Tuesday, December 30, 2008

Christmas happiness


Hi all

Well after all the rushing, planning and shopping Christmas came together like a wonderful fairytale. On Christmas Eve we spent the day, donating plasma (me), watching Madagascar 2 at the movies, making a Peter Pan costume (because Santa was just tooo busy) and enjoying time with my sister, Olivia and Ben.

Christmas Day began at 6.30am, with the tiny tiptoes of a lil princess. Immie opened her presents from Santa..with great delight Santa got it right, especially with the Dora Light. Well Done Santa!!!. After that we went to the beach and enjoyed some sand castles, wind and swimming till 8.30. Back home just before 9am, we got ready to have Livi, Ben, Nige and Jody over for brekkie. We opened a ton more presents, and Kody returned home at about 11.30 to a heap more. Every one was very happy with what they received Immie's best present being the Dora light, Kody's was UB Funkeys . I was very spoilt with lots of presents, including new Pandora beads, new necklace and a very special gift of my Granma's recipe book written in her handwriting. Jason was spoilt to with a hamper of coffee treats for his new hobby of coffee making amongst many other presents : ).
After this we trekked down to my fabulous Auntie's and Uncle's place in Mandurah. There we ate...ate.....drank...ate....drank...laugh...giggled..talked....and ate some more. We had lunch then shortly followed by Dinner. Then some went off to see the lights, while we tucked a very over tired Immie into bed at 7pm. Afterwards we sat around eating more and chatting. Boxing Day bought more food, a slippery slide and our traditional pinata bashing lol. Then home to Perth, were the kids went nuts trying every new toy out, and Jason and I collapsed on the lounge. It's hard work eating and chatting I tell you : P.

We all had a great Christmas, the only downfall being Immie's poor skin and mood, she did not seem too worried but the Actuane tablets had really made a mess out of her lips with them cracking and bleeding on Christmas Day.

After Christmas we spent lots of lovely days together until Jas returned to work on the Tuesday. I even got to go to the sales and bought a brand new.....Christmas tree for next year, how very exciting, especially when the trolley holding the tree decided to take off down the car park, while I was fussing with my bag. Luckily two ladies stopped it before it ran into a car. Funny now not so funny then : ).

Hope you all had a wonderful Christmas, with lots of giggles, laughter, food and love,

Love

The Holmes Gang



Monday, December 22, 2008

Merry Christmas to all our readers xx

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To all who read The Holmes Gang blog,


We wish you a wonderful Merry Christmas, where all your hopes and dreams are met and you are able to spend the day surrounded by family and friends. We Thank all who have supported us and help us travel the long and sometimes tiring journey of 2008. Your support as helped us continue on, please join us for 2009 as our life returns to a slightly new "normal" again.


Here's to a fabulous healthy and happy 2009 for us and for you.


Love, Hugs and Kisses


Fiona, Jason, Kody, Imogen, Molly and Milly xxxxxx oooooo



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NOT LONG NOW....THO WHO's COUNTING...ahhh that would be us love the Holmes Gang

The new leg of the long journey

Hi all
Being a cancer parent is the one of the toughest jobs alive. You attend the hospital for regular checkups, watch your chid go through unfathomable medical procedures and you get told often about drugs they are going to give your baby, that have major and crappy side effects. Some days the journey feels like it is almost finished and then another leg (drug) is added on. Well after having a lovely siesta for 20 days, as Immie had no procedures (besides broviac removal) or meds. On Wednesday we had clinic to discuss and begin Accutane. We were lucky enough to jag the fabulous Dr Nick, who is lovely and Immie likes (Strangely enough as she spent most of stem cell snarling at him, I was just saying the other day how incredible Immie is as she never holds a grudge to anyone at the hospital regardless of what they have done to her). Dr Nick read through the side effects, as I explained them in the previous posts. Then we discussed Immie’s freaky finger and toe nails that are regenerating new nails caused from the huge dose of chemo she had in mega therapy. Apparently she’s like a tree, with their circles (rings) growing (living) and showing their age. Kody thought it was cool, he said so she has a new life and I agreed what a fantastic way to think that cancer was part of her old life pre mega therapy and stem cell rescue. Then we talked about scans, MIBG, Cat scan and hearing tests Dr Nick is scheduling these in for February, not sure whether I will have any nails left that month : ). After that we discussed new promising research on Neuroblastoma, always exciting as Immie’s cancer is one they have found very little new research for in years. The research is still in the baby steps place, and loosely (as I have not read the details tho Dr Nick did send them to me) described as finding a familiar cell in a lot of neuroblastoma cases and being able to turn the cell off, hence the cells die, leads to minimal cancer : 0 ). Ok it’s a lot more technical, but very encouraging when my sister first heard it on ABC news. Then Dr Nick checked out Immie and she smiled, giggled and was an angel. We checked out Immies counts which were again great; this was visually obvious from the fact that she had not received an even bigger bruise or bleeding (a sign of good platelets) after running head first into the underside of the Playschool Bridge on her second last day of playschool. We then ended our very chilled out clinic, clinic has improved immensely, it has become organised with patients arriving at their allocated times and having to arrive an hour earlier to do finger pricks, so results are ready when your appt is. A HUGE WELL DONE and THANK YOU to 3b Out patients, from all involved with 3b. We were then given a wee cup, to establish a baseline to start Accutane on that was needed that day. Easy enough you think we had ½ hour or so to kill at the pharmacy and Immie kept saying she was busting. In true Imogen form, busting meant absolutely NOTHING and pharmacy took over an hour. We ended our visit at the Resort with a mad rush and NO wee sample, as I was having my new “princess” crown installed at 4.30, at a dentist located half an hour from the hospital. Luckily Jas met me there to retrieve the beautiful Immie, we arrived to find Jas lining up mechanical work with the receptionist : ). My connection with my new crown was short lived as an hour and half later it fell out, argh luckily I did not swallow my $1100 tooth. That night Immie received her first three tablets of Accutane, given by a gloved Jas, as it has side effects on unborn children and we aren’t taking any risks for future plans.
Thursday morning we had a quick trip to the hospital to drop of the highly sought wee sample and deliver some Christmas chocolates. Then we went to Toddlertown for fun with our friends Kai and his cousin. We all had a lovely coffee and cake. Then I got my crown reinstalled, after the dentist giggling that it would have been an expensive dinner for me had I swallowed it. To this I replied, ahhh no it would have been an expensive dinner FOR you!!!!. Thursday was also the last day for big boy Kody’s last day of Year four, they spent the day watching videos and crafting - remember those days, I use to love the last week of school.
Friday, we did chores for Jas then went and had lunch with Karen and her friend Grazia to celebrate Christmas, got to have a great chat with both. Thanks Karen it was just what I needed. After this we met Mum at the pool, for a couple hours of fun: ). Then Immie and Kods returned to Mum’s house, while I went in search of Jason’s Christmas present from them (sometimes it’s easier to do solo trips, especially when Immie a little whinge and Kody’s walking around in his bathers, Thanks Mum). After returning, we chatted and got to see my Dad.
Saturday Immie was very exited (and so were we) as she went to stay at Granma and Bumpa’s place for a sleep over. Kody was going to his dad’s. Firstly we returned to the scary Galleria to get a new Christmas dress as no one liked the one I had chosen. To seek revenge I made them all come with me, the first time Jason has been to the shops this Christmas. Luckily for Jas the trip was very easy, scoring a dress in the second shop!. Jas and I then went to dinner and a movie after dropping our beautiful girl off to Granma’s and Bumpa’s.
On Sunday after picking Immie up we noticed her skin, on her face had become dry. I had also noticed since giving her the Accutane she had been very whinge. Though we were unsure whether this was from the end of school emotional mess or the drugs. We lathered her up, and headed for the pool. I went to do my intensive gym workout for my motor vehicle claim (boring). Jason and Immie purchased Immie her first goggles (very cute) and had a ball in the pool.
We have been told by Dr Nick, we should notice a difference to her skin etc, after week of taking Accutane (around Christmas day – Happy Joy!!). Though every child is different, and everyone knows how Imogen does things – VERY DIFFERENTLY, she is an individual and no one is going to tell her anything else (Yay for her) : D.
Well if you don’t pop back before Christmas or New Years we wish you all a wonderful, gorgeous, safe and healthy Christmas and New Year. 2009 is going to be FANTASTIC.
Thanks for joining as in our families journey for this year : )
Hugs, Kisses and Festive Drinks.
Love the Holmes Gang.

Tuesday, December 16, 2008

School comes to an end...


Hi all
Well another school year is drawing to an end. Today Immie had her last day at kindy – incredible another milestone ticked off. When Immie relapsed this year, the end of the school year seemed light years away. Today Immie soars and strives at school, learning how to write her name, her colours, shapes and that she has lots of friends (very cute). I have to confess I did cry a little, though then I went to Kody’s class to help cook food for his end of year party, no time for tears there!!.

On the weekend we went to Hyden to see Jason’s and my : ) family, we stayed with Col and Jacinta. This allowed us to spend lots of time with gorgeous Rhylee and beautiful Tayah. After a lovely dinner on Friday, we awoke on Saturday morning to a gorgeous day made for jet skiing. Everyone had a ball, and the amazing Kody even had a go at knee boarding, 4 times around the lake – WOW!!. That night we went out to dinner to celebrate a belated 30th Birthday for Jason, we had a lovely night at Terra Vista. Sunday we packed up, enjoyed lunch at Sue and Brian’s, checked out their new abode (impressive work). Then drove home, and Jas then went to pick up the very cute Milly.

Tomorrow we have clinic in the afternoon, to begin the Accutane drug as mentioned in the last post. Wish us a smooth trip to the resort. WOO HOO can’t believe it’s almost Christmas, looking forward to the family and the food – yummy!!!.
Love Fee

Lots more beautiful pics can be found here -

Wednesday, December 10, 2008

Lovely moments of magic


Hi all

Once again the week has gone and I have yet to update the wonderful blog. On the Tuesday we went to visit the wonderful Dhani and beautiful Sam, friends since we both gave birth to Immie and Dhani - four years ago. On Wednesday Immie did a sterling job at having her broviac removed, fasted for six hours till 1.15 – no sweat. She spent the morning playing with Josh, crafting and being good till the time arrived. Prior to going to the hospital she did freak and did not want to go anywhere near that place. The thought of having her taps removed made her bellow loudly. I am not sure how she thought they were going to be removed, but she was having no involvement, luckily after a little bribing we were on our way : ). We got home at about 5pm, got ourselves ready and we went to the school Christmas carols (yeap nothing going to stop supa kid!!!).

Thursday meet us with a early start to travel to meet the WIGGLES, arriving early, we went to the park for a while. Then we caught up Cherrie, Kim (who organised for us to meet the wiggles – thanks heaps Kim) and all the crew and off we went to a small room to meet the wiggles. They arrived we got a gorgeous photo with them, and a very quick chat, and then unfortunately they had to go get ready for the show. The Wiggles show was great, Imogen loved every bit, singing and shouting, it bought a tear to the eye to see the girl enjoying life to the fullest. HJ’s for lunch, home to meet my fabulous boy. Kody has been busy doing school swimming lessons and growing (he has grown heaps in the last six months). I can hardly believe he will be in Year Five next year!!!.

On the Saturday morning Kody and Immie had their pictures taken with Santa. Immie sat there will her eyes wide open, while Kody joked around with Santa. We pick the pics up tomorrow will have to scan and blog the pic. Over the weekend we began hanging the lights, they look very special. Will have to blog some pics, we are the only ones in our street: (. On the Sunday morning we opted out of the city Christmas parade and chose a visit to Cuddly Animal Farm, one of Imogen’s favourite places, think that has to do with all the cute baby animals you can hold. In the afternoon Granpa came to visit and then before you know it was Monday, and the week began again : P.

Monday bought playtime with her pal Penny, and plasma donating for me...

HERES WERE I GO TO ALL WHO DON’T DONATE AND COULD DO, PLEASE, PLEASE CONSIDER DONATING BLOOD. Immie would not have made it through stem cell rescue without the donations from the wonderful donors. Honestly it really does not hurt too much and it does not take much time out of your life every three months!!!.

On Tuesday Immie went to Kindy all day, someone forgot to tell Immie she was meant to be fatigued, the girl who never listens to norms (thank god!!). Today we had a quick visit to the hospital to a baseline line finger prick to prepare to begin the next drug on Immies list - Accutane
(What can you tell me about accutane?

Accutane is also known as isotretinoin, 13-cis-retinoic acid, and 13-cis-RA. It is related to vitamin A and is given by mouth. Accutane has minimal toxicities when used as a therapy for children with neuroblastoma. The most commonly described side effects include dry skin and mucous membranes. Some children experience peeling of their palms and soles.
Accutane stops the growth of neuroblastoma and can induce differentiation in vitro (in a test tube). A 5 year, randomized CCG study (CCG-3891) included 539 children with high-risk neuroblastoma. The study concluded that accutane improved the event-free survival for children with the disease and recommended that it should be used for treating all neuroblastoma in the future.)
.
Imogen will be taking this for six months from next Tuesday.

Clinic today was very quick, and we are planning to go in regularly in the afternoon it’s a lot quieter : ). Well here’s to another cruisie week, as its ALMOST Christmas as Immie keeps saying. I had an aha moment the morning when I looked at Immie engaged and smiling while stamping pictures on the Christmas envelopes. I thought how joyful it is to live in the moment, there really is no reason to worry for tomorrow as it has not arrived yet. I think I may have to take a leaf out of my beautiful girls book and enjoy the moment and not anticipate the future happenings.

Love The Holmes Gang



Tuesday, December 02, 2008

Finals and Fabulous Endings


Hi Beautiful People,

Well it’s been a busy week of running around, in the lead up to the most exciting month ever – December of course!!!. Last week Immie soared through radiation, she loves going there. This leads to TODAY BEING THE LAST RADIATION EVER!!!!!, no more 1 ½ hour round trips to Charlies or missing out on Kindy – woo hoo!!!. On Wednesday Mum took her to clinic and radiation, as I was getting my new tooth crown (yuk). Immie and mum went to the park near radiation to feed the ducks and had a ball. Then they went to clinic to once again discover Immie has awesome counts. Mum was also the chosen one, to do the LAST BROVIAC DRESSING CHANGE EVER!!!!. Then they spoke to the dietician and found out that Immie didn’t need to have her NG TUBE EVER AGAIN!!!!. This was because she had gained a little weight and was looking fab.

On Thursday we went to the zoo and then after we took Kods to radiation to see how very, very clever his very still little sister was at lying on the big table. After that we took off to the PMH resort to do some OT with the lovely Beth. We then continued onto our friends Karen and David’s (with a parking ticket – grrr) for a lovely Thanksgiving feast. Thanks guys it was great, even though I was a little maniac!!! : P. Dinner that night with Nana and Pop. Friday bought Kindy for the amazing Immie till lunch when she became a little too tired.

The weekend was lovely, spent all together filled with lots of laughter and fun planting our watermelons for the Yates watermelon challenge. Then Monday was a rush, after physio and playing with Hailey and David. Then lunch with the gorgeous Lisa and beautiful Cooper, off to radiation we went. Finally home after three we waited for the daddy to return and put up our beautiful tree.

Today is Kindy then radiation at 12.50pm and then we are going to play with friends Sam and Dhani. Then tomorrow at 2.15pm is the long awaited BROVIAC REMOVAL FOR THE LAST TIME!!! – Hurray. On Thursday we are personally meeting the incredible Wiggles, organised by one of Cherries gorgeous friends, Immie is incredibly excited – ‘Wake up Jeff” she yells.


So as you can see our week has been filled with many finals and fabulous endings to the last challenging 9 months. I have written all the important parts in capital so that if the gods, spirits and guardian angels are listening they will definitely hear..
THAT ALL OF THIS IS FOR THE LAST TIME EVER!!

Love and Hugs, must go pick up my princess love to all
Fiona and the gang


Lots of pictures of Milly, Our Christmas tree and home and hanging around click on the link below -

Tuesday, November 25, 2008

Our "Normal" life at our home


Hi people
Well I have taken some pictures showing how fabulous our very still girl is a radiation please see link below. Imogen is now half way through her radiation, and so far it’s been a breeze, cross your fingers this stays the same.
We had a busy week getting ready for Kody’s PEAC interview, Kody and Granma spent a lot of time choosing, drawing, painting, discussing which pictures to show and talk about. On Thursday after not hearing wether he was going for an interview on Friday I decided to ring the school. The school then told me that due to the amount of nomination numbers received that it was going to be all too hard, with not enough time and space to begin the course for coming Year 5’s (sent from the Education Dept). WHAT THE???. Next year’s Year 4’s will be able to start a three year course. (grrr) There will also be a course run for the Year six’s. Needless to say mum and I were really unimpressed. We plan to write back a response to the education dept, and mum is going to forward the letter on to some art groups and people she knows. The amount of numbers that applied shows that there is an incredible interest in the visual art program. It was such a great idea to give something to the kids who are not English, maths scholars or sporting champions. There’s got to be something else available, just have to keep my eyes opened. This was a great disappointment to Kody as it was something he was looking forward to regardless of whether he got in or not, just going along and talking about his art.
On the weekend we had another great time, on Saturday Imogen and me drove to Mandurah to pick up Imogen’s surprise. We decided to go ahead and get Immie at beautiful lil kitten who we had already agreed to have prior to any discussion with the doctors. We will be keeping the kitten inside, regularly vaccinated and will be using ALOT of Aqium (antibacterial hand wash), to help minimise any chance of infection. Our decision to get Imogen a kitten does not come with great discussion and up to four times a week changing our minds. In the end we decided that we could not make our lil girl wait any longer, for something she has wanted for nine months. In the last 22 months Imogen has been to hell and back, and we can’t continue to wrap her in cotton wool and not live life. Life is way too unpredictable for our liking.
This results into us introducing the newest cutest member to our home – Meet Milly, a boy black and white cat besides the boy bit exactly what Imogen asked for, who when we received, came wrap in a box with a bow (thanks heaps Karly).

Anyone who personal knows Immie will know this has been her list of kitten particulars since day dot. As you would imagine Imogen is very, very happy, and I am pretty sure Milly will have forgotten how to walk by the end of the week from the amount Imogen carry’s him around lol. She has been very good with him and apart from a few drops from above (he can fly apparently, well he is a super cat for a super kid) he has settled in well to our home. Please enjoy the cutest pictures ever below.



Love The Holmes Gang





or our whole album

Wednesday, November 19, 2008

Top Marks for Ward 3b

Santa and Immie (more photos at the end)
Hi all

Today I am singing praises for the ward 3b (lalalalala -lol),

we arrived at 9am. Down to the ward, quick and horrible dressing change. Immie has gotten worse with the dressing change there was a time when she was ok, tho now it's an absolute nightmare. Immie screams, wiggles and starts kicking as soon as dressing change is mention. Prior to that Imogen was weighed 15.65kg (tho could be a bit off, as she was screaming about the dressing and jumping on the chair) and height 102.5 cm ( same deal as she was not standing properly).

After the dressing, finger prick, then rush rush as we had to get to Charlies at 11 am. We were able to have a big chat to Rebeca and the gorgeous Alex and then Karla our favourite "Toy Lady".We even got to see a doc - Dr Hodder. Immie was very painful, she wouldn't cooperate with anything, Dr Hodder wanted her to do : (. Finally after the check up was over and the incredible blood counts were read.

Haemoglobin - 112

Platelets - 173

Neurophilis - 2.13


We talked about the Broviac removal, this has been penciled in for the 3rd/ 4th December, cross all your fingers it happens smoothly with no delays.


Then we rushed to Charlies for radiation, with Granma visiting, this is so she will know what happens as she is doing next Wednesday when I go to get my new tooth crown (yuk).

Immie was a star, listened to her playschool cd and then put her sticker on the chart and ran off lol. Too busy to hang around!!!.

From there after the shops we went to Kody's class to listen to his speech on Egyptian Gods. He did a great job, much better then me standing in front of a heap of people. Poor sod, was a bit embarrassed though when my sms tone, went off in the middle of someone's speech. The tone was Immie yelling at top note " I DO BELIEVE IN FAIRIES" ahhhh only three times lol, parents who'd have them.

I have to share a special moment my gorgeous gift of a daughter shared with me the other day, we arrived at the shops after not going for a while. Imogen eyes opened widely and she exclaimed " Mummy look at all the miracles" for some reason she has decided that's the name for the shops Christmas decorations. This Christmas, take Immie's idea, and look for the "miracles" that you and your family can make, with others and yourselves xx

Love The Holmes Gang

Tuesday, November 18, 2008

Radiation, watch out Imogen is in the HOUSE!!!

Radiation began yesterday for the super brave Immie, our appt was for 3.40pm, and in we went to the room with the big radiation bed. Immie started scrunching up her face and looking a little not convinced about what was going to happen. The ladies were being lovely, though Immie was having no bar of that, she began to get upset. I took her in my arms and whispered that she would not get her special biscuits if she did not lie on the table (oh bribery and corruption – gotta love it at time like this!!). She was up then quicker than a flash, lying perfectly still. After they lined her up, we all left the room and I began to yak on the speaker to her, trying hard not to say anything that would make her laugh and giggle or move. Imogen laid still and the whole radiation would have taken about 6 – 7 mins. I was so proud she stayed so very still. All the staff were surprised she was so very good as well. Afterwards she received a sticker for her chart to count off the days till radiation is finished; they made that for her at Charlies. (Sir Charles Gardiner Hospital). Imogen will have 12 treatments of radiation to abdomen area, she is being treatment to a very low gamma rate, this means the side effects are minimal.
Today Immie appt was at 11am, after a play with toys, it was her turn. She was a little nervous to begin with though after the first few minutes she once again laid perfectly still, with a big smile on her face. I sang nursery rhymes to her while she stayed in there, Yeap it was great entertainment for all, must remember that Wiggles cd for tomorrow. Afterwards we went to Midland shopping centre to meet Vanya and Cherrie for lunch, it was great to catch up. Immie requested her food whim for the moment - bun with chicken, carrot, cheese, and tomato (did she eat it...nah not really), then a strawberry milkshake (did she drink it....no she didn’t...not much changed there). Though Immies appetite has improved a lot in the past couple of days, so we hope it’s the beginning of the little eating machine to return. I will post the pictures of the Camp Quality etc. Christmas party soon, just need to select some from the 250+, surprisingly I was a little snap happy...something different.
Xx Fiona and the gang

Monday, November 17, 2008

Life's a journey

I was sitting here the morning, watching Immie giggle and be carefree roaming wherever those peg legs would take her. Could our life be any better?...our beautiful girl is soaring, kicking cancers butt, we have each other – an incredible love, a house over our heads, money to cover our bills, Jason’s business is tracking well and we live in a great country.
I know I was a whinge bag last week, and I acknowledge that too is an important part of being a time strapped and emotional cancer parent or even “just” a parent. Though when you boil it all down, it’s not those things that I will remember when I look back on my life, it’s the moments that are etched in my heart, the love I have for my husband and for my children. The moments when Immie grabs me by the face and pushes her face into mine and says “I love you mum”, or the moments when Kody tells me I am the best mum ever and the moments when I catch Jason with the look of awe on his face for what our family and life have become and how lucky we really are.
My sister sent me this email today...how true are these words –
listen up and take them in...for you never know when your journey may be up...
..."...Life is like a train ride...we get on...we ride...we get off..We get back on and ride some more...
There are accidents and there are delays. At certain stops there are surprises.
Some of these will translate into moments of great joy, some will result in profound sorrow.
When we are born and we first board we meet people who we think will be with us for the entire journey. Those people are our parents!
Sadly, this is far from the truth...our parents are with us for as long as we absolutely need them. They too have journeys they must complete. We live on with the memories of their love, affection, friendship, guidance and their ever presence.
There are others who board the train and eventually become very important to us, in turn.
These people are our brothers, sisters, friends and acquaintances whom we will learn to love and cherish.
Some people consider their journey like a jaunty tour. They will just go merrily along.
Others will encounter many upsets, tears, losses on their journey. Others still will linger on to offer a helping hand to anyone in need.
Some people on the train will leave an everlasting impression when they get off. Some will get on and get off the train so quickly they will scarcely leave a sign that they ever travelled with you or ever crossed your path.
We will sometimes be upset that some passengers whom we love will choose to sit in another compartment and leave us to travel on our own. Then again, there's nothing that says we can't seek them out anyway.
Nevertheless, once sought out and found, we may not even be able to sit next to them because that seat may already be taken. That's ok....everyone's journey will be filled with hopes, dreams, challenges, setbacks and goodbyes. We must strive to make the best of it...no matter what.
We must constantly strive to understand our travel companions and look for the best in everyone. Remember that at any moment during our journey, any one of our travel companions can have a weak moment and be in need of our help. We too may hesitate or even trip. Hopefully we can count on someone being there to be supportive and understanding.
The bigger mystery of our journey is that we don't know when our last stop will come.
Neither do we know when our travel companions will make their last stop. Not even those sitting in the seat next to us.
Personally, I know I'll be sad to make my final stop...I'm sure of it! My separation from all those friends and acquaintances I made during the train ride will be painful. Leaving all those I'm close to will be a sad thing. But then again, I'm certain that one day I'll get to the main station only to meet up with everyone else. They'll all be carrying their baggage....most of which they didn't have when they first got on this train.
I'll be glad to see them again. I'll also be glad to have contributed to their baggage and to have enriched their lives, just as much as they will have contributed to my baggage and enriched my life.
We're all on this train ride together. Above all, we should all try to strive to make the ride as pleasant and memorable as we can, right up until we each make the final stop and leave the train for the last time...."...

Friday, November 14, 2008

The answer...

I sit here listening to the Immie...chanting I do believe in Fairies...maybe a little tooo much Peter Pan....hey whats the harm???...I am so grateful too listen to her chanting....
We went to clinic on Thursday, we arrived at about 11am and were informed that there was no one to see us because it was BIG Meeting Day...or goldfish bowl meeting (as I have meintioned previously). OHHHHHHHH...I said then started to cry....I had not felt emotional prior to coming, but suddenly the whole almost two years of Wednesday clinic became just TOO much. Fabulous Sister Lee, was not sure what to do with me. Suddenly Dr Bendict was made avaliable, in we went and then I just started bawling (not sure where that came from). I began going on about how Wednesday clinics are just soooo CRAP!!!!...we could not even get a chair to sit. I'lI will be writng a letter to Cathy Cole (the boss), about how unfortunately we all don't want to acknowedge it but the one clinic on Wednesday morning is getting too small for all the tumor kids. I hate it, it is crappy to see all those kids, waiting, bored to bits, they should be out enjoying life when they are not in hospital.
Anyway after me ranting and raving...I settled down then I had everyone asking how I was....now that was a little toooo much. After unblocking the ng tube and getting the form into for requesting the broviac removal, we left, to walk to the car and wait for Granma. My mum watched Immie while we went to Charlies for consent for Radiation beginning on Monday.
Cathy the liaison officer, arrived to be a third person in the room in case we had questions. I am think she may have thought she pulled the short straw when I started going on about the miscommunication and mismanagement of Wednesday clinic, and other polices on the ward. Now don't get me wrong I am eternally grateful for all they have done for our Immie, I can just see so many ways that would make their job and our journey's so much easier.
We went into see Mandy Taylor, radiation sounds on paper and word like a walk in the park. Immie is only having radiation to her middle, the long term effect could mean she is a little shorter, a lot less side effects then chemo or mega therapy. We have heard stories of masks and being bolted to the table when radiation is involved, we are grateful for Immie's little exposure. Radiation will help be the mop up mob for Immie's cancer, whipping those cells even thinking of being cancer, sounds great to us.
Immie went to kindy today for half the day, I ensured that there were no snotty kids or chicken pox kids, and ensured the relief know what we had to be made aware of. Jas and I decided we can't keep her wrapped up in cotton wool, and she is craving other kids (mums not quite cutting it). Kindy twice a week, will be enough to kerp that craving. We also had a K-I-T-T-E-N lined up prior to finding out it was not a good thing, through my cousin Karly. We have decided to stay with that plan, but wait till Christmas to have it living full time at our house. Immie will then be almost three months out of stem cell, we can't keep the beautiful girl, locked away from everything she has wanted for so long. Everyone she sees she tells "I am getting a kitten for Christmas"
Here's to making many happy memories leading up to the Christmas season
Love you all
Fiona and the Gang

Wednesday, November 12, 2008

Sometimes....there's days like this....

So stem cell rescue is over what is next??.....
OK here's where I chime in usually with something positive and witty (come on humour me!!), though not today. I am sure you all know there are some days when you just feel like SCREAMING or maybe just hiding under your doona or maybe just wish that your day was BORING...and normal like pre cancer diagnose. Well all, today for me was that day. The morning was not too bad, everyone slept in, so I got some quiet reflective time doing the dishes, watering the vegetables, disposing of the dog poo...(oooo nice visual), packing the entertainment bag for out patient clinic...you know just normal, and very relaxing stuff (lol).
Then the crew awoke, Kods first, telling me off for letting him sleep in (such a mean mummy) as now he was going to have to rush around. That same mean mummy made his lunch - guess all is forgiven. Then came Jas and Immie, Immie a little grouchy. A mad dash around to attempt to get there early enough for parking at the lucrative Hospital car park. Dropped Kody off, came back picked Immie up and we set off travelling to the PMH resort. Arrived....no parking...paid for parking...down to the ward, finger prick for Full Blood count, Blood centre - flat out, away for coffee ( you would think in a hospital they would have worked out how to administer coffee through an IV drip lol ,we would all be putting our hands up...tho mainly my little sister).
Blood test done back to the ward at about 10am, visited the inpatients and staff, had a gasbag with lots of people including Laura (aka Vivienne) and the gorgeous Damon. Back out to clinic to discover Immie counts are SUPER...smart cookie...Then I asked whether I could just see Maryanne (our oncologist) to organise the removal of the broviac, so that Immie does not have to go through any more dressing changes and can get to swim. Yeah sure.....Off to do the dressing change, with Immie screaming her lungs out (noice : ( ). Come back and there is great discussion about why not all the blood tests that were listed were not done....oh dear...oh we need more blood...and actually can you now stay....sure I say, because there is actually a few things regarding meds that need to be discussed and the broviac removal.
We sit down and gas bag some more this time with some other parents and the fabulous clown doctors, suddenly it's 11.45 and my paid parking runs out in 10 mins. Back to the car to pay for more parking, back to the ward, and we wait...it gets to 1pm, and I get up and tell them we are leaving, as we have other appts (me with the docs about my motor vehicle accident). We are asked can you come back the afternoon...ahhh no...tomorrow, possibly, but we have two appts one is to consent to the radiation and has to been done without Immie there - no distractions( after all the chemo and meds that have been pumped into Immie their is fat chance of us not consenting to the mop up team aka radiation for Immie's cancer). Oh just bring her here (to the hospital) and we will put her in a isolation room by HERSELF and then come back and pick her up after you do the consent....ahhh NO, there is FAT chance of that happening. Sometimes I wonder...Immie would be "what the?"..you have never left me by myself at the hospital before but now you leave me there.....god knows what that little brain would think.
We also got told today that.....Immie should not really be rushing to go back to Kindy (naughty mummy), or any huge public place...or go anywhere with no shoes on, or have a kitten, (and some other stuff...stopped listening after the no kitten) we have to be extra vigilant for the NEXT SIX MONTHS!!!......argh!!!. My heart was breaking for her, after all she has been through we are meant to keep her in a bubble...I will never be able to protect her from the worse sickness or disease...being cancer (or so I thought).
Anyway back home....ranting and raving....I just have had enough...off to the Docs who has referred me to another physio...because I have time between the dishes washing and disposing of dog poo.
Then home to help Granma, prep Kodys for his PEAC presentation next week, art art art...and then Kody to music...oh..where is your book..ohhh I have not had that for weeks....what are you actually learning at music....oh this and that...(now that restored my faith in the four terms we have been sending him there). Oh he could remember one song.....when the saints go marching in ....is that the only song music teachers teach!!!!. Don't worry, Granma went and sorted the teacher, who has only come on this term, and changed the starting times three times now.
Now I am back home having a big glass of bundy and coke...now that's NOICE!!!! thanks husband...
Sorry for the whinge.....but sometimes its necessary
love ya all
Fiona
P.S.
Enrolled in Uni yesterday, while Immie went back for afternoon kindy (yeap came home for the feed then went back - super girl I tell you). First semester - three units, second semester - five units (the norm is four), hey whats a little stress, unfortunately because I have had so much time off...it maybe what I have to do...oooo don't come near me then...you have been warned lol....

Tuesday, November 11, 2008

Our Wonderful Busy Weekend


Hi all

What a weekend...busy busy...We went to the Ward 3b Fun and Fashion Parade on Saturday to watch the fabulous Nicole. It was great, it was so fantastic to see everyone in a relaxed setting. Imogen was lovely to all, which is a vast change to how she has been while in hospital and for clinic visits. It's great that they got to see the lovely, smiley and cheeky Immie that we are lucky to have at home.

Nicole did a great job at modeling her clothes, and looking super cute. While we were watching her Immie decided that she to would like to have a go. We explained to her that only some kids who had done rehearsal and practised could do the parade and maybe she could next year. We never in a million years dared to dream just 26 days after stem cell rescue, that she would want to, or even be well enough to participate.

In the intermission we went to see all our beautiful fabulous nurses, and Immie told Nurse Lizzie that she would like to have a go at walking on the catwalk. Before we knew it Immie was on the list to go in the catwalk, walking with Nurse Joe and Daisy. After a long break and much fun running up and down the catwalk with the kids, Imogen went back stage.

Nicole came first in her beautiful dress, then Immie with one of her all time favourite nurses (that she told me she loves : ), Zac. It was perfect the smile on her face was remarkable. Everyone was surprised she had come out, they all keep saying but didn't she just have a stem cell rescue, not long ago. We were very proud.

Then Immie disappeared for a while, Nicole came back, but no Immie. Then the second last lot of pairs of models came out for their grand finale, there was Immie with Karla (her much loved play therapist) and Karla's son Lachlan.

The last models to come out were the beautiful Nurse Meghan and Nurse Julie dressed as brides, stunning, as they are both getting married this year. Then last but not least Carol (Play therapist) came out in a dress, purely made from hospital supplies (noice!!!).

Immie did not want to go home, or even stop modelling though at 8.30 it was time to depart, to the nearest take away for some yummy food.


We are so glad Immie was well enough to attend, it was incredible, we hope it made a lot of money for the ward.

On Sunday morning Immie and I went to the convention centre for a magician show, we arrived and got a seat. Then after being there for about 3 minutes, Immie managed to get her finger stuck in the chair (the same as Nicole did when we went to Dora the Explorer). Imogen got so upset that she chucked up, all over me and herself. Yummy, chucked up pediasure. She still wanted to stay, so we went back to the car to get changed. Back in to watch the magician show, which was pretty good. Then back to the car park to get fleeced for parking argh!!! $9.50 for 2 hours!!!.

Yesterday we picked a very tired Kods up from Subiaco - Camp Quality, he had a blast on camp to Dongara and got to do a lot of wicked stuff. The best thing he said was the circus. When asked whether he missed me, he replied nah I didn't miss anyone...how rude....: P...I was having too good a time. Very happy that he enjoyed himself so much.

Took Immie to kindy the morning to just do a puzzle and introduce her slowly to Kindy again. Well, now here I sit at home at 11am by myself!!!!. Imogen decided she wanted to stay till lunch time. I was very shocked, especially seeing both the teacher and aid are still not back from sick leave. I will go pick her up at lunch, as she needs a ng tube feed. She is so amazing, she loves throwing you off your feet sometimes, just when you think you know what she is going to do Princess Imogen surprises you.

Must go enjoy my cuppa and magazine

see you round like a rissole xx

Fiona and the gang


lots of pictures just could not choose....please be patient with the photos downloading to proper standard

Friday, November 07, 2008

Camp and Radiation


Ohh to all all you people who said Radiation will be a walk in the park and that the ladies there are fantastic and great......YOU GOT IT SO RIGHT!!!!

Today was Imogen first initial Radiation appt, to met the machine and then hopefully get the planning CT scan done. Well, I tell you the morning I was not feeling to optimistic Immie woke, in the most grumpiest mood she has since being home. We rushed around, getting all the last minute things ready for Kod's Camp Quality Camp and then taking some pics of him in costume. You have to click on to the link below to see the effort Kods put into the mask for his costume (a surprise till you look - lol). Kody has been very excited about going on camp, he started asking to pack his bag on Wednesday. They are going to the Blessing of the Fleet in Dongara for four days, 20 kids and a heap of wonderful and incredible volunteers. They will have a blast they always do on Camp Quality Camps. Tho just quietly I already miss him, its awfully quiet around here. We made the mad dash to Subiaco in peak traffic arriving at 9am.

After registering Kods for Camp we waved him good bye, and yeap went quickly to Officeworks (hey I was just down the road from it, and have not been there in oh..a week and half). Then back up the road we actually managed to walk pass the bus as it was just leaving so we really did get to wave good bye.

Back to the crazy carpark, and when we had packed everything in the car and of course had twenty cars backed up behind us, Immie pipes up " I need to go to the toilet", argh!!!....Of course there was not turning back...that car park is savage, we did a mad dash to Charlies (Gardiner Hospital). We found the " F " Block with ease, mad dash in for a pink parking permit, then a mad dash to the toilet. Then we strolled out as we were about 45 mins early. Sorted all the bags of entertainment in the car, then back in, to check in.

We had not been waiting long and we were approached by a lovely lady. Down to the CT scanner machine, met two more great ladies. Then Immie performed like a star of her own matinee. She jumped up on the bed, turned this way then, that, let them mark her with texta (no we don't need to be tattooed or have a face mask made). Then Imogen laid as still as a statue, while we all went out of the room and I chatted to her on the speaker. It was amazing, I was so proud of our super girl. They got all the pics they needed, so we then went and grabbed a wheel chair and got wheeled over to the new cancer centre. That is were we will be having the radiation. Immie was a little worried about the wheelchair to start with and we soon discovered why, when she asked "if I sit in the chair will you have to cut my leg off" (the things kids pick up is incredible, there are quite a few kids in wheelchairs on the ward with no leg/s).

Anyway we met some more great ladies over at the cancer centre and had a ride on the table. Then on the way back Immie spotted a Tinkerbell balloon, Imogen is besotted with Tinkerbell and the movie Peter Pan, she can constantly be heard chanting "I do believe in Fairies", the lady at the radiation went back and bought it for her. How nice is that!!!!. After that the wheelchair returned, we went off to find another of Immies whim, Red rooster (did she eat any - nope) and then on to Granmas.

We then went to Spotlight, and then the Licensing centre to finally sort out my license that was stolen a while ago.

Home again, Immie need a fix of Peter Pan,

Fairy Dreams to all, remember lots of clapping and chanting "I do believe fairies" it keeps the fairies alive,

Love Us

Thursday, November 06, 2008

We are so lucky xx

Hi all
Just wonderful counts today from the beautiful (yet grumpy at being at hospital again) girl at her clinic check up -
Platelets were up to 50 from 39 on Monday
Haemoglobin was 85 now 84
Neurophilis were up to 1.35 from 0.87 on Monday
Weight 15.6 kg up from 15.4 kg
No more potassium tablets, as the potassium levels are all fab.
No more stem cell clinic back to normal Wednesday clinic.
The doc, oncologists and nurses are amazed how great she is doing, we aren't we already knew how incredible our girl was and is.
First initial radiation appt tomorrow, maybe a cat scan to help line things up, we will have to wait to see what side of the bed Imogen wakes up on to gauge her mood and her cooperation levels for the day (lol).
Prior to that we're taking the fantastic boy Kody to Camp Quality (Subiaco) so he can go on camp to Dongara for four days - Blessing of the fleet - Hawaiian is the theme. Kody's costume is Stitch out of Lilo and Stitch the movie have to take a picture tomorrow, he has done a great job on the mask.
Going to the Ward Three B Catwalk show on Saturday to help raise money for the ward, our friend little Nicole is modelling in it can't wait to see her should be super cute.
Off to a magic show on Sunday, that Kody got tickets for from school, but unfortunately he will be away so Immie, Jason and me will be going.
Hope this reaches you all as wonderful as it leaves us,
Life's good!!!
Love Fiona and the gang

Wednesday, November 05, 2008

Friends and Assembly

Hi all

Kody's assembly was a hit, very funny, they sang Walk like an Egyptian then performed a play, great entertainment. They did a fabulous job. The costume's were made by Mrs Hodgson (Kody's teacher) and the students. Imogen really enjoyed watching and giggling at the assembly with me, Granma and Jason.

Though most the most exciting news for the day was when my fab, artistic and creative son, Kody arrived home with paperwork for PEAC extended learning for Art students. He has been selected by the schools Art teacher as a talented art student. In a few weeks he will have an interview with PEAC to discuss three works of his art, and then we find out if he has been accepted to the program for next year. Cross all your fingers for him, will let you know the dates when they get closer. We are so proud of him for getting selected.

Yesterday after the assembly and after popping into Immies kindy (where we found out that both Immies teacher, the lovely Mrs Barker and the teachers aid, the wonderful Mrs McDonald, both weren't there and won't be there for a little while as they have both been to hospital for ops..whats the chances!!!), we went to see Penny (immie's best buddy), her brother and sisters and the ledgers new chooks!!. Imogen thought it was wonderful, and was very cute, giving the chooks a cuddle and then held Rupert's Lizard. It was great to see them all.

Everyday away from the hospital, Immie is getting back her spunk and cheekiness. I know she is getting better from the moments and conversations we are having together. Today we had a electricity outage, it made us realise how much power we actually rely on, and it gave me and Immie time to catch up on learning every nursery rhyme. Then special playtime with Granma (as there was no distractions from phones, Internet or TV) , when I had to go to the dentist for two fillings. The clear sign Immie was feeling better the afternoon, was when she started talking about how she is getting a cat soon. Imogen has wanted a cat for a long long time, just prior to relapse we were about to get her a cat. Then the relapse kicked that idea, because of the germs and bugs cats carry. My cousin Karly has a beautiful kitten waiting for Immie, just what she has requested a black and white boy cat which she has already named Milly, that needs to arrive in a big box with a bow (a girl who knows what she wants - what a surprise!!!). We have to wait a few weeks for it to be the right age. I can't wait to see the look on her face....

Love to all

Fiona and the gang