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Saturday, October 22, 2016 11:37 PM CDT
It's been a long time between updates. Kaitlyn is now 17 years old.
Not a lot has changed, shes still amazing, still happy, mostly healthy but with some long term effects from treatment. 
Saturday, November 15, 2014
Last night, Kaitlyn was able to attend her very first school ball. She literally had a ball! She's turning all teen on me.
She chose her own dress, shoes and jewellery, and a friend came and did her hair and a teeny bit of make up for her. She loved it!
Monday, August 4, 2014
Once again my eldest is moving away, interstate this time, so I wanted to capture them altogether as they are now, in case the opportunity is way too long before I am able to capture again.
It was a fun morning, done way too early for some (with hangovers) and very very cold. But they remained chirpy and cheeky and we got it done.
Thursday, May 29, 2014
Yesterday we were back at Endocrine for a regular appointment.
Things we learnt about Kaitlyn.
- Her bone age is at 13.6, which means she might not grow anymore, if anything another 2percent
- Her liver tests were raised, causing concern enough to book regular ultrasounds in future. (remember she has a liver full of lesions)
- Her thyroid antibodies were raised, which means her endocrine doctor expects an autoimmune disease to present itself in the future. Causing the thyroid also to be booked for regular ultrasounds.(remember she has a thyroid full of nodules)
- Now that growth is close to finalisation, she can have oestrogen patches instead of tablets.
- She's still perfectly gorgeous! and LOVES to op shop with her newly earnt money!
Thursday, May 15, 2014
For months I haven't been able to access Kaitlyn's page. A big thankyou to Caringbridge for being so helpful. They have now fixed an ongoing problem for a lot of people.
So, other than that there hasn't been a lot of new news on Kaitlyn. She has a part time 'work experience' job, which she says is hard work but loves it too!
She remains a gorgeous nature, who is extremely enjoyable to be around, despite being a teenager ;)
So updated photos, her grandma asked for some new shots, so Kaitlyn styled herself and we played.
Monday, October 7, 2013
Kaitlyn's 14th birthday recently passed in a busy whirlwind weekend. She had been busy at school camp during the week before. She maintains she probably won't bother going to school camp next year, she didn't enjoy it much at all, mainly due to not being able to participate.
She recently was fitted with a plate on her teeth, this is to widen her palate and to pull the front teeth back a bit. In three weeks we have noticed huge progress, and shes loving the results so far. These might not be so obvious to the average person, but she can now actually pull her bottom lip over her top lip with less struggle.
Surgery on her jaw was postponed again, and they called for braces on her teeth to only discover, she has short roots, most likely from chemo.
We're also awaiting a CT scan which was called for after she had an Ultrasound on her ovaries (she is in ovarian failure). Something has caused concern for a few people at the hospital and that scan will be done soon. I'm assuming its liver issues again and those lesions are still visible. I'm not alarmed.
A bone density scan recently shows low bone density, this is upsetting, and we will put her back on Vit D drops to help with this. I guess this could be a reason her hip broke so easily recently.
Her thyroid nodule is still monitored by ultrasound.
So, whilst there is still no cure for Neuroblastoma, the treatment Kaitlyn endured just keeps on giving back.
Sunday, July 14, 2013
We had a beautiful Sunday today.
Friday, June 21, 2013
Today, is Kaitlyn's 10 year anniversary, 10 years ago, she was dying, she was diagnosed with Neuroblastoma Stage iv, and started chemo very quickly, she lost the ability to talk, all toilet training went out the window, and she preferred to keep a flannel over her face than to face the world. During her times in the 'treatment room' she could be heard screaming down the halls, she became quite well known for that and her ability to kick and fight, requiring at least 2 nurses to hold her down.
We were told she would celebrate her 4th birthday, but no more were guaranteed after that. Her future looked pretty bleak. So for her to survive 10 years, we are so blessed, and thankful. We would never have known the beautiful, caring, sweet positive little girl today if she hadn't survived and kicked cancers butt.
Kaitlyn does have many late effect issues, and to top it off was told last week she will never run or jump again due to the risk of injury to her hips. She still has a thyroid nodule, she still has hearing loss, she still has intellectual disability, she still has ovarian failure and she is also due to have jaw surgery late this year, she still remains so positive.
We send our love and hope to all our friends still fighting, you can do it too!
We also never forget the children we met during our journey, so many beautiful little people and their mummies (and daddies). We saw children pass away on the ward, we saw their parents grieve and hurt, and we cried for them. Childhood cancer is savage, its taken too many little people. So despite our celebration today, we will also spend some time thinking of our friends. NEVER FORGOTTEN. xoxoxo
Saturday, March 16, 2013
So Kaitlyn has just returned home from a hospital stay which included surgery.
On Wednesday she had an xray appointment in the city because she had been complaining of pain in her left hip. We did the xray and left, whilst we were shopping I received a message on my mobile phone to return to the clinic immediately to pick up a report and to get to PMH (childrens hospital) urgently. UGH! They weren't aware she was a previous cancer patient, and the panic this message would cause to me.
I picked up the report, and a doctor explained as briefly as he could that she had a fracture, and we needed to see bone doctors urgently, that he had phoned ahead and downloaded the xray to the hospital.
At this stage I said something like... oh thank goodness. He thought I was crazy, and explained the urgency again. Haha.
So, Kaitlyn had surgery in both hips, they were pinned. Basically if you look at the xray I'm about to download, the ball shapes on top of the femoral bone, are supposed to look like perky ice cream cones, in her case, the ice cream had slipped down the sides of the cone. Ouch. They were surprised she was still walking, and had not had ANY pain relief. They didn't realise she's tough!
She's home now, resting with pain relief, and in a wheelchair. We go back to fracture clinic in a fortnight.
Friday, September 28, 2012
Last weekend we held Kaitlyn's birthday party. It was a huge success, and today she turned 13.
Yes, 13!!!! Kaitlyn is now a teenager.
Waiting for guests to arrive
The cake from Oma and Opa
The lolly buffet
Rainbow inside the cake, just as Kaitlyn requested.
Kaitlyn's uncle was the DJ for the night, and the kids partied!
The day after, eating her special ice cream cake.
Tuesday, August 21, 2012
Kaitlyn has had two appointments in the last week, her first being with Endocrine, who have now added her to the dicer1 research study. If Kaitlyn is found to have the dicer1 gene (1:100 chance) then her siblings will be required to be tested also, as their risk of cancer would be large.
Kaitlyn's second appointment this week was with Australian Hearing, and the findings were that her hearing has gotten worse in the high frequency ranges (thanks chemo) and she has an Auditory Processing disorder so she is being fitted with an FM system for school to help her get through the day. Her teacher will wear a microphone and transmit straight to Kaitlyn's headphones. Thankfully, her teacher has had previous experience with a child who used an FM system, so this is good.
Did I mention Kaitlyn has changed schools? She is now attending a school with a dedicated special needs unit. This is awesome! She does have to get up for school a lot earlier because she is required to catch a school bus, but she is coping well. Kaitlyn is mainstreamed but also spends time in the Ed support unit.
Planning is still underway for her Miracle 13th birthday coming up in September, can you say excited?? She can't wait!
It's so heartening to see visitors still coming to visit Kaitlyn's page, and we are reading the messages often. So to read that someone googled and Kaitlyn's page was the second hit, we're just amazed. We do hope we can bring hope to many other families beginning the Neuroblastoma journey. Please do sign the guestbook, we like to know who is reading :)
Friday, July 13, 2012
Wednesday, May 16, 2012
Well I was going to give Wordless Wednesday a go, but it's been a while so thought I'd give some sort of update.
Kaitlyn is wonderful, she is looking forward to turning 13 this year and is planning a big shindig at home. Let us know if you need an invite :)
She told us yesterday she would like to give her pocket money back to PMH, the hospital which saved her life. We thought it was a wonderful idea and agreed. This morning she took it one step further and went to school in her PJ's (She told me it was PJ day, and I didn't think to question this further). Oops, she was doing her own fundraiser for the hospital. She was sent home to get dressed. Funny girl.
She has a huge interest in Photography, I think she wants to be just like mum. So we're playing around, and she has my first DSLR to play with, she thinks she's a big girl now.
The little boys are growing so fast, with baby Lawson being Kaitlyn's favourite, she will often be found hovering over him just keeping him company, and is always asking to hold him. 
Tobin is becoming a useful tool to her, she can manipulate him into helping her with chores, she thinks this is awesome. Here he is wearing her footy jumper. She's such a beautiful sharing soul, as this is her special jumper she got from the Brisbane Lions many years ago on her Make a Wish trip. In 4 months time, he will be the same age she was when she got sick. The thought just blows me away.
Kaitlyn is however missing her big sister who is now residing in Bristol UK. Rikki-Lea did come home for Easter to meet her baby brother, it was a beautiful time, and we also got to meet her new 'beau' Jon. 
Monday, January 23, 2012
Our newest addition is here! Born 15th Jan at 9:29pm.
Kaitlyn is in love, and it's amazing to watch her maternal instincts kick in. She's NEVER enjoyed babies before, but is consistently begging to hold her new baby brother, or hovering over his bassinet.
Lawson Roy. 8lb1oz.
Thursday, December 16, 2011
Kaitlyn has now finished her year 5 studies at school.
Next year she will be in year 6 and already we've discovered who her teachers are and we're happy with who will next take charge of her learning.
She's been lucky to have had her previous teacher for a 3rd year, and there would never be a more dedicated teacher, so for that, we are thankful.
She is still far behind her peers in learning, but with her disabilities, that is to be expected.
Recently we visited genetics for a few results, unfortunately, most of which are still inconclusive due to her father not donating a sample of his blood to allow answers to Kaitlyns Chromosome abnormalites, which I've been told are located on Chromosome 8. As yet I have not received a full report in regards to that. However, my results have shown that there are definately no abnormalities in any area, and the geneticist concurs that my other children should all be healthy, and yes, they are!
Particular 'syndromes' connected to Chromosome 8 is a genetic thyroid syndrome, and another Cancer gene, without the further testing it's unsure if either affect Kaitlyn, however she rules it out for my other children because of my results, so that is a relief, and we just need to keep watching Kaitlyn for further issues and problems. Her geneticist is sure there is 'something' there which would add it all up in the end, but is stumped as to how to work it all out. She has passed Kaitlyn's file on to a research team to see if they are interested in doing further testing.
Kaitlyn has also visited the oral surgeon, but we are no closer to surgery.
Xmas is almost upon us, which brings us closer to the birth of our last little blessing in January. Very very exciting. It will be nice to have a newborn in the house again, and to watch the kids love on their new baby.
Merry Xmas to all our readers, and a wonderful New Year to you too.
Thursday, September 29, 2011
Yesterday, Kaitlyn turned 12 !!!
Imagine, that tiny little girl, aged 3, not expected to have many more birthdays after her 4th.
IS NOW 12!!!
Thursday, August 4, 2011
Yesterday Kaitlyn had an appointment with an endocrinologist.
Just before xmas, when she was scanned for her dental cyst, the technician told me that her thyroid was spotty. He actually thought the dental cyst was something else, and was bigger than the dentists first thought. Thankfully that was removed easily, but we didn't receive any follow up on the thyroid.
So when we saw a paed earlier this year, I asked for her to check exactly what the report said from that technician. She agreed that Kaitlyn needed to see an endocrinologist and set it up. However, that appointment was not until yesterday, a whole 6 months down the track, 8 months after the problems were first noted.
So yesterdays doctor was very upset that this hasn't been looked into before. She noted Kaitlyn's growth has not stopped but fallen, from the 25th percentile, down to the 3rd percentile. Her growth will now be monitored 3 monthly.
The endocrinologist will be setting up within the next week, a biopsy of the largest nodule in Kaitlyn's thyroid. She wanted it put through urgently as she believes its already been left long enough with no action.
June 21, 2011
8 WHOLE YEARS SINCE KAITLYN'S DIAGNOSIS.
Kaitlyn has now lived through her Neurblastoma Diagnosis for 8 years. What a miracle she is.
She is loving her Hippotherapy classes, which finish soon. She is determined to continue riding and will Ride for the Disabled closer to home, beginning next term. She plans on riding in the para olympics. It's lovely to see her dream and have goals.
We took a week off and went to Sydney last month. We even took a ride down to Canberra and were able to fit in a visit to watch our Prime Minister in action during question time. I thought Kaitlyn would show very little interest but she did enjoy it. We were busy our whole visit and tired by the time we hit our flight back home.
Kaitlyn is patiently awaiting a laptop to arrive at school. It's been specially ordered to help her keep up with school work. She's excited, and will be the only one in the school with a personal laptop.
Kaitlyn has been riding Possum more and more recently, now that her jaw has healed. Tobin is proving to be a natural cowboy with an extreme love of horses. So she's busy teaching him how to ride, and Possy is loving all the extra work.
July 2011.
We have had fantastic news in that we are expecting another baby. Our final addition to our family. Kaitlyn has already claimed the name of "Saskia" for this little sister (will not contemplate the thought of another brother). I wonder if she remembers her best friend, the play leader called Saskia at hospital?
We've also been going through the mediation process with Kaitlyn's father. Unfortunately he doesn't hold the same views and believes that Kaitlyn should not be attending Camp Quality (along with many other things to sort out) as she isn't 'sick'. We are hoping he comes around with his views, as Camp Quality has been one of the only places Kaitlyn can feel 'normal' with kids "Just like her". She loves Camp Quality, and luckily, she will always have a place in their programme.
Recently genetic micro array testing has shown deletions in some of Kaitlyn's chromosomes. Further testing is underway to see what all this means. But after some googling, it certainly explains her disabilities.
Checking the surf at Bondi
Hanging at Bondi
Saturday, May 21, 2011
Today Kaitlyn started Classes of Hippotherapy with Riding for the Disabled. In hopes to improve her core strength.
Kaitlyn was lucky enough to be chosen to ride Baron, a retired police horse who once belonged and was ridden by the Police Commissioner. Baron retired to the Riding for the disabled club 2 years ago.
At first she was hesitant, this horse is HUGE. But once she got on, she giggled for the rest of the class.
Before Class posing with "Rusty"
I can do the egg and spoon AND ride.
See how big Baron is?
TWO EGGS.
Are they SERIOUS?! Riding backwards!?
In other news, Kaitlyn will be receiving a laptop for her schoolwork. This will allow her more time to get her class work done as her handwriting is a major cause of concern and time distraction.
Wednesday, April 6, 2011
April Fools day has always been a favourite of Kaitlyn's. She usually just attempts to fool us and we pretend.
This year it was different. She was calculating, and cold in her Fooling.
We actually visited my parents, she sat on their lounge and started casual conversation with Nanna. Eventually she mentioned our dog is having puppy's. Well, mum believed it so readily, it was ever so convincing, then all of a sudden, Kaity jumps up and down yelling April Fool. Mum couldn't believe she had been fooled, and chased after Kaity to tickle her.
Not happy with that amount of fooling, she then applied the same lines to my dad when he came inside. I couldn't believe how casual she was being, it just isn't her normal nature. Dad of course fell for the same lines and his proud status of "Never been fooled before" was gone and buried. He even managed to throw the pillow he was holding at her when he realised what was happening.
At the end of the day she went with her dad to pick up her new glasses which were on order. Her eyes aren't working correctly together at close range, so she will need them for reading, writing, watching TV etc.
She picked her own frames and doesn't she look spectacular?
Tuesday, January 25, 2011
School starts back next week and we are delighted that Kaitlyn will have the same teacher this year. She will be in a straight year 5 class setting.
Over the holidays she has grown some sunflowers, she has wanted to grow them for a long while and she goes out daily to watch their progress.
She has also become quite a willing model, however, she requires payment if I want a particular shoot done, which is costing me a fair bit and not helping my new lens funds. She on the other hand is saving madly for a DSi, and is very close to the amount needed to get a second hand one.
Saturday, January 1, 2011
Happy New Year.
Kaitlyn is currently still away from home, on her access visit with her father.
She will be home in a few days.
In a few weeks we get the final results of her pathology on the removed cyst. We did get a phone call telling us that it was definately a dental cyst, which type was still unknown.
Before Xmas Kaity bought home a gastro bug from an access visit, most of us ended up with it, we were very worried we wouldn't be able to eat our xmas dinners, but we made it through.
Kaitlyn was amazing over xmas, during our xmas lunch, she cleared her throat, and gave a speech. Off her own back she told us that this xmas was the 'best ever' (also the first she has spent home in many years), and she thanked us all for different things. So grown up yet so cute.
The kids didn't get spoilt for xmas, its enough that we were together. My parents joined us and we ate very well, although no prawns as promised. Very long story, but I got hit by a car and we ended up with no prawns for xmas.
We wish you all a very Happy and wonderful 2011.
Monday, December 6, 2010
The surgeons explained to us before surgery that Kaitlyn’s CT and Ultrasound showed a solid tumour, it was with this in mind that they told us they would not remove it, but would only biopsy it.
Once they opened it up, it burst, they were very surprised and a little happier about that. They decided to remove it all.
However, the cyst has grown aggressively and she has lost two thirds of her jaw bone. Meaning, her jaw bone consists of only 1/3 of the bone it should, and the remainder of jaw bone is weak, and will be for 6 months at least. She also lost an adult tooth with the cyst and the one in front of it is damaged considerably. Since the cyst is aggressive they have said there is a great chance of it reoccurring. Therefore we feel the likely hood of jaw surgery happening is low and our desire for the jaw surgery has decreased somewhat, but will be willing to consider the possibility at a much later date.
She cannot eat anything hard (eg steak, chocolate, biscuits etc), will need to mouthwash 10 times a day, and cannot attend school or do any physical activities. A small knock in the next six months will break her jaw.
The biopsy they took will take 2 weeks to get results. She will also be seeing the dental dept again in two weeks (can’t recall exactly how long they said but need to make appointment) to follow up.
Bloods and Urine were requested by Oncology, but we didn't speak to anyone from there.
Saturday, December 4, 2010
It's time to call on all Kaitlyn's supporters. Yep that's you.
Please pray to whom ever happens to be your higher power.
Kaitlyn has a lump/cyst/lesion on her jaw. At first the dentist thought it may be a dental issue, however, after an Xray, CT and Ultrasound it appears something 'different' is occuring.
As yet we don't have answers, but we are aware that her thyroid is spotty and something else is happening in her neck but we were not given details.
She is due for surgery on Monday, when they will let us know if they are removing the jaw lump or doing a biopsy.
Sunday, September 19, 2010
Kaitlyn is fast approaching her 11th birthday with excitement.
It's been amazing to watch her mature this past year.
She has been to late effects clinic and checked over, she met with her surgeon who asked her if she would like surgery, she declined, so he will ask again in 6 months.
With nothing else to report, I will leave you with a picture.
Thursday, June 10, 2010
Kaitlyn is doing wonderfully, she has as yet had no colds when the rest of the house has, is loving her special education classes, and growing like weeds in size and personality.
She has an appointment for an Echocardiogram coming up in July and Genetics in August. I assume she will see Oncology Late effects clinic soon too.
Kaitlyn has become quite the little model lately, willing to pose for me with no problem, she even finds me "scenes".
This month marks the seven year anniversary of Kaitlyn's diagnosis. Isn't she just a miracle.
On a sad note, we did farewell a special little friend named Imogen. Imogen passed from Neuroblastoma and was our little hero. Her "Passing parade" was just lovely.
We think of you often Immie.
xoxoxoxoxo
Thursday, April 29, 2010
Two and a Half months it has taken to get a reply back from Disability Services. So I think since it took so long, it has to be good news that they have decided to accept Kaity as a client. We will be filling out MORE paperwork next week.
We attended a parent workshop for Protective Behaviours. Kaity is doing a 10 week course. We were horrified to learn some statistics, the main one being
82% of Intellectually disabled female children will be abused before the age of 12.
We consider protective behaviours very important for Kaitlyn, and we're busy backing up her learning here at home.
Tuesday, March 30, 2010
It seems Easter School holidays can't come quickly enough for Kaitlyn. They begin on Friday and she can't wait!
Today, after school, when her step dad picked her up he was told by her class teacher that it had been a bad day. It seems in science class today, Kaitlyn was finding the work extremely difficult and was sidetracked enough to write another students name on her desk. The little girl "dobbed" and Kaitlyn was left to sit alone.
But apparently before this episode, instead of writing the science experiment down on her paper, she was writing "I hate school"
After school we spoke a lot about "feelings" and how it's ok to write our feelings down, but its probably not a good idea to write them on our school work.
We then went down to the Post Office to look for a "feelings" diary. Kaitlyn found the perfect thing.
While we realise Kaitlyn is not going to be a scholar we'd also like her school encounters to be as stress free as possible, so we may be asking for some of her teachers aide time be dedicated to science class to keep her on track during class.
Thursday, March 25, 2010
Kaitlyn had a fashion show at school today and chose to dress in 20's costume.
Tuesday, February 9, 2010
Really overdue for an update on Kaitlyn, and had something typed right out only for the smallest member of the family to come along and delete it.
Kaitlyn went into year 4 at the beginning of February, she has been sent a blessing in Mrs Baxter as her teacher again this year. Very happy with that.
She has been happy, healthy and growing, more so outwards than upwards, which is ironic considering the amount of time we stressed over her lack of weight in the early days.
Kaitlyn met with 4 specialist doctors recently, who all concurred that she requires surgery this year to bring her lower jaw forward to match up with her upper jaw. When asked her opinion Kaitlyn was adamant she wasn't interested, but they had just discussed the surgery in front of her so I'm no surprised.
Her IQ testing was done late last year, it came back a lot worse than her 2006 results, hence her teacher aide time will double this year. She is intellectually disabled but I'm having a rough time getting Disability Services on board, they are a bit slow on the uptake it seems.
Well, I guess that's about it for now. Happy New year to everyone.
Friday, October 16, 2009
Finally, I have time to sit and write a bit more about our Kaitlyn.
As you know Kaitlyn turned 10 last month, when I think back to a certain day during treatment, she was receiving her stem cells back, and the head nurse (can't recall her title) came to me and asked how I felt, and did I wish to keep the bag that Kaitlyn's stem cells had been stored in. I replied that I was hopeful, and that we wouldn't be requiring that bag, we would look forward to the future and not be looking back on days like the one we were living. She looked at me strangely, and said to me "Well, I guess she could be the one out of ten to survive, I guess you need to keep positive." That comment had a profound effect on me that day, but thankfully I can look back and giggle at her. Wow, how lucky are we, our little girl was that ONE.
This month marks the anniversary of end of treatment. This month is 5 years since Kaitlyn has had any treatment of any kind. Another anniversary I never thought possible. Amazing.
This week we met a surgeon at PMH, he wishes to put Kaitlyn before a panel of specialist's for them to have a quick view. They will then go to a meeting, and discuss the options of aligning Kaitlyn's jaw. I was a tad disappointed when the surgeon asked Kaitlyn how she felt about it, he mentioned to her that he could "make her look better", her response was, "I look fine thankyou very much". Oh my poor baby girl, whilst we agree, she looks beautiful to us. The surgery will have other benefits too, and we are very wary as to how her teenage years will pan out socially. Let's face it, teenage girls can be nasty. Later that evening, our darling girl explained to us that "I was born with these teeth, and I can't help it if I look like Spongebob squarepants", LOVE HER!
Kaitlyn underwent NAPLAN testing along with the rest of her class, all Australian year 3 children did the same tests. Kaitlyn failed miserably in all areas except Spelling, to which she achieved the national level. Well done Super Girl. We are so proud. Learning is still her biggest challenge, and her peers have now noticed she has the challenge and tell her shes dumb :(
Her hearing has been tested again, and her loss remains stable, meaning she has high frequency loss, and will find it hard to hear in situations which are "busy" but should cope fine without aides.
We've been super busy, we fell pregnant again, but unfortunately I miscarried naturally between 10 - 11 weeks gestation, the day before Kaity's birthday. Kaitlyn was upset, and would like us to try again for another baby. For now, we'd like to relax and enjoy the beautiful children we already have, but have promised her we will discuss it next year.
The need for another baby is fueled by her love for Tobin. Kaitlyn is an amazing mini mum, she knows Tobin's routine, and he knows hers, including time to leave for school, which brings tears and upset. She gets wild kisses and cuddles from him, and he is just simply happy to be in the same room as her. He is crawling, starting to chatter and is the happiest most delightful baby ever.
I will leave it there, but just know that Kaity is wonderful, happy, and healthy. She is the light of our life and we are just so blessed to have her.
Thinking of all the Neuroblastoma children, especially our friend Imogen.
xo
Kaity blowing out her candles, note the candles arranged by herself.
Monday, September 28, 2009
Happy 10th Birthday Miracle Girl.
Neuroblastoma didn't stand a chance against you!
Love you to the moon and back.
Thursday, September 10, 2009
Today I will not post for our own sake. I will come back another time and do "our" update.
For now, I'd like you to "meet" a little girl named Imogen.
We met Imogen in person, along with her mum Fiona, dad Jason and her big brother Kody. The "Holmes Gang" are amazing. They light up the room when they walk in. They make a person feel so much better on the worst of worst days. I know this, because although I haven't spent a lot of time with them, I've spent some time with them and this is how it was. Fiona is what I'd describe the life of a party. I'm sure all the other parents on ward 3B probably agree.
Imogen has Neuroblastoma, Imogens Neuroblastoma has sadly relapsed for the second time. Imogen needs a miracle. Imogens cancer will now not respond to any chemo available in Australia.
In two weeks time, Imogens mum Fiona is due to give birth to Baby Holmes. I hate to think of how their lives are crushing right now. I hate that they have to go through this, right when they should be celebrating new life, in fact they should not have to go through this AT ALL.
Why am I telling you about Imogen? Because I'd like you to skip over to her page, let her know she isn't alone, that people all over the world are thinking of her, and praying for a miracle.
You can visit Immie's blog at
Imogen's Blog
Please visit them, they really are wonderful amazing people.
Sunday, July 26, 2009
I never did come back as promised to update.
So here I am.
Kaity is doing fantastic! She is healthy, growing, and happy.
In the last year and half she has had two great teachers who have helped her mature and learn more than I ever thought possible.
Kaity turns 10 soon. Simply a day I didn't dare dream about. A day I personally will enjoy to all extremes.
Wednesday, June 17, 2009
HAPPY 19th BIRTHDAY RIKKI-LEA
I'll be back for a more in depth update as you may be aware, this month marks the 6th year anniversary of Kaitlyn's diagnosis. Will update soon!
While you wait for that, please consider voting for a picture I've placed into a competition, in the hopes of Camp Quality winning some donated money.
Click here to vote
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Friday, May 8, 2009
It's been such a long while since updating on Kaitlyn.
She's been growing so fast that she has totally skipped a size in clothing. She eats as much as her brothers and is maturing beautifully.
Grade 3 is agreeing with her and she did a fantastic project on the Animal Kingdom, it was great fun helping her with it and she is a whiz on the computer when requiring research. She scored 100% for her first project. It has been amazing to watch her grow and mature, she's certainly not a baby anymore and her independence is strong. Although she does get stroppy if Pa is late to walk her to school, he works at the school and always comes back home to walk her over.
She's really enjoying having a baby brother, and bad luck for me that he is the first one that gets kisses after school. She will then insist on them watching some TV together for cuddle time. He loves being on big sister's lap, or simply in the same room as her and will always greet her with the biggest smile ever.
Kaity is also a great vegetable patch owner and worker. She's growing the biggest peas. We actually had our first home grown spinach, Kaity ate it with enthusiasm, gave Pa the thumbs up and said "Pa you grow the BEST spinach ever", when he walked out of the room and earshot, she did the pretend to vomit thing and said YUK! Such a character, but never willing to hurt anyone's feelings.
Friday, March 20, 2009 8:15 PM CDT
I received this and thought I'd share.
Yesterday the COG announced the early study results of ANBL0032. They have determined that the immunotherapy (experimental) arm of the study – a combination of ch14.18 antibody, cytokines (IL2 and GMCSF) and Accutane more effectively reduces the risk that neuroblastoma will grow back than treatment with Accutane alone. Furthermore they have determined that the immunotherapy, as specifically delivered on COG ANBL0032, increases the chance of survival after completion of therapy including stem cell transplantation when compared to treatment with cisRA alone. According to the statement they now expect that this immunotherapy may eventually become a standard part of high-risk neuroblastoma treatment after stem cell transplant.
More info and links are on the website at http://www.nbhope.org.
Tuesday, February 24, 2009 1:51 AM CST
Yesterday, after much practice with special moulds at home, and an upside down spoon (thanks Felicity), we visited the dentist and had REAL moulds taken! It did take 3 attempts for the bottom one, but WE DID IT!
Afterwards Kaitlyn had a play with her cousins, Sharyce and Carlin who have moved back to Australia to live. Kaitlyn and Sharyce LOVE playing with each other and are slightly alike in looks. Very cute!
Today, Kaitlyn brought home her Daily Writing book, and I thought I'd share this wonderful writing with you all.
It reads (because it didn't scan up too well)
"When I grow up I want to be a DR.
I want to take care of sick kids and I (will) work at PMH"
Friday, February 13, 2009
Kaitlyn has started a new year of school and is coping well in year 3. Of course she misses Mr's Baxter, but she is a brilliant teacher. Kaity is enjoying her homework this year and seems a little more organised. In fact she's coming along in leaps and bounds in regards to her personal care.
We've established a regular pocket money day and Kaity is responsible for cleaning her own room along with many other small chores. She is growing so fast and enjoys a challenge.
Her weight gain has been enormous, and she looks extremely healthy right now. We've changed our diets because of my diabetes and Kaity is thriving on the change.
Kaitlyn is becoming the regular little minnie mum when it comes to Tobin. So much so that he looks for her a lot and misses her when she's at school. She insists on doing a lot for him, especially bath time, and tonight I found her undressing him (she's not scared of poopy nappies) whilst he waited for me to finish pouring his bath, he was ready to get straight in once the water was done.
Swimming lessons were popular at the end of last term and school holidays she did another 5 days of lessons, and they start again next week, despite knowing she won't pass her level it's great that she's finally enjoying her time in the pool.
On a sombre note, I'd like to mention our fellow country men in Victoria. Last Saturday was a tragic day and the loss of over 180 lives was devastating. As a family we've discussed this a lot and send our love and thoughts to all involved. Well done to the firefighters who helped under terrible circumstances, even losing their own homes and families. There just are no words to express our sympathy.
If you would like to help the victims of the fires please visit
Red Cross to donate.
Kaitlyn and Tobin cuddling in her bed.
Edited to add-
Thank Felicity for reminding me of Kaitlyn's orthodontist visit. I'd forgotten I hadn't updated in quite a while.
We went to Kaity's visit and when the orthodontist placed the empty mould cases into her mouth she gagged and made noises. So the orthodontist decided very quickly that he cannot work with her until she gets used to it and is at least a year older.
So we've since been to our hospital dentist and they have also tried moulds, but received the same response, so they are going to see her often to try and get her used to things in her mouth.
The orthodontist has agreed she desperately needs a plate, so that is not the issue, it's just getting it in there.
Wednesday, January 7, 2009
Introducing Tobin Marty Sleer
Born 1:26 pm, January 4th.
Weighing 7lb 15oz
52 cm long
Tobin's birth was described as "Precipitated Labour". Apparently that has something to do with extremely fast!
Being so fast meant lots of pain, extreme pain!
When he was just showing, it became apparent the cord was wrapped tightly around his neck twice, causing severe restriction. I was asked to stop pushing (no easy feat) to enable the midwife to unwrap the cord.
He was born blue but fine!
We are all in love with our baby boy! He is perfect and placid. We've been blessed with another angel in our life.
Thursday, December 11, 2008 4:19 AM CST
School Disco time! Kaitlyn loves her xmas fairy outfit!
Tuesday, December 9, 2008
Last week Kaitlyn went to the hospital for root canals on her front teeth. What was supposed to be simple surgery ended up her having to stay overnight. In hindsight we realise it was because her surgery was late in the afternoon, and because the nurses wanted to go home her recovery was rushed, normally she is allowed to sleep it off and recover slowly. I will remember this next time, in 3 - 6 months she requires the rest of her root canals.
Yesterday she had to take the day off school as we had an afternoon appointment to see our baby on scan. Her and Jethro were so excited during the scan I had to "shhh" them because I couldn't hear the sonographer. As requested, here's pics of bubs.
Thursday, November 13, 2008
It's now been over 4 years since Kaitlyn had any treatment for her Neuroblastoma. I can't write enough how grateful I am of where our journey has taken us. As I read daily about children still in the struggle, of little ones losing their lives in such horrid circumstances, I just think of how lucky we truly are. I never stop thinking of Aussie children who touched my heart like Jessica, Kaleisha, Ebony, Kahlilla, Wainey, Lauryn, and little Kyah from New Zealand who will spread her wings anyday now and fly to heaven. Rest peacefully gorgeous girls.
Kaitlyn recently attended an Orthodontist appointment where she was told she'd get wonderful new appliances to help her lower jaw match up to her top jaw. In December she will have her first appointment to get that started. Her Pa has to get "savin da money" to cover the costs.
I haven't weighed Kaity lately, but the way this kid eats, I'm sure she weighs a tonne. She actually eats more than I do at dinner time now.
She constantly has us in fits of laughter, she is definately a great spirit to be around. One thing that I do feel so very torn about, is... she's growing up so quickly. Just last night she proclaimed that she's such a big girl now "nearly turning 10" that she could probably tuck herself into bed! Not in my life time "MISS nearly turning 10!" (keep in mind she only just turned 9 but insists she's nearly turning 10).
Her soft buddies continue to keep her company at school whilst she has a rough time of fitting in. She's noticing so much more now, and even noticed girls whispering and laughing at her. It makes me so sad for her, and I wonder if it was better her just being unaware.
She's also taking so much more of her learning in. Just yesterday her class walked to the local museum. She came home so excited that she'd been given "olden time money", and used an "olden time pen" and learnt how to wash "olden time clothes". She showed us her "Penny and half penny" and knew exactly what she was talking about. I am just thankful that the olden time was even before my time. Apparently it was such a wonderful experience and she even got to stop in at her teachers house to say hello to George the Black Labrador on the way home.
Kaity is so excited that her "Pa" will be working at her school from next week on, and just secretly, Pa is excited that he will get to see Kaity during the day also. Maybe they will both come home for lunch together.
She continues the count down for her baby sibling's arrival. I'm currently suffering from Gestational diabetes, and Kaity has been my saviour, helping me through my numerous finger pricks each day. I've so far managed to control the diabetes with diet, but my levels are rising slowly and I fully expect to be on insulin before bubs arrives, which I'm fine with, except that means delivering bubs in the city hospital in case bubs has difficulties at birth.
Kaity and Jethro have been so busy getting the nursery painted, actually Kaity supervised a lot and Jethro did all the work, but it was quality time spent together none the less and she certainly knows how to boss her Pa around to get the job done just right.
Thursday, October 23, 2008
Well, it's been a while since an update and I apoligise for that.
Kaitlyn turned 9, and is already planning a whole year ahead when she will turn 10. We had a picnic down the foreshore with family and friends, Kaity wasn't feeling "great" because she was suffering the last effects of a cold. But she was spoilt with a birthday cake from Dawn and many presents.
We've visited the dentist, Kaity took a fall at school a while back and slowly the tooth has been discolouring. Looks like a nerve has been damaged and she will be going under GA for a root canal. Her dentist wants her teeth nice and healthy for her upcoming Orthodontist appointment, and hopefully treatment to align her jaws.
Kaity is suffering socially at school. On a recent meeting with her Ronald McDonald Psych at school it was reported that her self esteem has dropped dramatically. Yes our little princess is the victim of bullying, but hardly ever complains to us. It must be so hard to be so different, she seems to take it in her stride and just looks forward to coming home. We go out of our way to make sure she knows she is beautiful, perfect, and important in the running of our household. Her home environment could not be more perfect and it was noted by her psych that we as parents should keep on doing what we've been doing as she has made huge improvements in her learning abilities. Although still not caught up to her peers. It was nice to be complimented on our parenting skills as she also showed NO SIGNS of ODD (oppositional defiance disorder).
Her teacher this year should also be complimented, she listens and is happy to accept Kaity as different but willing to teach Kaity in ways she requires. A blessing for sure.
Kaity's paediatrician would like us to find something to boost her confidence and self esteem, stating she needs to get involved with something she is good at. Unfortunately all sports are out of the question, as she spends only ever second weekend with us at home. I'm thinking maybe pony club after Sunshine is born. Will look into that further. Her physio would like to see her with her own excercise bike or tricycle (she doesn't like the unsteadiness of a normal bike), her leg muscles are extremely poor, which is expected from a child who has had the treatment she has.
Kaity's growing is something I've been surprised with, all that treatment should have stunted growth, and I guess in some respect it has, but she is quickly growing out of her wardrobe season by season. She isn't the biggest in her class, but doesn't look abnormal in height at all.
Baby Sunshine is coming along nicely, or as Kaity puts it "a big fatty boombah". Only 12 weeks to go today. We are hoping Kaity will be close by at the birth, possibly even there when Sunshine comes out. Dawn has offered to be Kaity's "support" person in case all that works out and it is possible. Remembering that the hospital is an hour from us and my labours last two hours. We're hoping for no roadside deliveries on this one and have been told to leave home as soon as contractions begin. 
Tash and Kaity, and the Bratz cake from Dawn!
Tash took Kaity on the pedal cars, doesn't she look like a 9yo going on 16yo!!!
Friday, 12th September 2008
Kaitlyn's class performed an assembly item last week, as usual Kaitlyn really didn't join in, but she was happy to dress up as a "Gymnast" as the assembly was all about the Olympics.
You can see how stubborn she can be, she just stood there whilst the other kids sang and did the actions.
Today she has a day off school, her tongue has been hurting for about 4 days now and this morning I looked under it to find she has a nasty looking ulcer underneath, we are off to the doctors to have it checked soon.
So she's had a relaxing day at Care-A-Lot, her favourite place in the world.
Rats RULE! Kaity loves her "Pretty Princess" and cuddling (squishing) her is fun.
Thursday, 21st August 2008
We had a trip to Busselton planned with camp quality for the past weekend. We were excited.
Friday afternoon we made our way to Busselton, despite Kaity having a cold. It was a great car trip down with much singing from Kaity and Jethro. When we arrived we were served Pizza and Kaity couldn't wait to get back to our chalet, so we did that and started settling for the night.
Unfortunately my belly wasn't going to allow us a quiet night, I began having terrible pains, which turned into what felt like slight contractions.
So after a few hours, I decided to ring Healthdirect where I was told to go straight to the hospital and I wasn't to drive myself. ARGH!
We had no choice but to wake Kaity, as the other kids had not travelled with us. We took a sleepy girl to the emergency dept. They thought I may have gall stones, so started tests, when they took my bloods, poor Kaity said "Be brave mummy, sunshine needs you to be strong, I know it hurts but it will be over soon as long as you don't move"
After my aches settled down, Jethro and Kaity made their way back to the chalet, but not before Kaity broke down in tears in the car park. My poor little love didn't want her baby sunshine to go to heaven like Chloe. Jethro did a great job settling her down and they arrived back in the morning in time for an ultrasound which showed Baby Sunshine is in perfect health, and they could not find anything wrong.
By the time I was released, Kaity was feeling dreadful with her cold, she didn't even want to go sit on the beach for a dig. We grabbed dinner from Camp Quality and went to bed early, only to pack up in the morning, we decided not to head out to the winery tour as we thought it a good idea to take the trip slowly home with many stops so that Sunshine didn't get all uncomfortable again.
We had a great trip home, although we had to keep dosing Kaity up on panadol, she just wasn't coping well with her cold. We stopped by to see friends, stopped in at an old home town of mine for lunch and visited the Serpentine Falls which are spectacular. Kaity enjoyed trying to catch Butterflies which were everywhere at the falls.
So that was our weekend, I must say that the Busselton Hospital is a great place to land if you need a hospital. They were nothing short of brilliant.
We were glad to get home though.
The stunning Serpentine Falls!
Friday, 8th August 2008
So, what happens when a step daddy takes kids and a dog down to the river for a walk.
First we check out the water from a distance. Keeping the feet dry.
Then, when we think no one is looking, one foot goes in whole. YAY, wet feet.
Eventually the step dad was game enough to bring said child home with extremely wet shoes. In his defence - she had fun.
Wednesday, 30th July 2008
We've had so much rain that the Avon River is overflowing, the river is just two blocks from our house, so we took a bush walk down there for a look.
We were lucky enough to spot a group of 4 kangaroos, who didn't really appreciate our visit and hopped away quickly with their small joey.
It's cold down here.
We love having such beauty right on our door step.
Sunday 27th July
Last Monday was the final day of school holidays. Kaitlyn decided we should all go to see "Kung Fu Panda" at the movies. So we all piled into the car and had lunch in Mundaring followed by the movies.
I thought I was going to have to watch the movie with Kaity on my knee for most of it, every time a scary part came on she would bound into my lap in the pretense of not being able to see.
Afterwards she insisted on a share pack of Maltesers, so we all chomped on Maltesers and drank Orange juice on the way home.
She now practises karate on Brad a lot.
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Wednesday was time for Oncology, so Kaity got a day off school and we headed down to Perth. She had bloods drawn and all were in the normal limits. We then met Dawn and Jan for lunch at Booragoon, and of course Dawn had to spend money with Kaity so she took her shopping for a new Bratz doll.
Thursday, 17th July 2008
Kaity decided she was so bored today she needed to ride.
I saddled Possy up, whilst puffing and panting, my belly is growing fast now.
When we got back we washed Possy down, I walked inside and heard...
"Coco, let's get more mucky!"
In fact no matter what Kaity and Coco do together it can be guaranteed to be trouble.
--------------------------
Last week we had great news that our bubs is low risk for abnormalities. This news was such a relief for us and we are now enjoying this pregnancy.
Sunday, June 22, 2008
Last night we had a double celebration and I feel old.
Kaity has now lived with cancer for 5 whole years!!!
Rikki-Lea turned 18!!!
So we had a party and Kaity loved having Tash here to spoil her.
All went well but I feel so old and tired.
Friday, May 16, 2008
Kaitlyn believes that one of the best things about being a little sister is being able to steal her big sisters boyfriend. She admits this openly, even to Matt who happens to be Rikki's boyfriend.
Luckily for Kaitlyn, Matt is willing to give her attention even before Rikki and certainly doesn't mind getting in touch with his feminine side.
Matt getting his nails done.
During the last couple of days my parents have stayed, in fact they actually came to install a new oven since our old one died. They are on there way up North on holiday so they brought their caravan to stay in. Kaitlyn enjoyed having brekky with Nan and Pop each morning and made herself comfortable with Pop whilst Nan did all the work.
Tuesday, May 13, 2008
Quite a few great things happening in our house.
Firstly, we are happily once again pregnant. Kaitlyn is very excited and so far so good. She has dubbed the little life inside of me "Sunshine" which we all agree is just such a perfect name. Sunshine is one lucky little sibling, and cops plenty of kisses and cuddles from the big sister. Kaitlyn is scared of Sunshine being too small "just like Chloe" so I am being almost force fed.
Jethro is finally booked in for his surgery and his job prospects look good after recovery. Won't mention too much but it seems he has a job that he will be able to start when he is ready. It's close to home and perfect for his abilities.
We had a perfect mother's day with a visit from very good friends, Marty, Mel and their kids Taj, Flynn and Kiana. Kaitlyn was so excited when she knew they were coming to visit and even though they have only met three times the kids really do kick it off well and the minute they got here they were together constantly.
So we used the opportunity for some pony riding and some quad bike riding.
Here's Flynn and Kaity waiting to take off
Kaitlyn adores Kiana even though there is a big difference in age, Kaity thinks Kiana would make a perfect sister and would like one just like her. 
Finally we had to say goodbye. Taj is Kaity's age and always makes Kaity giggle. 
Kaity presented Marty with a three leaf clover, and was bashful and giggly when he sang her a four leaf clover song. She certainly didn't hold back when she was saying goodbye though and threw her arms around both Mel and Marty, she hopes they will bring the kids back for her enjoyment again soon.
Thursday, May 8, 2008
Tonight I ask of our wonderful prayer warriors to pray. Not for us, but for friends of a very dear friend of ours.
T @ A are young parents, with a baby boy aged 6 months. For over a month they have been taking their precious boy to doctors with concerns over his well being. They were given pretty much the same answers as we were back in 2003. So they did what we did, the only option available and took their baby to PMH.
He has now been diagnosed with Neuroblastoma, at this stage I am not sure on the staging of little "C's" neuroblastoma, but it's been mentioned their little man may only have a few weeks left in him.
I'm not sure if close friends and family of ours remember Kaitlyn at diagnosis, but she would only have lived another few weeks had we not got her onto chemo.
So here I am, asking you all to pray hard for little C and his young parents. It tears me to the core that another little person is fighting for life from Neuroblastoma.
I am praying that the doctors work out some treatment plan for little C quickly and without fuss.
Friday, April 25, 2008
We've had wonderful weather for our school holidays with plenty of riding time.
Kaitlyn uses her riding time to practice singing, and even does her own song writing.
School is back on Tuesday, the holidays have gone way too quickly.
Friday, April 10, 2008
Sometimes Kaitlyn can be such a nutty kid that we are waiting for what's next all the time. So we weren't that surprised when she came out with texta all over her face and arms. We don't always get a reason as to why Kaitlyn does such nutty things, but yesterday we did. "I'm just like you now Pa!" Which is when we realised it was facial hair she'd drawn and tattoos on her arms.
Slowly her neck is improving, once we realised we needed something which was going to target muscles more than panadol would. Nurofen has helped and this morning she declared "It's almost better!"
Today she was excited to get to school for a BBQ, and she told me it was "Free dress" day, meaning she could pick her own clothes, so she did. However I did manage to see that most (all) of the kids walking to school this morning were wearing school uniform. I'm thinking I've been "had".
Monday, April 7, 2008
You know I have to wonder if my life will ever be as it once was. Yesterday Kaitlyn and I were on our way to hospital to visit the dentist. She was awesome company and we laughed and chatted all day, never a dull moment. Her teeth need two small adjustments (fillings) and will be done next month, along with following up with an orthodontist to begin work on her overbite as she is now about the right age to get that going.
We did a quick visit down to 3B also, where we saw the gorgeous Miss Immie and her mum Fiona who was patiently waiting for chemo. Kaity had made her some playdough to keep her busy.
This morning, she has awoken with a very stiff and painful neck which is not getting any relief from panadol. Of course this could be a very normal childhood ailment, she could have slept wrong, but being a cancer mum will forever taunt me and of course in my weary mind it could be tumour on her neck again.
Thankfully she is happy and playing, but walking around quite strangely with her neck on the side.
Thursday, April 3, 2008
I feel that this picture depicts Kaitlyn's "attitude" perfectly. Or as her teacher calls it "Kaitlyn strops". 
Then in the next moment it's all smiles again.
Tuesday, April 1, 2008
Last Thursday and Friday night we had bad nights with Kaitlyn not being able to sleep, she was using what we thought was every trick in the book to stay up including toilet breaks every 5 mins.
On Friday afternoon we drove down to Perth to drop her off and it came to our realisation something wasn't quite right with her toilet breaks. She was busting one minute but couldn't go when we'd stop the car.
I did ask her dad to get her into a doctor as she was spending the weekend with him, but it didn't avail, probably not in the job description of BIOLOGICAL FATHER.
So first thing yesterday morning I made an appointment with a doctor, the earliest appointment was today. She was excited to get out of school for an early lunch and thought it was a great bonding activity for her and I to catch a wee. It went something like "Quick mum, here it comes, catch it, YAY, you did good mum!" I am sure it was overheard by the whole waiting room.
So, our GP tested the caught specimen and .... Yep, she has a UTI which she is now on antibiotics for.
After a few lunch boxes came back from school still full we've also been enjoying school lunch breaks at home. Kaitlyn loves to come home for lunch to a cooked dinner, and I believe she functions much better on a full tummy.
---------------------------------------
One of the best experiences in the cancer world are the people we meet. During Kaitlyn's "relapse" last year we were so blessed to meet in person a little girl we had heard so much about. Her name is Imogen. She's so sweet and her mum Fiona is just the loveliest liveliest person you could wish to meet.
We were even lucky enough to be able to watch Immie at Adventure World sliding adventurously down the slides with not a care in the world, laying on her back with her eyes closed. SO CUTE!
Today, we heard the terrible news that little Immie has relapsed with NB.
It's so unfair!!!!! Immie will have a broviac placed by surgery on Friday and will restart chemo on Monday. We will be thinking of this beautiful family as they embark on another path in their journey. Immie will not be far from our thoughts and prayers.
If you'd like to visit our gorgeous little friend her website is
http://www.theholmesgang.blogspot.com
Wednesday, March 26, 2008 4:35 AM CDT
Kaitlyn was watching her photo montage that her big brother Brad made and came up with a good idea. She decided we should do an up to date photo of her with her care bears on the stairs.
Just for fun, here's the one we did a few years ago (2004)
Tuesday, March 18, 2008 10:08 PM CDT
For the fun of it I've entered Kaitlyn's picture into a competition. You can vote for it here
http://www.bonds.com.au/bumpsandbaby/BabyPhotoGallery.aspx
Just click on "Sort by last name" and her name is Kaitlyn August. They are viewed back to front so hers is close to the end, just scroll through.
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Kaitlyn had been telling us for a few weeks that there was a new baby in my tummy. We eventually did a home pregnancy test and sure enough she was correct. Unfortunately, it seems we have now lost this little one too. We're ok. Just tired.
Thursday, February 7, 2008
On the way to hospital.
So... I guess you are all wondering how results went?!?!?!
Yep you guessed it, just like so many people have commented on in the guestbook, she LOOKS GREAT!
SHE IS GREAT!
Her scans have improved!!!!!!!!!!!!!!!!!!!!!!
No idea how, why or what, but thankful just the same. Our oncologist said she doesn't need to come back for another 6 months. YAHHOOOOOOOOOOOOOOO!
Again, thankyou all for your thoughts, prayers, and support.
Monday, February 4, 2008
Just a quick note, hectic house :)
First day of grade two was fantastic.
Kaity told us her teacher is from England (I was told she's been brought over to teach due to shortages here), and that she talks with an "England voice".
She's very nice, introduced herself to us and said she knows Kaitlyn's history.
It's going to be a good year.
Friday, February 1, 2008
Today was the easiest day so far.
We arrived at hospital and Kaity and Jethro went straight into the Nuclear Med Room. Her MIBG scan went smoothly for one hour and 15 minutes. Kaity and Jethro watched THE WHOLE "Tigger Movie", I managed to read ALL the magazines in the waiting area.
Our Brave girl getting close and personal with the MIBG machine.
All important job of watching movies whilst staying still.
After the scan was done, we headed off to Nanny and Poppy's house for a long overdue visit. Some serious playing was required, although Kaity wanted to ring her cousin's to tell them to come over, we didn't have enough time for that though.
After our visit we headed off to another hospital, this time for Jethro, he had a long awaited MRI booked. Kaity was the super nurse and helped Jethro brave it through, telling him that it's super important to lay still. She did a great job of not being the patient this time and waited in the waiting room and read ALL the kids books.
Thursday, January 31, 2008
We arrived at the hospital for 10:30am. Unfortunately the tracer was running late, and we were told the plane from America would most likely arrive around 12 noon. So we gave them our number and headed to King's Park to have a picnic. They finally called and said to be back at 1pm.
Once again I waited in the waiting room, and could hear Kaity's cries, they inserted an IV and she was injected with radioactive nuclear dye. Once again they came out hand in hand and all was forgiven and forgotten.
Kaity wanted to go mouse shopping again, we had to say no this time, she really loves her mice and couldn't wait to get home to play with them.
Let's go this way!
Just plain cute!
On top of the trees on the treetop walk.
Unfortunately the flash was on for this pic but you can see the city in the background.
Wednesday, January 30, 2008
Yesterday we had a CT booked. Kaitlyn was so happy, she drank her lemonade and contrast quickly and quietly, and we waited... and waited...
Then Jethro and Kaitlyn went into the CT room, both were nervous (Jethro's first scan and needle stick). They did the first scan and then Kaity had to have an IV inserted for more dye to be injected. Kaity cried and Jethro's heart broke.
I could hear Kaity from the waiting room.
Thankfully they came out hand in hand and cheered up quickly and we went off to a hearing appointment, where I found out that even though Kaity's hearing loss does not warrant hearing aides she would probably benefit from an FM hearing system in the classroom as the background noise probably makes hearing hard in that scenario.
On the way home they decided we needed pet mice. So, we called into a pet shop and Kaity made fast friends with one of the ladies working there, having a good old chat about absolutely everything. So Alvin, Simon, Theodore and Claire all came home with us. We think Claire is pregnant so Mr BoJangles will be happy. As for Simon and Theodore, we hope they get pregnant for Mr Bojangles too.
Today Kaity has spent a fair amount of time with her mice, and playing play doh, we made home made play doh the other day and she LOVES it. This afternoon we made chocolate crackles, Kaity is really enjoyed cooking lately.
Thursday, January 24, 2008
Thanks to Chevron and Camp Quality for an awesome day at Adventure World!!
Kaity always has to have a go on the Peddle cars in the sky first before anything else! 
Let's go down the slides.
Down we go.
Loving crocodile Lake!
Thursday, January 17, 2008 7:50 AM CST
It's hot again here, so we're inside the airconditioning and we're baking cookies!
First batch out of the oven.
The all important taste test!
YUMMMMMMMMM........
Wednesday, January 16, 2008
Mr BoJangles went missing, we searched and searched and then found him
WITH KAITLYN!!!!!!!!!!!
Saturday, January 12, 2008
My beautiful new Bratz bed.
Tuesday, December 25, 2007
Merry Xmas to you all. Thankyou for visiting Kaitlyn's page and continuing your support for her always. She's our hero and such a special little girl.
I've put together a short clip of our year in photos, it's been a big year for us.
Monday, December 24, 2007
So Santa brought us a new pool table yesterday, and we've been busy playing pool.
Then today, Kaitlyn's tooth fell out so we are expecting SANTA AND THE TOOTH FAIRY IN ONE NIGHT!!!!
Also, because Kaity has been such a BIG girl and sleeping in her own bed she was allowed to visit her favourite shop lady "Helen" and spend some money.
She picked FACE PAINTS as her prize! Guess what Kaity spent the day doing?
Unfortunately Rikki was working, we missed her. She came to see us at home in her lunch break and called us "Freaks!" She didn't allow Kaity to paint her face, but just wait until she's asleep next!!!
Sunday, December 22, 2007
We got a phone call from Santa and he said he is having one of our presents delivered today because it won't fit into his sleigh. So it's a good time to sit at Jethro's new bar and play chess.
Wednesday, December 19, 2007 8:53 PM CST
On Wednesday we headed off to the end of year Presentation night, we weren't sure if we were going to be able to make it but Kaity was insistent, and she organised to go to Karlee's house to get ready there.
Firstly all grade one children were presented with a Book, then they started on the "special" book awards, to my amazement I heard Kaity's name called out for........
"CWA Awards - In recognition of the children who show a sense of responsibility, caring and trustworthy attitude and exhibit a sense of community."
I raced out of my chair snapped pics of Kaity, and sat back down, to then hear Brad's name called out for the next CWA award. So I raced back up to the front to snap pics.
I am so proud that Kaitlyn was not only a winner of this award but she was also the ONLY grade one child to be presented with a special award, she's grown and matured so much in this year.
Kaitlyn with her grade one teacher Ms Gault.
Kaitlyn with her two books.
My other pictures are all blurry, unfortunately I was unaware of the awards the kids were receiving so wasn't ready and prepared for pictures.
So Kaity is now ready to begin grade two next year when school returns. She's loving the idea of school holidays and is also looking forward to Xmas.
Saturday, December 8, 2007
BIG NEWS!!!!
Kaitlyn has now slept on her "new" big girls bed for 4 nights straight.
I was lucky enough to score a free second hand four post bed which I've converted into a Bratz bed with all the trimmings, it's still not complete but it's doing the job perfectly and our princess is so happy in her bed.
I'll get a pic as soon as I've finished the whole look, just waiting for some more timmings to come in the mail from EBAY.
Today we visited Santa who came to town, unfortunately Kaity had a bad experience the other day with Santa (not in our company) and now believes because she was "naughty" the other day that he won't be visiting her on xmas eve. We've been gently explaining to her that refusing a photo with Santa IS NOT NAUGHTY AT ALL. So hence this year we may not get a Santa pic.
Tuesday, December 4, 2007
Life is busy as normal.
Mummy got a new (secondhand) love swing and I certainly do love it.
I call our house Care-a-lot and my Pa got this sign made just for our house.
Tess let's me love her puppies.
and I love teaching them to "sit"
One of my most favourite things in the world is SAND.
Monday, December 3, 2007
Tiny Kayla has become an angel. Visit Kayla's page
Monday, November 19, 2007
Happy 12th birthday to Travis. Where have those years gone?
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Just a quick funny from Rikki, this may not mean much to our US friends but our Aussie mates will understand how funny this is.
Rikki - "I think John Howard is going to win this year"
Kaitlyn - "Do you?"
Rikki - "Yeah, who do you think will win Kaity?"
Kaitlyn - "Chris Judd!"
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For our US friends quite obviously John Howard is our Prime minister, Chris Judd - a footballer!!!
Kaitlyn never fails to make us laugh. She's growing so fast and we've decided she's NEVER leaving home!!!!
Friday, November 16, 2007
On Wednesday Kaity had an ultrasound. The results of that were that her liver disease is indeed stable.
She had to endure a blood test from the arm and was a champ, the results of those tests were, NORMAL. Even her liver counts were normal.
Her oncology team will be discussing her results and her future on Monday.
We've been so busy on the home front. Our beautiful girl dog "Tess" had delivered puppies. It was an extremely emotional night for us as we relived our memories from 8 weeks ago. Unfortunately we lost the first pup the next morning due to her being a water birth, meaning she had no sac when she was born, and apparently she may have been helped by flicking her upside down at birth. 36 hours after what we thought was a finished labour Tess then delivered a stillborn pup. Brad stayed up all night and witnessed every single pup being born and was a brilliant midwife for Tess. It was a long night!!
So we have 7 gorgeous little pups who are growing extremely fast and looking oh so cute!! Anyone want a pup?
Kaity loves the pups and can't wait for them to open their eyes.
Since we've had good news on Kaity's ultrasound we will continue our journey to try and conceive a sibling for her. So we're praying for an excellent 2008!!!!!!
Tess and her pups
The little girl who the kids (and Jethro) are begging to keep.
Saturday, November 3, 2007
Please don't forget to go visit one of our nurses from hospital. Rochelle is doing "Shave for a Cure" to raise funds for the very hospital and ward we are treated at. Rochelles blog
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Last weekend we went away to Camp Quality in Burekup. It certainly was the break we all needed.
OK I think we go this way guys!
During the week I had an early morning appointment to attend and left the guys in charge of getting Kaity to school. I laid out the clothes to make it easier and thought they would manage ok.
Well, after school when Kaity came home I had to burst out laughing. The poor little girl had gone to school with her "skorts" backwards. Of course Jethro blamed Brad and visa versa.
Kaity is doing well, she has scans coming up soon.
Wednesday, October 31, 2007
I've become aware of two Neuroblastoma angels in an many days.
Rest peacefully Jesson and Grace
I'd like to send you to a webpage to have a look. One of the nurses from Kaity's hospital is doing a "Shave for a Cure" to raise funds for the very hospital and ward we are treated at. Rochelles blog
Some of you may remember me mentioning a Neuroblastoma mum called Fiona. I spoke to Fiona by telephone and email before I actually met her in person. We met in person at the hospital during discovery of Kaitlyn's relapse. Fiona is the type of girl I could easily be best friends with, she's the life of the party, friendly, and has a beautiful personality all over. Immie, her daughter is just as amazing and gorgeous.
Fiona sent me this email about a very good friend of theirs and I'd like to share it with you all in hope you can offer some thoughts their way.
------------------------------------------
Blake needs our help!!
Hi all
It is with a very heavy heart today that I sent you this email...Most of you will know about our new friends Cherrie and Dean and there beautiful boys Blake and Kai.
Blake turned 1, last Thursday and has been fighting a huge battle with cancer - Atypical Teratoid Rhabdoid Tumour.
Blake has had two operations to remove the tumour, one so huge he can no use his left arm and took 12 hours to complete.
Another he had just recently - keyhole to remove a tumour of his lung. These both were successful. Blake has been doing chemo, on and off for the last 7 months and has reached the levels of chemo his body can take, so he can no longer have some of the chemo drugs again.
His family have been working towards getting to proceed to mega therapy and a stem cell rescue (info about stem cell)
http://www.cancerhelp.org.uk/help/default.asp?page=3954
Which is a huge road for this little boy to take, involving months of hospital stay.
Yesterday this was all ripped away from them, when they went in for more routine scans and discovered the other query spot on blakes lung is now a lesion. They now have to wait for another chest x ray next tuesday to see if he will able to start the mega therapy and stem cell rescue.
This is their last hope, of kicking this cancer, though as you may imagine it comes with many odds against them and will be a hard road.
All we ask of you is to put Blake and his family in your thoughts, prayers or vibes (whatever you believe in) and forward this on as many people as you know. To give them the help they need to stay strong, make these impossible decisions a parent should never have to make and help Blake to keep battling this monster.
Thankyou so much for your help and support,
Love to all
Fiona and Jason Holmes, Imogen's mum and dad 
To visit Blakes website Click here
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Friday, October 12, 2007 11:31 AM
School holidays in pictures.
Home made pure fruit icy poles - Yummo
Race ya home! After an early morning bush walk - in PJ's!
Our Museum tour guide.
Do Dinosaurs eat people?
Monday, October 1, 2007
Kaitlyn's birthday was a lot harder emotionally than I really expected, by the end of the day I was a bit of an emotional mess and just wanted to cry it all off.
Kaitlyn on the other hand was ready to party and even slapped a big kiss on a little boy's cheek when he gave her a present.
Saturday we had a nice quiet day which I really needed, with a big day of Sailing planned for Sunday we had an early night. The kids managed to keep us in fits and giggles all the way to Perth EARLY Sunday morning, where we "caught" (in Kaity's words) a sailboat for a beautiful sail on the Swan River.
Today we've spent a glorious Public holiday in York where they are celebrating the "Jazz Festival". Although none of us really wanted to go and complained and carried on (None of us were looking forward to Jazz music) Jethro talked us into the car and we finally did admit we were glad we went. We had stuffed spuds on the lawn listening to Pink Floyd (SO NOT JAZZ). Kaity managed some retail therapy with the multiple stores and the sun was just so relaxing.
On the way home e stopped by a river spot and strolled along the boardwalk.
Kaity decided to get out the camera once home and has declared she'd like to be a photographer when she grows up.
Kaitlyn kissing Corey!
Bratz cake and Friends!
Sisters and sparklers.
Kaitlyn and Karlee onboard the "Nexus"
Kaitlyn went below deck and made herself comfy
Strolling in the bush.
Two of my most favourite people in the world.
AND FINALLY - SOME OF KAITY'S PHOTOGRAPHY
Friday, September 28, 2007
Guess who turns 8 today!?!?
The princess awoke to brekky in bed.
Home laid eggs, on home made bread, with home grown and squeezed orange juice. Luxury in my books.
She's just toddled off to school with a number 8 birthday cake to share with class mates. After school we've arranged a birthday party with 5 of her friends, I really couldn't handle many more than that at this stage. Only one has replied so far so it could be a nice quiet afternoon with two little girls playing bratz and eating junk food, or it could end up with 6 friends running amok.
Kaity has missed her Brad this week, he has been away all week competing in soccer for "country week". I did get a phone call to say they have made it into the finals which are today, but most importantly (to Kaity) he comes home later today.
We have a nice weekend planned so will update after that.
HAPPY 8TH BIRTHDAY MISS KAITY!!!!!!
Sunday, September 23, 2007
For as much heart ache as I've personally endured this last week I am also relishing the fact that I must be the luckiest girl alive.
This weekend we officially became a step family. We now have a full time step daddy in our house! We are ALL overjoyed. Today the love of my life and my second born son went to pick me some flowers to garnish our table. How lucky am I?
I've met, fallen in love and am now going to spend the rest of my life with my soul mate, best friend and most amazing man I could ever have wished for. How lucky am I?
My amazing miracle girl wrote on the calendar for this weekend "PA IS OURS!". She welcomed him with open arms and hasn't left him alone since. How lucky am I?
My soul mate, best friend and lover tells me constantly that he is the happiest man alive. How lucky am I?
Of course my emotions are still running crazy. My nights are usually filled with tears, nights were the time when I could feel our precious Chloe kicking up a storm in the past. At least now I have the consolation of being able to hold my man tight when I need to cry.
Tomorrow we collect Chloe's ashes. Another emotional day I expect, but we will be together.
Friday, September 21, 2007
Kaitlyn has had a very emotional week, from having "accidents" to "melt downs" to getting sent home from school.
Tonight we convinced her to go to the "Freaky Friday" disco at school. Buying matching outfits for her and Karlee helped! Can anyone say "Mini Bratz!"
Best friends!
Thankyou all for your messages. We are missing our baby Chloe very much. Although born still we all had a chance to hold and cuddle and kiss Chloe, Kaity enjoyed lots of kisses, she was so so tiny, she weighed 300grams and was 24cm long (tall like daddy!), and her perfect little nose was a splitting image of her daddy's nose. Tonight is a whole week since she was born at 8:20pm.
Not in our arms but in our hearts forever. We love you Chloe, and a big thankyou to Kaitlyn for being such a great big sister and picking you such a special name.
Saturday, September 15, 2007
Our much wanted and much loved little Pocahontas flew to heaven Friday 8:20pm, Chloe Jade (as Kaitlyn has so aptly named her) was born still at 20 weeks 2 days gestation.
We love you precious baby.
Our hearts are broken.
A beautiful group of ladies I am friends with online sent us a bear with Chloe's details on. I took a photo of the bear holding Chloe's footprints and handprints.
Sunday, August 26, 2007 8:19 PM CDT
Introducing our perfect little bundle.
Thursday, August 23, 2007 10:40 PM CDT
Uncle Troy and I revving it up.
Travis and I play everyday on our four wheeler. Travis let's me drive and I'm CRAZY!!!
Thursday, August 23, 2007 10:58am
I had my amnio on Monday, I was terrified.
I also had a blood test due to Rhesus negative and a jab in my butt - just in case.
We got a beautiful picture of our baby before they asked if we'd like to go through with the amnio, structurally they could not find anything wrong with our baby. We agreed to go ahead and once I saw the needle I could not open my eyes again.
It was very uncomfortable and at first they could not retract any fluid. Eventually they managed three vials and withdrew the needle with was the most uncomfortable bit.
After our hospital visit I was told to rest up for the rest of the day and Jethro was definately to cook dinner that night
We waited for our FISH results which came through at lunch time Wednesday. Our initial risk was 1:62. Prelim results are - all clear for Trisomy 13, 18 and 21
We still have to wait for our other results which will include the sex of our baby, but we are now comfortable and happy to enjoy the rest of this pregnancy. They are wanting to watch and scan regularly due to my hormone levels being low, they think there may be a problem with my placenta that they need to watch for.
-----------------------
Kaitlyn is good and enjoyed being looked after by nanny and poppy. Today she dressed up for book week as a little chinese girl (Mulan possibly). I also got a text message from Karlee's mum telling me Kaity got a certificate today at assembly, I was unaware.
Friday, August 17, 2007 10:37am
Poor little princess fell asleep at her desk in class, so needless to say I got a phone call asking for me to pick her up from school.
She's toughing a cold but I think what really made the difference is that Karlee got sent home yesterday and didn't return today. The first thing Kaity said to me was "I need Karlee!"
Right now Kaity is tucked up in my bed watching DVD's.
Wednesday, August 15, 2007 8:38 PM CDT
Long day, got home about an hour ago.
Basically, we drove two hours, spent half an hour looking for a parking spot, waited two hours in the waiting room...
To be told in a five minute consult....
"The disease which has presented in the liver is stable and has not spread to her abdomen, come back for another scan in 3 months!"
She could tell I was pretty upset about having to wait another three months of hell and brushed me aside and saw us out.
I'm disappointed that no blood work was taken, and no urine sample done. We had a long day for a consult which could have taken place over the phone.
NOT HAPPY!!
But on another note we did get to meet the charming little Immie. A delightful little 3yo who has just finished her treatment for Neuroblastoma. Immie's mum Fiona kept me occupied and my mind clear during our wait... THANKS FIONA.
Tuesday, August 14, 2007 12:11pm
Landing on her nose yesterday wasn't enough for Kaitlyn. She's just tried to stop herself falling with her chin!
I'm scared to take her to hospital tomorrow, looking like she's all busted up! Her nose is extremely BIG and sore looking. She didn't go to school today because her neck is sore and she had a head ache, most likely from the fall yesterday.
But she's happy to know that Karlee is coming over after school and will have dinner, a sleep over and come to hospital with us tomorrow.
Let's hope she can stay on her feet until then!
Monday, August 13, 2007 3:51pm
I got a call today from school.
Kaitlyn fell on her nose!
It's swollen but she will live.
She was more concerned about the doll she was holding at the time, it belonged to Karlee and was her very best and favourite doll.
Saturday, August 11, 2007 7:25pm
For the first time in her life Kaitlyn is grounded. No extra playing with friends, no going out.. GROUNDED.
She was spotted being a bully at school, not by teachers but someone closer to home who happened to mention it, she was made to apologise to the little girl and is GROUNDED. Kaitlyn has trouble realising she is able to have more than one friend, another little girl wanted to sit with them at lunch and Kaitlyn threw the little girls lunch box away. Plain naughty and bullying.
We've discussed the incident a lot and I am sure we won't have it happening again.
In Kaitlyn's current "bored" mode she found some lipstick and spent 30 mins chasing us all around giving us lippie kisses! Of course the lippie was applied in true Kaitlyn style (All over her face). I even sport a big lip kiss on my belly where pocahontas received a big smacking kiss.
Kaitlyn is feeling really good and we wonder how on earth she has the energy to be first out of bed and jumping on ours each morning. She's promised me brekky in bed tomorrow.. can't wait!
We are currently waiting on results, next week. So keep those prayers coming.
Monday, August 6, 2007 7:18pm
Despite my good intentions and thinking I had our appointments under control, we arrived at our appointment and somehow, I handed over the wrong appointment letter. I was told that appointment was next week. Scratching my head I really thought I was losing the plot and the events of the last week were finally getting to me.
So, with no appointment at 11am we had some time to kill and made our way to do some birthday shopping for Brad, he is now 15!!!!
Karlee (Kaity's best friend) came along to the appointment with us so the girls were in fine form and happy to be together, wearing matching shirts and carrying matching bears, AND missing a day of school.
We eventually made our way back to the hospital for our 3pm appointment and ultrasound. Karlee was excited to see Kaity has rainbows inside her tummy (pretty colours on the sonography screen). I was disappointed to see some measurements being taken on two "things" inside her tummy. Jethro was so proud of Kaity and how she laid so still for her scan.
On arrival home much later I discovered I did indeed have our appointment times correct and will now have to ring the hospital to work out what we missed. Pleased to not be losing the plot afterall!
We have some busy days ahead with many appointments for both Kaity and Pocahontas, so it's quite annoying we missed that one when we were actually there.
Kaity and Karlee decided when Karlee's dad arrived to pick her up that whilst Jethro was keeping him busy chatting... THEY WOULD HIDE!! It's amazing the connection these two little girls have, and it takes all our power to sometimes not giggle with them when they do something they "shouldn't".
Monday, July 30, 2007 9:45pm
Whilst Kaity is doing GREAT we have had scary news on our little Pocahontas.
Pocahonatas has one chance in sixty two of being a trisomy 13 and 18 baby. We will be undergoing further testing to see if our little one is ok.
Saturday, July 28, 2007
Hi Friends & Family! My friend Nikki is hosting the 2nd Annual Blogathon for a Cure on Saturday, July 28, 2007! Kaitlyn will be featured at 9pm (US time)
What is a Blogathon?
It is a fundraiser for the Children’s Neuroblastoma Cancer Foundation. Nikki will be blogging every ½ hour for 24 hours. People may pledge her hourly or via lump sum directly to the charity after the conclusion of the 24 hours, just like any other fundraiser!
How can I help?
There are many ways you can support her effort to raise money for all Neuroblastoma Warriors!
1. Send this poster out to all of your friends in your address book via email! The more people that know about this, the more money is raised for NB Research!
2. Post one of the attached images & link Nikki’s sponsorship address and/or blogging website on your personal website!
3. Tell your friends and family, via word-of-mouth
4. SPONSOR NIKKI! This is by far the most important thing you can do. A small pledge of $5 can go a long way! All donations are made directly to the charity the week following the Blogathon!
Important Links
Blogging for a Cure: http://www.bloggingforkids.shebecameabutterfly.net
Sponsor Nikki here:
http://www.blogathon.org/pledge.php?blogid=541
Thursday, July 26, 2007 8:40pm
Today Kaitlyn went to school for the very first time in weeks.
Arriving at the gate we were met by a little boy named Corey, he was so gorgeous insisting on carrying Kaity's schoolbag, of which I was actually carrying, he eventually took it off me and carried it the rest of the way.
Kaity and Corey chatted about the snake skin Kaity was taking for news, yep, Mr BoJangles shed his skin in time for Kaity to take to school.
We got to class and Kaity was a bit upset that Karlee wasn't at school, unbeknown to us Karlee was actually in her mum's car insisting she wasn't going to school because Kaitlyn would not be there!
After school I met with Kaity's phys ed teacher who said Kaity actually joined in today (rare thing) but was concerned about the not using the arm thing, I explained it's an injury we are conquering.
Class teacher said Kaity had a great day! SO pleased.
Tonight she's been busy making "Kaity art". She's used the rose she snuck home from the pub on Saturday night (actually the publican said she could take it). Isn't this just devine art!!!!
Thursday, July 26, 2007 9:52am
During the school holidays I went to a small farm with my best friend Karlee and her family.
Wednesday, July 25, 2007 8:41am
So after seeing the wonderfully amazing rainbow on our trip home we arrived to discover....
The neighbours tree had fallen across our powerline and we had no power, along with the tree blocking our drive way.
I'd just done our food shopping and was in a panic as to how the cold stuff was going to stay cold and if we would lose everything in our freezer, and how to cook with no power/
Rikki-Lea cheered us up by shouting us to dinner. Only that was marred by me forgetting I can't eat prawns and ordered garlic prawns. I realised before our dinner came to us and Rikki decided we could swap dinners. All good, Rikki couldn't eat it all so Jethro finished off the garlic prawns.
They were both up vomiting all night.
So our luck continued and Kaity fell off the kitchen stool. She still hasn't used that arm but it is improving.
Monday we went for our scan for Pocahontas, all looked good and we got a good show with bubby moving around quite well. Kaity could not attend as originally planned because of her sore arm, instead she cuddled up with cousin Bryce at Nanny's house.
Tuesday we got home to a very large telephone bill from during our hospital stay.
With having to have given up work again because of Kaity being ill I just don't know how things will go from here financially and I hate to whinge about it but it is quite worrying.
We now have an ultrasound appointment booked for 6th August, but will not receive results for more than a week after that.
Ps - My friend Brad did manage to save all my photo's but I have lost all other information from my computer, eg - email addy's, so you may need to drop a line.
Sunday, July 22, 2007 1:10pm
Friday night we visited the Fremantle Jail and were taken on a candelit night tour. With many ghosts haunting us throughout the night, it was a very educational visit.
Yesterday we made our way home and were delighted with a beautiful rainbow which we stopped to "snap".
This is close to home looking over a farm.
This morning the princess woke with a sore arm. That sick feeling was in my stomach until she started using the arm again, then ironically she fell off the kitchen stool onto her other arm and is now complaining A LOT about that arm, it's the same arm she has broken before so we will see how we go today.
Tuesday, July 17, 2007 9:51am
If it doesn't rain it hails.
My computer died and I haven't done backup of my photo's in a long long long time.
Tomorrow I will take it to my old boss and friend Brad to see if he can save the photos.
Wish me luck.
Monday, July 15, 2007 12:29pm
Justa quick conversation between Kaity and I.
Kaity - Humming away as she paints
Me - Gee whiz you are so beautiful
Kaity - Me?
Me - Yep
Kaity - Cos I sing?
Me - Yep.
Thursday, July 12, 2007 1:27pm
With a long trip to Perth ahead of us and the whole reason for the trip playing on my mind I woke with an extreme head ache.
Kaitlyn obviously felt the tension and went into defiance mode.
My wits were short and my temper harsh.
I tried consoling and reasoning with an aptly named new care bear "Hopeful Heart" bear. This worked for the trip.
As we got closer to our destination my legs started to feel like jelly along with my arms and I was feeling the pangs of nausea growing in my belly.
Parking was a nightmare, not even able to get a park at the Ronald Mcdonald House. Our sweet Jethro met us there and we made our way inside. By now Kaity's mood was slightly improved.
After a few hours of waiting the doctor finally called us in and promptly Kaity's defiance returned. She refused to open her mouth for a check, so the doctor decided to count to three and held Kaity's nose after the count of three. This isn't a popular move with Kaity and the mood was made right then. She kicked and screamed and the rest of the visit was basically trying to hear what the doctor was telling us with Kaity making noises and kicking off boots etc.
So, what I know......
- Kaity has had lesions show up on CT and Ultrasound which have NEVER been there before, one particular lesion was about the same size as a small mandarin.
- Kaity's Bone marrow biopsy was normal.
- Kaity's Bone scan was normal.
- Kaity's urines were normal.
- Kaity's MIBG scan was normal.
We were left with two options.
1. Book another ultrasound for 4-6 weeks time.
or
2. Do a Liver biopsy which was explained was a risk.
Kaity is otherwise happy and healthy, and eating and playing well, so for now, we will wait for the ultrasound.
In some way I received my wish, the only difference is they didn't insist on the liver biopsy but rather talked us out of it.
So basically the oncologists still believe the cancer is in the liver but want to wait for it to "declare" itself by other means (scans or tests other than the CT and Ultrasound). The normal tests so far do not give PROOF that it is cancer.
Their suggestion to wait 6 weeks will not change the "outcome" (this was clearly outlined to me) or the treatment if/when the cancer "declares" itself.
Tuesday, July 10, 2007 7:20 AM CDT
Ok here's what I want to hear tomorrow. I'd like for them to tell me they cannot find any other lesions or disease other than what they see in the liver. They will then insist on doing a biopsy to which I will agree and they will then tell me the biopsy shows that these areas are fatty tissue or cirrhosis. I have spoken to two parents who have dealt with liver lesions and ended with the same theory.... so FINGERS CROSSED!
I can always HOPE!
Sunday, July 8, 2007
The other day we had a great visit from family.
With all the cousins in one place we decided on an update picture of them all. Now these are kids of all ages and a whole nine of them to boot, so this picture was a bit difficult to snap.
We got a letter in the mail from our electricity supplier that we needed to lop a tree away from our power lines, yesterday Pop (my dad) decided to clear the tree. Today Kaity helped clean up a bit.
I'm the boss
I like to climb
I'm a good helper
Come here Mr BoJangles
I wanna be just like Bindi
Let's kissssssssssssssssssss!
Wednesday, July 4, 2007
Yesterday Kaity had her hip bones drilled for a Bone Marrow biopsy, she now sports bruises and bandaids which can't be wet for 48 hours.
She also had an injection of Nuclear Dye which remains radioactive for 3 days. Hence I've been advised in my pregnant state to not have close contact with her in this time. Thanks Dawn for taking charge of her care whilst at the hospital. I've dropped her at grandma's and poppy's during her radioactive stage.
Today she had her MIBG scan and remained still for the whole hour.
No results with these until next Wednesday. One doctor mentioned her bone scan looked normal but this isn't confirmed.
Kaity remains happy.
Monday, July 2, 2007
Thanks to Grandma for this photo of Kaity before her best friends birthday party yesterday.
Today we had a big visit from my brothers and families.
I will update with pics from today when I get back from hospital Thurs/Fri.
Tomorrow she goes under GA for a bone marrow aspirate and injection for MIBG. Wednesday she has an MIGB Scan.
Saturday, June 30, 2007
The last few days have been the hardest we've endured in over two and a half years.
Kaitlyn has relapsed but I've been unable to write about that until my other children were told.
Tonight I've done that.
Kaitlyn has lesions all over her liver and will undergo further testing to see if it's anywhere else.
She remains happy and cheeky.
Friday, June 29, 2007 4:36pm
Kaitlyn has been allowed out for the weekend, as she poo'd!!!
She is spending tonight and tomorrow night with her daddy and family and will make her way to Karlee's party on Sunday. She will then come home to us for Sunday night.
We've been through a heap of testing.
She's had an ultrasound, a CT, and a bone scan.
Results will come next week after a bone marrow biopsy and an MIBG scan.
Uncle Kel and Aunty Ness visited all the way from Hong Kong, Kaity loved them playing with her and helping with her homework.
Uncle Troy came to Karaoke and won Kaity a prize!!! Unfortunately we only got to see Uncle Troy sing one song before we had to dump him and run for our bone scan. Thanks Uncle Troy for making our day!! He is so naughty and comes up with all sorts of bad ideas, but makes us laugh.
Kaity is completely happy and cheeky and is loving the social life of being on ward 3B.
We've had lot's of visits from old staff who knew her when she was so little.
Please keep praying for Kaitlyn.
Monday, June 25, 2007
Hello everyone,
It's Rikki-Lea here. I am just updating the page on behalf of Mum because she is unable to. Kaitlyn has been sent to the oncology ward to have some tests done to see why she has a sore stomach and has been feeling sick, so Mum and Kaitlyn are currently at hospital in Perth.
Rikki-Lea.
Friday, June 22, 2007
Last night to celebrate four amazing years we decided to accept an invitation from Camp Quality to attend Circus Joseph Ashton in Joondalup.
When we arrived it was a pleasant surprise to meet some West Coast Eagles Players.
Kaitlyn with Adam Selwood.
Kaitlyn with Beau Waters.
When we sat to watch the circus Brad was happy to have the Eagles players sit next to him and chat! Adam Selwood particularly was kind to Brad and made his night. Brad is a BIG Eagles supporter and paces and stresses each weekend before the game, and if the Eagles happen to lose, we don't get any conversation from Brad all weekend. So as you can see the Eagles are a big part of our life!
The circus was amazing! Kaity and I were just sitting there saying "wow" a lot! They even have a tiny little baby as a part of the act and he knows exactly what to do along with a beautiful little girl who Kaity called the "Little Ballerina". Such talent from the whole circus. They are in Joondalup all weekend and I highly recommend the show!
A big thankyou to
Camp Quality
Circus Joseph Ashton
and
West Coast Eagles.
Click the banner's below to view their website.
Thursday, June 21, 2007
Four years ago today.............
CONGRATULATIONS MISS KAITY!!!!!!!
Our little miracle has survived four years.
Four years ago today I first heard the words "tumour in your daughters abdomen"
Four years ago today I met an oncologist and learnt about chemo.
Four years ago today I met some really really cute and adorable bald kids and was told my daughter would also be bald soon.
Four years ago today I was told my daughter would live to her next birthday but maybe not the next one after that.
And here we are.
Today!!!!!!!
I'm so proud of my little champion. Tonight we're off to the circus where Kaity will do a photo shoot for camp quality to use in a magazine article.
Kaitlyn with her best friend Karlee.
Thursday, June 14, 2007
On our last night in NSW my mummy was acting real weird. She decided to do wee wee on a stick. I've done some strange tests before but never one like this!! How disgusting! Anyway, I saw the stick and it had two lines like this
When mummy asked me what the lines meant I threw my arms around mummy and Jethro and yelled "We're having a baby!!" Adults are so weird cos they were nearly crying.
The next morning we told Opa and Oma, they asked me if we want a boy or girl, what a silly question, I said "It's a girl!" so they asked if we had any names for our baby, I don't know if I was sposed to tell but I told them "Pocahontas".
Oma and Opa drove us to the airport. I was sad to say goodbye and gave Opa and Oma kisses.
This is me on the plane getting ready for take off, I suck chuppa chups so my ears don't hurt as much and I even had TV right in front of me AND the window right next to me. How lucky was I???
Thursday, June 14, 2007
This is me running away from "Puff" the dragon who kept spitting water at us! He lives in a blow hole at Kiama and he'd been eating McDonalds and just threw his rubbish away too! 
Opa had NO idea of which way to go, so I had to show him on the map. I happen to LOVE maps so it was all good. Of course I think Opa just got confused!
Opa and I spotted something good to look at after we worked out the map!
Tuesday, June 12, 2007
Riding the ferry to Manly was fun! I sat on the beach and made sandcastles. 
Sunday, June 3, 2007 11:49 PM CDT
I love playing hide and seek and the opera house has lots of good hiding spots!!
Friday, June 1, 2007 4:38pm
I've wanted to see the Opera house for SOOO long, I even got to touch it once we climbed all the stairs!
Did you know there's a big opera house and a baby opera house?!?! I went inside the big one.
Thursday, May 31, 2007 6:37 AM CDT
This is the very first Lighthouse I've seen in real life, and I LOVE lighthouses. I ran around and around this one!!! It was windy in Wooloongong, but we spent a really nice day for Mother's day on the beach.
Friday, May 25, 2007 3:59 AM CDT
A long day at the Taronga Zoo, with Opa and Oma. We rode the sky rail which was scary the first time and this was my first glance at the Opera house and bridge. I was pretty tired by the time we finished looking around the zoo so it was lucky we hired a stroller so I could just sit and relax.
My wombat's name is Millie, I bought her at Fitzroy Falls and loved her every minute, she kept me warm and safe at night and we even saw her brothers and sister's at the zoo.
Thursday, May 24, 2007 7:55 AM CDT
Me and Mummy having cuddles waiting for our flight right after I ate my big muffin at the airport. I LOVE those muffins.
Tuesday, May 22, 2007 1:26pm
Just a quick note to let you all know we have arrived home from Sydney.
Will update with pictures as soon as I get a chance... so much to do!
Just quicky I will add in the URL for a video Brad made for a school project last year, I finally managed to add it to YouTube -
http://www.youtube.com/watch?v=20psz_FCul8
Copy and paste that URL into your browser. Let me know if it's not working for you.
Friday, May 11, 2007 10:23am
We're Off!!!
Sydney here we come.
Thursday, May 10, 2007 4:19pm
Only two more sleeps until we fly to Sydney. Kaity is very excited.
Unfortunately she "may" have been exposed to chicken pox so she is spending the next two days away from school to prevent further exposure. Please concentrate your prayers on this in particular as we don't want to be spending our time away with her sickly. She's wanted to go to Sydney for a long while and we intend on making it an enjoyable holiday for her.
Some good news. I have a job! When I return from Sydney I will be working daily, and have been this week. Kaitlyn came to work with me today (Thankfully a good boss) and will tomorrow.
Some more good news. Kaitlyn has been approved for an aide one day a week at school through the government, and we applied to the Ronald McDonald learning programme who have approved Kaitlyn for help for a couple of hours each week, they provide a teacher to come and do lessons with her.
Monday, May 7, 2007 6:32 AM CDT
5 Sleeps and we are off to Sydney.
Kaitlyn is looking forward to this trip, we will be away for 9 days so we have plenty of time to have a good look around without pushing Kaity to hard.
On the weekend we went for a bushwalk, I wish I took the camera as we had a few muddy kids by the time we got back home. We followed he river which is not wet just yet, other than a few holes of water, but we managed to walk all the way from our house to the bridge close to town. It took us about an hour and Kaity only complained once, considering it was truly a bush walk with climbing she did really well, and I bet her muscles were getting some toning (along with her mouth muscles because she talked pretty much the whole time).
The kids showed us adults the "old" jail which is a bit derelict, Kaity enjoyed looking at a jail even if it's falling down in places, she was even game enough to go into one of the cells and pretend to close the big iron door.
Monday, April 30, 2007 3:42pm
Look at my new baby. She's called Bekky
and this is one of my chick babies (I have 4) This one's called Mirayna.
Thanks Lorna for Kaity's newest pets.
Thursday, April 26, 2007
Today I took on the challenge of cleaning Kaitlyn's study, no small feat I can tell you, can you imagine a mummy's delight of finding something as precious as this note.
and then after more cleaning I came across another note pad and this note.
I feel so blessed, and proud that I have at least shown my children love and how to love.
Aren't they just amazing little humans.
Sunday, April 22, 2007 1:27pm
Kaitlyn went on holiday with grandma and poppy.
Here's her diary.
I saw the cows being milked by my cousins Kayla and Amy. I fed the chooks.
I fed the fish. I held the bunny rabbits, he is grey and brown. I picked Lemons for grandma.
Pop helped me with lots of things. I fed the goats lettuce.
I went and saw my gnome at gnomesville and grandma found it.
I saw some kangaroos and big trees.
I went to a park and had a swing.
Ferguson Farmstay has 2 ponies. The white one is called Fred and the brown Pony is called Charlie. I fed them lots of hay.
Queenie the mother cow eats lots and lots of hay. My cousins rode on the pony called Fred.
I love my big sister SO much!!!!
Tuesday, April 17, 2007 6:16pm
Kaitlyn is currently on school holidays and this week will go on a farm stay with her grandma and poppy.
In just over three weeks we will be heading off to Sydney, Kaitlyn is quite excited!
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----End of History----
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