

PS - Kaity threw in a few extras to pretty up her footy jumper and Travis has a foul look on his face because I was making them have a photo and he didn't want to be late for school.


Thursday, May 4, 2006 8:29am



Another NB mum is organising a reorder of NB Magnets, the orginal design was done by Misty - Angel Trey's mum

You will have to be quick as she is placing the order soon.

Email Candace at CandaceMas@AOL.COM

Please use "NB Magnet" as subject line.

Monday, May 1, 2006 9:01pm

Kaity now weighs 20.5kg !!!!!!!

May is here, where has time gone? Another month and it will be the 3rd anniversary of Kaity's diagnosis.

I'm thinking.. party time? Celebration of life time?

I'm still in awe that my pretty little girl is healthy, happy and still here. Stay tuned you are witnessing a miracle.

2.9 year's from diagnosis. I'm excited.



Kaity Loves Cooking and can now do it just like mummy in her new apron - Just like mummies, Aunty Anne sent it from Maine

I have cancelled Kaity's OT appointment, and will be looking at following advice of "Pro Active Education and determination." The appointment was going to cost $157, so good way to save money.



Today Kaity received a QUAD Motorbike from an old family friend, Thankyou Ken, she loves her new bike. Kaity and Travis's old bike was stolen and wrecked by three teenage boys aged 17, 17 and 18. We did get the bike back but it needs work before it can be used. Which is a shame because I was going to join Travis up at the local scramble club, it will have to wait now.

Saturday, April 29, 2006 12:33pm

Rest Peacefully Sweet Caleb - My Hero

Visit Caleb's site





I will take a quick moment to update on the princess.

She's doing great, she's had fantastic school holidays.

We've been inundated with visitors which has been nice, Trent stayed two weeks with us and is very welcome to come back anytime. Tash, Geoff and Dawn came for a couple of nights and we enjoyed their company.

We've had so many changes to our life lately, I'm sorry I cannot go into detail as there are now reason's I cannot share certain information. It's been busy and tiring but I will say our life now seems on track and hopefully will continue this way. I'm finding less time to check on our wonderful NB friends, but please know I am thinking of you all.

The weather is cooling and I now realise how much Kaity has grown, last season's clothes are just too small and tight now, I will weigh her tonight as I have not done so in a while, but I'm sure she's stacking on the weight.

Thankyou Aunty Anne for the present from Maine. Kaity loves the big book and is taking it everywhere she goes.

My best wishes to all
Colleen

Tuesday, April 25, 2006 10:40am

This was taken on the night we went to Matilda Bay restaurant.

Thanks Camp Quality! Click their banner to visit them.

Wednesday, April 19, 2006 8:41pm

Another two small NB Angel's

^i^ Navada ^i^

^i^ Gavin ^i^






Happy 7th Birthday Caleb

Sunday, April 16, 2006 3:13pm

Easter Hunt Fun

Friday, April 14, 2006 11:06am

Kaitlyn with her friend at the Easter Bonnet Parade at School.

Wednesday, April 5, 2006 8:07pm

Ring a Ring a rosie



A pocket full of posies



We all fall down




Thanks Thomas for having us at your birthday party. Kaity was so looking forward to your birthday for a long time.

Monday, April 3, 2006

Prayers please for
Julia

Benny

Caleb

Ashleigh ^i^

Cam ^i^

Courtney ^i^

and

Nick ^i^

Sunday, March 19, 2006 11:55am

---------------------------------

Kaitlyn's Aunty Nadia is participating in Shave for a Cure this year. If you'd like to know more about Nadia's shave, feel free to email. Shaving will take place at Koorana Primary School in Warnbro.

Nadia, this takes a very brave soul. Thankyou from Kaitlyn.

Here's Nadia's letter

Hi everyone,

This year a friend and myself are participating in the Leukaemia Foundation WORLDS GREATEST SHAVE
we will be taking it all off (number 1 or 2) on the 5th May 2006 at Koorana Primary School.
If you would like to sponsor me in this event please contact me at:
email bana@iprimus.com.au
you can also donate on line at www.worldsgreatestshave.com
using a credit card all you need to do is click on sponsor and search my name Nadia August.
Hope to have your support and if you are not busy on the 5th May at 9am come and have a look.
Thank you to all
Nadia

---------------------------------------


---------------------------------------

I'd like to take the time to thank all our beautiful supporters we've met through our journey with cancer. I consider ourselves to be extremely lucky.

I am very thankful for Caringbridge and will one day look back and read with my daughter the experiences we've encountered through our journey.

It is with regret I will have to leave this page for now. But I am thankful I am leaving it a happy place with the ability of being able to say "We're enjoying our remission status"

It's a personal decision based on Privacy issues.

Rest assured if Kaitlyn does anything extremely wonderful or if any medical issues arise, we will report.

In three months time Kaity will visit with the Oncology clinic, we will report that. In the mean time we will be busy with a Paediatrician appointment coming up along with optometrist. This will be expensive but it has to be done and will be done for KAITLYN.

Praise our lord for our Miracle girl.

I really cannot thank you all enough, amazing people who continue to support YOUR little wonder girl, your miracle, your Aussie little Cinderella.

Here I leave you with pictures of Kaity and her BABY.
Soul mates forever. Kaity and Possy.



Loving on my baby - Kaitlyn



Resting in the shade after a long ride to town.

Wednesday, March 15, 2006 3:28pm

This morning I was reluctant upon greeting people to say "Good morning" and stuck to "Morning". Not knowing how this day could pan out was Nervewracking.

We made our way to hospital in relaxing fashion. We were in no rush, we knew once we got there we'd sit for hours in a waiting room no matter what time we arrived.

Parking was the worst I've EVER seen. Even the Ronald McDonald house was overflowing so I couldn't borrow from them. We ended up parking a walk away, why not, Kaity can walk nowadays anyway, wow, I remember so vividly the days she was so sick and tired that I'd carry her all the way in. NO MORE!!

We collected supplies of munchies for our wait and we .... waited.

Eventually we were called in by an amazingly nice doctor, who I can't recall her name but we've seen her once before and as soon as I work out her name I will replace it here. She's so thorough and oh so nice. She doesn't actually work at PMH so I'm not sure what the deal is there but we were glad to have her today what ever the story.

She, along with myself is very annoyed that Kaity's assessments for OT, PT, Speech and Dental for her jaw have taken so long. We agreed that OT and PT should now be priority and we have to keep pushing.

So.. I guess you are all waiting for scan results. Guess what........

Today............

Kaity was officially declared in Remission of Active disease!!!!! Her scans are stable once again. We don't have scans again for 6 months. This in itself was good news as Kaity has been saying she isn't sick anymore and she really doesn't need so many photo's (scans).

We will however go back for urine and blood and general check up in 3 months. I think we'll take cake !!!!!!

So.. thankyou very much for all your continued support, each and every one of you out there. Our Miracle girl ROCKS!!



Tuesday, March 14, 2006 9:00am

My goodness, what a fun night Kaitlyn had last night.

Kaity was invited along to a Camp Quality Launch of The Chandon Supper Club, along with three other children they were asked into the kitchen of the Matilda Bay Restaurant by owner Warwick Lavis. While in the kitchen the children prepared some food, Kaitlyn would NOT be in this, she was NOT getting her hands dirty for anyone! She did however wash her hands along with the other children after they finished, she loves water.

After the kitchen duties and lot's of photo's the kids came out to help with serving food and basically looking cute. Not a hard job for these 4 kids.

Many celebrities were in attendance, Kaity is not at an age where she would know any of them so she was blissfully unaware and happy to keep handing out food and napkins. In my opinion everyone in attendance was a celebrity. Slowly she came out of her shell as she ran amuck with the Camp Quality Puppets.

So, more about the launch.



Basically here's how it works.

Twelve people pay $250 each for a night of fine food and wine. The fine restaurants have each donated their premises and food for the night, and Chandon have donated all wines. There will be a host at each night, and after dining and wining the members of the dinner will be whisked away by limosine to a secret location to an after party. Now, the best thing about these nights. ALL proceeds go to our wonderful CAMP QUALITY. So, the whole $250 from each diner goes to Camp Quality. How amazing is that?!?

I cannot express enough how wonderful Camp Quality have been to our family. Many many fun times we've spent in the company of Camp Quality. We've been to camps, adventure world, ten pin bowling, all family events which have helped to keep us together. During Kaitlyn's treatment the older kids were basically left without a mum, they must have been very scared of their future and it must have been a very daunting time for them, but once we had time to enjoy we started going on camp quality events, the other children were always welcomed and included. That's the amazing thing about camp quality, it's not just about the sick child, it's the family.

So, a BIG thankyou for to Camp Quality for allowing Kaitlyn to share this night, and to Matilda Bay Restaurant for hosting the night and allowing the children into the kitchen.

For more details on how you can enjoy a night in the name of charity




Friday, March 17, 2006 10:34am

This morning Kaitlyn along with her friend's from Hospital are featured in the paper on Page 33.
The feature story focus's on little Teah who we first met at Camp Quality Camp, Teah is another little miracle child and has most amazing little spirit. We fell in love with Teah the minute we met her. Here's the copy from today's paper. Also look out in local papers, specificaly the Fremantle Gazette, and there were a few others which I cannot recall.












Don't forget to check out the NB awareness page, and if you'd like to add your child please email me.

Friday, March 10, 2006 7:10pm

Kaity had a bad night, she's coming down with something. But that's not unusual after she's been to Rockingham.

Her temp is up.

I hope it clears before Monday as she has a fundraiser for Camp Quality to do. Camp Quality has been the best support for our family, we could never have done some of the things we've been able to enjoy with camp quality. So I'm more than willing to help out anyway I can.

Later on 9:30 am

I dosed Kaity up on panadol, she's still having her iodine drops and hates them. She went back to bed and rested until the panadol kicked in, then I mentioned she had the special new's bag for school and she decided she needed to go to school. So we searched for something special to put into the bag, we found an Emu Egg which has been hidden away from small people for a long time.

So she was late for school but she made it there. She did try and tell me that Possy really wanted to ride and that she'd be better off if she went riding instead of school. Nice try sweet girl!!


Don't forget to check out the NB awareness page, and if you'd like to add your child please email me.

Wednesday, March 8, 2006 8:20pm

Monday morning my parents made their way up to our house. Dad decided that he had unfinished business in Rockingham so he travelled back with me and we left mum (Nanny) in charge of the 3 big kids.

Monday night Kaity was dropped off to us and was happy to find a HUGE parcel had been delivered to her from Aunty Anne. She was even more excited to open it up and pull out a Cozy Heart Penguin (care bear cousin). She's been wanting one for a long while. Thankyou Anne. She dug deeper and was so happy to find some horses with riders and some furniture to go with them. She played with them for a long while with our visitor - Paul. She hadn't seen Paul for a long time but he was very helpful during her treatment and pulled her through many trying times. They picked up right where they left off and had fun teasing each other. Never a dull moment with those two together!!!

Tuesday morning Kaity and I headed up for her MIBG injection, she was very brave for her IV placement and the injection which followed. Of course Cozy Heart Penguin was our best friend for the day. We lunched with Dawn and Tash back in Rockingham.

Wednesday we made our way to hospital around lunch time, Kaity was so good during her scan she didn't move one muscle for the whole hour! She's such a brave big girl now.

After the scan we made our way home. Nanny had dinner waiting for us when we arrived home and after dinner we went out for a ride on Possum, it was a bit of a long ride and we finally got back home in the pitch dark. Possy was happy to see another horse while we were out and whinnied in delight. Kaity loves Possy talking so was giggling contentedly. After big cuddles for Kaity and Possy it was time to hit the bath!!

It's really warm tonight so it may be a long bath.

No results until next week. So keep those prayers coming.


Don't forget to check out the Awareness Page I've been working on, if you would like your NB child added please email me.

Kaity is great! She had a few urinary problems after her CT scan but she insists it was the "Jungle Juice" they inserted into her IV (Contrast).

She has enjoyed staying with Nanny whilst Poppy and I went down to Rockingham to organise some business.

She has now slept in her own bed 2 nights, and is doing great with that.

Poppy and Kaity



Dont forget to visit the page I've been working on, all our NB kids in regions.

Click here

Monday, February 27, 2006 6:33 PM

We got stuck in peak hour traffic but luckily still made it to the hospital in time to get an IV and start drinking contrast mixed with lemonade.

After the CT scan we went back to the ward and were told Kaity's scan for Wednesday is cancelled due to the Nuclear Dye not being available until next week.

So we came home. Her MIBG scan is rescheduled for next Wednesday which means the injection will be given Tuesday.

Kaity was great all day, other than being hungry right before her CT scan and wanted to go to the shop to get chips, I had to keep saying no as I didn't want to leave the waiting room and miss the technicians call her for her scan. So did get a bit impatient but soon forgot once they came to get us to go in. They had a new technical injection contraption for injecting the contrast into the IV, they tried to get it up and running and she would have been the first child to use it but they had difficulties, much to my relief as I wasn't sure they knew what they were doing. So instead the contrast was injected by hand.

Kaity's pal for the day was her little rabbit which was sent by Aunty Anne. The bunny came with an American Girl doll. So Bunny came to hospital in his cage and was the perfect fit to stay in Kaity's hand while she went into the dohnut shaped CT machine. Of course everyone she came across today commented on how big she is and I overheard two nurses talking about her and how amazingly well she handles things now compared to once before when she could be heard from the next level. She just wanted to show everyone her bunny in the cage, so she was happy.

Kaity's bloods all came back really good, and she now weighs 17.75kg and is 115cm tall. All good!

-------------------------------------

Later Monday night 10:04 pm

Confession time -

When Kaity was in treatment, I tried very hard to keep her in her own bed. It proved very difficult, and I eventually moved her single bed into my own room, it was easier that way to manage pumps etc.

After treatment it proved just as difficult as I would get her used to her own bed and room and she would go on access visits with dad and have company in bed. So I felt challenged the whole time with Kaity's sleeping habits.

When we moved I thought I may be able to break the habit of Kaity sleeping with me. It worked for such a small amount of time as she was still spending time with dad and sleeping with someone. So I gave up and she usually picks which bed she would share for the night. She would alternate between Rikki, Brad and myself who all have double beds.

Well... tonight, we are all so tired, me especially since I drove four hours and was up at 5am. Anyway, I decided to try tonight, I've used bribery!! If Kaity sleeps alone tonight, she gets to choose a new pony at Helen's shop tomorrow.

So far.. it's working, she loved the idea of a new pony, it's been a while since she got one. But I had to trick her into thinking that Helen's shop doesn't open until after school. Oh dear, I hope it isn't bad to deceive children this way!!!!

Wish us luck, as we take another step back to normality!!

Sunday, February 26, 2006 9:44pm

Princess is tucked up in bed, we shall have to leave around 6:30 am tomorrow morning, arrive at hospital about 8:30 am and head straight to ward 3b to collect the oral contrast which has to be drunk and an IV drip will be placed in her arm.

She isn't thrilled on the idea of having to go to hospital tomorrow. She definately wasn't thrilled with having to take iodine drops, but she has become a lot easier to deal with over time, and it isn't such a struggle now.

So, please say extra prayers for us, we have three days at hospital then wait a week before we hear any results, I DO NOT LIKE THAT WAITING!

Brad was in the paper Saturday, some of you may have seen it, but here's a copy for those who didn't. He is pictured waiting to give Chris Judd a hand shake. Chris is his favourite AFL player. (Australian Football League)

Friday, February 24, 2006 4:50 pm

Conversation tonight with Kaitlyn after she overheard that Nanny and Poppy were coming to stay.

Kaitlyn "Yay Nanny and Poppy are coming"

Mum "Kaity you won't be here because we have to go to the hospital next week, and we'll stay in Rockingham"

Kaity "I'm not sick"

Mum "No you aren't anymore, it's just for photo's"

Kaity "I've had enough photo's, I don't need anymore"

Mum "We'll mention that to your doctors"

(We have always called scan's Photo's)

Kaity did three days at school this week and has today managed to turn the house upside down since she didn't have school. It's national underwear day today so she's stayed undressed! Do you all remember when I used to have to leave her PJ's under her clothes as she would refuse to take them off? That was at the end of treatment and just after treatment finished. TOO FUNNY! As long as she had her PJ"s on she felt safe I think. She used to go to Kindy with her PJ's safely tucked under her school uniform.

She will start her iodine drops in the next couple of days to protect her thyroid from the nasty nuclear dye. She will then proceed to have 3 days at hospital and the equivalent of 7 years radiation exposure.

I've been working on my NB awareness list and I've been sorting NB kids into regions in the hope of helping out newly diagnosed families find support close to home.

If you have a NB I'm looking for all Neuroblastoma Children to add to the list. You can view the page at

Neuroblastoma Awareness

I need parental permission before adding children so the parents will need to email me with their details.

Thanks
Colleen

Tuesday, February 21, 2006 1:21pm

A new NB Angel - Emily a gorgeous little girl who faced a terribly difficult surgery. Please pray for her family, for peace, comfort and love.



I wish to use this journal for an update on another Neuroblastoma child. Please be assured that Kaity is great.

Ashleigh is in desperate need of your prayers and support. I've followed Ashleigh's story since the beginning. I can't recall exactly but I think her Aunt Angie came into contact with us early on in Ashleigh's battle.

Ashleigh is so brave, wonderfully cute and amazingly smart. She's suffering in pain now, and it's unbearable for her parents to see her in such intense pain and anger.

Ashleighs so small and sweet, it's so unfair to read of her pain. Please visit her website, let her parents know how much Ashleigh is loved and adored. This is a family I've never met and most likely never will, but their pain hit's hard. It's like a part of our family are suffering and there's nothing we can do to help. I just wish there was something.

From Ashleigh's page
"Quote for this week - Feb. 20, 2006.. Please pray for strength, hope, no suffering, and everlasting love."

----------------------------------------

Sunday, February 19, 2006 12:00pm

Kaity was very excited to know she was heading off for Cousin Sharyce's party yesterday morning.

She spent a big lot of time eating! Then won pass the parcel! She was so happy to win she ran to Nanny yelling "I won I won!" (Thanks Aunty Ness)

Sharyce threw an awesome party, thankyou so much for having us.

We tried to get a photo of all eight grandchildren whilst they were all there together. Of course it was proven to be a difficult job, I don't think I'd enjoy being a photographer at all.

Here they are

From Left Travis, Sharyce, Rikki holding Carlin, Thomas, Brad holding Bryce, Kaitlyn.

Friday, February 17, 2006 11:47am

Kaity likes to use poor Pop Pop as a pillow.

Thursday, February 16, 2006 8:52 am

This morning, the kids slept in.

So we had a quick rush to get ready for school, dressed, lunch made, find something for news, face washed!

The amount of food Kaity packs in her lunch box I don't know how she finds time to eat it all. I decided swimming may not be a good plan today, it's all overcast and coolish. So we didn't pack swimmers. I wouldn't want to risk her coming down with a cold and not being able to shake it off before her hospital visit coming up.

Well... here's our rushed effort this morning. Behind her back she's holding her "Song's of Love" CD. She's working on the fact she's not allowed to take toys to school for News anymore. She didn't realise her Ponies were not toys!! Oh and you may notice the permanent marker on her legs, not sure how these things happen but my fridge must be responsible because it sports the same markings.



Tonights "Homework". Kaitlyn is working very hard at practising her name she is practising colouring between lines, she told me Geoffery taught her that.

Wednesday, February 15, 2006 9:48am

It's a warm day again, even though it's early we can feel it.

Kaity insisted on washing her hair in the shower this morning. Then she got her little horse and asked to watch her favourite movie "Spirit". You may notice the new song on the website is a song out of the movie.

Kaity's second favourite movie currently is "Annie" she asks a lot of questions about orphans. Even some of her toys have become Orphans. Rikki-Lea always Loved that movie as a child and would belt out the songs in the car all the time. I think she has watched Annie only a million times.

Kaity's favourite games consist of pretend horses currently. She catches and feeds and plays with her four legged pretend friends. Then she jumps on her brothers back and he becomes her wild bucking brumby which she tames to walk on nicely.

Here's Kaity cuddling her little horse, after her shower, you may be able to see her surgery scar, it's quite neat and she calls it her stripe. Thanks Dr Barker from Princess Margaret Hospital for such good work!!



Kaity had trouble seeing at swimming lessons yesterday due to the bright sunshine. Her teacher has suggested some swimming goggles that the other kids are wearing may help, as they are dark, she was wearing her sunglasses but they weren't helping. I might think about them tomorrow after I get paid, or I might just not worry about swimming lessons from here on in. If she can't see she can't enjoy it.

Kaity is extremely well, and enjoying her new class. She managed to let the teacher know that they needed to be learning the alphabet, and needed to start with A! I had parent night with her teacher last night and I'm even more convinced these wonderful ladies are going to do wonders with Kaity this year. Aren't we lucky to have been sent another two angel's. So next week she will do three days for the week and then the week after they start full time. Kaity has appointments at hospital for the first three days of the week so she won't be able to attend the first full week of the year.

Kaity also has a nice surprise coming up which I cannot go into detail right now, but our wonderful friends from Camp Quality have something in store which may require a flash new dress for The Princess. Camp Quality has been a wonderful lifeline to us throughout our journey.

So our little miracle girl is still been blessed by someone above us all. Thankyou for continued support and prayers.

Lyrics to Bryan Adams "Here I am" from the movie "Spirit"

Here I am - this is me
There's no where else on earth I'd rather be
Here I am - it's just me and you
And tonight we make our dreams come true

It's a new world - it's a new start
It's alive with the beating of young hearts
It's a new day - it's a new plan
I've been waiting for you
Here I am

Here we are - we've just begun
And after all this time - our time has come
Ya here we are - still goin' strong
Right here in the place where we belong

Chorus X1

Here I am - this is me
There's no where else on earth I'd rather be
Here I am - it's just me and you
And tonight we make our dreams come true

Chorus X2

Here I am - next to you
And suddenly the world is all brand new
Here I am - where I'm gonna stay
Now there's nothin standin in our way
Here I am - this is me

Tuesday, February 14, 2006 6:32 PM CST

As a parent I want the best lifestyle for my children. I chose the country lifestyle and it has worked out for the best for Kaity's health and also for my other children's happiness.

I've tried my best to give my children everything they have needed.

I now have to tell them that financially it's a struggle. We have to make sacrifices in order to eat. I'm sad to say I've had to borrow money from my 15 yo this week to buy extras (Bread and milk).

Today I've had a letter informing me of reductions in Child support. I will not go into detail but at least I know I've given Kaitlyn the best life so far possible. I am now limited. I tried to get a job only to be turned down with "I'm sorry you will not be reliable as you have a sick child and what will happen every time your child becomes ill"

My spirit is broken.

What sacrifices do we choose?

Will it be simply that once Kaity gets her appointments for OT ect that I will not be able to afford to get her there anyway. Will this child ever get the help she so deserves?

I feel, she will forever be different.

It makes me sad, angry, downright mad that someone who claims to love this child would deny her.

Sorry to ramble today, if I've confused you and you need more details, email me. I'm only happy to share less publicly.

Thursday, February 9, 2006 6:36pm

Once again there's only good news to report!! Kaity is great!

She's now done two swimming lessons, and it's so obvious she likes water.

My dad and I were shifting large cupboards the other day, yes my kids like to swap rooms around occasionally and I guess having 7 of them to choose from is a bit confusing to them. Anyway I mentioned to my dad that a rope would come in handy!! When Kaity yelled "Hold on a minute" and came running back with a rope she got out of her play kitchenette. Dad took one look at it and said.. "oh that's only a rope I've had forever, how did she get it?"

It seems our little "collecto"maniac has all sorts of surprises in her little kitchen, I asked her what else she had in there and she put her finger in the air and said "Hold on a minute" and came running back with my mints I accused the older kids of eating.

I guess all these things may come in handy one day for her!!

Tuesday, February 7, 2006 3:32pm

Second Day of Pre Primary and we are starting to unpack our bag ourself! The aim is that she needs to be walking into the school from the school gate by herself by second term.

School swimming also starts next week which could be a challenge too.

It was really difficult to talk Kaity into a picture this morning, she did however relent and wanted a picture of her doing her "Homework". She doesn't really get homework but likes to pretend she does.




This Afternoon I was asked to meet with Kaity's new teacher Mr's Mann. She's going to be a godsend I can tell already. Now some of you may think it sounds harsh but Kaity really needs a push this year. She sometimes refuses to join in activities at school, and Mrs Mann wanted to know if she was "allowed" to push Kaity in the right direction to start becoming active in class. Of course I was looking forward to more of a challenge for Kaity this year and agreed that Mr's Mann can take charge and gently push her the right way.

This morning the whole class had to move to the other mat because Kaity refused to stand up and refused to join in the jumping activities. Of course I know she cannot physically jump, but Mr's Mann would prefer her to at least stand up (possibly try) rather than sit and watch. I have agreed!!! Kaity actually won that particular battle but I'm not so sure she will get away with it for much longer.

She has come home happy this afternoon and despite sleeping at school for a while has said she enjoyed her day.

Monday, February 6, 2006 4:45pm

Kaity is absolutely wonderful. She's enjoyed having Nanny and Poppy come stay for a night.

Tomorrow she has Pre Primary again, and then again on Thursday.

Are all you other West Aussie's wondering where on Earth our summer is? It's pouring with rain again here today. Our front yard is flooded due to the storm water drains having excess leaves and rubbish blocking it. The kids and I went out to the road and took away two bucket fulls of rubbish to clear it and it's now flowing away.

So all's good here in Kaity land. I will try and get pics tomorrow of her in school uniform.. JUST SO CUTE!

Colleen

Friday, February 3, 2006 7:45am

Heaven gained a new angel today. Lacey Mae.


We decided to show you "The Cat" which found us and claimed us as his own.

Thursday, February 2, 2006 4:07pm

Kaity's first day of Pre Primary has gone off without a hitch, seriously what was I worried about?

Other than I have to find lunch containers that she can open by herself we shouldn't have any other troubles. She couldn't eat her plum and nectarine or her cheese and crackers because she couldn't open the containers I packed them in.

I didn't get around to taking pics today, it was a bit hectic this morning. But I can assure you she looked very cute in her red and white checked school dress, struggling along trying to carry her full bag.

Wednesday, February 1, 2006 9:36pm

As you can see Kaity and I have been playing with her website and making some changes. I still have some work to do so please be patient.

Kaity is doing so well, and tomorrow she starts at Pre Primary, once she settles in she will be going 5 full days a week. What will I do with myself?!?!?

This morning Kaity had an online "chat" with Aunty Anne from Maine, although I don't think Kaity's typing made much sense. She was so pleased with herself that she expected to be able to chat again tonight, unfortunately Aunty Anne wasn't online.

This afternoon she received another parcel of Love from our friends JoBeth, Plenn and their children Wheeler and Kilby. Once again JoBeth outdid herself and this parcel has kept Kaity quite busy, along with some great pics of Moultrie in Georgia and the children which Kaity just loved looking at, although she thought your cows were horses, but then she is a little biased towards horses.

Tuesday, January 31, 2006 2:41pm

Kaity and Pop Pop enjoying some relaxing time together.

Monday, January 30, 2006 7:09pm

We got in late last night. Kaity was extremely moody and we were all tired.

We decided to spend the day at Adventure World without Kaitlyn, she spent the weekend with her dad. This allowed the older kids to enjoy time with me without the pressures of allowing for what Kaity wanted to do. We went with Tracy and her boys Trent and Taylor. We had only just got there when Trent pulled me onto the Power Surge, wow.. what a ride!! It was a cold day so I was thankful we had not taken Kaity, we decided to do all the dry things first and were hoping for warmer weather in the afternoon. The lines were large so waiting time on rides took a while. We all went on the Rampage as a group, and this is the worst ride at the park. It's very scary but great fun. After some choice words from me.. and tears coming out of my eyes, we staggered off this ride and it was time to hit the water slides.

We decided on the Tunnel of Terror to start with. It's a long closed in tunnel, you sit on a double tube, and cannot see the whole time. Unfortunately once we hit the water at the bottom the wind just made us way too cold to bother with anymore slides and we jumped into the pool.

We swam for a while before we decided it was time to leave due to just been too cold.

So we made our way home slowly due to rain and roos on the road in the dark. It was a bit of a nerve wracking drive because my wind screen wipers need new blades. Kaity and Travis slept the whole way home which is why Kaity woke up grumpy once we got home.

She's been in a super mood all day today and even asked to go to town to pick out some covering paper for her school books. We've covered her books and she will have her first day of Pre Primary on Thursday. Just one day this week and then two next week. Eventually she'll be going 5 full days.

Friday, January 27, 2006 8:50pm

So thats Australia Day over!

Today was another pretty quiet day. The mozzies are really bad here at the moment, I think it has something to do with the rain we've had in the past few weeks which has started the river flowing again.

We sprayed ourselves up late this afternoon and sprayed Possy (Pony) too with mozzie repellant and went for an hour long walk/ride. Of course Kaity wanted to stop in town for a drink and Possy wanted to stop in town for the grass. So all happy.

I spent all day on the phone chasing up school books for Rikki. Her book list was going to cost $450 .. ugh. I've managed to save some by looking into second hand books. Just have to pick them all up tomorrow, which means a trip to Perth. We've decided to utilise the weekend and stay in Rockingham overnight and spend Sunday at Adventure World. Kaity was supposed to stay at her dads for the weekend but is now insisting on the day at Adventure World also. She just loves that place!!!

School begins again for the kids on Wednesday. Kaity is insisting she isn't going to Pre Primary and is staying in Kindy! Oh dear! We could need some time to adjust.

Thursday, January 26, 2006 11:55am

So today is Australia Day!!!

In the past we've celebrated. Today, seems like just another normal day. With no family or friends. It's just another day. Rikki is celebrating at the pools with friends, the local shire put on a big shin-dig there. The boys have spent the morning changing their furniture around. So nothing real special for us today, we will make sure we have lamb chops for dinner though.

HAPPY AUSTRALIA DAY TO YOU ALL!




Kaity spent the day not walking yesterday, thankfully we knew she had dropped a glass bowl and concluded she must have glass in her foot. I waited for her to fall asleep and pulled the glass out. She woke this morning very surprised and yelling she could walk today.

Monday, January 23, 2006 10:39am

Just a quick update.

Just one funny story before the serious stuff. Rikki was reading Kaity a story, Kaity was busy interupting and the story was getting somewhat offtrack. Rikki being the perfectionist was getting annoyed. Kaity was trying to say something but was stuttering and stammering. Rikki said "Spit it out Kaity!"... So... Kaity spat!!!! Oops... I guess we need to explain things a little better. Rikki giggled and explained she didn't actually mean to spit.

Kaity is doing so well so I have decided to dedicate this journal to some friends.

There's a little girl named Ashleigh, I've followed her story from the very beginning, Ashleigh had such a rough trot during her treatment, she recently relapsed and her disease has now progressed to the stage where little Ashleigh has been placed on Hospice. Ashleigh has a wish, she'd like to ride a horse, even though she has lost a lot of mobility. She's one tough little cookie, and I'd really love to read soon that she got to ride a horse, so anyone in the Grand Rapids or surrounding areas who could help out here?!?! You can visit Ashleigh



Next are two little girls trialing a new treatment, the same treatment. Both have had it rough during this treatment and could do with uplifting messages.
Christi
and
Madelyn



Then I'd like you to visit a little warrior named Lacey, she's so adorable, we helped her to get her caringbridge page just the way she wanted, she relapsed a while back and did another transplant but her disease has progressed and she is rapidly getting closer to heaven. Visit Lacey


Now for a little boy, his name is Connor, he lives in South Africa and his doctors have decided that they don't want to treat Connor anymore. Connor's family would really like to take him to MSKCC in New York, but this will cost a lot of money. Connor's story reminds me a lot of our gorgeous little friend Dylan from Australia. Visit Connor



Please visit with this beautiful little girl from Australia who is just embarking on her journey with NB

Sunday, January 22, 2006 5:46pm

Kaity's as busy as ever.

Nanny and Poppy came up Saturday to stay for a while, she's thrilled to have them here.

Saturday morning I got a message from a friend who happened to be flying in helicopters around the area (working on power lines). Rob was kind enough to fly over our house for the kids to wave. They thought this was way cool. Thanks Rob.

Today Kaity was up early telling us she was going to see "The Bikes" today. The Harley Owners Group were coming to town for lunch. Kaity really didn't want to miss seeing the bikes so we went into town for a look. She was lucky enough to be offered a ride home, she asked for a green bike but was talked into a blue one. Thanks Peter for bringing the princess home on your bike, and Beth who had to slum it in my car back to our place. I am sure Kaity will come up for a name for Peter and Beth's bike as she calls cousin Puff's bike "The Big Red Bike" and she calls Grizzly's bike "Flash". She's quite a character.

So the new pooch has settled in well. I am very concerned however that it has attached itself to Brad and will not let him out of her sight. She sits outside the bathroom whilst he is showering and cries when she cannot see him. She honestly is always a step right behind him everywhere.





Please visit with this beautiful little girl from Australia who is just embarking on her journey with NB

Friday, January 20, 2006 10:24am

On Wednesday we picked Kaity up from her Poppy and Grandma's house and were lucky enough to go to Adventure World with Camp Quality. What an awesome day!! Kaity went on the Bounties revenge which scared her a little but she still got off laughing. We thought she was so brave and then she thought she was invincible and wanted to go on everything.

She loved the water slides and spent a lot of time going down them. We also swam in the big pool for quite a while and she is getting used to kicking her legs with her floaties on. She was very proud to swim to me from an arms length.

Thursday we had made arrangements to look at a new pet. The dogs owner Devina was nice enough to bring little Poppy to Rockingham for us to meet her. So needless to say we are now trialing a gorgeous little girl Maltese x Poodle. She's 6 years old and very calm for Kaity.

On arrival home we quickly discovered that our stray friend is still with us. So Travis has adopted "The cat" which now lives under our house and protects our front porch. It's quite funny to see this cat following Travis everywhere.

Little Poppy doesn't much like "The Cat" and spent some time trying to get Possum (Pony) to play. Poppy also discovered our fish pond and we soon discovered Poppy doesn't swim very well. So after all this I felt like I was running a menagerie, we also have birds and a stray guinea foul which occupies our backyard.

Today, it's time for you all to raise a glass in honour of Kaity!! In my wildest dreams I never imagined to be here where we are today, able to celebrate two years from her last transplant. I am thrilled and amazed. We would love for the whole world (Kaity supporters) to celebrate with us and let us know how you've celebrated this achievement.

- Sami and family from NJ USA celebrated with milkshakes.

- Aunty Anne and Uncle Bill from Maine USA celebrated with shrimp cocktail.

- Patsy and Taylor from MI USA are thinking of Kaity.

- Jennifer, Carolyn and Evan from VA, USA, we're raising a glass to Kaity.

- Jennifer from Texas USA celebrated with a bottle of Gatorade.

- Michele from NY USA celebrated with ice cream.

- Leece from England raised her chocolate bar.

- Kaitlyn and family from Tasmania Australia celebrated with chuppa chups!

- Teena from Kalgoorlie Western Australia celebrated by playing with her Bratz and pretending Kaity was with her.


Let me know your way of celebrating so I can add you to the list















If anyone is interested in cross stitching a square for a quilt for Kaitlyn please visit




They are also looking for more Australian children to sew for.


There are some really cool Neuroblastoma wristbands available nowadays. There's one from Georgies fund which is really nice with the words Fighting Neuroblastoma.

And another from CNCF with the words NB Hope, they have just released their new colours which look much nicer than the previous yellow.


Please visit with this beautiful little girl from Australia who is just embarking on her journey with NB

Wednesday, January 18, 2006 4:52am

I'm up early, the kids found a stray cat under our house before bedtime last night and have been up worried about it most of the night. They fed it, watered it and cuddled it. It's a very big cat and looks underfed. It now is hanging around.

In two days time we will celebrate again. Two years ago on the 20th January Kaity received back her life saving stem cells for the second time. Without these cells she would never have recovered. We might even have cake and balloons on Friday as Nanny and Poppy will be coming to stay.

The Harley Owners Group will also be paying a visit to Beverley so we are hoping to catch up with cousin Puff. When I told Kaity the bikes were coming she kept jumping up everytime she heard the local train yelling "The bikes are here"

Today we are off to Adventure World. I am so looking forward to seeing Kaity and spending time with her at one of her favourite places.










If anyone is interested in cross stitching a square for a quilt for Kaitlyn please visit




They are also looking for more Australian children to sew for.


There are some really cool Neuroblastoma wristbands available nowadays. There's one from Georgies fund which is really nice with the words Fighting Neuroblastoma.

And another from CNCF with the words NB Hope, they have just released their new colours which look much nicer than the previous yellow.

Monday, January 15, 2006 10:02am

Saturday night we had a family reuinion. Kaity was staying with her dad but he dropped her off at Nanny's so we could take her along.

She totally enjoyed the night playing with her cousins.

Kaity is well at the moment and is back staying with her dad. I cannot wait until Wednesday when we are picking her up to go to Adventure World with Camp Quality.






If anyone is interested in cross stitching a square for a quilt for Kaitlyn please visit




They are also looking for more Australian children to sew for.


There are some really cool Neuroblastoma wristbands available nowadays. There's one from Georgies fund which is really nice with the words Fighting Neuroblastoma.

And another from CNCF with the words NB Hope, they have just released their new colours which look much nicer than the previous yellow.

Friday, January 13, 2006 4:32pm

Kaity enjoyed some time with her cousins's Thomas and Bryce.

Here's some pics of Kaity with little Bryce.








If anyone is interested in cross stitching a square for a quilt for Kaitlyn please visit

Quilts 4 Kids.

They are also looking for more Australian children to sew for.

Wednesday, January 11, 2006 3:53pm

Kaity is still enjoying a holiday with Nanny and Poppy.

If anyone is aware of a Sick Australian child that would like a quilt made for them

Or if you would like to cross stitch a square for Kaity's quilt or another child.

Please visit


Quilts for Kids

Sunday, January 8, 2006 10:51am

Kaity has an important question she needs answers for....

"Why is Blinky Bill Blue but Nutzy is grey?"

and then

"Can Koala's be different colours?"


It was very cute and she was oh so serious. Isn't it wonderful when our 6yo's (who spent a year and half doing aggressive cancer treatment) biggest most important question is about Blinky Bill.

I love it when she comes out all serious and needs an answer, sometimes it's so hard to keep a straight face. We spent a while discussing the colours of Koala's and the differences of animals without going over her head.

Kaity is off to Nanny and Poppy's today, she's promised Possy she will miss her and took her for a ride this morning, stopping at the local park for Possy to munch. Kaity insisted Possy deserved the break on the green grass.

It's so hot here, the best place to be is in an air conditioned room or the local pool. The kids are keeping cool this morning with water bombs... 8 kids running around with water bombs. Kaity screams with delight. It's great.

Unfortunately the house is totalled, and now it's not just Kaity's mess spread through, it's the mess of 8 kids!! I have some serious housework to do... but it's all good fun.

Friday, January 6, 2006 8:55am

Well what a waste of time travelling to Rockingham to try and get Brad's Playstation 2 fixed.

I will start at the beginning.

Before Christmas the kids were asked what they would like for their major present. Brad decided he would really like a chip placed into his PS2 to play old burnt games and dvd's. I was very reluctant as I would have to go down to Rockingham or somewhere like that etc and it wasn't going to be easy with very little time before Christmas. Anyway I ended up leaving the PS2 at "The Mod Shop" to be chipped and asked my dad to pick it up once it was done and Brad got it back Christmas morning. He played one game on it before it never worked again. This was a working machine which never skipped a beat before we had the chip placed. The chip cost $130.

So yesterday I took the machine back down to them to have the chip taken out, I was convinced since the machine worked before hand it was something they had done. Well....

The arrogant young man which handled the machine informed me that this was a faulty machine and nothing could be done for it as the laser in the DVD player is tired and worn. I replied so can you take the chip out as it is no use to us? No sorry that would require more working hours and would not be viable for us to do... so.. no money back either!!!
I did happen to throw in a comment of "Oh and what would that cost $15 an hour" .. he threw back "Oh we get paid much more than that"...

Then he walked away saying "Well no worries THANKYOU!" (Quite obviously as this man earns so much he has no compassion or understanding of the trying times of Christmas and being a single mum of 4 kids with a load of bills, and then having a 13yo with a useless present.)

I was furious .. I am left with a machine which doesn't work and have just paid for a chip which is going to be useless, I was tempted to ask how I was to use this chip... should I place it up his butt!!. Luckily I am much more well mannered than that.

I then spent the rest of the day running around trying to get a second opinion or at least get the machine fixed. I do not have the means to purchase another console at this stage and neither do I have the means to get Brad another christmas present which would be of some use to him. So it's been a very upsetting time.

Poor Brad is miserable!!

I did think about appealing to their human side.. but that's just so not me.

If anyone out there feels like contacting them and telling them how arrogant and horrible and inhuman they are...

FEEL FREE!!!



So.. Kaity update.

Unfortunately she was nearly bitten by her beloved little Ben dog. Ben belongs to my mum and dad and has lived with us for the past year. When my parents moved to Rockingham Ben went with them, we've all missed him and he has been pining for the country freedom he had before.

Kaity has always been very gentle and loving with Ben, and he has always returned that favour despite his dislike for small children. Kaity and Ben were sitting cuddling on the floor and we aren't really sure what happened but Kaity ended up with scratches on her face.

We think Ben is getting old and grumpy and unfortunately Kaity will now have to stay away from her beloved little boy. (Mum would like Ben put down but so far we have not agreed)

She had a much better sleep last night, Thank goodness, was nearly at breaking point!!! I have always been very needy of sleep.

Rikki had her first pay packet yesterday and is very pleased with her self and is looking forward to spending it.

We did bring a car load of kids home yesterday so we have Trent, Taylor and Tash staying. Lucky we have a big house and lots of beds.

Well.. I'm hoping today is a much better day than yesterday, it was an expensive waste of time!!!

Thursday, January 5, 2006 3:58am

You know, I love this time of morning, it's just the best time for.... SLEEPING!

Unfortunately sleep has been rare the last three nights. Kaity has been great during the day, just a slight snotty nose but during the night the snot must start running into the back of her throat and she just can't sleep, she has had slight fever also. Tonight the cough has started, a dry annoying hack, slight but still there.

She has just "asked" for panadol!! ASKED?!??! This kid never asks for stuff like that!! She must know she feels crappy. She's been very brave and managed to be helpful whilst taking the panadol. I thought since she asked for it we would try and do it by Kaity almost dosing herself rather than forcing it down. She did well but with only a small amount left she decided she'd had enough and spat the rest. This is something she learnt right after diagnosis!! To Spit anything she didn't like.

My plans were to drive to Rockingham tomorrow for some shopping and to return Brad's playstation 2 to the shop which installed a mod chip at Christmas time but which is not working. He hasn't been able to use it since then which I am very annoyed at since it was working fine before hand.

I'm not so sure about going down there now with no sleep the trip could be tiring. I was also picking up Tash and the twins down there. Will see how I feel once this panadol kicks in we should get some sleep.



Wednesday, January 4, 2006 9:41pm

Sometimes as a family we get sucked into role playing...

Tonight call me "mummy cat". I'm loving my cuddles as my "Kitty Cat" comes up and rubs her cheek against mine purring. Even Rikki joined the cat family and is "Sister Cat"

When questioned as to the boys identity they became "Brother dogs".

Yeah I know.. weird huh. But it's school holidays and the silly season is over.

Rikki's been very busy with her new job, she's now done two days and is not sure whether she loves it or hates it. She's very tired but she's in it for the money!!

Yesterday was hilarious! We heard screaming coming from Kaity, she came racing out of her room yelling "Theres something in my room!" we all came to her rescue and all of us went in to investigate and she pointed to the ground and screamed... THERE!!!

Poor little Jiminy Cricket was wondering what the noise was all about.

Tuesday, January 3, 2006 11:20pm

I have the most amazing daughter in the whole world.

Kaity came home and was feeling off. She vomited before arriving home.

She was happy to see that she had more presents to open, Neil and Liz (Rikki, Brad and Travis's dad and step mother) had left presents for Kaity. Also Neil's parents had sent along a gift as they do each year. So Christmas wasn't quite over yet, and santa had even left a note saying her one present which he could not find in the shops that she most wanted was still on it's way. Santa managed to find one on EBAY and is sending it via mail. He is very sorry but we are just amazed he found "Star Catcher" and are awaiting the arrival of this much wanted gift.

Kaity had a restless night last night and woke with a snotty nose and fever. But has had a national pyjama day and is feeling somewhat better.

She is right into cuddles and kisses and cannot walk past me without telling me she loves me. When I said I'd missed her a lot she said "I'll love you forever mummy" She's just so smoochy to us all we love it.

She has also managed to turn the house upside down. It's been pretty tidy while she was away. But we wouldn't have it any other way, her mess is unique, and in every room.

It's rained here last night and now again tonight. It's refreshing and I love the smell of rain on the hot roads. It's giving us a break from having to water our lawns.

Kaity has been very busy with her My Little Ponies, she had them out under our patio today and was making stories, she is becoming very good at creating her own little fantasies. As I listened today I noted her stories were mostly happy and healthy stories, nothing at all to do with sickness and misery.

I'm finally feeling confident that our little girl is well on the road to recovery. I've been so blessed during our journey. We've had amazing support from our followers, and I'm so happy to be able to share my girl with you all. As I was reminded she is a child of the world. She doesn't just belong to me but she is yours too.

A child with an amazing will to have fun.

Monday, January 2, 2006 11:31am

Kaity is HOME!!!!!

Saturday, December 31, 2005 1:01am

PS - I have forward dated this... I won't be home later!!!

Thursday, December 29, 2005 4:48pm

Little Dakota from Queensland has now gained her wings and is an angel.







2003



In 2003 I didn't want to sit with Santa so he let me use his chair for a Photo. I was 4 years old.

2004



In 2004 I was five years old and really looking forward to visiting Santa.

2005



I'm now six years old in 2005 and Santa wasn't allowed to give me lollies or hold me. His beard tickled so I tried not to get too close.

---

Monday, December 26, 2005 8:06pm

So that's Christmas over.

I went without a phone for a couple of days so I've gotten a little behind with updates. A rabbit ate our cable apparently.

We awoke early.. 5 ish. I'd only had a few hours sleep.. remind me not to go out Christmas eve again. Present opening was fun, and the kids were all happy with what they received. So lot's of kisses and hugs and thankyous.

Kaity couldn't get past her Dora Laptop that she got from Santa. We had to pack up the car and head to Rockingham to have lunch with my parents. Mum's cooking is the best, even on Christmas day.

The kids filled up and then were picked up to go spend the afternoon and night with their dad. Kaity's grandparents came to pick her up and then dropped in at Aunty Bev's fairy garden. Aunty Bev was kind enough to send me the cutest photos, and I can tell Kaity is in love with Bev's little grandson Luka.. have a look at these.









Thankyou Luka for looking after Kaity! Luka has spent time at Princess Margaret Hospital also so Kaity and him were bound to hit it off... two special little people.

Christmas has always been Kaity's favourite time of year. It's been a huge blessing to give her another Christmas. We are so lucky.

As I sat around Christmas day alone in the afternoon I pondered our luck and came back to thinking of our small friends. Jess, Ebony, Kaleisha and Wainey were 4 small girls in my thoughts and heart. How I wish they could have received their miracle alongside Kaity.

Some other families close in my thoughts are some of which I have never even met, little Dakota who is finishing her battle with Neuroblastoma, she lives in Queensland and managed one last Christmas.

Dani-Ella who has battled a benign brain tumour and also managed smiles for her family this Christmas in Queensland. How I wish they could receive a miracle and their families would have many more Christmas's with them.

---

Sunday, December 18, 2005 6:01pm

Check for newly added pics in this journal (below) - Thanks Jacquie!!!




Wow, what a weekend we've had!!!!

We started out late Friday and headed on our way to Yanchep Club Capricorn. We arrived and found our Camp Quality companions.

Camp Quality is always amazing and straight away the gifts began. They gave us reimbursement for our fuel.

We found our chalet and made ourselves comfortable and made our beds, there were three rooms but being such a close knit family we only used two... UGH! I thought I might get a double bed to myself for the weekend but it didn't happen.

We then went back to the studio to meet up with our other campers and companions again. We played some games and had a great pizza supper. Then went back to our chalet for a relatively early night.

Saturday morning we were up bright and early and were lucky enough to not have to go far for brekky, our companions were cooking right next door on the grass, brekky was scrumptious!! Pancakes, bacon, sausages, eggs, mushrooms, and baked beans. YUMMO!

We then walked to the beach and I must say.. I'm not a beach lover, but thoroughly enjoyed the morning we spent on the beach AND ended up swimming in the waves.

Kaity managed to wrap Companion Greg around her finger and he played with her for ages collecting water to fill holes. She was getting brave in the waves also, but once they got too big she would run away. After Greg gave up she then proceeded to teach Companion Wendy how to collect water and fill holes, she tried to convince Wendy that she needed the "Blue" water from further out. Our camp quality companions were awesome and I managed to relax and not worry all morning and went out in the waves with Brad. We were dumped a couple of times in the waves but it was great fun.

Greg and Kaity carting water!



After a shower and lunch we were kept busy with lots of Xmas Craft activities. Brad loved all the craft and Kaity flitted from one project to the other. Greg taught everyone to make kites and Travis finished one and went to fly it. Then we had a gentleman come and do Phys Ed games with us all, he had a parachute which Kaity got a milk shake ride on.

We then had free time, us girls headed back to our chalet to relax whilst the boys went with companion Lyndon to swim in the pool.

It was then that we had a phone call from my dad rang to tell us that the kids kitten had died. We'd had the kitten for only a week, but this news devastated the kids. We had to go into detail with Kaity for really the first time on death (it's a subject that breaks my heart having to discuss with my baby who may one day have to be told all the details of death). We had many tears, but she eventually settled and we agreed that our friends Angel Ebony and Angel Jess would adore "Tom" and look after him in heaven. Then the boys came back and the tears started again.

We dressed for cocktails and dinner. The wine was good as was the meal in the resort restaurant. After dinner we went back to the studio for Christmas carols and "Mother" Christmas. We were showered with gifts and more wine (Thanks Lyndon for always topping up my glass)

Sleep was better this night but we still rose early and headed in convoy to the Yanchep National Park. This place is gorgeous, with a huge lake!

The first activity was to visit the local caves, I decided I'd just like to sit under the trees and relax, Brad did also and Kaity stayed. Rikki and Travis enjoyed the caves. Companion Wendy decided we should check out the row boats and Brad, Kaity and I ended up rowing on the lake, it was nice, but I was a bit afraid of going out too far and not being able to get back to easily. So Kaity took over the rowing and we got nowhere fast.

When we got back to the picnic area we were greeted by the "Harley Owners Group". Their bikes were everywhere on the lawn and Kaity and I inspected them.

When the rest of the group returned it was announced that we would be taken on rides on the bikes, Kaity was the first to the bikes and started climbing onto one. Our shy girl isn't so shy around bikes. "Grizzly" the owner of that particular bike told her he would meet her up in the driveway for her ride, and she raced up to wait. His helmet was huge for her and she had a hard time keeping her head up. But during the ride she was telling him to go faster!!! They both had big smiles on return. All the kids were loving the rides, I also jumped on and had a couple of rides, then was waiting for the kids to get back when a good looking fellow named "Chief" summonsed me for a ride, I told him only if he went fast!! Kaity also went on harley owner "Puff's" bike which I am sure had every luxury available.

Kaity on her first choice of ride with "Grizzly"



Kaity and Cousin "Puff" on the "Big Red Bike"



The Harley Owners then cooked us lunch and showered us with gifts and lollies. We played cricket, flew kites,and mingled, I overheard "Puff" say his name was Kelvin, which I thought was interesting as my brother is also named Kelvin. After a bit more information came out about our friend "Puff" i realised his story was familiar and I started getting curious about our new friend, I asked if he was related to a Mrs Lyn Flynn.. to which he announced she was his cousin! Wow, I'd just found a cousin of ours. He's been searching for my mother for two years and here we were being lunched by him and his group. We caught up and exchanged numbers and learnt that Puff and his group will visit Beverley later in January, we hope to see them again.

Kaity spent some time wandering around on her own, later I learnt she'd been busy chatting up one particular Harley Owner named Chief (This guys smooth AND good looking). She was trying to get him to open her chocolates. But boy does she have taste and I'm not just talking about the choccies!!!!

Kaity chatting up "Chief"



Unforunately our weekend had come to an end. We all agreed this was the best camp ever and were sad to be saying goodbye.

A big thankyou to Camp Quality and to the HOG - Perth Chapter for making our weekend just simply awesome.









A note from Kaitlyn

The Children's Neuroblastoma Cancer Foundation are asking everyone in the world to give up lunch for one day and donate the money to Neuroblastoma research.

There is currenly no cure for Neuroblastoma.

Not only will you be making a difference for children like me, but you can help raise awareness of Neuroblastoma. When you make your donation of only $5 my virtual tree will get some decorations and I will be entered into a prize draw for a trip to Disneyland.

Just go to "Donate" and select my name on the drop down list.

Enter my Tree Code of 13704 when prompted

Donate $5 and tell everyone you know to do the same! Let's raise some money for Neuroblastoma Research and help make a difference together.

Donate Here

Christmas Elf Name My Christmas Elf Name is Get your Christmas Elf Name at JokesUnlimited.com

Now Playing - Six White Boomers (click here for the words)




Merry Christmas to all our supporters!

Our Christmas here In Australia will be hot. Santa will certainly be surfing down at the beach we are sure.

Have a safe Holiday!

Love Colleen, Rikki-Lea, Brad, Travis and Kaitlyn.

xoxoxo

---

Thursday, December 15, 2005 1:34pm

Don't forget if you are visitor number 250,000 you are the lucky winner of some "Kaity" artwork, all you have to do is copy and paste the counter onto our guestbook, and leave your email addy.




Kaitlyn would love to see more decorations on her Giving tree.

It does seem like her tree has come to a halt with new decoration and donations. If you decide you'd like to help find a cure for Neuroblastoma, please use this giving code 13704 to help Kaitlyn receive double ornaments.

Remember, there is NO CURE for Neuroblastoma, and whilst it's too late for many of our NB friends, there are still others who will be diagnosed. Along with children like Kaity who could relapse at any given time.

To donate Lunch for life

---

Tuesday, December 13, 2005 7:08pm

Yesterday we ventured out to where a friend of ours works on a local farm and helped out with some sheep work.

Firstly we drove to the other side of the farm to find last springs lambs. They were all hiding under thick scrub and it was looking like we'd have to give up. Until we decided we should let the kids run through from one end to the other, which would chase all the lambs out.

Kaity was brave and waited with me in the ute. The only movement for quite a while was a fox which came running out.

As we sat waiting for lambs and kids to appear we became engrossed in conversation, until a bit later when we could make specks in the distance which looked like kids and lambs. Oops, the kids had already chased them out.

To our surprise the boys were no where to be seen, and it was just Rikki and Tash who had managed to round up the sheep.

Eventually the boys emerged from the bushes. Travis had treasures in hand (sheep skull) much to my disgust. He does love fossicking and collecting.

The kids enjoyed moving the sheep back to the sheep yards and it was commented on how Rikki seemed to know what to do. She has learnt at horse riding, and has done stock work whilst riding.

Kaity wanted to keep a sheep, we talked her out of it and made our way home. I went to bed before the kids last night.... I was bushed.



Don't forget if you are visitor number 250,000 you are the lucky winner of some "Kaity" artwork, all you have to do is copy and paste the counter onto our guestbook, and leave your email addy.


Kaitlyn would love to see more decorations on her Giving tree.

It does seem like her tree has come to a halt with new decoration and donations. If you decide you'd like to help find a cure for Neuroblastoma, please use this giving code 13704 to help Kaitlyn receive double ornaments.

Remember, there is NO CURE for Neuroblastoma, and whilst it's too late for many of our NB friends, there are still others who will be diagnosed. Along with children like Kaity who could relapse at any given time.

---

Monday, December 12, 2005 8:15am

Wednesday Kaity felt rotten, I found a huge lump on her neck and decided we should have at least had blood tests the day before which were not done, we headed back to hospital. Blood was taken and she was checked over, her blood counts prooved she was fighting a virus, and the doctor did agree she had a very swollen lymph node.

Thursday we had another very quiet day with Kaity still feeling crappy.

Friday, Kaity was lucky enough to receive another parcel, this one was from our lucky art winner Michele. Thankyou Michele, you cheered Kaity up. Friday Afternoon she was feeling better so she went down to visit with her dad for the weekend, and I had a few birthday drinks at the local.

Sunday I helped out on a local farm with sheep work, then picked the kids up from the half way point where I also gained two extras... Tash (Kaity's mini mum) and Trent (Brad's mate) are here to spend the week.

On Friday we will be heading off to a Camp Quality camp in Yanchep at Club Capricorn... sounds great!


Don't forget if you are visitor number 250,000 you are the lucky winner of some "Kaity" artwork, all you have to do is copy and paste the counter onto our guestbook, and leave your email addy.

---

Tuesday, December 6, 2005 7:37pm

I know you are all anxiously awaiting news on Kaity's scans, but I must send you to another link first, please if you are in this area please help this family, a bit of Christmas cheer. Darren and Dad


Now for Kaity's news.

CT is stable, MIBG is stable. Kidney function was excellent.

Dopamine/creatinin level is a urine marker which detects NB, unfortunately this is raised. I asked for a retest but was told no they aren't too worried, of course they aren't. She isn't their child.

I asked for a referral to someone to check for Allergies, and was told that this would not be causing her troubles.

The doctor was concerned that no one had yet looked into Kaity's overbite and fixing it. Kaity does indeed have a very big overbite, I did feel like explaining that nothing had been done most likely because they did not expect Kaity to still be alive so why fix a jaw problem. He will write a referral.

Occupational Therapy - Kaity's accessment finally came through, not real exciting news on her behalf especially when some of her motor skills were accessed at a 2.9 year olds level (eye to hand skills). More on that later... all too depressing. Again waiting for another referral now.

We didn't get any news on her echo, which we did today, but I'm not expecting troubles there.

---

Tuesday, December 6, 2005 9:18 am

Kaity has woken feeling HEAPS better. She ate most of her brekky and made me promise she won't have taps (IV) today.

We will be heading off soon, on our way we will go to Northam to speak to the deputy principal there about Rikki's future.

Kaity will have a finger prick on arrival and then an echo on her heart at 2pm, followed by clinic.

Keep praying please.

---

Monday, December 5, 2005 12:23pm

Kaity started coming down with a runny nose on Wednesday night. Slowly she has started feeling worse.

Friday she was excited to see the postlady pull up at our front door, when the postlady comes up our drive we can usually tell there's a parcel for Miss Kaity, she's the only one that get's special deliveries. Kaity received a HUGE parcel from Anne, who Kaity now refers to as Aunty Anne from America.

I opened the box for Kaity and she just sat looking into the box, everything was wrapped in Kaity's favourite colours with pretty little ribbon bows. I asked Kaity if she really should open it yet as it wasn't Christmas, she said "Oh yes mummy I promise I'm allowed to"

So slowly she opened each present, that box was full of love I could tell. She was very excited to see a My Little Pony which she didn't already have, then at the very bottom was an America Girl doll called Logan. Logan has her very own pet named Rizza Rabbit in a cage. I will try and get Kaity and Logan in a picture together.

Thankyou very much to Anne for the wonderful early christmas parcel for Kaity.

Saturday she had her school xmas concert, which I guessed right and she did not join in with, she did however sit up front as long as she could sit with her friend Stella.

Santa made a visit during the concert and she eventually got up to collect a gift from him (very reluctantly).

We didn't stay out late as she was feeling ickish. She went to bed Saturday night with a black eyelid and complaining of pain in her legs and arms.

Strangely enough, she awoke feeling better, but still with an annoying runny nose and headache which appears to be her ears.

She again went to bed early last night and has awoken slightly better again. But she's not eating again, which is usually the case when she gets sick.

Rikki spent the weekend away at her orientation for Boarding College. When I explained this whole procedure to Kaity she got very upset and does not want her best friend living somewhere else. We never really thought about how Kaity would react. Rikki is now thinking twice about her future for next year. The only other option to complete year 11 is to travel by bus two hours each way. A bit of a chore when studying to this level.

I am happy to announce that Kaity's artwork has arrived in our lucky winners mailbox. Here's a message from our winning friend Michele

"This is to announce that Kaity is a GREAT artist!
I was lucky enough to receive in the mail today
a beautiful lady bug made by Kaity for being the
240,000 visiter to her site! That lady bug flew a
long way-all the way from Australia to central New York.
I love it and put it on my refrigerater for everyone
to see. Thank you Kaity!! " - Michele

So don't forget another lucky winner will win some "Kaity" original artwork, all you have to do is be our 250,000th visitor and copy and paste the counter into our guestbook.

I took Kaity to the doctor this morning and we have new GP's in town, but he seemed to think she has a virus and will be fine in a couple of days. This afternoon she has complained of a fair bit of pain, including the back of her head. Her ears had a small amount of fluid but with the runny nose this is to be expected and is normal.

One more sleep before we again get results of where our life will be for the next few months.

---

Saturday, December 3, 2005 12:41pm

I've had a few messages from Aussie's now who have had trouble donating to Lunch for Life.

If you are having troubles with your postcode being accepted, just add a zero in front of your actual postcode.

Hope this helps to generate more donations in Kaity's honour.

A HUGE thankyou to everyone who has donated so far

Michele Chase
Kelvin Flynn
Phil Reid
Kerri & Shannon D'ARCY
Esme Heimbach
Samantha Robbins
Anne Fitzgerald
Angel Helper one !!!

Kaity loves the look of her tree and is excited to see more decorations appearing.






Kaity has her Christmas end of year concert this afternoon.

If it's anything like last year I'm not expecting her to join in, this is something that is still developing for Kaity, but she has shown some improvement this year and will now play group games with her class.

---

Friday, December 2, 2005 3:26pm

Last night Rikki-Lea had her graduation from Year 10. She can no longer study at our local school as they do not have year 11 and 12.

She looked stunning, and made a great speech as head girl although a little bit nervous.

This weekend she is at orientation for her new boarding college. She has already rung me once to tell me she is bored as the other students had not arrived yet.

All ready for Graduation.

---

Wednesday, November 30, 2005 7:00pm

This morning we left home at 7:30 am, went straight to hospital and after stopping at the kiosk for smarties and choc milk made our way up to Nuclear Medicine.

Kaity walked straight in with her picture of her and Possy which Dawn printed out for her to show the doctor and nurse. She chatted to the doctor for a while, he was very kind to her and even remembered Possy's name.

Kaity did great, she didn't move much at all for the whole MIBG scan, which lasts an hour, maybe once when she forgot and went to scratch. Close to the end she called out to me, and said "My ear is stuck"

We had to kill some time so we went out in the car and picked up a few things we are short on, just boring old stuff really. We found a second hand shop and Kaity discovered a care bear video she didn't already have for $2. As she was paying she gave me a filthy look and said "Mum you embarrass me sometimes", not real sure where it came from and what I did, must have been something I said to the lady serving Kaity. I thought I had a few more years before I would embarrass Miss Kaity!!!

So we made our way back to hospital but still had time to kill so went up to visit Captain Starlight, it always amazes me that he remembers Kaity and knows her name straight off. We coloured and chatted to Captain Pat for a while until it was close to time for Kaity's dental.

The dentist was more than impressed when Kaity opened her mouth wide. She even allowed the dentist to brush her teeth WITH toothpaste, this has been a BIG issue, and was due to the stressful routine of mouthcare during treatment. So Kaity doesn't have to return to the dentist for 6 months now.

That brings to an end our visits to hospital this week. Thank goodness, I'm sick of driving!!!

We got home tonight at 5:30pm and our beloved Possy didn't come to Kaity's calls, after a quick search we discovered her stuck between our shade house and fence, it was looking pretty impossible to get her out as she couldn't back up without hitting another fence and had no room to turn around, I was about to cut the shade cloth but decided to try and move some wood out of the way, after some coaching with a carrot we finally got her out... ugh... another long day. Possibly a long day for Possy also as I think she'd been in there a while, thank goodness Kaity came home when she did.

Tonight Kaity is a CAT! She's lifting things in her mouth and meowing in conversation, but she doesn't believe me that cat's love milk!! This has all come about because yesterday we saw some lovely cat's at horse riding, and Mrs B mentioned one cat might be pregnant, if so she has promised to let us know. I've never liked cat's much but each child has a kitten on their xmas wish list this year!!!

Oh well.....





Don't forget to donate to Kaity's giving tree.

Tomorrow December the 1st brings Lunch for Life month.

This year, Lunch for Life is getting into the holiday spirit! Thanks to the efforts of CNCF and an anonymous donor, your giving will translate not only into desperately needed research dollars, but also into gifts that will brighten the lives of these children. And one child will receive an all-expenses paid dream vacation to Walt Disney World, with the help of some incredibly generous donors .

Here’s how it works: Each child has his or her own virtual giving tree, and your donations will decorate those trees with ornaments and (ultimately) presents. Every donation has three effects: 1) the tree of your choice receives 1 ornament for every $5 you donate; 2) every donation generates a Giving Code which can get you bonus ornaments when your friends type it in; and 3) each ornament placed on a child’s tree creates one entry for that child into our Disney World giveaway. For example, if I donate $15 to a specific child’s tree, then that places 3 ornaments on his or her tree, creates 3 contest entries for that child, and generates a Giving Code for me to pass along. When a tree is full (500 ornaments), those ornaments transform into a present underneath that tree, and the decoration process begins all over again. For each present, the family can elect to receive one of several donated prizes for the child (including board games, stuffed animals, a gift card to Toys R Us, or even the ability to turn multiple presents into a portable DVD player or other bigger gift).

The Giving Code allows you to earn bonus ornaments for a tree by passing on the code to your friends. They will be able to donate their money in honor of any child they wish, but by entering your Giving Code, your chosen tree will receive a bonus ornament for each ornament they donate. For example, if I donated $15, I receive a Giving Code. I email that to several friends with the encouragement to donate to a child’s giving tree, and tell them to enter my code so I’ll get bonus donation credit. One of my friends gives $10 toward a different child’s tree, which buys 2 ornaments for that tree, but because he entered my code while making his donation, it places 2 more ornaments for free on the tree I chose. He’ll then get his own code that benefits his chosen tree, which he can pass onto his friends, and so on. This way, for every friend or family member you get to donate, you’re giving that much more in prizes and contest entries to your chosen child. Talk about happy holidays!

Finally, on December 25th, we will hold a virtual drawing, where each child has a chance to win the trip to Disney World. For each $5 donated in that child’s name by midnight Pacific time on December 24th, he or she will receive 1 entry in this drawing. For example, if $5000 total was donated in a child’s name, then that child would have 1000 entries in the contest. Each entry is assigned a unique number, and the computer will randomly select one of those numbers at Noon Eastern time on December 25th. We will post the winning number to the website immediately following the drawing, and the child associated with the winning entry will receive a free, all expenses paid trip to Disney World, including airfare, lodging, tickets to the theme park and shows, special front row and backstage passes, and many, many other perks!

Remember, now your lunch money can help save these children’s lives by funding scientific research on Neuroblastoma, while also bringing smiles to their faces with their own virtual trees and real presents. Please help make these holidays special for these wonderful children in need.


Lunch for Life

---

Tuesday, November 29, 2005 6:57pm

This morning started at 6:30am.

Kaity and I left home at 7:45 am for our trip to Perth. Kaity was a bit grumpy on arrival and I had to carry her into the hospital, no small feat nowadays.

She brightened up as we got closer and decided to jump in some puddles before entering the building, yay.

So we went straight to Nuclear Medicine for Kaity's injection, Kaity had a pleasant chat to the doctor injecting and the nurse helping. She promised to bring photo's of her on Possy tomorrow. She also told them all about the My Little Pony she would like for Christmas.. apparently it's called Starcatcher and she has wings and real diamonds.

So while Kaity chatted the injection was slowly going in, she didn't flinch or complain at all.

The hardest part was taking out her IV! We really hate the stickies they use to hold things down!!!!

So Kaity decided on chips with gravy before we headed off. We made our way to visit with Dawn and Tash, who we pulled out of school for the afternoon. We went to chinese for lunch and Kaity had maccas. We visited with Nanny and Poppy who have moved into our old house. We will be houseswapping which is really exciting. We've spent the last year living with Nanny and Poppy since moving to the country, but we've all decided it's time to now do it differently. When we made the move we didn't know where we were headed with Kaity's condition, so it's been a great year with support very close by.

On our way home Kaity and I went staight through town and headed out to horse riding where we had to pick Rikki up, we made it home at 6pm. So quite another long day today.

Tomorrow we have to be at hospital at 10am, for an MIBG and then dental in the afternoon.

This was cheeky Kaity this morning before leaving home

---

Monday, November 28, 2005 7:24pm

Wow, what a long day.

We got up early, possibly about 6am, finally got out of the house around 7ish and made our way to Perth. It's approximately two hours depending on traffic.

Rikki came with us to help out (or was that to skip school). We arrived at the hospital and remembered our ward has moved to level 5 since they are renovating a new teenagers wing. Kaity was in a good mood and Doctor Sarah found excellent veins in both arms and placed an IV in her wrist. We then headed to Nuclear meds for an injection of contrast which would show her kidney functions. We managed to catch a wee (to check urine for NB markers) before Kaity was placed on a machine for hydration so that the test would show true results. Blood was extracted hourly and then half hourly. We totally forgot we would need to start drinking contrast at 9am for her CT, so luckily they rescheduled that for 2pm and we started drinking contrast at 12. So then we were busy and missed our Audio test which they managed to fit us in after hydration and blood draws!

Her hearing shows more loss in the high frequency range, still nothing to be really worried about but loss none the less, she could have more loss with time.

So, back to radiology for a CT. They checked as to how much Kaity had drunk of her contrast and were not happy with the amount, so we had to wait until it was gone before they would scan her... ugh... it was a nightmare trying to get the drink into her, she just wasn't playing the game, so slowly it went down, I was tempted to tip some down the sink as they have scanned before with only 3/4 of the can gone... hehe. But I did well and in the end there was only a smidgen left and they were still complaining, but Kaity was complaining worse than them, there was no way I was getting one more drop into her mouth.

CT was simple once she was on the table, she fell asleep after the injection of contrast into her IV. I had to wake her to get out of there.. hehe... CT's take only minutes, how can a kid fall asleep so quick!!!!

So anyway, we've basically just walked in the door, 7:03pm !! Rikki, Kaity and I had take away on the way home and got the boys something as well. The first thing Kaity wanted to do when we got home was to cuddle Possy, and she did.. one handed of course as she still has the drip in her arm.

So... tomorrow should be an easy day compared!

---

Friday, November 25, 2005 7:55am

Happy Stem Cell Anniversary Kaity

Two years ago today, Kaity received her first lot of stem cells back. I will never forget the smell, it was like someone had put a tin of corn in her bed for a couple of days. The feeling of confusion knowing this could be the treatment which could save her, but knowing we had another stem cell transplant to get through first.

It's been a long two years, but here she is! I remember the ward liason officer coming to me that day, asking how I felt. I told her my thoughts and feelings and her comment to me was... "Well who knows, she might just be the one to make it"... Boy did that comment shoot my hope down in flames, it made me realise that the staff held little HOPE for my child.

I will return with Kaity to the hospital next week, we will buy cake to share, and we will make a big thing of this anniversary. I will remind them that she's still here.

---

Thursday, November 24th 2005, 7:03am

Wow, Have you seen Kaity's Xmas Tree? I'm so amazed already, Thankyou to all four people who have donated. Phil Reid, Michele Chase, Esme Heimbach, Samantha Robbins and of course Anne Fitzgerald! We love you all and Kaity has seen her Tree and love's it, she would love more decorations.

So I'm getting nervous about hospital next week, I'd done well so far to forget about it really. To see her schedule check the journal history.

I'm going to leave these details up longer in the hope that you all donate in Kaitlyn's honour and create more decorations on her tree. The campaign actually kicks off on Dec 1st so we've got a head start.





December the 1st brings Lunch for Life month.

This year, Lunch for Life is getting into the holiday spirit! Thanks to the efforts of CNCF and an anonymous donor, your giving will translate not only into desperately needed research dollars, but also into gifts that will brighten the lives of these children. And one child will receive an all-expenses paid dream vacation to Walt Disney World, with the help of some incredibly generous donors .

Here’s how it works: Each child has his or her own virtual giving tree, and your donations will decorate those trees with ornaments and (ultimately) presents. Every donation has three effects: 1) the tree of your choice receives 1 ornament for every $5 you donate; 2) every donation generates a Giving Code which can get you bonus ornaments when your friends type it in; and 3) each ornament placed on a child’s tree creates one entry for that child into our Disney World giveaway. For example, if I donate $15 to a specific child’s tree, then that places 3 ornaments on his or her tree, creates 3 contest entries for that child, and generates a Giving Code for me to pass along. When a tree is full (500 ornaments), those ornaments transform into a present underneath that tree, and the decoration process begins all over again. For each present, the family can elect to receive one of several donated prizes for the child (including board games, stuffed animals, a gift card to Toys R Us, or even the ability to turn multiple presents into a portable DVD player or other bigger gift).

The Giving Code allows you to earn bonus ornaments for a tree by passing on the code to your friends. They will be able to donate their money in honor of any child they wish, but by entering your Giving Code, your chosen tree will receive a bonus ornament for each ornament they donate. For example, if I donated $15, I receive a Giving Code. I email that to several friends with the encouragement to donate to a child’s giving tree, and tell them to enter my code so I’ll get bonus donation credit. One of my friends gives $10 toward a different child’s tree, which buys 2 ornaments for that tree, but because he entered my code while making his donation, it places 2 more ornaments for free on the tree I chose. He’ll then get his own code that benefits his chosen tree, which he can pass onto his friends, and so on. This way, for every friend or family member you get to donate, you’re giving that much more in prizes and contest entries to your chosen child. Talk about happy holidays!

Finally, on December 25th, we will hold a virtual drawing, where each child has a chance to win the trip to Disney World. For each $5 donated in that child’s name by midnight Pacific time on December 24th, he or she will receive 1 entry in this drawing. For example, if $5000 total was donated in a child’s name, then that child would have 1000 entries in the contest. Each entry is assigned a unique number, and the computer will randomly select one of those numbers at Noon Eastern time on December 25th. We will post the winning number to the website immediately following the drawing, and the child associated with the winning entry will receive a free, all expenses paid trip to Disney World, including airfare, lodging, tickets to the theme park and shows, special front row and backstage passes, and many, many other perks!

Remember, now your lunch money can help save these children’s lives by funding scientific research on Neuroblastoma, while also bringing smiles to their faces with their own virtual trees and real presents. Please help make these holidays special for these wonderful children in need.

Lunch for Life

---

Monday, November 21, 2005 10:23pm

Two new Neuroblastoma Angels, please visit
Jonathan a long time warrior!

and

Liam

My deepest sympathy to both families.

Another little man who could do with your prayers is Isaac

--------------------------------------------------------
Kaity had a nice weekend, her weight tonight is 17.8kg.

She's been in such a cuddly "stop for a hug" mood! It's really nice.

Today she's spent a fair amount of time playing babies, unfortunately I'm the babysitter and I get stuck with a few whingy dollies occasionally, she learnt not to ask Rikki to babysit again. Rikki was in a teasing mood and sat on the baby!

Speaking of Rikki, it was quite bizarre this morning she woke with one eye swollen shut! Thank goodness it slowly opened and the swelling went down, of course the cancer mum in me panicked until the reality mum calmed me down! Probably a mozzie bite or something really silly.


Some small changes to Kaity's schedule for the 28th, 29th and 30th.

Monday 28th
Finger prick on arrival and insertion of an IV in her arm
Kidney test (GFR) at 10am
CT scan at 11am (I'm assuming we have to drink contrast an hour before this)
Audio for hearing at 12pm

Tuesday 29th
MIBG Injection at 10:30 am


Wednesday 30th
MIBG scan at 10am (we now do them awake)
Dental at 2:45pm

Tuesday the 6th December
Echo on heart at 10 am
Oncology Clinic to learn results of all tests. at 10:30 am

---

Sunday, November 20, 2005

Travis had a nice quiet birthday yesterday, he helped empty out the fish pond as all our fish died so we thought we'd start with it all fresh. It was indeed a big job.

We think the fish died because Kaity fed them half a bag of food a few weeks ago. She now knows she can't do that.

We got Travis a Fremantle Dockers Jersey for his birthday. He's happy.

Kaity is doing really well, we went on a beautiful late evening ride yesterday and she loved it, it was getting dark by the time we arrived home but that was due to having to stop to talk to so many people, Possy get's a bit impatient in those circumstances and tries to nudge me to move on.

Kaity's eating well again now.

So... here's our schedule for the 28th, 29th and 30th.

Monday 28th
Finger prick on arrival and insertion of an IV in her arm
Kidney test (GFR) at 10am
CT scan at 11am (I'm assuming we have to drink contrast an hour before this)
Audio for hearing at 12pm

Tuesday 29th
MIBG Injection at 10:30 am
Echo on heart at 2:30pm

Wednesday 30th
MIBG scan at 10am (we now do them awake)
Dental at 2:45pm

Wednesday the 7th December
Oncology Clinic to learn results of all tests. at 10:30 am

---

Friday, November 18, 2005 11:09am

Congratulations to Michele and family from New York on being visitor number 240,000!!! As soon as we get your postal details your "Kaity artwork" will be on it's way.

Kaity's weight last night was 17.7kg .

She now has a rash appearing below her nose, above her lip. I'll try some of my dermatitis cream and if that doesn't clear it we will visit the local doctor.

We will be giving away more Artwork so if you are visitor 250,000 then leave a message along with a copy and paste of the counter in Kaity's guestbook.

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Thursday, November 17, 2005 9:26am

I've just had the sad news that a little hospital friend passed away last night. I bet there's a huge party in heaven today!!! Ebony turned 5 just yesterday.

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Exactly two years ago today, Kaity was starting her first stem cell rescue/transplant.

I can't believe it's been two years, I remember it like yesterday, the fear of not knowing.

I've had a couple of messages in the guestbook (with no return emails to thank you), one from an allergy sufferer, thankyou, I could not find any information however on the allergy centre, but I will be discussing allergies with Kaity's oncologist and hopefully can get a referral to have it all checked. It's was quite bizarre because I had indeed been talking about allergies and was starting to believe that could be a root of a problem for Kaity, our local chemist also mentioned Allergies and Hayfever bring your immune system down, and with Kaity's already compromised immune system.. well.

Secondly Christine the Nutritionist, thankyou for your advice, I always weigh Kaity with the same item's of clothing etc, and I realise her weight will fluctuate, I'm just really anxious to get her back over 18kg, a small amount of weight loss on Kaity and you can tell, she's so slight. Even 300g is a big deal, but hopefully if she can stay well from now on the weight will stabilise and climb. Kaity eat's lots of bread, pasta, rice, meat and chicken.
Unfortunately after chemo her taste buds changed and we are still experimenting with foods, veggies is the hardest with Kaity, she was a HUGE veggie eater before she got sick, now she won't even attempt a lot, but she does love fruit, and lives on capsicum!

I must also mention that during treatment weight becomes an obsessive issue, weight is monitored daily. Also Kaitlyn's weight was an early indication that something was not quite right before she was diagnosed, unfortunately this was ignored by many doctors, and to this day I say, if your child is losing weight have it checked out, children do not lose weight for no reason.

Don't forget, if you happen to be visitor number 240,000 you are the winner of some "Kaity artwork" leave your details along with a copy and paste of the counter in her guestbook.

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Wednesday, November 16, 2005 9:11am

Kaity's weight is going up and down at the moment, last night she weighed 17.4kg.

She still has a crusty sore nose. It hurts to touch and is bleeding small amounts.

She's happy in herself and attended Kindy yesterday. She must have managed to wet herself in the tap or something as she wore the kindy's dress home, which she must have liked because she asked if she could keep it. She does manage to wear the kindy's spare clothes home quite a bit. She does like playing with water!

Rikki has been doing work experience at her horse riding school. She's loving it and even slept over there Monday night for an early start yesterday, she had to be up at 5 am to leave for Perth to be grooms person. She's now coming down with Kaity's cold tho, and is feeling achy and lethargic.

Travis turns 10 this weekend, it's hard to believe the little boy who didn't walk until he was 19 months and didn't talk until he was 3-4 is now turning 10.

Brad's not enjoying school much according to one teacher who rang me this week, Brad's always been a quiet little man, who is just average at school. Following in the footsteps of a bright sibling and is expected to do more. I know the feeling! So I can sympathise with Brad. I had a chat with him and said even though he doesn't like one particular teacher he must still do his work to his best ability. We'll see how we go.

Scans are getting closer, it's going to be a full on three days for Kaity and I on the 28th, 29th and 30th.

I've decided to have a bit of fun with the website, if you happen to be the 240,000th visitor copy and paste the counter into the guestbook, leave your email address and you will win some "Kaity artwork".

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Monday, November 14, 2005 8:22am

Our weekend has been really nice, with some food shopping having to be done on Saturday, we spent Sunday plodding around doing odd jobs.

Possum had a shower and looks stunning again. Kaity waited so patiently for her to dry off, although Possum did wonder why Kaity was checking her every 10 minutes.

Kaity chatted for the duration of her ride, which I chose to take a long one, she asked to stop in at the pub on the way past for a drink but I forgot money. We walked past the bowling club which I thought may spook Possy but I think the men got a kick out of seeing a pony on the main road... until....

Kaity said "Possy farted!" ... then... Possy stopped and refused to walk on.... I looked around, and she was doing a huge poo right outside the bowling club.

Can't take them anywhere! We got home and Kaity said "Well that was such a good ride let's do it again tomorrow"

Kaitlyn's weight is gaining, last night she weighed 17.7kg. So I'm pleased we are back on track again.

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Friday, November 10, 2005 9:04am

Kaitlyn had a sleepless night due to her nose being so full of rotten hard boogas. She found it hard to breathe and tossed and turned and moaned all night. She's not fond of sticking her finger in her nose, which I suggested might help if she pulled some booga's.

I've been looking into Mannatech Glyco Nutrient products for Kaity, they have started a HOPE programme in Australia but Kaity would still need to be sponsored for $175/month, this amount would be out of my reach. You can see a little girl who has had huge help from the products, visit Sophie. I would be hoping that the products will help Kaitlyn to stay well. If anyone is interested in sponsoring a small child into the Hope Programme, you know where to email me.

Kaity's weight today 17.3kg . She has put back on .3 Let's hope this is an upward trend and we get back to a good solid weight soon.

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Thursday, November 10, 2005 10:11am

How awesome, I've just had news that a friend of Kaitlyn's Grandma and Poppy has just seen Colin on the road, and donated some money.

Cheers GAIL!

We wish Colin a safe and enjoyable walk back to South Australia, sorry that we never got the chance to meet a hero.

Kaity is doing ok, she still has the runs, and has sores appearing in her nostrils. But she ate ok yesterday and I will weigh her in tonight.

Now just to get that butt back into the saddle and we're doing good.

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Wednesday, November 9, 2005 8:50am

CALLING ALL ROCKINGHAM SUPPORTERS!!!
Colin Ricketts is walking from Fremantle to Mandurah tomorrow! Unfortunately we haven't been able to catch up with Colin ourselves due to sickness, but if you see him, tell him Kaitlyn says hello and drop some money into his tin, give him a fresh drink and maybe a chocolate bar. It's a good cause!!! Could YOU walk around Australia???


Kaity's weight has now dropped very close to the 16 kg mark. Some of you may remember way back trying and trying to get her over the 16 kg. I can't believe she is now close to that mark again, I thought we'd well and truly said goodbye to the 16's. She was over 19!!!!

My antibiotics seem to have kicked in thank goodness, and today my plan is to make Kaity eat eat and do some more eating. She has already had two weetbix and two slices of toast.

In a couple of weeks we go for scans at the hospital, I cannot take her back to hospital weighing close to what she did after transplant.

She must know someone who refuses to have butter on bread and is mimicking them as she insists on no butter, this will not be helping. She's always had butter before so I can only put it down to copied behaviour.

Kaity will be spending time this weekend at home rather than visiting her father, we need time to recouperate from the sickness she picked up, and we need time to concentrate on her and her weight. Also, she hasn't ridden in a while as she was sick and then I became sick, so along with a lot of housework she needs to get back into the saddle, and has been begging.

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Tuesday, November 8, 2005 1:56pm

What a crappy few days.

I've been sick in bed not able to move and the kids have had to fend for themselves.

Oh boy, the house is bad.

Today I managed to get out of bed to see a doctor. She's checking for glandular fever, but also gave me medication for tonsilitis.

It's going to take me a week to catch up on house work and washing.

Kaity on the other hand is good, she still hasn't made up the weight she has lost but we'll get there. The kids managed to get her off to Kindy this morning, I'm not sure if her hair was done or anything else but I'm at the stage of... NOT CARING TODAY!

They have been trying really hard to keep up with the housework, but truthfully I think they have made things much worse, we have washing in the dryer, washing in the machine, washing on the line and washing spread through the house needing to be folded. Rikki did make them a nice simple dinner last night of Fried Rice.

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Sunday, November 6, 2005 8:53pm

So I now have Kaity's cold, my throat is sore and I'm aching all over along with fever's. It also proves that Kaity did pick up the sickness in Perth, it was 3-4 days from the time she came down with it that I got it. No wonder she's felt pretty miserable! Because I feel absolutely terrible.

Kaity's weight has dropped but is stable now. She's not eating very well and her nose is snotty.

The parachoc got her bowels moving.

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Friday, November 4, 2005 12:51pm

Kaity seems to have a cold. She has a blocked up nose. Problem now is she is constipated (gone from loose), and has lost a kilo in 2 days.

I really get sick and tired of her catching stuff, and it always seems to be 3-4 days after she's been to Perth!!! I cannot stress the importance of washing hands enough when it comes to a child who's immune system is that of a new born babies.

Losing a kilo for Kaity is a big issue, I struggled so hard to get her over 18kg and now she's under it again. She was over 19 only weeks ago. I wonder how much I should beat my head against the brick wall, I wonder how hard I should try and get rid of the crocodile in my lounge room.

For my daughter, I'd do anything!!!

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Thursday, November 3, 2005 11:00am

Last Friday we met up with Dawn for lunch. Dawn then took Kaity to see Tash at school while we did some chores at the shops. Kaity told the lady at the school office she needed her Tash and the boys. Tash then took Kaity around the school and to visit with Angel Josiah's daddy who happens to teach Tash.

It was CANTEEN bandanna day and it was great to see bandanna's everywhere.

Kaity then spent the weekend at her dad's.

She came home Sunday and hasn't really been 100%. She's had diahrea, and last night spent the night wanting to vomit. It was my turn at kindy duty but neither of us slept and Kaity was still feeling crappy this morning.

Friday the kids have a dress up disco. I will try and snap some pics, but don't expect to see Brad dressed up! It may ruin the cool image.

We are also expecting Dawn to be staying for the weekend.

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Thursday, October 27, 2005 8:50am

And yet another NB Angel gained her wings. Please offer support and prayer to the family of Tori

Remember that amazing guy called Colin who is walking around Australia with his friend "Wilson". Well, they have arrived in Northampton, which is just a little way up North, please keep an eye on their progress for when they get closer to Perth. Start a New life. A donation and some ice cold water won't go astray if you meet up with them.


I wasn't going to add Kaitlyn's new creation of a background. I thought I could get away with it. But she asked to see the ponies on her page and I had to admit to her that I had not done it yet. Her response made me cringe... "You promised!" and she dropped her head and walked away... UGH!

So we sat together and added each bit. She's delighted.

I have been very slack with updates and thankyou's recently.
Kaity did indeed have her 6th birthday, one I never really thought I would see her enjoy. Thankyou to Phil for sending her an amazing CD Walkman, she's going to enjoy our trips to Perth a lot more now, as will I, she's always wanting the music really really loud!

Thankyou to Dawn, Harry, Darren, Tash and Geoffery, for some money for her to save towards her flights she wishes to take, Aunty Sue as always spoilt her also with some dear little gifts along with money. Nanny and Poppy gave her some money also.. Thankyou. Uncle Troy, Aunty Tracy, Thomas and Bryce sent a new Wiggles DVD which she calls Wiggles round up, I'm sure it has a different name but we go with Kaity. Thanks. Aunty Ness, Uncle Kel, Sharyce and Baby Carlin send a card from Hong Kong, Thanks, we know you've been busy. Camp Quality sent her a letter, thankyou. Also thankyou to Petra, Kaity's Chemo Angel.

The last few days Kaity has complained of pain in different areas, all of which subside after a small while, we kiss it better and it's forgotten most of the time, her foot was a bit more troublesome the last few days, but seems to have stopped now, then last night her face swelled up after she complained of a sore cheek, but she's awoken this morning fine. I think she's probably getting a little more adventurous and is hurting herself more than before. Of course I can't help the horrible feeling that comes into the pit of my stomach at the very mention of pain. I will learn to deal with that feeling... eventually.

Today Kaity's at Kindy, tomorrow she is heading off for a weekend with her dad.

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Tuesday, October 25, 2005 8:55am

Another gorgeous NB child taken to heaven please visit Jaerah


Kaitlyn has created her own background. She has picked all the colours and pictures. Hope you like the change.

Kaity loves the movie Tarzan, so this new song is from there

Here are the lyrics.

"You'll Be In My Heart"

Come stop your crying
It will be all right
Just take my hand
Hold it tight

I will protect you
from all around you
I will be here
Don't you cry

For one so small,
you seem so strong
My arms will hold you,
keep you safe and warm
This bond between us
can't be broken
I will be here
Don't you cry

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more
You'll be in my heart
No matter what they say
You'll be here
in my heart always
Always

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Monday, October 24, 2005 2:34pm

Kaity is quite mischeivous. I was eavesdropping this morning and she was trying to convince her brother Travis to stay home from school so they could play, she was nearly convincing.

She's been on the go all weekend, and enjoyed playing with her friends Lauren and Stella on Sunday. When they all get together... LOOK OUT!

We had a kindy/pre primary fund raising event on Saturday night to attend. I did not take Kaity with me, but Rikki was in the fashion parade modelling, she had a ball and loved the Urban Angels clothes.

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Sunday, October 23, 2005 10:46am

Little Madison became an angel October 4th.

Another new NB Angel Michael

Please visit both angels.





Colin Ricketts is walking solo around Australia to raise money for Kids with Cancer, accompanied by his modified 3 wheel baby jogger named Wilson.

Colin and Wilson commenced the walk on January 4, 2005 from Adelaide, South Australia.

They will follow National Highway 1 in an anti-clockwise direction, including Tasmania & Alice Springs.

Inspired by his son who survived a childhood brain tumour and leads a healthy life, Colin will push his physical & mental ability to the limit in his attempt to walk over 15,000 kilometres solo around our great country.

Colin, a member of Lions, is raising money for the McGuinness McDermott Foundation in Adelaide, the Children’s Hospital Foundations in Melbourne, Sydney & Brisbane, the Royal Hobart Hospital and the Children’s Leukaemia & Cancer Research Foundation in Perth.

As Colin and Wilson get closer to Perth I would urge all West Aussies to keep an eye open for Colin, support his venture in honour of our West Aussie Battlers.

You can check their progress Here

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Tuesday, October 18, 2005 10:43am

Our thoughts are with Amy, Quentin and Jayden, as Jess's one year angel anniversary is close. Visit Jess

Also an online NB friend has relapsed Please visit Benny





As you might notice I've done some rearranging on Kaity's site, actually deleting might be the correct word. I was hoping to make page load up time quicker for our visitors. Feedback on that issue is welcome.

Kaity is well, she spent the weekend with her dad and came home with Grandma and Poppy, she was excited to show them around and pick them some lemons to take home.

Today she is at school, I'm sure she'll be in tornado mode once she returns. As she has been lately. Yesterday she drove her little car, I did explain that the ditch on the side of the road is a terrible hazard but of course Kaity has to try things for herself. No scratches to the car thank goodness. Oh and Kaity was fine too.

We have scans planned for late November, along with heart, kidney and hearing tests. We will be busy.

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Wednesday, October 12, 2005 4:05pm

I have deep thoughts for some hospital friends, little Ebony has relapsed and will soon join her soul mate and best friend Jess in heaven. Michelle and Anthony are fantastic parents to this gorgeous little girl, and my heart is with them. Amy, I'm thinking of you as Jess's anniversary is closing in. I'm sure she's looking over you all smiling and proud. Jess and Eb are going to have one heck of a party in heaven, dancing to the Wiggles I bet.

Our little friend Zoe has now finished all IV CHEMO for her treatment of ALL. Well done Zoe, we love you gorgeous girl and we are very happy to see you doing so well.



So I've suffered from the virus that Kaity brought home. I'm furious that we have to go through this time and time again. Sickness after sickness, after hard work of keeping her well. It sucks.

I've been so emotional and am putting it down to being unwell, I still feel real crappy.

Kaity on the other hand has recovered, is eating and hopefully gaining back the 2kg she lost. I've decided to not wait for OT to get back to me on Kaity's assessment and have finally taken matters into my own hands and am teaching her one small thing at a time.

My first obstacle is "The knicker Issue".

Kaity has a tendency when going to the toilet she pulls her whole pants off, knickers, trousers the lot! Then when no one comes to wipe her bottom etc she will walk out to where everyone else is... naked from waist down. She doesn't care if the queen is visiting or if we are at someone else's house.

So... the last two days, I've helped her to learn to put on her own knickers... she's still coming "Out" to do it, but at least now she has it down pat on how to put them on.. she's even attempting her trousers.

So.. one small baby step is one small step for sanity. We'll overcome our crocodiles and elephants in our lounge room.

Our little Possy was very happy indeed on Kaity's return, so much so that she popped her head through our dining room door. I swear it's a madhouse here, Kaity just sat eating brekky as if nothing was out of place.. a pony in the dining room is not normal.. surely!!!!

Kaity is very happy to be back to kindy this week, I'm starting to think she's ready for Pre Primary, and if she isn't .. I AM! I guess we will just wait for next year now, no point upturning the apple cart, she may as well stay with the friends she has made.

Well.. for now
That's it
Colleen

Kaity with her mini mum "Tash" on the jumpy castle in Busselton

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Wednesday, October 12, 2005 4:05pm

I have deep thoughts for some hospital friends, little Ebony has relapsed and will soon join her soul mate and best friend Jess in heaven. Michelle and Anthony are fantastic parents to this gorgeous little girl, and my heart is with them. Amy, I'm thinking of you as Jess's anniversary is closing in. I'm sure she's looking over you all smiling and proud. Jess and Eb are going to have one heck of a party in heaven, dancing to the Wiggles I bet.

Our little friend Zoe has now finished all IV CHEMO for her treatment of ALL. Well done Zoe, we love you gorgeous girl and we are very happy to see you doing so well.



So I've suffered from the virus that Kaity brought home. I'm furious that we have to go through this time and time again. Sickness after sickness, after hard work of keeping her well. It sucks.

I've been so emotional and am putting it down to being unwell, I still feel real crappy.

Kaity on the other hand has recovered, is eating and hopefully gaining back the 2kg she lost. I've decided to not wait for OT to get back to me on Kaity's assessment and have finally taken matters into my own hands and am teaching her one small thing at a time.

My first obstacle is "The knicker Issue".

Kaity has a tendency when going to the toilet she pulls her whole pants off, knickers, trousers the lot! Then when no one comes to wipe her bottom etc she will walk out to where everyone else is... naked from waist down. She doesn't care if the queen is visiting or if we are at someone else's house.

So... the last two days, I've helped her to learn to put on her own knickers... she's still coming "Out" to do it, but at least now she has it down pat on how to put them on.. she's even attempting her trousers.

So.. one small baby step is one small step for sanity. We'll overcome our crocodiles and elephants in our lounge room.

Our little Possy was very happy indeed on Kaity's return, so much so that she popped her head through our dining room door. I swear it's a madhouse here, Kaity just sat eating brekky as if nothing was out of place.. a pony in the dining room is not normal.. surely!!!!

Kaity is very happy to be back to kindy this week, I'm starting to think she's ready for Pre Primary, and if she isn't .. I AM! I guess we will just wait for next year now, no point upturning the apple cart, she may as well stay with the friends she has made.

Well.. for now
That's it
Colleen

Kaity with her mini mum "Tash" on the jumpy castle in Busselton

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Sunday, October 9, 2005 5:43pm

Hi everyone,

Thanks to Camp Quality we had a free chalet in Busselton from Mon - Fri this week during school holidays. We ended up with extras so the six kids and I jumped into the overloaded car and headed on our way.

Unfortunately Kaity ended up sick, from some sort of virus we think. But we did manage to get out and about a bit and the kids enjoyed swimming and frolicking in the spa... we just pretended Travis was over 10 so we got away with no adult supervision, he wore floaties all week!!!

Of course the girls did a bit of shopping and the boys dug up bugs and slugs at the beach too. They all loved the little mini golf park just out of town with a few extra attractions. Tash got a hole in one, shame it was a hole on the other side of the course, and thank goodness the bald old man moved at the last minute. Kaity liked hitting the balls around into the little water holes, it had rained a fair bit and she liked seeing her ball stuck in water. Of course Rikki managed to step into the biggest puddle available in her new boots.

Kaity and I enjoyed one afternoon in the spa, unfortunately the beds were real crappy, we could have sat in the spa everyday to mend our weary backs.

The ride home was glorious with one of the other kids falling sick... luckily it wasn't one of mine otherwise I'd have left him there... kidding. We weren't sure if it was because Trent and Brad had swapped footy jumpers for the day, or if he had Kaity's virus... either way he managed to puke on Brad's Eagles jumper. Just as well really, Brad's jumper seems to stay on constantly, at least now it can be washed.

So.. we're back home and I'm feeling very emotional. This is where you should feel free to stop reading.....

I'm crying at the drop of a hat, I'm starting to question why my daughter isn't normal but then feel guilty for our friends who lost their fight.

Here's some insight... Kaity is hard work, and I do admit I'd prefer the hard work compared to not having her. Kaity needs constant attention, from toileting to feeding. There is very little she does for herself. Then there is always the wondering every little flu or virus, wondering if this is her relapse. Wondering if this will be it, will she start going downhill from here, wondering if we will ever have NORMAL.

I'm feeling so conflicted.

Maybe some things I make harder for myself, for example I do not allow her to drink normal water, her water is bottled or boiled, her food is always fresh, and I wash her hands constantly, am I allowing her to be normal? No. I do not allow her to play in dirt, or be dirty. Yet here I am wondering if she will ever be normal ?!?!

OK so that's off my chest. Do I feel better ... NO. Will I ever feel like cancer has stopped ruling our life?? I doubt it.

Colleen

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Sunday, October 2, 2005 10:25am

Kaitlyn loved the Royal show but eventually got tired so we hired a push chair. She rode some rides in Kiddie Land, and came on the ghost train with us, which had me in stitches of laughter because there was someone in there touching our shoulders to scare us, I find things like that extremely amusing and had tears in my eyes.

Kaity was picked up early from the show by her dad and the older kids enjoyed the rest of the day and we watched the fireworks, it was slightly wet and cold. But a great day.

I'm home just for the day. Then tomorrow I head off to pick up the kids for a holiday in Busselton for 5 days. Should be fun.

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Wednesday, September 28, 2005 7:25am

Kaity has woken in an excitable loud happy mood.

She's 6 !!!!!!!!!!!!!!!!!!!!!!!!!!!

The kids are very excited, today we are off to the Perth Royal Show, they have missed out the last few years due to treatment etc, and they just cannot wait.

Rikki, Brad and Travis's dad has been very kind to give them spending money, Kaity will have a bit less but the older kids have vowed to share with her. After the show they are all staying down Rockingham.

I will not be near a computer for 5 days, then I will be home for a day before I make my way down to pick them all up to head off to Busselton thanks to camp quality!!!

Thankyou all for your birthday wishes so far. I know she's rapt to be 6!

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Monday, September 26, 2005 5:40pm

I've been so busy and just haven't got around to announcing Kaitlyn's newest cousin. Carlin Daniel was born at 3.53am, Saturday 10 September 2005.

"Carlin" has an Irish origin and means "Little Champion".

Carlin weighed 6 pound 10 or 3.1 kgs, is 48.5 cm long

Welcome to the world our new little champion, Kaitlyn cannot wait to meet you and see her cousin Sharyce again, who she insists she want's to keep, since Uncle Kel and Aunty Ness have a new baby to keep them occupied.

Meet Carlin Daniel







This morning Kaity woke up very distressed, we had planned a picnic but I rang the local hospital instead. They told me to go elsewhere as no doctor was on call.. great.

So I headed to PMH but thought I'd drop into the York Hospital on the way, luckily they had a doctor on duty, he was nice and checked Kaity right over along with his student doctor and both agreed she has pneumonia.

She's on medication, they were nice enough to give her capsules instead of syrup.

We got home and decided to head off on our picnic anyway. It was beautiful weather and Kaity even had another birthday cake in the bush, we had a bush BBQ which was very yummy.

Waiting for lunch



Kaitlyn and her friend Stella

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Sunday, September 25, 2005 7:36pm

Two updates in one day.. amazing huh.

Today we enjoyed a cake (pony cake) made by Dawn for an early birthday celebration for Kaitlyn. Thanks Dawn. Kaity loved having Dawn, Tash and Geoffery for the weekend to stay.

Thanks Aunty Sue for sending a card with some other surprises for Kaity's birthday.

Kaity is eating slightly better, let's hope we don't have another coughing fit tonight.

Here's Kaity waiting to eat cake.

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Sunday, September 25, 2005 12:56am (up early after Kaitlyn suffered a coughing attack)

Three little people in need of your prayers Fraser who has just learnt of relapsed NB and will be heading 800km to Sydney Hospital, and Jonathan who has had disease progression into his spine and suddenly lost movement from the chest down. Ashleigh had something showing on MRI which was biopsied and she now cannot walk again.



Kaity isn't eating very well, I will weigh her in the morning to see what her weight is doing, she was starting to feel better but her persistant irritating dry cough has returned!!!!!

I'm not concerned about her lungs as the x-ray did not show anything untoward, maybe it's asthma?!? The doctor did ask if she has had asthma before because the x-ray showed bronchial thickening.

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Thursday, September 22, 2005 7:46pm

On Sunday, Rikki and Brad went off with the school to the city for "Country Week".

They have spent the week playing soccer competitively against other country schools. They have won all their games and are playing tomorrow in the grand final.

Yesterday I took Kaity down to watch them, she was grumpy and sleepy. She had an invitation to cousin Amy's birthday party down Rockingham way so we made our way down there and caught up with Dawn. Kaity needed to buy Amy a present so we went to the shops where after selecting the present Kaity started acting really weird, and falling asleep standing up, I looked at Dawn, she looked at me and the decision to ring Dr Nicholas at Rocky Medical was unanimous. Thankfully Dr Nicholas took my call immediately and we made our way to see him, she presented with a 40.8 C temp. Dr Nicholas sent us for a chest x-ray which showed nothing untoward and the conclusion was - VIRUS! Panadol bought her temp down and she started feeling better.

So we made our way to McDonalds to give Amy her present. Kaity is always happy to see her cousins and played with Poppy for a little while. Her dad had to leave so only spent a little bit with Kaity.

So being late we decided to sleep at Dawn's much to Kaity's delight. This morning we woke up and managed to fit in some retail therapy with Dawn before heading home.

When I mentioned Kaity's birthday and anyone considering a birthday present for Kaity I actually was meaning anyone who would normally buy for Kaity's birthday, no pressure or expectations, if there's anyone wanting an address to sending Kaity a card please email me at dunnomuch@westnet.com.au and I will give you an address. Can you believe my babe is nearly 6 years old!!! Not to mention the 19 kg she now weighs!!! I'm so excited.

So school holidays start tommorrow. We have a few plans, like the royal show, not sure which day, Dawn and Tash and Geoff are coming this weekend, and in the second week of school holidays we're off to Busselton staying at Beachlands

Life is busy

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Thursday, September 15, 2005 11:05am

Kaity is at kindy so I thought I'd get an update in.

She's really well, no complaints just fun fun fun from the minute she gets up in the morning.

The weather has been up and down with lots of cold wind so she hasn't done a lot of riding because I don't want to risk cold and flu etc. This afternooon will be perfect weather and she's promised Possy she will be riding this afternoon.

It's been flat out busy here and will be for a bit longer, the kids have country week to get organised for, it's a week of sports in the city, they will be staying in a hotel with their teachers and are very excited, even though it cost me a small fortune. This weekend Kaity won't be going to her dad's as he is busy so I organised a day of sailing on Sunday with Camp Quality. Should be fun. Poppy has put his name down to come with us.

Camp Quality also rang me to let me know they had a cancellation and we can have a chalet in Busselton from the 3-7th of October, which will be school holidays, the kids loved that idea.

Rikki has a great many of important events, one of which is a some Small Town Seminar which she has been sent tickets to represent the Wheatbelt Youth ACC. She's still enjoying horse riding and is busy looking for a house with more land for us to move to so she can purchase her own horse.

Brad is still our quiet little man, will he ever not be? He's enjoying the spring weather and goes down to the town oval daily to kick his footy around with mates.

Travis had his assembly today and was a main character out of the Lion King, he spoke well on the microphone when his time came and is boosting his confidence daily. He enjoys time with his friends and has fixed his bike up so he can ride around town.

Kaity is maturing daily, and is a constant joy. She's ever loving but also mischeivous. She's starting to enjoy doing her hair at the same time as her big sister and likes to look at herself in the mirror, even though the hair basically looks like she got stuck in a tornado. Her birthday is coming up and if you are thinking of presents you may like to consider small amounts of cash, she really wants to ride a helicopter and is tossing up ideas of a hot air balloon ride, but it's expensive and we only have until November to get it done due to the hot air balloon season only going from April - November. She really has enough toys for her and every other child in town, and I hate to even make the suggestion but it's something she wants.

Well I'll be off for now
Love Colleen

---

Monday, September 12, 2005 12:55pm

There's a family which could do with prayer and good thoughts. Please visit Ashleigh

And another family that just lost their son and brother to NBLance



I promised the long version and quite simply haven't had time to get it done.

So here's a snippet.

On Wednesday our great friend Dawn met us at ward 3B to sit and wait for our turn to be called.

Actually Dawn met us in the carpark which was handy because I could not get a park and sent Dawn in with Kaity to get started on the finger prick whilst I parked the car down the road, it was wet, cold and miserable.

So finger prick done, with minimal fuss from Kaity. We sat and waited for our turn to be called in by the onocologist in charge. I mentioned to Dawn that if we were called in by Dr Marianne Phillips I would probably break into tears, as I was once told that she always breaks the bad news. Guess who called us is!!!!!! Thankfully Dr Phillips said pretty quickly, "Well the scans are all the same", to which Dawn and I did both have tears gathering in our eyes... wimpy huh?

She checked Kaity right over and mentioned that Kaity is 21 months off treatment, (I didn't really think about it but she was incorrect), she was excited and said that most relapses occur in the first two years off treatment, after a long drive and calculating I came up with one year off treatment, this month. So... one to go and we can Breathe a little easier. JOY!

I read the reports once arriving home and wondered when my paranoia will ever end, on the report is a section which mentions uptake in her neck which they are considering it to be neck muscle, well, I've never heard of this before and quite simply I start to wonder if they are missing something important, I've heard of that happening before. I need to get over my paranoia!!


Kaity has now lost her other top tooth!

So.. the weekend was extremely busy for us, we spent the weekend out on a local farm enjoying the company of new friends. The kids ran through canola crops (taller than themselves), oat crops, rode motor bikes, had a bonfire, caught yabbies, watched the men shoot tin cans for fun, and rode in the back of the ute. On Sunday they did not want to come home!

Here's some pics.
I will post the official reports of Kaity's scans as soon as I fish them out of the car.
Love Colleen

Kaity trying to catch up with the other kids in the oat crop, long way to go as you can see.


Kaity on the edge of the dam looking at yabbies just caught


Here's my letter to my online NB support group

I was sitting with a friend waiting to be called in,
word had it that Dr Phillips was always the one to
break bad news to families, she was lurking with a
file in her hand, I said "If she calls us in I will
cry", of course she called us in.

I cried right after she told us the scans were once
again stable. Before NB I was a strong person, even
cold, now I'm a sook, paranoid, and weak.

Dr Phillips went on to tell us Kaity is close to two
years off treatment, I was too excited about stable
scans to think straight, in reality she's only one
year off treatment. The first two years off treatment
are the most common for relapses, were her words. We
have another year.

It's decided next scans we do not inform Kaity that
the scans are coming up, Dr Phillips believes Kaity
may suffer some sort of anxiety of going back to
hospital, or in the very least picks up my stress
levels and plays games with them.

I got home and read the official scan reports, thank
goodness I have down to earth friends who tell me as
it is and to get over it and move on, otherwise I
would have stressed over the report too.

All Kaity's blood work is in normal range and her
urine markers were actually lower than normal.

Back to living
Colleen - Kaitlyn's mum
www.caringbridge.org/ne/kaitlyn

For anyone interested
Here's her MIBG results

MIBG-
Whole body images show no significant uptake within
the thyroid. Low Grade activity is noted overlying
the supraclavicular fossae, possibly related to neck
muscle or brown fat uptake. There is a focus of
mildly increased uptake adjacent to the medial aspect
of the right lobe of the liver noted on both planar
and tomographic images. On tomography this lies to
the right of the midline and corresponds with the
area of calcific abnormality on the recent CT. No
focal abnormalities are otherwise noted within the
thorax, abdomen, or pelvis. Whole body images show no
abnormalities otherwise. When compared with the
previous study the focus of the mildly increased
uptake adjacent to the medial border of the right
lobe of the liver has a similar apprearance in both
size and intensity of tracer uptake. No New
abnormalities are noted.

---

Wednesday, September 7, 2005 5:50pm

Short version - today we were told that Kaity is stable.

Longer version to follow soon.

---

Monday, September 5, 2005 8:48am

Kaitlyn is having an extended weekend at her dad's house. She was going to be coming home today but I will now pick her up tomorrow whilst in Perth attending my Uncle's funeral.

I have to try and overcome my paranoia, I spent a fair amount of time on Saturday in tears missing Kaitlyn, a friend and I drove up to Koorda from Perth and I kept on turning around to speak to Kaity and of course she wasn't there. I felt like something was missing all day and could not get my mind off the fact that the technicians rescanned her pelvis area and have NEVER done that before, along with the chat amongst themselves it has made me very nervous.

Once I managed to stop my thoughts, I was able to enjoy my weekend away, the Koorda show was on and even though very small it was a relaxing day and night. I was in good company with people making me feel very comfortable and welcome, and my cheeks and tummy were very sore from laughing a fair amount of time.

We picked the other kids up yesterday.

I will not update until Wednesday on arrival home after our hospital visit.
Love Colleen

---

Friday, September 2, 2005 8:01am

So last night was Father's Night at kindy, Kaity had been looking forward to it for ages, I was going to just try and ignore the night but she so much wanted to go. I wondered how many father's would actually be mother's. We got over there and Kaity showed me around, then we did some nailing with wood, and Kaity decided she was hungry so ate some tiny teddies. Then, she was finished! We went home.

I have to make a few apologies, I've received a few personal emails and I just can't bring myself to reply at the moment, besides the fact I've been very busy I am just not in the frame of mind. I'm so stressed about what I could be told next week. Kaity is still limping slightly, I know she's always had a bit of a limpy walk but this is somehow different. She is however eating well and putting on weight.

My deepest Sympathy to my Aunty Lorraine and family on the loss of Uncle Ted, I have fond memories of a gentle uncle from childhood. Rest Peacefully Uncle Ted.

Well that's about it for now, the kids are off to their dad's for the weekend.

Love Colleen

---

Wednesday, August 31, 2005 6:26 AM CDT

Two new NB Angels have gained their wings.
Jamie
and Ava, please visit their pages and offer support and prayers to their families who now have to learn to live without their gorgeous little ones. I can't even imagine what that would be like.


Kaity woke up in a good mood, we had brekky got ready and jumped in the car to make our way to Perth.

Kaity pratically ran into the hospital. I was amazed as she tried to outrun me, considering her mood the previous few days.

We went straight up to level 5 just after emptying our bladders after the long drive. Kaity climbed up onto the table for her pictures and was doing well watching videos. Half way through they asked for her to empty her bladder to which I explained she already had. They said it certainly didn't look like she had and they would need clear pics of the bladder/pelvis area. So we toddled off to the toilet but she just would not go. We went back and confessed to not doing wee's. I could tell there was some issues with the bladder and pelvis area, unfortunately they would not tell me anymore, I have to wait for a week.

So after the pictures Dawn joined us at the hospital and we decided to head down to Booragoon to do some shopping and lunch. Kaity and Dawn managed to find some bargains and Kaity was very happy and chatty. Even cheeky.

So we're home again now, due back at hospital Wednesday 7th next week.

This weekend is Father's Day and the kids will be spending the weekend with their dad, I will be going away for the weekend with friends.

Colleen

---

Tuesday, August 30, 2005 7:24pm

Kaity woke up feeling slightly better this morning but still not wanting to walk, I took the stroller and was thankful I did as she weighs 18.5kg now.

She was very chatty to the technician and doctor asking lots of questions and was willing to return the arm board which was holding her IV tap to Sister Lee at ward 3B. She walked slowly downstairs.

We then made our way down to have lunch with Dawn and Tash and called in to see Aunty Sue. Kaity was giggly with Tash and very chatty.

We dropped Tash back at school and went to do some shopping and errands. Kaity soon decided she would walk and shop! She found a My Little Pony which she didn't already have and some lollies to eat on our journey home.

Tomorrow we have her MIBG scan scheduled for 10am. Since the doctors said she has grown up so much recently and is very brave they are wanting to try the scan with no sedation. She will have to lie still for an hour, whilst the machine comes very close to her body and scans her whole body in sections including her head. She will be able to watch videos so I'm hoping she can do this without sedation because it means we get out of there quicker and we will not need a hospital bed.

I am starting to feel a little better as far as my stress levels go, she is walking again and has been eating well. She did have a very busy weekend so I'm wondering if it was just a little too busy, with a visit to a farm on Saturday where she rode motorbikes and fished for yabbies and rode on the back of a ute, then Sunday we went for a BBQ with Rikki's friend Tiffany's family and she spent a fair amount of time been jumped up and down on the trampoline. Maybe just too much along with suddenly going back to the hospital.

Saying my prayers for stable scans, if we manage clear scans it could only be the work of GOD.
Love Colleen

---

Monday, August 29, 2005 2:11pm

Kaity has had a good weekend but has slowed down somewhat. She isn't running at all and is walking at snails pace, complaining of pain on and off in different places.

She had her first sleep over with friends this weekend and they were up giggling and chatting until 10:30. She then spent her first night alone in her own room to sleep last night, she's such a big girl.

Today has been a nightmare, I got to Perth and realised I'd left my purse at home, so I couldn't even buy Kaity anything to eat and had not packed anything because we'd left so early in the morning.

We got to hospital and they put a drip straight into her arm, it went in nicely and bled all over the bed. They took a large amount of blood for special blood tests and then we waited until it was time to go upstairs to her CT scan appointment, she had drunk the most of the lemonade and contrast she was supposed to drink.

The technicians let her put her care bears on the machine and play with the controls before it was her turn, she got up and was laying still until the contrast was injected into her drip which made her vomit everywhere. Thankfully there was still some contrast left so the doctor injected the rest after I changed her into hospital clothes and then did the Scan.

I managed to scrounge together $4.50 in the car and got her some macdonalds on the way home, but she wasn't feeling very well and was fast asleep, she ate it once we arrived home. We came home instead of staying at the RMH because we would have simply starved without money. At least we will get a decent nights sleep, we have to leave again in the morning at 8am.

Like I said, she isn't walking very well and it looks like she has a urinary infection as she is going to the toilet a lot and had blood in her urine this morning.

She still has a drip in her arm which they will use tomorrow, much to her disgust.

---

Friday, August 26, 2005 7:26pm

Little David is now with our other NB Angel friends.


My nerves are starting to kick in. Kaity starts her three days of scans on Monday and it cannot be soon enough.

She's been great but tonight has a sore foot and is limping.

I know it's probably something really simple, she may have caught her foot in a stirrup etc...

Today the older kids had their sports carnival, they entered in everything they possibly could, even the 1500m run. Brad came runner up champion boy for his age group. Rikki did really well but missed out slightly on runner up champion girl.

OK, think of us this weekend and next Monday Tuesday and Wednesday, pray we get stable results and can enjoy the next 3 months of life again. Kaity really is growing up and becoming even more of a joy than ever. We just can't go back to the world of chemo etc.

One thing I will try and get done while in Perth is Kaity has asked for a ride in a helicopter, there was some at our local show but I thought it was too expensive, but after consideration I am going to take her to the river in Perth where they have rides, if time permits.

Her birthday is coming up in September, keep the weekend after her birthday free as we've decided on a western weekend with cowboys and cowgirls. No real big plans yet, just the idea.

Colleen

---

Monday, August 22, 2005 12:43pm

Sorry it's been so long between updates.

Kaity still has a cough but is improving, tomorrow she will return to kindy.

We had a busy weekend, since it was the local show here in our town. We organised for old friends to come and stay from Rockingham, Tracy and her twin son's Trent and Taylor. Her boys have been friends with Brad since Pre primary. We spent an hour Saturday morning with Kaity at the show, she was a bit quiet as she walked around, I think she was trying to work everything out as our oval is normally pretty quiet. Also the sun makes her quiet as she cannot see too well due to her eyes being sun sensitive. She didn't really get to do much before her grandparents met us and took her home for the weekend. She now can't wait for the neighbouring town to have their local show.

So we all went back to the show for the fireworks later on that evening. The kids walked home and Tracy and I stayed on to meet the locals, the drinks dried up at the bar on the oval so we walked to the pub and played some pool, after which we made our way back to a campfire on the oval and stayed out until 6:30 am. It was a brilliant night and we did indeed meet some funny people.

I climbed into bed only to be awoken 30 minutes later by 7 kids.. only 3 were mine... I always seem to get extras. I thought I may as well get up and have a shower.

We picked Kaity up at Kings Park yesterday where she was enjoying a picnic with her family. It was indeed a long drive, thankfully a local friend drove me down.

Kaity can't wait to go riding today, she hasn't really been up to going outside while she's been sick.

Kaity has scans coming up on 29th, 30th and 31st of August, please keep her in your prayers.

Colleen

Kaity's school pics came back, in her group picture she's the only one not looking at the camera.

---

Wednesday, August 17, 2005 10:59am

I've just today found the urge to update.

Kaity has turned a corner and is showing improvement today from the flu.

Thursday morning I believe she had a seizure, although I did not witness it she was indeed acting like she just had one. Maybe it was caused from the temperature she had. In any case she did not respond to anything for 20 minutes and after that time she started slowly coming around and eventually was running around like there was nothing wrong with her, a day later she was showing more symptoms of the flu and has basically not eaten and not done much since then. She's been on penicillin which I don't really know if it's helped anything.

So after saying how good everything has been we've had a bad patch, my leadlighting got broken in my front door at Brad's party, my car isn't running, which makes life hard because I cannot take Kaity out in this weather to even walk to town, and my toilet is blocked.

Still I am thankful of Kaity's miracle from God.

---

Wednesday, August 10, 2005 3:07pm

Kaity is crook with the flu, she was unresponsive for 20 minutes this morning and I spent the morning at the doctors, she is now on Penicillin and Neurophen for her temperature which was 41 degrees...... UGH!

I don't think Kaity's reaction was from the flu because 30 minutes after coming home she was eating and drinking and eventually running around again, I think she may have had another seizure. She wet the bed (Kaity never wet's the bed) and was not responding, and when she started to talk etc she was saying things that didn't make sense. She asked for mummy when she was in my arms. Then sitting in the chemist she told me we needed to go "that way", I asked why and she said "to buy Hay".

So she seems better now, and has an appointment at the doctor tomorrow, I will keep her on the penicillin in case.




Firstly thank you so much to Anne for the parcel we received from the USA. It was a parcel of love indeed. One special Item was a shirt with the message "Life is good", it certainly is good and as soon as I get a photo of Kaity in the shirt I will post the picture here. We love you Anne!

Secondly today we received a song from Song's of Love for Kaity - Songs of love . Kaity's song is personalised and really catchy, the kids have played it no less than 50 times already. As soon as I work out how to add it to the site I will. For all our Aussie friends I'm thinking of becoming a Song's Of Love messenger so I can help sign you up for your own song, just give me an email me dunnomuch@westnet.com.au

Here's a link if you would like to hear Kaity's song It will take time to download and I'm not sure if it will work.. if you are having troubles let me know.

---

Friday, August 5, 2005 4:50pm

Three families that could do with your prayers and kind words.

Kaitlyn

and

David


Zach

---

MOnday, August 1, 2005 12:0pm

Rikki-Lea and Brad lost a new friend recently. They met Karen on the CANTEEN camp in Kalgoorlie. I never met Karen personally but they speak of a wonderful young lady who had time for everyone. Karen had a transplant was doing well and passed quite suddenly.



Well it's been a while since I've updated.

So.....

I shall start with our princess... She's doing really well, still growing and stacking on the weight, I will not carry her anymore, she's way too heavy. She's making new friends and enjoying Kindy a lot, in fact she misses it the day she does not attend. She rides her pony most days and also misses that when I do not have time to take her out.

Travis has just had a clear report on his knee finally, and has been riding the pony also, he's doing really well and riding alone. At school they are practising for athletics and he got the longest long jump in his class, which was all done before his doctors clearance unbeknown to me.

Brad is still my quiet little Brad, he broke up with his first serious girlfriend but has another girl in sights. Brad turns 13 soon. Which is really just too unbelievable. Time has gone so fast. Brad's starting to come out of his shell a little bit and was a really groovy dancer at camp I heard. He kicked 7 goals at footy this weekend and seems to be getting back to his previous level of footy before he broke his collar bone last year.

Rikki is my busy little bee and always has been. She's heavily involved in the Wheatbelt Youth ACC, their project is to build a travelling outdoor movie theatre if they receive their funding. This weekend she went along to a Film and Television Industry work shop which involved learning to use cameras, lighting etc. The course cost $250 which the group paid for her. She thoroughly enjoyed the weekend and came home very excited. She's enjoying riding lessons each Monday and is riding this huge horse called Crackington, he's massive! Rikki is also invited to the Governor's Brekky on Thursday, so that's a big event, I'm pretty happy and proud of her achievements and attitude this year.

That leave's me... I'm just the slave who cook's, clean's and runs kids everywhere!!!! Oh and yeah.. thanks for reminding me Jane, I'm chief poo pickerupperer. Jane my friend actually called me during my routine poo picking up, I was thankful for the phone call which gave me time out from the poops.

Gotta love that.

Colleen

---

Tuesday, July 26, 2005 4:22pm

I just wanted to alert you all of a gorgeous little Aussie boy who has passed away from NB. You can see a newspaper article here Jesse's brave battle ends

Also please visit with a new friend of ours named Lacey she's absolutely adorable.

---

Sunday, July 24, 2005 8:33pm

There's a little girl named Kaitlyn who needs some prayers and hugs. Please visit her website.


Apologies for no update for a while.

Kaity spent the weekend with her dad. She is home again.

Wednesday at the neurologist was as I expected and since Kaity has only had one seizure we cannot do anything and she may not ever have another, if she has another we still most likely cannot do anything unless she has another after that.

The cause of her seizure the neurologist felt was most likely due to a change in routine (late night) the night before or something similar.

Kaity is starting to discuss her birthday. She even wants to invite her teachers to her party and says she would like to turn one instead of six.

Well that's it for now.
Love Colleen

---

Ssunday, July 17, 2005 9:30am

Two more NB angels have flown to heaven.
Prayers for the families of Darren and Cameron



Friday our dear friend Dawn came with Aunty Sue to pick Natasha up. We were busy cleaning in the morning when I said to Kaity "Clean your room please".. to which Kaity replied "NO!" with a frown I said "excuse me?" Kaity put on her sweetest voice and said "No Thankyou!"

I know I should have been angry but at that point it was hard to keep a straight face.

We all decided to go for lunch at the local Pub, Kaity was sitting adoring Dawn's lipstick and asked what colour it was. Dawn reached into her bag and pulled a lipstick out for Kaity to keep. She asked Rikki to help her put some on and was carefully trying to not to move her mouth so she could show her lipstick off.

After a while we were talking away and I heard in the background Kaity asking for help to put more lippie on, I was finishing my conversation when I happened to look out the corner of my eye and... she was doing it herself.

Of course none of us could contain our laughter, and I am sure the rest of the pub with all the farmers having their lunch wondered what on earth was wrong with us.

Take a look for yourself.

---

Thursday, July 14, 2005 2:36pm

Yesterday we had hospital duties. First we went along to the dentist, of course I knew Kaity would not comply but the dentist managed to get a look by wedging a soft toothbrush into her mouth. Final outcome - No decay and the dentist would like to see Kaity on a regular basis to get her used to going there. She was well pleased with Kaity's teeth considering how hard it is to get Kaity to open her mouth and brush her teeth. The good thing is Kaity doesn't enjoy lollies much so therefore doesn't have a lot of sugar.

Secondly we stopped off at oncology, Kaity's EEG was normal. She now weighs 18.7 kg and is 110cm high. Bloods were good. All the nurses just adore Kaity's hair and she gets many comments at clinic. We also met a newly diagnosed girl the same age as Kaity who has Wilm's.

Thirdly we visited with Occupational Therapy, Ranita spent over an hour assessing Kaity's fine motor skills. We do have challenges to face and as yet she hasn't assessed her gross motor skills which are in my opinion worse. Ranita did notice a habit forming with Kaity's obsession of lining things up.

We will attend OT on a regular basis also and hopefully address some problem areas. Like, sleeping in her own bed, feeding herself, toileting herself and dressing herself, we will face one issue at a time and pick which battles are most important first. Next week she will be assessed for her gross motor skills.

Next week we also see a neurologist to try and get to the bottom of the seizure.

Last night I posted a sequence of photos from July of 2003, 2004 and 2005. You will note that in each picture Kaity is holding a blue teddy named "Kylie". We came to realise Kaity's love for Kylie before her diagnosis with NB. Kylie was Rikki's teddy which was given to her at a dance competition for good luck, the song which Rikki was dancing to was a "Kylie Minogue" song "Can't get you out of my head". So the teddy quickly became "Kylie". Last night after I posted the pics I realised how ironic life is, Kylie Minogue herself is now fighting the cancer battle. Kylie the teddy was with Kaity for a lot of her first treatments.

Anyway that's enough for me.
Love to all
Colleen

---

Tuesday, July 12, 2005 6:20pm

I received this and wanted to pass this families wishes along to all our wonderful supporters, please remember this young man and send him love, prayers and wishes.

"This is Zach's mom - just rallying up prayers for my son. We are home today
on hospice and just needing everyone's prayers. Zachary's pain is managed
and he knows just how important he is and a difference he makes.

He turns 13 - technically Aug. 1st - but, we are having a birthday bash for
him tomorrow! He doesn't have much time left here on this earth. In the
mean time - we are making it an awesome time for him!!!

It will make his day to know how many people care for him and love him and
are praying for him!

Zach's mom"
Zach


When Kaity was diagnosed June two years ago it took us a while before we photographed her. Her first photo after being diagnosed was 12th July, then a year later we took another photo to compare, tonight I've taken another similar picture to compare yet again. Here they are.


12th July 2003




12th July 2004




12th July 2005

---

Sunday, July 10, 2005 11:45am

Kaity is home and has BIG NEWS!

Her front top tooth is loose. She has already lost her bottom front teeth but this one is going to be a big event! This is a milestone we've been lucky and blessed to receive.

We have an appointment on Wednesday for results of her EEG along with an appointment with Occupational Therapy and a dental appointment.

---

Saturday, July 9, 2005 9:52am

Hi All,

I'll be picking Kaitlyn up today along with Brad and Rikki who are returning from a CANTEEN camp in Kalgoorlie. I've heard that the camp has been brilliant and I've also heard we need to visit there at a later date because there's "so much to do".

We'll also be picking up Kaity's "second mum" Natasha who is coming for a week to stay.

Once we've got everyone on board we'll be going ten pin bowling with camp quality.

So a busy day in all, I best be off to get this house tidied up before I leave.... aarggh!

Love Colleen

---

Monday, July 4, 2005 3:24pm

This morning I took Brad and Rikki to the train station in Northam to catch the train to Kalgoorlie. They are off to a CANTEEN camp which looks to be a lot of fun.

Kaity went yesterday to her dad's so it's just Travis at home, he's enjoying the pony while Kaity is away and is riding without the lead now.

It's really cold here at the moment, lucky we have the wood fire to keep us warm.

By the weekend all the kids will be home again and they will finish their school holidays at home.

Love Colleen

---

Saturday, July 2, 2005 9:42am

Ryan has become an angel, please visit his site and offer support to his devastated family/.



Just a quick update...

I kept Kaity awake late the night before her EEG, got her up early in the morning, and talked to her all the way to Perth.. two hours!!!

She was in a good mood and played "I SPY!", and then it was her idea to play the "Belonging game".

We got to the hospital and went for the test, she was very helpful and easy going and kept asking the nurse what colour cord she was placing on her head next, and was very excited about the two purple leads.

She fell asleep really quickly which was no surprise as I was also falling asleep. Then they woke her up and placed flashing lights in her eyes, very cruel considering she just wanted to sleep.

So with that done we made our way home, by the time we got to York I decided it was best we stop because I was on the edge of falling asleep, we grabbed some coke and fruit tingles and some fresh air and the rest of the trip was no problem.

The following day it was Travis's turn for hospital, so we made our way down early and he had his appointment with his orthopaedic dr and then the dentist. All going well and he will continue antibiotics for another two weeks and then return two weeks after completion.

Yesterday Rikki decided we'd better go check out her school for next year as they had an open day and she wanted to see what the dorms and bathrooms were like, yes, she's decided to board away next year for school. She's applied for two schools and is hoping for one in particular which is the further from home, but she believes it's the better school.

Today I'd just like to not have to get into the car, with three days of travel I am tired.

We did get a note home from the kindy that Kaity has been exposed to Whooping cough, so we are keeping a close eye on her and hoping she doesn't come down with it.

It's looking like a nice day today so best get her out on her pony as she's been nagging since I've not had time for the last 3 days. She did however ride into town on her on Tuesday, she loved that and so did our precious Possy.

Love to all
Colleen

---

Tuesday, June 28, 2005 9:02am

I've just got in from dropping Kaity off at Kindy. She loves to go nowadays and has made firm friends with little Gabby.

Tomorrow we are off to PMH for an EEG. Which will measure abnormal seizure activity. I am supposed to keep Kaity up late tonight and then drag her out of bed at 6 am, drive two hours in the car and keep her awake. It's not gonna happen, Kaity sleeps automatically in the car. So I don't know if the test will be of any use, but we shall go ahead and do it anyway.

Kaity is riding her Possy daily when she is home. She loves the bush track down to the river and calls it "The Hundred Acre Woods". Her little pony is doing really well and looks after Kaity nicely. We've even stepped over a fallen log, Kaity calls it "jumping" but at a walk I can only call it stepping, she even leans forward ready for the jump.

Well not more to report,
Will get back with results as soon as they are available.
Love Colleen

---

Tuesday, June 21, 2005 4:50pm

Here's a link for quilters, a beautiful fabric with links to a little NB girl.

Fabric


Thanks "friend" for reminding me to add a couple of links.
Please visit with a young aussie boy named Jacob
who could do with your prayers right now.

Also another Jacob who passed away the day before his 14th birthday. Please offer prayer and support to his beautiful family.

2 years ago today Kaitlyn was diagnosed with cancer.



Kaity is doing well despite suffering from a small cold since she returned home. She has been riding daily, and is loving her pony. We've progressed to bush rides which they both enjoy. Currently Kaity is only using a saddle but will be using a bridle as soon as we buy one, she rides no hands so won't take long to get used to the bridle. Kaity looks like a natural on her pony.

We've had appointments come through for an EEG, and other things. Also an occupational therapist has made contact to see what needs to be done for Kaity's motor skills.

Well, two years ago, I never really thought I'd be here with a healthy daughter, we weren't given much hope at all, I'm so grateful for where we are at, and thanks go to the doctors and of course to all our prayer warrriors out there along with the man in charge. God is GREAT!

Love Colleen

Kaity and Possy.

---

Friday, June 17, 2005 12:32pm

Sweet little Emma Gracehas become an angel, along with Jay . Please visit their sites and offer their families prayers and support.



Happy Birthday Rikki-Lea, 15 today!!

Well, Kaity's little Possy has arrived, she's so gorgeous and sweet and Kaity is in awe. We borrowed a saddle and gear yesterday and finally it stopped raining enough for Kaity to brush Possy and ride her, although it was just a small ride, Kaity actually giggled too much to make any sense from it. She did however do some excercises sitting in the saddle.

This weekend we are looking forward to having family down.. and Rikki has a sleep over organised.. the house will be full!

Love to all
Colleen

---

Wednesday, June 15, 2005 7:43pm

We're home!!!

Oh boy!! What a demanding and trying two weeks.

Firstly.. Travis fell and his tooth went into his knee.. broke his tooth and caused a 1cm cut to his knee joint.

So we went to emergency at the local hosp.. not a real thrilling thing.. they had a bin labelled "Body parts". That was scary!

Anyway.. everything was fine I was told to be very careful and watch him closely.. and I thought the doctor was overreacting.. it was a tiny cut!!!

Anyway.. within an hour of arriving back home, Travis could not walk and was in severe pain, I sent him to bed thinking he was sooky and playing on it.

By morning, his knee was the size of a football!!!

Back at the doctors, they suggested an emergency dash down to Perth to Emergency at Princess Margaret Hospital.

We got there and sat in emergency for what seemed like hours.. it probably was. Then Travis was wheeled off to Surgery to flush out the knee and have a camera inserted to see what was happening.

So all went well and we spent the next few days on ward 6A.. for those of you familiar with Kaity's diagnosis you will realise she was diagnosed in this exact ward two years ago this month. As I walked down the corridor for the first time I was sickened at the memory.

I took Kaity up to visit Travis and she was fine sitting on his bed eating bacon balls.. until... she had a seizure!!! I called the nurse and she saw Kaity coming out of the fit. She suggested going to emergency but I took Kaity to 3B our Oncology ward. They immediately did blood pressure etc, and Kaity came back out of it all eventually her usual self.

So.... Travis had to go back to surgery because his knee wasn't improving. He was very anxious about most things, and probably not the best patient.

Kaity had a CT done on Monday which showed nothing bad on her brain... so we wait to see a neurologist, and an EEG.

Travis enjoyed attention from the young nurses, one who was trying to steal kisses from him. He had another making him milkshakes and pretty much everything he wanted. He's going to be a real ladies man when he grows up.

So anyway, we're home, and thankyou all for your thoughts.
Love Colleen

---

Thursday, June 9, 2005 7:37 PM CDT

Hello, It's Rikki again.

Travis had another operation on his leg today and had a cap put on his tooth.

Kaitlyn's blood test results came back normal and she has a CT scan on Monday to see what caused the seizure.

From Rikki-Lea

---

Monday, June 6, 2005 7:23 AM CDT

Hi it's Rikki,

Mum's still down in Perth with Travis in hospital. He has had surgery and is now feeling a bit better.

Today Kaitlyn visited Travis and had a seisure on his bed. Tommorow she has to go to oncology to see why she had a seisure.

Hopefully, they will all be home in a few days.

From Rikki.

---

Thursday, June 2, 2005 8:56am

A little online NB friend who was diagnosed a month before Kaitlyn has just learnt he has relapsed. Jamie (also known as Beebo) may have only weeks on earth left. He has relapsed in his Liver and bone marrow. Please visit and offer support.




We're on our way to hospital... did I tell you I didn't like JUNE!

Travis has septic arthritis in his knee... and will need orthapaedic treatment.. so they say!

His tooth went into his knee last night.. and half his tooth broke off....

I HATE JUNE!

---

Tuesday, May 31, 2005 12:51pm

Yesterday we did more tidying up in the yard, Kaity spent some time out with us giving instructions.

Rikki-Lea started horse riding lessons at Whitebourne Equestrian. She enjoyed her lesson and will next week start trotting. She's excited about that. Kaity came to watch Rikki and she spent some time looking at the other horses, comparing them to her Princess Possy. Of course none of them compared in her eyes and when we got home later she said " Mummy, I don't think I can wait weeks for Possy! ". That was so beautiful! She's really fallen in love, which with Kaity is a BIG thing. She even tells me she loves Possy 5... I know it doesn't sound much, but she loves me 5 also. So it's huge in her mind.

This morning Kaity could not wait to get to class, I could not keep up with her as she raced down the path. Then we got to class and she said "Oh we forgot news!" so I dutifully went home and brought back her news which she requested.

Tomorrow is June, and I don't like to be paranoid but....

A long time ago my mum gave birth to her first baby, my brother was born on my mums birthday, June 18th. Little baby David passed away June 21st just 3 days old.

I went into labour with my first child June 17th, we prayed hard that Rikki-Lea would not be born on the 18th. She arrived on the 17th much to our relief.

Then.. June 21st 2003, Kaitlyn was diagnosed with Neuroblastoma. I'm really not looking forward to June, and I hate being like that but I cannot help it.

In 2003 when Kaity was diagnosed, my parents were away on holiday, they had planned again to go away on the 20th. I had to insist they stay for the month of June. I'm that paranoid of DeJaVu.

Love Colleen


News:
Colin Ricketts is walking solo around Australia to raise money for Kids with Cancer, accompanied by his modified 3 wheel baby jogger named Wilson.

Colin & Wilson commenced the walk on January 4, 2005 from Adelaide.

They will follow National Highway 1 in an anti-clockwise direction, including Tasmania & Alice Springs.

Inspired by his son who survived a childhood brain tumour and leads a healthy life, Colin will push his physical & mental ability to the limit in his attempt to walk over 15,000 kilometres solo around our great country. To follow Colin's progress click here.

---

Sunday, May 29, 2005 8:32pm

Today we went for a long drive. We drove to Manjimup to look at a pony named Justt Possum. We got there and soon realised this was a special pony, we watched her little owner Katie ride her and brush her and our Kaity spent some time cuddling and patting her. Kaity even checked out what was under Possum's tail, with no complaints at all from Possum.

Kaity did try and talk us into bringing her home today, but we figured a pony on the back seat probably wasn't a good idea for the 4 hour trip home. We will take delivery of Possy in about 3 weeks. Kaity is very excited and we have some work to prepare the yard some more.

Here's some pics of Possum with Katie and Kaity.
If you'd like to see where Possy comes from here's a link to the Justt Stud

---

Saturday, May 28, 2005 8:45pm

Please visit our little friend Dylan, he isn't well.

Another little NB Angel, please offer prayers to little Jakes family.



I've been reading through Kaitlyn's history, wow, we've come a long way. I realised that it's now just over a year (May 7th) that we pulled out the Nasal gastric tube for the last time! I wished I'd realised that date because we should have had a huge celebration for that... a whole year of no tube.

Today we've been doing some yard work, we finished off with a campfire, the kids loved it.. but were wishing we'd have had some marshmallows to toast. Kaity loved sitting around the fire, telling stories.

Kaity is missing her little friend Joel, he's moved back to Perth. She also had her old school photo out from Rockingham and went through most of the kids names, she misses them also and would like to visit them.

Kaity's weight is picking back up again, so I'm relieved about that, and her eating is getting back on track, although she still likes to be fed... that's time consuming.

Love Colleen

---

Saturday, May 28, 2005 8:45pm

I've been reading through Kaitlyn's history, wow, we've come a long way. I realised that it's now just over a year (May 7th) that we pulled out the Nasal gastric tube for the last time! I wished I'd realised that date because we should have had a huge celebration for that... a whole year of no tube.

Today we've been doing some yard work, we finished off with a campfire, the kids loved it.. but were wishing we'd have had some marshmallows to toast. Kaity loved sitting around the fire, telling stories.

Kaity is missing her little friend Joel, he's moved back to Perth. She also had her old school photo out from Rockingham and went through most of the kids names, she misses them also and would like to visit them.

Kaity's weight is picking back up again, so I'm relieved about that, and her eating is getting back on track, although she still likes to be fed... that's time consuming.

Love Colleen

---

Friday, May 27, 2005 7:50pm

Kaity is feeling better, she enjoyed two days of Kindy this week, and loved having her little friend Gabby over to play after school yesterday.

She has however lost weight... lately she has insisted on being fed, I'm not quite sure what that's about yet. Hopefully just attitude and laziness!! I can handle that.

Sunday we shall be driving down to look at the pony, the girls are really excited about this, we have a bit of work to do in the yard yet but we'll get there. Kaity took a photo of "Possum" into Kindy for news, she's so excited, and is looking forward to brushing her and feeding her carrots and marshmallows, I hope Possy likes both.

I've had Kaity's guestbook and history archived so it should load a bit quicker now.

Don't forget to order your NB Hope Bracelet, and if you feel like sending one my way feel free, I don't have a credit card or facilities to purchase overseas.. hehe.



Click here to Order your bracelet now!





HELPING FIGHT CHILDHOOD CANCER!
Will Sing 4 A Cure
A MUSIC TOUR TO HELP FIGHT AND TREAT CHILDHOOD CANCERS
Paul Black Music!



Founded by Paul Black, singer/songwriter and father of a child currently being treated for the rare Neuroblastoma at Duke University, the Will Sing 4 A Cure program provides gifts and assistance to children hospitalized with this terrible disease. Paul is dedicated to this programs success. It is a way for him to give back to those who saved his son, and to continue to support families that are facing the same trials that his family struggled
with, and continues to endure.



The first show began on January 7, 2005 and it is anticipated that Paul will perform at least 100 shows in malls, movie theaters, festivals, restaurants, clubs, and community events for the year. He has also performed at local Relay For Life festivities in North and South Carolina.

100f all proceeds from live performances, merchandise sales, CD and online download sales go to providing items for the children, research for the prevention and cure of childhood cancers, the Make-A-Wish Foundation and local church and community organizations.

Paul's efforts have been featured on several North and South Carolina television news programs as well as many newspapers, and he has the support of the American Cancer Society, DUMC and the Make-A-Wish program.

Paul is scheduling shows across the Southeastern U.S. for 2005 and 2006, and needs your help. If you know of any venues in the Carolinas, Virginia, Tennessee and Georgia that may be interested in hosting a show, please let us know. Also, we would like you to become part of the Will Sing 4 A Cure family by joining our mailing list. Simply log on and visit www.PaulBlackMusic.com and sign up.

On our website you will be able to access information about Paul, his son Nicholas, the tour and tour dates. In addition, there is Will Sing 4 A Cure merchandise for sale and music downloads.

If you would like to be a part of our growing community, visit www.PaulBlackMusic.com and sign up today!

Thank you for taking time to read this, and we hope to see you at a show soon. Please come up to Paul and say Hi!

---

Wednesday, May 25, 2005 9:34 PM CDT

Today I received an email from our little NB friend Sami's family. Sami is an absolute doll, I thought I would pass this along for anyone in the NJ area.


"...when LIFE gives you lemons, just make lemonade." This was Alex Scott's
motto. She has raised almost $2 million and donated all the money for pediatric
cancer research. She knew first-hand the need for a cure for childhood cancer.
Two days before her first birthday she was diagnosed with neuroblastoma, an
aggressive cancer of the sympathetic nervous system. At the age of four, Alex
decided to do something to make that cure more likely. Her idea was simple: she
would hold a lemonade stand and donate the money to her hospital to "help kids
get better."

Just like Alex, our daughter Samantha Gray was diagnosed with Stage IV
Neuroblastoma just after her first birthday. She endured 18 months of intense
therapy including chemotherapy, surgery, two stem cell transplants, radiation
and six months of oral accutane. Learn more about Sami at:
www.caringbridge.org/nj/samigray


Sami is blessed with remission from this terrible disease. Sadly Alex passed
away in August of last year at the age of 8. Sami, her family and friends will
honor Alex's dream and to continue to raise money for Pediatric Cancer
Research. Before Alex passed away, she set the goal for 2005 to be 1,000
lemonade stands and $5 million dollars.

Please join us Saturday, June 11 between 9-3 at Gray's Family Foto as we honor
Alex Scott's wish to raise money for Pedetric Cancer Research. There will be
more than lemonade to experience.

I realize that most of you are not local and will not be able to attend our event. My goal with this note is to promote Alex's Lemonade Stand fundraiser. Please tell your friends. They don't have to come to Hillsborough, NJ on June 11th. They can donate online or hold their own stand. To learn more about the event go to www.alexslemonade.com

Anyone local that wants to help with our event like entertain the kids or post flyers
can contact me at 908-704-8057 or by reply email.

Thanks,
Sandy Gray
908-704-8057

---

Tuesday, May 24, 2005 6:30pm

Kaity had Kindy today.

Then after Kindy we looked around on the net for Pony stuff.

We've recently found the perfect pony, even though we have yet to see her in the flesh we are very excited that she sounds perfect for us.

Kaity is of course in love with "Possy". Who is a grey (Kaity calls her white) 10hh Welsh pony. Her owner Katie has agreed to sell little Possy as she has outgrown her.

Rikki is excited also as she will be able to take Kaity and Possy to shows eventually, they've discussed what colour tack will suit and what colour outfits they will wear... so cute.

Of course Kaity decided on rainbow colours straight away but I'm not sure that would be possible in the show ring.

Kaity looks like her ear infection has not cleared so we may have to go back to the doctor... bummer.

Well.. must run.. things to do
Love Colleen

---

Sunday, May 22, 2005 4:33pm

Big day today, Brad played footy against another town this morning, they won.

Then I drove to pick Rikki up from a leadership course at El Caballo.

Then got home and Kaity was home from her dad's.

We spent some time on the motor bike Poppy bought home for the kids. Thanks to an old friend Ken who sent a couple of toys down for the kids from Kalgoorlie.

Kaity is starting to get the hang of the bike, and is starting to accelerate all on her own.. scary. Keeping the bike up herself will be a major trick though. She has no fear and keeps yelling let's go this way.

Here she is waiting to take off.

---

Sunday, May 22, 2005 9:04am

Just a quick update.

Kaity is at her dad's house so it's a little quiet here.

I went out Friday night with the girls, had a blast. Cherie thanks for a great night.

Here's a link for the new Neuroblastoma Awareness Bracelets, order these quick as they are the wrong colour and will be changed for the next round orders, these ones could become collectors items.. hehe.

Order NB Hope Bracelets

---

Wednesday, May 18th, 2005 1:14am

I LOVE normal every day problems.
Kaity has an ear infection. I'd been getting a bit concerned last night, she ended up in more pain and started to complain of pain everywhere.. scary thought. I know she only just had scans, but knowing what I know about NB... it could come back so fast even so close to being scanned. But... we are blessed.. Kaity has an ear infection.

Tuesday, May 17, 2005 10:49pm
Hello everyone.

Kaity is battling with a cold, and is tonight complaining of her ear hurting, I shall take her to a doctor in the morning, I'm sure it's just from her cold.

So, here's the latest. I've had someone call MSKCC in New York to find out some information on how to get a second opinion from them. Please don't be concerned, there's nothing physically going on with Kaity to worry about, I simply want to know I've given her the best chance of survival. If this left over needs to come out, I wan't to know and I wan't it out.

MSKCC - Memorial Sloan Kettering are the leading Neuroblastoma specialists and deal with more NB kids than anyone.

I am hoping on achieving a mail review from them, maybe wishful thinking.. but who knows. Thankyou Debbie for your help so far.

I enjoyed some time at kindy this morning, although I did feel a bit out of my depth, it's been a while. I was able to watch Kaity for a bit interacting with her class mates, of course she was with the rowdy boys playing smash everything together on the mat. During song and dance time Kaity didn't join in, I came to learn that she never does. I wonder if she ever will. Kaity seems to do things as she wishes.

So that's it for tonight.
Love Colleen

---

Monday, May 16, 2005 4:04pm

---

Friday, May 13, 2005 4:00pm

I've had a few chats with other NB parents, and at this stage. I'm considering getting a second opinion on Kaity's scans. At this stage I don't know much about getting this done, I am still looking into it. If anyone has more details let me know.

OK.. another thing.. I really have never asked much of Kaity's supporters.. have I?

Theres this little princess.. she's called Madelyn , I've followed her story for a while, she was very close to losing her life in November. Her stem cell transplant was unsuccessful and the doctors were looking for a bone marrow match for her.. but cannot find a close enough match. I was wondering if you would consider registering for the bone marrow registry.

For Aussie donors click here


Please everyone look into it.. you could be saving a child's life. I'm going to look into it next week, that's a promise to Madelyn, I know my bone marrow may never be needed and I may never be a match, but at least I am going to try, and if I convince just one person to register .. I will be happy, but happier if I can convince everyone who signs into Kaity's page.

---

Thursday, May 12, 2005 4:20pm

We got up early yesterday and got organised, well tried to, for our trip to Perth. We left here at 8:30 am at the same time the kids went off to school.

We arrived in Perth after a pretty uneventful trip, Dawn met us in the clinic. We sat and waited for what seemed like an eternity. Finally we were called in and to my relief the doctor said pretty much straight away, her scans look great. Phew, that out of the way we discussed other issues, like gross motor skills, which are severely lacking with the princess. The hospital are also looking at the teacher's aide thing to see if they can get that moving along quicker.

So it's all good news for Kaity at the moment, but with the small amount still showing up it means we have to go back in another 3 months. Normally right about now we would have gone to 6 monthly visits, but in her situation we cannot.

Blood counts and everything looks normal, it was also suggested Kaity can go back to normal immunisation, she doesn't have to go back and have everything done all over but can continue as normal.

So we left clinic pretty happy all in all. We decided to have lunch in Booragoon and I did some mother's day shopping with some help from Kaity and Dawn. We picked out a locket and chain. So I now have a new chain and locket thanks to my kiddies.. hehe. I will have to find some pics of them to put inside. On the front it has MUM and on the back it says - Your love shines eternally.

We managed to do some other shopping and went and picked Tash up from school, much to Kaity's delight.

We then made our way home, we probably left it a little bit too late and we witnessed a kangaroo getting knocked over, which made me very nervous on the road, it was getting dark quick and my night eyes are terrible.. mental note.. get out of Perth by 3pm.

Well... that shall be about it for today.
Thankyou ALL for your continued support, prayers, and love. We could not do it without our friends here.
Love Colleen


CT Findings - The previously noted calcified lesions with adjacent soft tissue attenuation area in the retroperitoneal/para-aortic region have remained essentially unchanged. No new hepatic lesion or para-renal mass is identified.

The pancreas, spleen and the kidneys are of normal appearance. Gall bladder is unremarkable. Lung bases are clear.

MIBG conclusion- There is persisting low grade MIBG uptake adjacent to the medial aspect of the right lobe of the liver, corresponding to the area of calcification seen on CT imaging. The appearance remaing in keeping with either ganglioneuroma or low grade/low volume neuroblastoma which has not progressed since previous imaging. No abnormalities are otherwise noted on whole body imaging.

---

Wednesday, May 11, 2005 6:53pm

STABLE STABLE STABLE!!!!!

More later I've just got in, my babies have been home waiting for dinner.

xo

---

Tuesday, May 10, 2005 2:13 AM CDT

Kaitlyn would not eat dinner last night and breakfast this morning. She went to kindy and slept for the first time ever for two hours at kindy.

I got my mother's day present from her today.
Here's a part of it.

---

Monday, May 9, 2005 6:02pm

Kaity has been on the go all day today, she's done dishes, helped with washing clothes, baked a cake, licked the bowl, pretty much everything but picking up her own messes.

Two more sleeps before we get up early and head down to Perth for results. Don't worry everyone here will be the first to know what I find out, as soon as I get home that is. I'm thinking... that since we haven't had any phone calls that at least she is more than likely stable. I mean.. wouldn't we get a phone call saying something doesn't look right if something was not right???? Ok well maybe I have too much time to think about things.

We've looked at one pony so far, the kids are quite excited about the idea. Although they would really like a motor bike also, they have been driving my car around for the past few weeks, considering it's my only mode of transport I guess this is a little risky, but they are very careful, and the fences here are mostly wire. Last year Rikki drove their buggy through her dads fence. The neighbours were not pleased at all. Knowing Rikki she probably passed a window and was too busy looking at herself in it.. heheh.

Well, I shall leave it there tonight.
Love to all
Colleen

---

Sunday, May 8, 2005 8:06pm

Kaity is home!!! The kids have missed her as they haven't seen her in a week. She soon made herself known and was running around screaming with the kids chasing her. That seems to be a favourite which she usually plays with Poppy, but he's on holiday so the kids had to do.

Here's a pic of Kaity with her cousins Kayla and Amy, thanks Bev, don't they look so cute!

---

Thursday, May 5, 2005 10:05pm

There's a gorgeous little girl named May who could do with a visit and a prayer or four. She has been battling thyroid cancer and is now on a vent in a serious condition.


If there's anyone who needs some graphics done for their childs website please give me a yell, I'm more than happy to help out.

I can give you a list of sites I've helped with, to give you ideas of whats possible.

I'd love to see all Neuroblastoma kids with personalised pages.
Love Colleen

---

Thursday, May 5, 2005 7:30am

We came home to find out that a gorgeous little NB battler has gone to heaven.
Please visit Jake's
page and offer support and prayers to his family.




Monday morning Kaitlyn woke up vomiting, we got to hospital and she was feeling better but started again with having to drink the oral contrast. Dr Michaela thought it could be the iodine drops and gave Kaity some ondansetron which always worked a treat with chemo nausea and did settle her tummy down.

Dr Michaela also did Kaity's IV drip and it went straight in and worked perfectly. The CT scan was also a breeze. Kaity of course insisted her two care bears go first and then climbed up for her turn.

Monday night we had visitors at the Ronald McDonald house, a beautiful group of ladies came in to cook for the whole house, and most were dressed as clowns, another lady did face painting, and Kaity played with a little girl who she is still talking about.

Tuesday was just a nuclear injection of DYE for the MIBG scan on Wednesday. So we managed to get in some paying bills time and a bit of shopping.

Wednesday was the MIBG scan, and Kaity went home with her dad for the weekend.

So.. no results until next Wednesday when we travel back down.

Love to all
Colleen

PS New song - Tide is high

Chorus goes

The tide is high but I'm holding on
I'm gonna be your number one
I'm not the kind of girl who gives up just like that
Oh, no
..............................
Kaity is number one, and is holding on.

---

Monday, May 2, 2005 6:09am

Not a good start to our trip to the city. Kaity has woken up and vomited, I'm thinking its the Lugol's iodine which made her sick. Not real sure.
She's gone back to sleep and we have to leave in an hour... oh boy!

Sunday, May 1, 2005 9:20pm



For the next 3 days we will be flat out busy.

I'm nervous I am forgetting some appointments, but once I get to hospital it will all go smoothly I am sure.

Tomorrow Kaity has first up, special bloods for which they will place an IV in her arm to draw bloods, then we go to orthopaedic surgeon for a follow up appointment regarding her hips and walking habits, which were a worry before diagnosis, which most likely had to do with the disease in her hips which we were unaware of. Then we go down for her CT scan. Which she has to drink a heap of contrast before hand. So you see tomorrow will be very busy.

We will book into the Ronald McDonald house which Kaity is looking forward to.

I've packed most of Kaity's stuff just need to do mine first thing in the morning, before we leave, which will be around 7am... OH BOY!!!!!

Tuesday will be a quieter day but we have made plans to see cousin Thomas, Kaity is very excited about that. We still have hospital stuff to do in the morning so we shall try and visit in the afternoon.

Wednesday will be a day of sedation for missy. She has the big MIBG scan on Wednesday.

Well....
I don't know if I will update whilst away, I may remember the laptop in the morning, or I may not. Depends how busy I get, and how crazy the house is. The older kids are not looking forward to bubby girl going to Perth, they always fret and worry over what may or may not be happening.

Love to all
Colleen

---

Saturday, April 30, 2005 6:45 AM CDT

This morning we got up early for the beginning of Rikki's netball season.

After lunch we decided to head off to the tractor pull, Kaity was in awe, and loved the motor bikes, and loved the noise. She also loved the food and was eating most of the time, and devoured a hot dog.

Tomorrow Footy starts. This time I will be hiding until an umpire is found. Umpiring Netball is one thing, but footy too?

Love to all
Colleen

---

Friday, April 28, 2005 8:00am

Sweet little Jessica H
has become an angel. Neuroblastoma has taken 4 children to heaven in the recent weeks.


We need to do some serious shopping, the kids start footy and netball this weekend and Brad has once again outgrown his boots and Rikki needs a netball skirt. Both boys need hair cuts also. So it will be a busy day.

This is Kaity yesterday on her way to school.

---

Thursday, April 28, 2005 6:23pm

Kaity has enjoyed yet another day at kindy. I spoke with another mum who stayed on kindy duty today and she said Kaity just gets on with her thing and even told news. I'm so proud and Kaity really is blossoming right now.

She even helps set the table of an evening now and likes to offer to do small jobs.

Of course she is still a messy litte girl and you can pretty much follow the "Kaity trail" almost like following a tornado, but we wouldn't have it any other way.

Kaity has asked for a Pony, I'm going to look into seeing if there are any pony clubs around here. Just so she can learn first and see how she goes. Of course her first pony would only be a small one, but I have looked in the papers and the only problem I can foresee is getting it home without a horse float.

Well that's it for now.
Love to all
Colleen

---

Wednesday, April 27, 2005 3:49pm

Alexia has become an angel. Another Neuroblastoma Angel in heaven.

Mason is also close to entering heaven.

Please send your prayers to these families.

---

Tuesday, April 26, 2005 7:49pm

School holidays are over and the kids were happy to get back to school this morning, although Kaitlyn was in go slow mode all morning. We finally did get there.

I found hair lackies which are harder for her to pull out of her hair so she actually came out of class this afternoon with her hair in tact.

I've made all my phone calls today to make sure our accomodation at the Ronald McDonald house will be available and forms are organised for travel expenses next week.

Tonight Kaity has eaten really well, most of her dinner, along with her broccoli which she normally fusses over. Then she decided to have yoghurt for sweets and crumpets with peanut butter afterwards. Her weight is fantastic she weighs 18.6kg tonight.

Her wardrobe is however looking very sad, she has grown out of absolutely everything. It's amazing how well she is growing with all the chemo and radiation she has had I was expecting slow growth.

Well that's it for tonight.
Love to all
Colleen

---

Monday, April 25, 2005 10:28pm

I hope you all had a wonderful ANZAC day.

Rikki was to read a poem at our town ceremonies today so we all spruced up and went down for the march. Mum and Rikki marched in honour of my mum's brother Vince. He was killed in Vietnam.

Kaitlyn doesn't take too kindly to sunlight and instantly refused to walk, as she cannot see where she is going. I found her sunnies and she climbed into the pram and went to sleep for the whole ceremony. Which is pretty normal for Kaity, after all the treatment she went through she can fall asleep pretty much when and where she wants.

As I was walking out after the ceremonies, a lady basically stopped me and asked if my little girl was alright she looked very pale. Now.. normally... maybe this wouldn't have bothered me. But with my moods... oh boy.. I was very upset. Just as I was thinking how wonderful she looks, and you all must agree.. yesterday's pics were just great. But she still stands out in a crowd as not looking quite right. I gratefully nodded to the lady and mentioned she was diagnosed with cancer a while back, and left it at that.

After that, my kids dragged me down to the local pub for lunch, yes aren't they just bad influences. Rikki said she deserved a treat for reading in front of the whole town. Kaity just likes to dine out, so she was totally impressed. Kaity "woke" up and enjoyed the rest of the day.

7 more Sleeps until we go to Perth for 3 days of scans.

Love Colleen

---

Sunday, April 24, 2005 6:08pm

Kaitlyn has had the best time this weekend with her cousin Thomas. I'm so touched by how close Thomas and Kaitlyn are, considering their age difference and the fact they are opposite genders. Mind you they are trouble together.

Kaity also had my brother Troy hyped up this weekend, or is that the other way around. The house was "alive" all weekend, and very busy.

I will be posting pics as soon as Tracy sends them through.

Kaity is really well, and looking healthy.

It's now just one week until scans. Here comes the self imposed stress and worse moods. Worse still will be the week waiting for results.

Love to all
Colleen

I LOVE MY COUSIN THOMAS!


I'M CHEEKY!


ALL THE GANG!


ME AND MUMMY!

---

Saturday, April 23, 2005 10:14am

Taken this morning while we were waiting for Kaitlyn to come home.

---

Friday, April 22, 2005 12:40pm

Yet again, Neuroblastoma has taken another angel to heaven.

Please offer support and prayer's to Jack's family.



Kaity is due home tomorrow at 1pm. It's been very strange without her here.

The new song playing is the song a young Dr Rahman sang to Kaity one day during a stay on the ward during treatment. Every time I hear this song I think of Dr Rahman and ward 3B. "Angels brought her here, my miracle!" Lyrics below!

It's now less than 2 weeks until our next round of scans, my mood is beginning to change, yes.. I admit to being moody. I went with Jenny (Josiah's mummy) to visit with Kaleisha's family last Wednesday. It was really nice to see Jenny, Allie and little Mikayla. I could have brought Mikayla home, she is the sweetest little munchkin. So much like her big Angel sister Kaleisha.

I've also kept myself busy helping others with their caringbridge pages. Don't forget any requests email me at
dunnomuch@westnet.com.au

Love Colleen


Lyrics to current music "Angels brought me here"

Its been a long and winding journey, but I'm finally here tonight, picking up the pieces and walking back in to the light, into the sunset of the glory, where my heart and future lie, there's nothing like that feeling when I look into your eyes.

My dreams came true, when I found you, I found you, my miracle.

If you, could see, my angel, sure the answer to my prayer, and if you could feel, the tenderness I feel, you would know, it would be clear, that angels brought me here.

Standing here before you feels like I've been born again, every breath is your love, every heartbeat speaks your name.

My dreams came true, right here in front of you, I found you, my miracle.

If you, could see, what I see, sure the answer to my prayer, and if you could feel the tenderness I feel,you would know it would be clear that angels brought me here.

---

Tuesday, April 19, 2005 4:58pm

Neuroblastoma has taken yet another child from our earth.

Please visit Tyler's webpage and offer support to his family.



In the last couple of days I've been keeping busy with helping other parents with their webpages, it's been such fun and I cannot thank these parents enough for allowing me to "play" with some graphics for their children and angels.

As it turned out I got all the pages finished just before my computer died, so tomorrow I will have to have it looked at, I think its a power supply problem, if so I can fix that myself, so its not major drama, I just don't like doing without my computer for very long.

Kaitlyn is away at her daddy's house for the second week of school holiday's. It's very quiet without her here. She will be back on the weekend and her cousin Thomas and family will be coming to stay also.

Love to all
Colleen

---

Sunday, April 17, 2005 4:02pm

Neuroblastoma has taken yet another beautiful child to heaven.

Please offer your prayers and support to Trevor's family.

---

Monday, April 11, 2005 3:50pm

The new music on Kaity's site was sparked by an old long time friend (school friend) whom I hadn't heard from in a long while (too long) signing Kaity's guestbook.

Thanks Jase!

The copy of the midi isn't that crash hot but you get the general feel for the song.

Kaity - "Our reason"

---

Sunday, April 10, 2005 8:42pm

Firstly I want to direct you to a little girls page named Jessica, she's oh so cute and unfortunately has relapsed quite severely. So please visit with little Jessica.

Next...

Kaitlyn is ok, but really not herself either, she does have a slight runny nose, so I assume she has the remnants of a cold. Her energy is up and down, and her eating is following suit. But, when she is feeling rowdy, she is rowdy.

She likes to get out of the bath and streak naked through the house, it kind of reminds me of my little brother years ago. Her little butt is real chubby with lots of cellulite. Just tonight she decided instead of running through the house naked she would go out on the balcony and run from side to side. Hilarious!!!! All the time she is doing this she draws attention to herself with a scream.

I do have concerns of Kaitlyn's eyes, she will not go outside without sunnies on. Her outside time is limited due to her sensitivity to the sun. This afternoon she enjoyed a small amount of time on the front lawn with big sister and the dog. She walked around picking roses from the rose garden, and trying to convince the dog to smell each one.

So, it's school holidays for the next two weeks, Kaitlyn will probably spend the weekend at her dad's and then stay on for the week, I believe she has a party on Saturday for her cousin Kayla's birthday. I'm hoping the time away from kindy and sick kids will give her the chance to recuperate and get over the sniffles.

I've also requested at kindy that Kaity does not drink out of the shared water fountain. After hearing from one parent of how many sick kids there were last week I became paranoid about her using the fountain with her weak immune system.

Well that's it for tonight.
Love to all
Colleen




Kaitlyn was recently the Tag Artist Who Care child of the week. She received several very special tags. If you are interested in the same special treatment, please email Kristy at
tagartistswhocare@gmail.com
Thank you Kristy. We Love our Tags.

---

Saturday, April 9, 2005 6:26pm

Another sweet boy has earned his wings and flown to heaven.

Please visit Elijah's page and offer mum Jonel some support.

---

Friday, April 8, 2005 8:13pm

Today Kaity received a parcel from a lady in the USA. In it was the most adorable life like baby doll. Kaity is in awe of her baby. She has spent most of the afternoon taking the doll around everywhere, and making sure everyone had cuddles with Baby. Thankyou so much Anne, our new Baby is just what we needed.

Rikki helped run an ANZAC ceremony at school today, she did a fantastic job and looked such a treat. I will add her pic to Kaity's pic page, the link is above.

Tomorrow Rikki is off to a weekend away, something to do with Young Leaders for the Wheatbelt.. sounds like a weekend full of meetings, I am sure she will enjoy it.

Love Colleen

Having trouble with the pic page, so I've put them below.

---

Thursday April 7, 2005 11:16am

Sorry I have not updated sooner.

We have had Natasha here staying so Kaitlyn is in her element. Tash is her little mini mum and would do anything for Kaity.

Yesterday Tash, Kaity and I went to see Robot's at the movies. Kaity enjoyed it for the first half but it soon got over her head and she got a little bored. She did enjoy a box full of popcorn though.

Today she is at Kindy, she seems to be tiring easily and needs to be carried a lot. Hoping its just the effects of a virus.

Her scan dates are May 2nd, 3rd and 4th.

Love Colleen

---

Tuesday, April 5, 2005 9:23pm

I received this, thought I would share.

Introducing Will Sing 4 A Cure - A Music tour to help fight and treat Childhood Cancers! Visit www.PaulBlackMusic.com! Founded by Paul Black, father of a child being treated for Neuroblastoma at Duke University, the Will Sing 4 A Cure program provides gifts and assistance to children hospitalized with this terrible disease. Paul is dedicated to this programs success. It is a way for him to give back to those who saved his son, and to continue to support families that are facing the same trials that his family struggled with, and continues to endure. The first show began on January 7, 2005 and it is anticipated that Paul will perform at least 100 shows in malls, movie theaters, festivals and community events. He is also slated to perform at local Relay For Life festivities in North and South Carolina. 100% of all proceeds from live performances, merchandise sales, CD and online download sales go to providing items for the children, research for the prevention and cure of childhood cancers, the Make-A-Wish Foundation and local church and community organizations. Paul's efforts have been featured on several North and South Carolina television news programs as well as many newspapers, and he has the support of the American Cancer Society, DUMC and the Make-A-Wish program. Paul is scheduling shows across the Southeastern U.S. for 2005 and 2006, and needs your help. If you know of any venues in the Carolinas, Virginia, Tennessee and Georgia that may be interested in hosting a show, please let us know. Also, we would like you to become part of the Will Sing 4 A Cure family by joining our mailing list. Simply visit www.PaulBlackMusic.com and sign up. On our website you will be able to access information about Paul, his son Nicholas, the tour and tour dates. In addition, there is Will Sing 4 A Cure merchandise for sale and music downloads. YOU WILL RECEIVE THIS EMAIL ONLY ONE TIME, so if you would like to be a part of our growing community, visit www.PaulBlackMusic.com and sign up today! Thank you for taking time to read this, and we hope to see you at a show soon. Please come up to Paul and say Hi!

---

Friday, April 1, 2005 3:13pm

I've just heard of yet another two NB Angel's. Please visit and offer support to Angel Joey and Angel Amanda .

Some other's that aren't doing so well and could do with a note of support are
Elijah K , and Alexia .



Here's a little picture that was sent from our beautiful little friends in Georgia USA. Wheeler and Kilby drew this gorgeous rainbow for our little Kaitlyn and then sent us the photo. Aren't they just adorable. Hopefully one day we get to meet little Wheeler, Kilby and their parents. JoBeth has been a wonderful supportive friend to me, we just have to meet one day, she's like the sister I've never had and in our house they are considered our american family.


We Love you Wheeler and Kilby. Thankyou for your picture.

---

Thursday, March 31, 2005 4:04pm

I did not end up having much sleep last night, firstly a mozzie which was flying around my ear, had me up half the night. Then Kaity vomiting had me up the rest.

Kaity has woken feeling ok. She ate brekky and bounced around most of the morning. Although she looked very pale and tired.

Kaity did not attend Kindy as I wasn't sure if she had gastro or some type of virus. Instead she has gone with her dad for a long weekend. I've just now finished cleaning her room, which was clean yesterday but somehow cyclone Kaity flashed through.

Travis had a filling today in one of his teeth and Brad and Rikki have the all clear on their teeth.

Kaity is looking forward to cousin Thomas's birthday party on Sunday. She has given me strict instructions of what to go and buy for his present.

Let's hope missy is feeling 100% by then.

Love Colleen

---

Thursday, March 31, 2005 3:16am

It's been a while since I've been up this early.

Kaitlyn has just woke being sick. Now I know this is probably some virus, gastro etc, but I can't help but have horrible memories, which start before diagnosis.

One of our first symptoms that something was not right with Kaity in the beginning was vomiting every now and then. I remember getting a number of phone calls whilst I was working to come pick Kaity up because she had vomited.

The second memory is all the vomiting Kaity did whilst in treatment, and I'm sure this is the memory that came flooding back to her, as she yelled "I need my bucket". The same bucket which has sat under her bed from the time she was diagnosed. It's never moved, always been sitting there in case. Of course it was used a lot during her time of treatment, but it's been a while since used.

So right about now, the paranoia fights to creep in. If this was one of the other kids, I'd have no problem in rolling over and going back to sleep. But somehow with a simple vomit from Kaity I won't be sleeping for the rest of the night.

Love to all
Colleen

---

Tuesday, March 29, 2005 10:39pm

Just a quick note -

I got myself a second hand version of Paint Shop Pro, and I've been playing with it, hence the new background.

I know... It's nothing flash but it's my first attempt.

This CD doesn't have instructions so I will be all self taught.

I know in my mind what I want but trying to work it all out and put it together is a bit harder.

---

Saturday, March 26, 2005 3:47pm

Kaity has had a great day yesterday and today with her mini mum Natasha. Dawn, Tash and Geoffery came to stay overnight and the kids have just had such a great time. They all get along nice.

Friday morning Kaity woke up searching the house for easter eggs. Only a little early, she didn't manage to find any. So she will be excited to find out tonight the bunny will come.

Here's Kaity with some froggie friends, we suggested frogs legs for dinner and she decided to put her little buddies in her play microwave.

Happy Easter
Love Colleen

---

Thursday, March 24, 2005 4:03 AM CST

I've added two new links on Kaity's links page.
One is a little girl named Hannah , she's about to start the exact same treatment that Kaity has finished. The other is Olivia who is fairly new to treatment also.
Please offer these families some support as they begin this journey with the monster we call Neuroblastoma



It was easter bonnet parade time today, Kaity was not co-operating and DID NOT put the bonnet on.

Mrs Walker did get a pic of me with the bonnet and Kaity sitting next to me... YAY!! NOT!!!

It's been so hot the last few days, I'm hoping for some nice cool weather in the next few days, we have Dawn, Tash and Geoffery coming to stay tomorrow night, can't wait as we haven't spent quality time with them in ages.

Love Colleen

---

Wednesday, March 23, 2005 7:46pm

When I picked Kaity up from Kindy Tuesday I was asked if I would mind Kaity having an aide, now I have to admit this has crossed my mind a lot and I never really knew if she would be entitled to it. Anyway... Kaity's teacher is now looking into it, which I am a little excited about.

I would call Kaity a challenge, I can imagine her coming ahead in leaps and bounds with an aide.

We also got chatting to another mum who has a boy in Kaity's class, so today we went to visit Joel at his house, his mum Sheree is very nice, and Kaity ran amock with Joel and his little friends. In fact she was chasing them, with no chance of catching them as she isn't very nimble on her feet, but they were ever so gentle with her. She even borrowed some video's off Joel and said he was welcome to come and borrow from her, very cute.

On Tuesday Kaity's teacher called to say she isn't using her right arm, I had realised this before sending her to school and thought it would be forgotten by the end of the day, but she still isn't using the arm. I've learnt to not panic over such things anymore, and I am positive she will be using it soon. I do wonder why she does these things, a small sore etc and that arm/leg is not used again.

Tomorrow is easter bonnet parade, I wonder if missy will wear her bonnet, I'm betting she doesn't, but who knows, maybe the teachers will work wonders with her.

Love Colleen

---

Sunday, March 20, 2005 8:18pm

You will notice that I've removed all the links from Kaity's page, I've heard on the grapevine that Caringbridge are cutting back on allowing links to other Caringbridge pages, due to privacy etc. I haven't actually had an email myself but thought I would go along with it because they are threatening archiving pages which don't comply. That would mean our whole journal of our Neuroblastoma fight.

Kaity is doing ok, her foot has finally mended and she is trying to get out of the habit of hobbling.

Tonight we made an easter bonnet for the parade at kindy on Thursday, we whipped it together in a couple of minutes from a second hand hat and some fake flowers and a couple of fluffy chickens. If I must say so I think we did a great job, but Kaity won't even put it on her head.. maybe the teachers will convince her once all her friends have hats too.

The kids have received some easter eggs already, Thanks Aunty Tracy, Uncle Troy, Thomas and Bryce. Also the older kids dad Neil and his partner Liz, Kaity was devouring eggs all the way home in the car, with Rikki telling me "It's ok mum, she needs some fat".

Wow, I can't believe easter is here again, this time last year Kaity wasn't really interested in chocolate because of treatment, in fact we ended up throwing away some of her eggs when we moved this last October.

Love to all
Colleen

---

Saturday, March 19, 2005 4:47pm

Kaitlyn has been bruising so easy, which was a concern, so I rang the hospital and they asked for me to take Kaity to the local doctor to get her blood counts done. This wasn't as easy as it sounds, the doctor wasn't able to get near enough blood to do the test, so we waited until Friday to go to the children's hospital to have counts done.

Long of the short, Kaity's counts have all risen except for her white blood which has fallen a fair amount, along with her neutrophils. Meaning, she is more likely to catch anything going around at the moment along with her body already fighting some type of infection.

She did have some sort of cold/virus so I'm trusting the oncologists and believing theres nothing to worry about.

Love Colleen

---

Wednesday, March 16, 2005 1:22pm

Well....

Firstly sorry for not updating the website sooner.

Family camp with camp quality was fantastic, a well needed break away. Kaity loved the idea of "camping", although it wasn't close to that. We had an old mill cottage, which was in a bit of a need of an upgrade, but with it being budget accomodation who could ask for more. Getting used to the outside dunny was a hoot, the kids were horrified at first and I must admit when Kaity cried out in the middle of the night each night I was cursing the history of the whole place.

We were totally spoilt by church groups who had kindly made cakes and slices for morning's and afternoon tea's. Lunch on Saturday was spent at King Tree Winery along with some wine tasting which is usually enough to send me over the top. Lunch was delicious, so was the wine.

The kids were each given gnomes to paint, unfortunately Brad missed out as there wasn't enough to go around, it's a shame because he was so looking forward to the whole thing. Sunday morning we made our way out to a place on the side of the road in the Ferguson Valley called "Gnomesville" where there are thousands of gnomes living. Gnomes from all over the world have been left in this beautiful serene little place with a running brook and wonderful scenery. Kaity enjoyed the whole atmosphere of Gnomesville, but with her ability to live in fantasy world I guess that's no surprise.

We enjoyed a warm camp fire, under the watchful eye of the local FESA fire chief. The kids toasted marshmallows and damper, and an old bush guy told some bush stories and another sang some ditties. It was relaxing and Kaity enjoyed running around with her torch which were given to the kids the first day. She made a friend, one of the other mothers, and basically did her own thing most of the night.

We made our way home Sunday after lunch, feeling spoilt but tired from the lack of sleep on crappy beds. Not to mention the kangaroos who liked to scratch around on the porches at night.

Kaity enjoyed the fact she could feed Kangaroos at will, and that they were there jumping around the whole weekend.

The trip home was tiring, the kids were hyper, and the road long. Rikki was navigating and tried to send us the long way home, via Wagin who had an expo on that day, she thought it might have broken up the trip, I caught onto her little plot and thankfully in time to make the correct turns to come the shortest way home.

Camp Quality is one of the most kindest groups we've come across. The kids had never been on holiday in their lifetime, now they've been away twice and enjoyed both trips. Thankfully they were all well behaved and I received comments on how wonderful they are.

Love Colleen

Rikki's (left), Kaity's (middle) and Travis's (right) gnomes



The camp quality sign made for the release of our gnomes



Kaity looking through gnomesville



Just a small part of gnomesville

---

Thursday, March 10, 2005 5:28pm

Yesterday I got an email from Camp Quality, they had 3 families pull out of family camp and were offering the positions to the first 3 families to contact them.

So... we are going on camp this weekend. The kids are quite excited as they remember our last family camp to Busselton. It was enjoyable. This time we are going to Wellington Dam, near Collie.

Kaity went to Kindy today, she is still enjoying it, and actually walked home without asking to be carried today.. YAY!!!

Love Colleen

---

Wednesday, March 9, 2005 8:11pm

Kaitlyn's behaviour in the past week has been somewhat stressful. I don't know if it's just her cheeky age or whether she's really testing boundaries. She's turning TV's off when people are watching them, if the lights are on she will turn them off, if they are off she will turn them on. She is throwing toys over the floor deliberately without playing with them, and she insists on being spoon fed.

She is still limping around, because of a sore that was on the bottom of her foot. At least I've been able to get the bandaid off.

Tonight I weighed her and she weighs 18kg exactly, which is great but when she refuses to walk sometimes I can't really carry her around easily.

This afternoon she found an old video of Rikki's from when Rikki was just a toddler. It's "My little Ponies" and she loves them, I can see this is going to be her newest fad. She has already watched the movie 4 times.

So, I'm thinking it's time to get tough on a Princess. It's not like I've been that soft on her, it's more to the point that she's been such a great little kid with no major behaviour problems up until recently.

Love to all
Colleen

---

Tuesday, March 8, 2005 1:07pm

Kaity has been so happy to go to kindy lately, I'm very impressed. Obviously her teacher's are doing something pretty wonderful.

She is nearly over her cold now, just a small amount of the sniffles left.

I recently added the hug counter above and wow, look how many people are busy hugging the Princess. Thankyou all for your continued prayers for Kaitlyn's good health.

If theres anyone with a caringbridge page that needs a little help with adding things to it, please don't hesitate to ask for help, I don't mind... honestly!!

Love Colleen

Kaitlyn's art from today, the teacher has written the words for her, notice the rainbow coloured water, Kaitlyn certainly loves everything to be rainbow coloured.

---

Saturday, March 5, 2005 8:19m

Today I took the kids down to Pixie Foto's to have their portrait taken.
So in two weeks look out for a new picture of my darlings.
Mind you, Kaitlyn wasn't totally co-operative.
So who knows what it will turn out like.

I've added music to the page, the song playing at the moment is one of Kaitlyn's most favourites. Sing a rainbow!!!

Love Colleen

---

Friday, March 4, 2005 4:32pm

Caringbridge families are trying to get Oprah’s producers to do a show about childhood cancer. Maybe if we can get more people emailing them, they might do it. It would be great to get more Neuroblastoma awareness. So here’s the link - Oprah




Kaity still has a cold, and sleep at night isn't that great. But she is still pretty active during the day. In the past when she was sick she would not eat and would just lay down all day. So fingers crossed this cold will be over before we know it.

Love Colleen

---

Thursday, March 3, 2005 10:22am

Jennifer Lopez has dedicated her new CD to a Neuroblastoma Angel named Paige . Paige was also an extra in the movie Dragonfly. Visit this link to see a Clip of Jennifer Lopez speaking about Paige.


Kaity isn't at school today, we had a really bad night, she is congested. With a bad cough and snotty nose.

I'm so bummed because she has been well for so long.

---

Wednesday, March 2, 2005 10:10am

I had news today that a boy named Jay isn't doing too well. Jay has NB and has fought for nearly 4 years. Please visit his site to offer comfort and support and prayers.


Yesterday Kaity enjoyed her first full day of kindy. She said she had a little sleep in the afternoon but I'm not sure she actually did, I know they lay down on cushions with blanky's but I doubt very much that my little princess slept.

Last night she had a very uncomfortable night, I'm not sure exactly what was wrong but I think it's something to do with not being able to breathe properly. Her sinus's sound congested slightly and I think it was bothering her. So we had a totally horrible night. I asked her if anything was hurting and she said no every time. This morning she did a big sneeze which cleaned out her sinus's a fair bit.

Let's hope tonight is much better.
Love Colleen

---

Tuesday, February 29, 2005 9:01am

Chris B is now an angel. Please visit his site and offer support to his parents. Chris was definately a NB warrior after fighting for many years.


Kaitlyn has her first FULL day at kindy today. I didn't explain to her that today would be different. I'm hoping that won't backfire and I'm hoping she doesn't come home mad with me. She has been going to school with no problem at all. This morning she was excited that her big sister Rikki walked her to class. She didn't want to hold mummy's hand.
I shall let you know how she goes.
Love Colleen

---

Saturday, February 26, 2005 4:27pm

Today I purchased a new set of electronic scales. My old set broke when I was trying to replace the battery, anyway I had to have some and today weighed Kaity at 17.8 kg.

Kaity is happy to have her little cousin Thomas staying for the weekend.

They have been busy running amuck and will continue to do so tomorrow I am sure.

Love Colleen

---

Thursday, February 24, 2005 7:42pm

Kaitlyn was happy to go off to Kindy this morning.

She has a sore foot from treading on something sharp so she is hobbling around everywhere.

Her eating seems to be slowing down somewhat which is a little concerning.

Love Colleen

---

Tuesday, February 22, 2005 10.42am

Kaity has gone off to kindy this morning, after a battle to get her dressed and ready. She asked me to do one puzzle with her before I left the classroom, I was chatting to another mum and when I looked back the puzzle was already finished and she had her arms outstretched for a cuddle and kiss.

Today is jumper weather, it's almost crazy with the heat we've been having. Kaity and her daddy bought a new school jumper and school shoes on the weekend with the spending money I sent down for Kaity. On Thursday I will try and get some photo's since I've not really taken any of her going off to Kindy.

Love Colleen

---

Sunday, February 20, 2005 12:17pm

The kids have gone off for the weekend to their dad's in Rockingham. It's been very quiet here... almost spooky quiet.

So I've had an ok weekend, not really doing too much, listening to music, reading etc. But it has been nice to listen to what I want to listen to.. at the volume I like.

Hope you are all enjoying your weekend.
Love Colleen

I saw this on Antonio's page and it's exactly what we learn as Cancer Parents.

Kaitlyn You have Taught Me!

You have taught me patience
to rejoice in small gains which others take for granted.
You have taught me tolerance
to accept that your perspective is different and deserves respect.
You have taught me courage
to fight for you when no one else will.
You have taught me endurance
to go on when I feel I can't any more.
You have taught me humility
to accept when I can't make things better but can only be here for you.
You have taught me to love
at a deeper level than I ever thought possible.

---

Thursday, February 17, 2005 10.01am

Kaity is indeed back to normal,I'm thinking with our 42C temperatures she was just off colour and hot and bothered.

In any case she went to Kindy this morning, ate brekky first, and agreed to leave her hair elastics in for the school day. Her hair is so messy at the moment, it's curly and has a mind of it's own. She in fact reminds me a lot of when Rikki-Lea was her age, I think maybe they will end up looking similar, or even like sisters.

Rikki had her first public appearance this morning as head girl, she looked a million dollars in her school blazer and tie. She was nervous but did her speaking very well.

Brad reminds me of myself, following in the footsteps of a perfect sibling who happens to do well at most things. He is a quiet boy who gets lost in the system, but that didn't stop one teacher this week calling home to let me know he had been causing a small amount of grief. Upon questioning all of Brad's teachers there doesn't seem to be any problem with any of the others. Brad did say this one particular teacher maybe doesn't like him. If he is anything like I was he will hold it in until it get's too much and then he will most likely explode.

Travis has enjoyed two weeks of swimming lessons, which in itself is amazing as he has always had an extreme dislike for water and swimming. He has attempted stage 1 at swimming numerous times (about 5 times) and never passed this stage, so hopefully he will have passed this year.

The weather today has relented, and we have a coolish change, which is nice but very confusing.

Love Colleen

---

Wednesday, February 16, 2005 11:38am

Kaity ended up with a fever last night, nurofen soon brought her temperature down and she wanted to play late at night.

She has woken without a temp but still isn't eating.

I am sure it's just a virus of some sort and in a couple of days she will be non stop again.

Love Colleen

---

Tuesday, February 15, 2005 5:10pm

Joshua
has gained his wings, please visit his site to offer comfort and support.



Kaity didn't want to get out of bed this morning and is acting very strange, I think she's coming down with something. She hasn't eaten much today and isn't very active. She did go to Kindy eventually.

Love Colleen

---

Monday, February 14, 2005 9:32am

Little Stanton has gained his wings, please visit his page and offer support to the family.



Saturday we made our way to Rockingham for little Bryce's birthday party, we were fashionably late of course. Bryce is growing so fast and Thomas was the life of the party. Kaitlyn just adores Thomas it's so nice. She picked Bryce's present and wanted Thomas to have one too, we agreed we would wait until Thomas's birthday before we bought him a care bear too... oh yeah, anyone expecting a present from Kaity, don't think you will get anything other than a care bear... heheh.

Saturday night we met Phil and Casey at Cannington for dinner and then we went ten pin bowling. Kaity shared a lane with Brad and Travis and won the first round. She had an absolute ball and she had a look of amazement in her eyes for the first 15 minutes.

Hope you all have a wonderful Valentine's Day.
Love Colleen

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Friday, February 11, 2005 12:43pm

Kaity is enjoying kindy a lot, she was in fact the last child to leave the class room yesterday, I was indeed wondering if she would come out.

Now as promised, here are the conclusion reports from Kaity's scans.

CT CONCLUSION-
No significant change of the mesenteric mass, and slightly decreased size of the superior aspect of the mass compared to the previous study from 11/10/04

MIBG CONCLUSION-
There is a persistant focus of moderate increased uptake adjacent to the medial aspect of the right lobe of the liver, at the level of teh calcified mass noted on the recent CT. The appearances are essentialy similar to those noted on the previous MIBG scan dated 16/6/04. The appearances are in keeping with residual viable MIBG-avid tissue in this location, and the differential diagnosis would include a small area of residual neuroblastoma or maturation to benign ganglioneuroma.

Blood results -
White cells 5.9 (normal range 5.0 - 17.0)
Haemoglobin 127 (normal range 110 - 145)
Platelets 232 (normal range 150 - 400)
Neutrophils 1.7 (normal range 1.5 - 8.5)

Urine - normal. No NB markers were found.

So....
Kaity is considered Stable, which is fantastic news in cancer world, we were allowed to leave and they will do scans again in 3 months time.

Love Colleen

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Wednesday, February 9, 2005 8:02pm

Just a quick update....

Kaitlyn is STABLE still!!!!

More details tomorrow.

Love Colleen

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Monday, February 7, 2005 11:57 am

Please visit little Stanton , the family needs prayers.


Kaitlyn has declared another pyjama day today. So we're just chilling around the house. Although I need to get into some housework.. soon.

Only two sleeps to go until we get good news or bad news. How can a child be putting on so much weight and not get good results, a child who runs and plays A LOT!!! The house is testament to how much Kaitlyn plays. So I am quietly confident. Ssshhhhh!

Yesterday it was nice to pick up the kids from their dad's and get them all in the car together for the 2 hour drive home, they have great singing voices and sang most of the way home, it's one of my favourite feelings listening to them sing together with Kaity's little voice chiming in every now and then, and every time she says something they all giggle.

Tomorrow Kaity has kindy, tomorrow she will stay for lunch for the first time ever. I'm still trying to work out what to put in her sandwich normally for lunch she ALWAYS has tomato soup. We've joked that maybe tomato soup is the miracle cure.

Love to all
Colleen

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Thursday, February 3, 2005 7:54pm

Kaity woke up this morning and kept insisting she wasn't going to school. I had an appointment to discuss her issues with the principal so nanny walked her over to the kindy class. I met with the new principal and made it back home before mum did. Kaity had her doing puzzles. I picked Kaity up at 11:30 and watched her through the window where she seemed happy enough in class. She came out and Mr's Edwards the teachers assistant asked her if she had fun, to which she replied "nope". She was then asked if she was coming back next week "nope".

So the principal wants Kaity to migrate into her proper year group at some stage this year, but agreed that Kaity's health and well being was the most important, but he believe's girls in later years need to be with girls their own age, to which I commented Kaity might not be just like girls her own age considering the chemo and radiation she has had. He agreed to let things be for now with her staying in Kindy and to watch the situation in future. The principal is very nice and was not aware of Kaity's situation.

The other 3 kids are very happy at school currently, so.. here's for an amazing 2005!!

Love Colleen

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Wednesday, February 2, 2005 9:42pm

NEWS FLASH - No don't get excited no scan results yet, but I did an update and forgot to mention that Kaitlyn now weighs.... wait for it.... 17.5kg !!!!!! You will all remember struggling to get over 16, well now we want 18!!!!



Where to start....

Monday night we made our way to Phil's to stay so we were closer to the hospital for our early morning rise. We went to dinner at a chinese restaurant which I am sure Kaity enjoyed, she certainly enjoyed the fact that Phil had a high chair ordered for her care bear cousins. She enjoyed trying to eat with chop sticks, even though Mummy didn't attempt it for fear of looking hopeless, and she enjoyed ice cream for sweets.

Tuesday morning we rose early, Kaity had to be persuaded gently to get out of bed. We made it down to hospital at the correct time and Dr Michaela put Kaity's drip in which was successful first go and a perfect drip. I briefly discussed Night sweats and frequent urinating which has been occuring and urine was taken. We then made our way to Level 5 to have the injection of DYE. Normally it stings going in but Kaity didn't complain at all. The doctor kindly removed the drip and we were on our way.

This morning we were up early again to make our way to hospital.. again... after a fairly lengthy wait we were given chloryl to sedate Kaity, I tried to give it orally slowly, she did feel nauseous and had a vomit, we were called up for her scan and she quietly nodded off to sleep on the scan table. Her scan was done with little fuss and she woke up immediately afterwards. Since Phil had taken us they allowed us to leave, normally I would have to wait hours because I would be the only person in the car and would be driving.

Kaity insisted on a late lunch (Maccas of course) and enjoyed the play ground and also convinced Phil to go down the slippery slide a couple of times.

We eventually made our way home.

Tomorrow I have an appointment to discuss Kindy choices for Kaity with the principal, so far the teachers and I agree that Kindy will be the better option. So I'm allowed to drop Kaity off at kindy and make my way to the principals office.

We won't have scan results for another week, so please be patient and I will post ASAP!!!

Love Colleen

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Saturday, January 29, 2005 5:18pm

This morning I made my way to York to meet Hillary and nurse Cath who so kindly brought some iodine drops with them. How about that for extra service?

Today has been a bit warm and Kaity very early in the morning declared today a pyjama day... she does this every so often.

I've been able to make a deal with Kaity, she makes deals very well and usually sticks to them if we manage to shake on it. The deal is, if I got her a new school bag she would go to school... heheh... now this task wasn't as easy as it sounds, you know Kaity, she didn't want just any old school bag, only care bears would do. So after begging her father to search shops down in Perth to no avail, I ended up searching EBAY, but with limited time I was becoming quiet concerned. I did find two bags, one of which we settled on. After communicating with the seller, we were offered a choice of other bags and Kaity has chosen a nice pink Love-a-Lot bag. Thankyou Felicity for your kindness and help.

I've made my decision to send Kaity to Pre Primary, I hope she is ready. Pre Primary is full days. I'm not expecting Kaity to manage all week too quickly. But at least we will have each day to choose whether we attempt school or not. Class starts on Tuesday which is a bummer because she has injection (DYE) to have at hospital, I was hoping she could start on the same day as the rest of the class, so second day will have to do which is Thursday.

The kids have been very busy labelling school books and pencils. I for one am looking forward to school starting back on Monday.

Love Colleen

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Friday, January 28, 2005 1:21pm

Wednesday was Australia day, I hope you all enjoyed the celebrations!! We picked Rikki and Brad up at Hillary's and eventually made our way down to Perth. The kids were lucky enough to go with Jocelyn into corporate boxes and received food and drinks and show bags. Other not so fortunates were left waiting outside the gates watching people coming and going and catching glimpses of the rich people sipping wine. The fireworks were great, and afterwards Kaity managed to walk from the river to the middle of Perth back to the car... she was on a mission and was striding out well. Not far into her journey she discovered Perth is a very messy place after the skyworks. She was a bit confused and amazed at all the rubbish.

Yesterday I went looking for Kaity's iodine drops to begin before her MIBG, the iodine protects her thyroid from being damaged by the injection (DYE). I soon realised the iodine was used at her dad's last and is most likely still there, so with time running out before having to begin the drops I rang the hospital and amazingly spoke to Hillary, she's the receptionist on the ward, but she is so much more than just that too. She said she would chase a doctor down and then came back saying she would meet me in York with a bottle of drops tomorrow, as she was travelling there, I think someone was looking out for us.

This weekend will be a bit quiet as the kids prepare themselves for school Monday. Today I learnt that last year when I requested Kaity be kept in Kindy no one actually followed through with that, so now to get her to the kindy class I will have to meet with the Pre Primary teacher and then the new principal. Which would mean, Kaitlyn would not start Kindy on time with the rest of the class, so I'm leaning towards starting her at Pre Primary. Any opinions from anyone??

Tuesday we are off to hospital for an injection for her scan the following day.
Wish us luck
Love Colleen

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Tuesday, January 25, 2005 3:58pm

Today a parcel arrived. This parcel we thought had been lost, it was posted in November. It has come all the way from the USA... Moultrie in Georgia to be exact. I reckon angels live in Moultrie. Thankyou JoBeth, your parcel was obviously made with love. Kaity adored every single item, as did we all, and to top it off, right at the bottom of the parcel was a WALMART catalogue!! I've heard so much about Walmart, now I've seen a catalogue... heheh. Thankyou to Kilby and Wheeler, two little kids who think of Kaity a lot, we were blessed the day you found us on the net.

I'd love for JoBeth and her family to visit here, JoBeth you know you are welcome anytime, we have the guestroom ready!!!

Love Colleen

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Monday, January 24, 2005 5:28pm

Today our morning started at 5am. We left home at 6 am to make our way to Hillary's for the kids to go to camp quality camp. We made good time and arrived there at 8am, about half an hour earlier than I thought.

Gerry welcomed Rikki and Brad and they went off to the dorms. Travis wasn't old enough for this camp as they are doing some wonderful stuff like surf life saving and abseiling etc. So next time.

When I arrived back home, long day, Kaity was very disappointed that her kids weren't with me. She wanted me to go back to get them, she had spent a lovely day with Nanny and Poppy, and kept them on their toes. Even to the point where they thought an afternoon nap would be a good idea, but she kept dealing out kisses to keep nan and pop awake... heheh, and who can knock back Kaity kisses.

On Wednesday we shall make our way back to the big smoke to collect the kids. Kaity can't wait.

Love Colleen

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Sunday, January 23, 2005 7:55pm

Today Kaity has come home from her dad's and she is walking strange. It's almost like before she was diagnosed. She is throwing one foot out to the side and is heavy footed. Let's pray this is nothing!!!!

Her MIBG is due on Febuary 1st and 2nd.

Other than the walk she is happy.

Thankyou to Trish and Gary for the cabbage patch dolly for Kaity, it's a special bath dolly with her own shower ring. She love's it.

Love Colleen

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Thursday, January 20, 2005 7:50pm

Whitney has become an angel at the age of nine, after a battle with Neuroblastoma.
Angel Whitney




Happy first "Stem Cell Transplant" Anniversary Kaitlyn.

This morning began very early for me, I left home at 7am to make my way to Mandurah for Kaleisha's funeral.

Kaleisha's funeral was sweet and nice but very exhausting. If you saw hundreds of pink and white balloons floating in the sky today they were Kaleisha's. There were a few people from hospital, in particular Amy (Jess's mum), Michelle (Ebony's mum), Yvette (Kaitlyn's mum), Jo (Regan's mum) and Paige's parents and Wainey's dad. I was very happy to see Wainey's dad and we shared a huge hug. Not a day goes by that I don't think of Wainey, and I remember Kaity and Wainey holding hands walking to the hospital playroom, chalk and cheese but alike in many ways. I wish I had a photo of them together.

I stopped for lunch with Dawn and made my way home. Forgetting that the Brookton highway has been blocked from fires... arrrghhhh. Fate would have it that I got lost and ended up at a toyworld shop or as Kaity calls them Care Bear shop, so I went in and bought Kaity a care bear music box for an anniversary present.

Kaity loved it, once I finally got home.

If you missed yesterday's journal Kaity did some artwork with her fingers and toes, take a look.
Love Colleen


PS - Yvette, Thankyou for your support. xoxo

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Wednesday, January 19, 2005 11:11am

Tomorrow marks Kaitlyn's first anniversary of her second stem cell transplant. Wow, we've come so far, during transplant we were all extremely nervous not knowing the future, not knowing if we would even get through transplant. We did, and more!!

Tomorrow is also our dear little friend Kaleisha's funeral. Kaleisha's family have asked everyone to wear or bring pink, purple, or lilac. I shall go alone, the kids will not attend.

So tomorrow will be a mix of emotions. Sad that Kaleisha did not receive a miracle. Happy that Kaity is currently doing well, and has made the one year anniversary of transplant.

Our beautiful angel friend Jessica now has a website that her mummy has done for her. You can visit her at
Angel Jessica.

Love Colleen

Kaitlyn's favourite colour is pink, but she does enjoy the whole rainbow look.

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Tuesday, January 17, 2005 1:11pm

After dropping Kaity off at her Grandma and Poppy's house last Thursday after our hospital trip, we finally picked her up Yesterday before heading off to the zoo for the day. It was a very hot day yesterday, and after walking most of the zoo, with Kaity in and out of the wagon we hired to pull along, she finally discovered water fountain's and the possibilities of fun with them. So, we had to stop at every water fountain, whilst she squirted everyone, wetting herself more than anyone else. Thankfully it started to storm and the weather relented slightly. We made our way back to the ferry to cross the river back to the car. After which we headed to MacDonalds for dinner when Kaity asked if we could go to the movies again.. hehe... does she ever get tired??

I've been asked to include Kaitlyn's dad on my journal entries.. this is an impossibility. I do not know of anything that goes on between Kaity and her father, I drop Kaity off and pick her up, that's it. I never get reports from her father and Kaity is always illusive with details. For example I would never ask Kaity what she has done with her father, and Kaity is not the sort of child to give information freely without prying. I don't pry!! Kaitlyn's family are very secretive, I respect that and do not have interest in their everyday activities. I invited Kaity's father at the very beginning of her treatment to start his own website for his own personal experiences with Kaitlyn. This never came about.

This website began when I needed to keep overseas family informed of Kaitlyn's progress. It was also a source for other families following in our footsteps. Along with one day hopefully Kaity being able to look back and read and realise the long road she has travelled. We've made many friends along the way, JoBeth, Petra, Mia and many others that check in on Kaity daily. But please understand this website is my writings, it's based on my life with Kaity, along with her siblings. I've been honest and open and have shared many many private thoughts.

Thanks
Colleen

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Thursday, January 13, 2005 6:06 pm

Well.....

Our Princess has grown up!! Kaitlyn has had her first CT scan awake. What an amazing feat for a small girl who has always been put to sleep for scans. Of course Baby Hugs and Baby Tugs Care Bears were right there to help out.

Yesterday we made our way down for a special blood test to see how her immune system is going, amongst other more complicated stuff. The details elude me. We had not put emla on her arms so the drip was inserted without cream. Not much noise, amazing, even Carol the lady who helps out with painful and scary procedures mentioned we didn't have a cleansing of the sinus's (screaming). Kaity is proving to be a very brave 5 year old.

Her drip was bandaged and left in overnight to use in the morning. Kaity needed some retail therapy, so we made our way to Harbour Town to do some shopping, she found some nice nail polishes in great colours.

After a freshen up Phil came to pick us up to take us to dinner, of course Kaity's choice was McDonalds. We then went to see a movie and decided on the Incredibles. Kaity and Phil needed popcorn!! We ordered a super size. I noticed when the characters were "fighting" on screen, Kaity would hide her face and then start eating popcorn super fast, must have been an anxiety thing. She managed to chomp her way through half of a super size box.

We then headed back to the Ronald McDonald house, where we said goodnight to Phil and made our way to our room. Kaity was a champion and slept in her own bed there, considering it was a new place she did very well. It did bring back a lot of memories for me... The rooms obviously aren't very sound proof and one can hear other children crying out in pain and vomiting. Needless to say I laid awake for a fair amount of time last night. All the time thinking of how far we have travelled, and how amazing my baby is. I am very thankful for where we are at.

We arose early this morning to make our way to hospital, where Kaity had her CT scan done, after which the drip was removed from her arm. Whilst in the waiting room waiting for our turn to see the nurses Kaity found a book, it was a letterland book which they teach in school, to my amazement, Kaity knows all the names of the letterland characters, I'm not sure where she even learnt this.. KINDY MAYBE? I had no idea she had been learning letterland. Very impressed.

We were lucky enough to meet little Samuel, another NB child behind us in treatment. Samuel turned 5 a month after Kaity did. Samuel is about to start radiation.

Thankyou all for your support, as soon as I have results of any scans I will post, for now we wait for her MIBG which is scheduled for Febuary 1st and 2nd.

Love Colleen

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Tuesday, January 11, 2005 2:21pm

Kaitlyn's little friend Kaleisha passed away this morning. She had a scan a few days ago which revealed a lung full of tumour which was pressing on her heart. This morning at 5:30 am she was given some extra morphine and spent an hour telling her family how much she loved them. At 8:30 am Kaleisha took her last breath.

Kaleisha in the news last week


Kaleisha and Kaitlyn in September last year.

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Monday, January 10, 2005 9:23am

Griffin has become an angel after a long battle with Neuroblastoma.

Please also visit Dylan's site, they could do with all the help you are willing to give.


Kaity is doing well, she proclaimed she had a fun weekend, and she did. We had Santa leave a pile of presents under our tree Friday night. I am so glad he didn't mind coming a bit later this year. Kaity received the care bears she so desperately needed. Baby Hugs and Baby Tugs now sit with the million other care bears, along with Playful Heart Monkey, I think this one resembles Kaity the most, she really plays hard and all day, to the point she is the last to bed and the first to arise in the morning.

It's been great to introduce my new friend Phil to our little Kaitlyn, she has taken a liking to him and I believe she thinks she has him wrapped around her little finger. He did spend a big part of a day eating Kaitlyn's little concoctions made from her plastic microwave.
He even looked cute walking into McDonalds with two care bears in his arms... heheh.

Tomorrow we will see the local doctor here for forms to travel to Perth. Wednesday morning we will be off early for immune blood tests and audio tests. We shall stay down in Perth that night and make our way to the hospital very early Thursday morning for more blood tests and a CT scan. I am hoping to convince the doctors that Kaity might very well lay still for a CT with no sedation. If we have sedation we spend a good part of the day waiting for our "princess" to wake up.

Keep crossing fingers, praying, and raindancing for clear or stable scans.
Love Colleen

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Friday, January 7, 2005 4:34pm

I've recently been told I need to do an update. So here I am.

Not a real lot has happened, I've been busy organising the house in Rockingham to get it ready for tenants, so have spent a fair bit of time down there.

Kaity had a few days at her dad's house.

We received a parcel from Angel Kaleo and his family, Keanu, Kanoelani, Sandra and John. In it was the most precious care bear blanky. Kaity just adores it. Thankyou to a special family.

Our other special little friend Kaleisha has gone downhill in the last week. I spoke last night with mum Allie. Kaleisha is now on oxygen, but spent some time yesterday on a helicopter ride. She looked tired, but somehow radiant. What a gorgeous little 3yo she is. Kaity liked seeing her little friend on TV, and noticed she had two tubes.

Next week we have a CT scan booked, we have appointments to fill most of Wednesday and Thursday, so will stay down at the Ronald McDonald house for the night Wednesday. Pray for stable scans or even better, clear!!!!

My love to you all, and sincere apologies for not updating sooner.
Love Colleen

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