Immie turns 5 with HAIR!!!

Hi Peoples

Well had to update pictures from our gorgeous girl Imogen’s 5th Birthday. I wish I could say that I always knew she would reach 5 or that the last 5 years have been a breeze, though I can’t say I was always confident in these areas. I can say we are the proudest and most grateful mum, dad and brother of Imogen. She is the most amazing big lil girl, the way she has strolled, jumped, giggled, smiled and looked adorable through especially the last 2 and 2 months, has given us hope and strength. Thankyou Imogen for teaching us incredible lessons and showing us the strength we have personally and as a family together. We love you baby girl; you are our dreams and wishes for our future together.

Imogen’s day began with the morning alarm clock of Milly meowing at her door at 6.20am. Then presents, big hits were the musical box, the train set and the cd player. Waffles for brekkie. Then off to the pool for duck diving, backwards somersaults, bombies and birthday cake (of course). Home for the Granma and Granpa suprise...a new swing!!!. Lunch with my family. Then more playing with toys, then a delicious dinner of rice bubbles and lemonade – NOICE!!!. Immie did all of this while taking Accutane, herbal meds and amoxicillin (incredible kid).

Imogen’s big break from the resort was short lived...buggy wee equals UTI, caused us to returned and major antibiotics was begun. 3 times to the resort in three days...mmmm. Then back Tuesday to pick the antibiotics up. Tomorrow she has a kidney ultrasound to look for a reasoning of her UTI. Then Thursday speech therapy.

Kody has arrived home to an explosion of noise aka Immie. Kody had the best time at the Camp Quality Rock star camp, he entered the car blurted out in 15 minutes all the awesome stuff he had done then collapsed. Camp Quality and their supporters do an amazing job to bring laughter to the kids with cancer and their sibs. We missed Kody a lot, it’s incredible to realise how much he does for and with Immie especially when he is not around. I am sooo lucky to have two amazing kids xx.

Our aim to collect the baby Beans cord blood, has reached a few stumbling blocks. We have discovered the best place to have the collection is King Eddies, tho it has been a head ache as we need to be signed off from the hospital. Not too hard.. you would think, but because they would never use cord blood for Immie treatment the answer came back No. Together with our doctor we are now trying other ways to get it through. Unfortunately there is not a public cord blood storage facility, so the only way is to go private in WA and that is not the best solution when PMH would not even look at using the cells then. Now, we are hoping we never, never have to use these cells tho unfortunately we know kids do get sick and would feel better having the safety blanket. Time will tell...

http://picasaweb.google.com.au/theholmesgang

Photos of Immies Birthday click above.

Thanks for dropping pass again

Love and Hugs

Fee and the gang

P.S. Please surround Josh’s family “The Wisniewski’s” with love as the struggle through their hardest days. Thinking of you always Hannah, Peter, Josh and Anika xxx

Catching up with us xx

Hi all

Well I have been getting the hard word from some of you as I have been a little slack about updating the blog lol : P. Up till this week I actually did not have much to update, which to us pure bliss, no scans, not lots of appts, no troubles, we have just been cruising : ).

What have we been doing??. Immie did have an appt at the Deaf school, which was very informative. I was really amazed at what hearing aids can’t do. I never knew how many limitations they have and the fact they are still only able to be used for hearing language in a quiet room face to face a metre apart. Ahhh...not exactly how Immie spends most of her day at Pre Primary, 28 other lil people surrounding her with plenty of excitement going on!!!. When term two begins the hearing school will be sending out a teacher to assist Immies amazing teacher, in working with the hearing aids. I also attended two excursions one for Imogen to Whiteman park to the animal park, were we had heaps of fun and Imogen got to feed the lambs. Then Kody’s excursion was to the Freo Maritime Museum, that was actually very interesting, the 1/7 of the ship they have stored in there is huge!!.

Immie also went to get her vision checked after the school health nurse, was slightly concerned. I was very happy to hear from an amazing optometrist that all of Immies sight is fabulous. Though it would be an advised to either check again in 6 months or get her glasses to help support her while she is lil and learning all the important early years’ knowledge. For once I was able to make a decision regarding Immie medically; I decided that the glasses for now were the way to go. We chose out a very cute pair with ladybirds on them, which was actually Imogen’s discovery : ).

This brings us to this last week, Imogen had her monthly check up to see whether she was ready to resume Accutane again for the second last cycle...and the answer was No. Her feet were still not cleared up enough. So Accutane has been delayed a week and we will make a decision next Wednesday to wether she is ready to begin. Unfortunately the side effects of this ugly drug will coincide with Immie’s birthday and party. This is something we could do without but have little choice over. The drug in Imogen system seems to be building up each time. Last month she had the dry hands, extreme peeling feet and cracked face, which meant we did not see the beautiful smiles of Immie for about a week and half. Jason and I are keen to finish the Accutane, and unlike the first round treatment where we were nervous to be off treatment we are actually looking forward to the day when Immie does not have to swallow any more tablets or endure any more poking and prodding. So that was Wednesdays clinic, then we received a call on Thursday as Imogen’s urine sample had grown a bug, back in we went with another urine sample. Then back again on the Friday for Imogen’s first speech, that was painful to listen to as you don’t realise as a parent how much you adjust yourself to understanding your child’s speech. The end point is Imogen speech, grammar and saying tricky words is not that crash hot. Now Imogen has appt booked each Thursday morning at the resort for speech. The speech therapist actually thinks that her problems are not just from treatment but also from the many ear infections she had when she was very little. That’s all for now on all the updates on Immies medical marvels : P.

In the normal dull boring world (which we absolutely love), Immie and Kods finished Term One of with a bang. Both attended the school disco and had a blast. Kody also received a merit certificate for his project which are like hen’s teeth at Alinjarra. My mum flew out to Tasmania for a workshop on papermaking and we missed her like crazy. We had a wonderful Easter in Narrogin with my parents and Granny and Granpa, we all loved it and enjoyed the break. Then we headed to Hyden to see the other half of the Holmes gang, and give my beautiful niece Tayah birthday wishes. It was great to be able to see them all and Jacinta’s big belly : ). Then this Wednesday (same day of clinic) we headed back to Perth , with a few lost moments, we arrived an hour ( 5 hours instead of 4 – yuk) after we were meant to...tho still made it to the hospital on time.

Our Bean’s testing all came back low risk, which was a big woohoo. I promise I will upload some pics of the scan to the picassa web album link below. I have still been soaring through this pregnancy, just tired and now my pants are getting way to tight to fit hahaha. 17 weeks along – incredible.

What’s next....well it’s the most important day of the year for our beautiful girl, Imogen turns 5 on the 26th of April. WOW is the word that sums that up. She will be spending her birthday with us, probably at the pool and then has a birthday party on the 3rd of May with friends, family, a pirate and a fairy. I can’t wait her first birthday for two years with HAIR!!!!. Term Two will begin, and we have another 4 weeks of no appts besides speech – NOICE!!!. Then Imogen’s last dose of Accutane...can’t wait!!!. We will also have a scan to see our lil bean again; this will be the last time till we official get to hold him or her in our arms. And most importantly till we blog again we will be making the most of life, laughing, smiling, giggling and loving every bit.

Love to all

The Holmes Gang

see the below link for more gorgeous pictures of Kody, Immie and our Bean
http://picasaweb.google.com.au/theholmesgang

Truely wonderful music to our ears : )

Hi all

Well you can tell the news is absolutely fantastic as I am updating so quickly. Today we had results and check up clinic. The results amazingly confirmed from the MIBG “Mr Big” scan, there is no evidence of disease and most importantly no evidence of new disease. Yay, Yay, Yay, to a cancer parent this news is music to our ears, the relief that our beautiful girl has dodged another bullet. Kicking cancer's butt big time!!!. We are so proud. Now she continues on doing Accutane for another 3 cycles, two weeks on, two weeks off. We are going to finish this protocol off completely this time, no maybes.

Though it’s not just our Immie who has made us proud, our incredible boy Kody has been hard at practise to perform the Hauka at the school’s harmony day. Yeap our very white skinned boy, with no shirt on in front of the school, performed the Hauka with an assortment of New Zealand and other boys yesterday. It is one of those moments as a parent you are in total awe of your child and what the 10 years of parenting has developed into.

We are so blessed. Thank you to our guardian angels, Thank you to the spirit angels especially Blake, James and Savannah for looking after our girl and Thank you to you our supporter, our friend, our family.

Love to you all

The Holmes Gang

http://picasaweb.google.com.au/theholmesgang

Kiwi boy

P.S. I had my first antenatal appt at Ossie Park Hospital today, all was well. Even scored a referral to the dietician apparently with my BMI being on the high size, and because I am so FAT, I need to keep my weight in order (LOL).

P.S. Please send love and support to two beautiful families, Oliver and his gorgeous parents Karli and Simon who are back at the resort getting a new port (3rd one) as it has dislodged. Also to gorgeous Josh, and family Hannah, Peter and Anika who are having a challenging journey at the Resort.

March the crazy month!!!

Hi to all our avid supporters,

This update is for you (especially you Karen and Margaret - My mum's friend : ). I must confess Jas and I have been having a hard time this month working through our apparently normal life that constant throws us off balance.

Immies 2 year battle with the beast was celebrated as our grateful day for having her here with us. We all went to the pool including Granma. Sunday’s mornings at the pool have become our tradition, it’s so nice to drop out of life for 2 hours every Sunday – no mobile phones, just laughing and lots of fun. Immie now swims like the fish she was 2 years ago. She has perfected duck diving and pulling arms. Kody always eggs us into going to swim in the much cooler pools outside...but bombies are fun, especially in the diving or is that “belly flop” pool : P.

So another year was crossed off the countdown to the day we can finally breathe again. It’s funny a lot of people no longer ask how Immie is going, I think sometimes that maybe EVERYONE is totally over it. Personally I don’t blame them, but unfortunately we don’t have that option. I am sounding like such a sad sack, but I just can’t help it, call it the baby hormones though I prefer to just call it “I HAVE HAD ENOUGH!!!”. Ok enough venting, let’s focus on what has actually been happening.

Since we updated with our gorgeous news, life has been crazy busy!!!. We had two cancelled MIBG scans due to the nuclear medicine sent from Canberra, not arriving correctly. This lead to Immie being constantly filled with iodine, the medicine that helps protect her thyroid during the scan. Granma (superwomen) took Immie to have her nuclear injection on the Tuesday, 10th of March an appt booked for 11am that actually occurred at 2.30pm (argh!!). Immie finally had her big scan the MIBG scan on Wednesday 11th of March. The MIBG scan runs for an hour and half and requires Immie to lie as still as a statue for the complete time. This was Immies first time without a GA, she was an absolute star. She was allowed to have a little relief (1 -2 mins) between sections as the assistants moved the machine. We are very happy that it is now done, and we have an appt next week on Wednesday to receive results.

Imogen has also completed another round in the ring with Accutane, this time her poor face took a battering, by the end her skin had broken down and was red raw. Though do you think that bothered Immie – nah!!!. Would you believe we start again next Wednesday, geez it’s frustrating that the two weeks go so fast when Immie is off the drug.

What else...Jason and I celebrated 6 years of marriage, it’s been an amazing 6 years, here’s to many, many more incredible year’s together. We were lucky enough to go out to dinner to celebrate thanks to our friends Dana and Jason xx.

We attended our beautiful friend Nicole’s 5th birthday on the weekend, a Dora and Diego theme, lots of fun for all. Well Done Cath!!!.

Jason volunteered (lol) to go on a scout walk, with Kody and his scout friends...such commitment. Good to see Jason and Kody doing their best!!!.

I’m back at uni doing three units, it is a lot of work, and until our Friend Kellie came to give a hand on Sunday I was a little worried about where I was going with it all. Now I am on a clear road to successful lesson plans and essays. Positive, positive!!!

What’s to come in the next couple of weeks...This weekend we have a surprise party, and then my Dad’s birthday and baby Cooper’s 1st birthday on Sunday. Next week I have my first initial appt at the hospital clinic, we also get to say hello to the new Holmes addition with an ultrasound on Friday. Kody has scout camp next weekend; this is the beginning of Kody’s camp career. He has two other camps in April. Both Immie and Kody have school excursions in the next couple weeks. Immie also has an appt with the hearing school, so we can get the most out of her hearing aids. My calendar is struggling to hold all of these happenings!!!.

Well this is Fiona signing off, hoping next time I visit I am not such a sook : ).

Thanks for the love and congrats all send regarding our beautiful news.

Love Us

http://picasaweb.google.com.au/theholmesgang

lots more photos of us

A new suprise!!

Guess what!!!,

we have exciting news that does not relate in any way to the resort or gorgeous Imogen..

WE ARE PREGNANT!!!...(well actually I am pregnant ; P )

8 weeks and 3 days, due the 27th of September (3 days prior to Big boy Kody’s birthday).

I know everyone tells you should wait till three months, but we thought stuff that we have had enough of melancholy news let’s share some very, very exciting news.

So begins another new journey and a very precious gift for all of us, another five year gap, someone must know I would not cope with many babies at one time.

Kody is excited tho determined that it will not be born on his birthday, lol we will see about that.

Immie was very excited, as she came to the scan with us, and an exclaimed “We are having baby, You are having a baby, I am having a baby”. She often asks “what’s that baby is doing right now?”.....it could be a long seven months for one lil girl.

So Hurray and Yay for us!!!!,

Love to all
Fee, Jas, Kods and Immie.

Day by Day

Immie with her earrings aka hearing aids

Hi all

This week...has been...emotional.

Monday bought Angel James funeral, a beautiful service though heartbreaking for Vanya, Shane, Liam, Brent and all of us touched by this amazing kid. Rest in Peace, James Thomas.

Tuesday involved chores and trekking into the resort to pick up contrast for Immie's CAT scan on Wednesday. There was also fun, as we got to catch up with Karen, Shannon, Hailey and cute lil Dylan.

Wednesday began early as Immie had to have her contrast two hours before her scan mixed with ¾ can of lemonade. Who thought it would be soo hard to convince a 4 year old to drink lemonade at 7am ( or actually about 6.20am due to how long it took to get her to drink it all....about 40 minutes). Then we left for the hospital at 7.40am arrived at 8.20am- time for a coffee (YAY). Up to CAT scan, and discovered that Immie needed a injection of x ray dye which meant a cannula. She was a very very brave girl, just a little cry and ouch. The injection of the dye cause more concern due to the fact it was cold. Immie laid very still, and the scans were done super quick. Everyone viewing the scans looked happy; I hope that is a positive vibe. We won’t find out the any results till next week.

Then back down to the ward and off to do a finger prick (another ouchie!!). Then back to the ward, a very very quick wait (very happy). We saw Dr Phillips, and discovered that last week’s echo was all fine, tho the GFR had not returned any results yet. Imogen’s skin has all clear up and now she has resumed her Accutane, and we wait to see the side effects this time, every time is a little different.

The Dr’s will call us next week with the results from the CAT scan. Immie is no longer having her MIBG scan and injection next week, as there has be another new diagnosed neuroblastoma case (ARGH!!!!) and we were asked to give our appt to them. Of course we said Yes, as we know how urgent those first scans are, and another Nueroblastoma case is devastating. After we had finished our appt with Dr Phillips, we went in search of Beth to organise how we are going to get Immie to lay still for an hour and half for the MIBG (any ideas??). It is the first time we will be having the MIBG without a GA.

We finished all of that so quick that it left us with a huge gap between the times finished 10.30 am till the time the Hearing Australia appt was 2.15pm. Yeap there was a cancellation, so Immie got in early to get her “earrings” (Immies words), also commonly known as hearing aids. We spent a lot of time strolling the city streets and realised how boring the city is for young kids. Finally 2.15 arrived; we had a lovely audiologist, and got Immies earrings programmed to her hearing. She seemed quite keen about them to start with, tho was not that impressed a few hours later. We caught the cat bus back to the resort, pick up the script and finally began the trek home at 4 pm.

On the way home we had to pick Kods up from Key board lessons, thanks to Granma for dropping him there. Then home to collapse then reassemble for the Trombone meeting with obnoxious parents – blah!!. Then I arrived home again to collapse and fall into a deep sleep.

Thursday was Immie’s Mr Rener appt, we drove over to Attadale to discover that Lee was sick and they had tried to contact me once by leaving a message while I was getting school stuff ready – argh!!!. Back to school Immie went, full day of fun. Then after school Immie’s day care big friend Keeley visited. Immie was very happy and excited.

Friday, today was a full day of school for both my loves. Free Dress today to raise funds for the Victorian Bushfires.

This weekend will be emotional as we mark the fact that on the 22nd of Feb 2009, it will be two years since we heard those words...”We think your daughter has an aggressive form of cancer called Neuroblastoma”. When we look back on the last two years we are constant in awe at how much has happened in this time.

Also how much precious time we have had to be able to spend with Immie, with the help of hospital treatment and Mr Rener’s knowledge on biochemistry. We continue to stay strong and forge forward into the uncharted years of the future. We are confident that these two years of treatment will be overlapped with the number of years out of treatment in remission into the positive and amazing future.

Imogen will live a long, healthy and happy life.

Thanks to all our avid supporters, Family and Friends divided between past friends (that still surround us with love, you are now far and few between) and our new friends we have met on the way. Also to the hospital staff, where would we be without you ( I shunder to think : ( )xx.

Love to you all

Love The Holmes Gang

http://picasaweb.google.com.au/theholmesgang/DayByDay#

Granma celebrating her 51st birthday - hahaha

"Super Star" James

Hi all

I was not sure how to write about another incredible kid, James Thomas, gaining his soft angel wings and top position in the heaven Tee ball team after an amazing battle with cancer. I have written some words to express how we are feeling for his family.

I heard your voice,
And my heart begged I didn’t,
My soul broke,
The morning you rang me,
I never believed I could continue to feel such pain,
For you my fantastic friend, Vanya,
A friendship bought together by chance,
Your beautiful boy,
James Thomas,
Had left this land,
That once bought him hope and happiness,
To begin again,
With the other angels,
How could it be?,
We all ask why,
A forever unanswerable question,
Lays resting on our lips,
Though the lessons you taught,
James and all the angels,
Could never have been learnt,
Without the guidance and love you have given and shared,
Forever grateful we will always be,
To have known such,
Bravery, strength and Kindness,

Rest in Peace,

JT

James Thomas.

Sending Vanya, Shane, Brent and Liam strength, thoughts and prayers to guide them through the hardest days. You are forever in our thoughts xx

Love

The Holmes Gang

What's happening??

Hi all

Well I have been pretty slack with the updates, though the first ‘almost’ two weeks of school has flown by.

Kody has settled into school with ease, though in the last week the homework has upped the ante and as you can imagine he is not that impressed with this occurring. Kody has the same teachers, same class room and majority of the same kids. So instead of having to settle in again with new teachers, classrooms or students, it’s like they just had an extended weekend (of approx 10 weeks lol). He is also back on the bike after the accident, and riding to school every day.

He is also back to keyboard lessons, swimming lessons (with my awesome friend “taskmaster” Dana), Scouts and a very cool Art class on Saturday mornings (organised by Granma). Last week we received paperwork, stating that Kods had been selected to play a school instrument...he was picked to play the trumpet. Apparently they had testing done last year, and Kody obviously passed the rhythm test (must get that from me lol). Kody has grown up so much in the last year, and continues to amaze us with his humour and passion for life.

Immie has been settling into school like the star she is. Mrs Barker is amazed daily, by what she has picked up since last year. Immie also has the same teachers, classroom and majority of the same kids in her class (talk about making it easy for me to remember names and class numbers!!). She loves going to school, and is still only doing half days at least till the end of this week.
I would probably say her only difficulty is her lack of sometimes hearing and the kids in her class (not from last year) staring quizzically at her very short hair cut. Though this does bother Immie one bit, she continues on in her very happy and giggly life.

Imogen got castings taken for her hearing aids and had another (long 40 minute) hearing test at Hearing Australia on Tuesday last week. She was very good. Her appt to be fitted with the aids is on the 27th of February, as this was as soon as they could get her in.

Yesterday we went to the resort for Immies GFR (kidney function test), arriving at 8.30am to get the drip installed to allow to provide access for the GFR injection and the hourly blood collection. Imogen decided she did not want emaula (the numbing cream), as she hates the bandaids that are used to keep it on for the time needed. Immie lay so still while they put her drip in and jiggled around her veins finding the right way to insert the canula (Immie veins are all very crappy after so much treatment : ( ). Then off to nuclear meds to receive the injection, and then it was with a pray and a lot of hope for the unstable cannula to last the 3 – 4 hours needed. Thankfully it did, and after many visits from beautiful hospital people, we were off. Immie was given another week off Accutane as her feet have still not fully recovered. We had a wait of about an hour and half for the booked echo (cardio test); we filled the time by going to Megazone, the park and keeping the hospital canteen with a constant money supply.

The echo ran on time and we will get the results for these next week, though they are all routine tests. Next Wednesday Immie will have a CAT scan, then clinic to ensure she is ready to begin her third dose of Accutane. The following Wednesday is the big test, the MIBG the most accurate test to tell us the full story of all the treatment Immie has gone through since September 2008. We have an appt on the 4th of March for results. The waiting is horrid and extremely hard.

Fortunately the week before this, I begin Uni so that will be somewhat of a distraction. What else??, oh Kods and me were involved in another car accident on Saturday, a young guy ran in the back of our Daewoo, so more quotes and fixing needed. I had to go to the doctors and get checked out as I am still under a Motor vehicle claim for the Sept 07 accident. I was deemed all ok and was very happy about that.

Well life marches on we are trying to find a normal balance, a little more difficult than from the first time we were out on good behaviour bond for nine months. Tho we believe (or hope) that it will continue to get easier over time. We still believe we are so very lucky especially as we watch the news surrounding the Victorian Fires and Queensland Floods.

Please keep Immie in your thoughts as we undergo the tests in the next month, sending all you can muster for positive beautiful clear scans,

Love to all and a special pray and strength sent to all scarred by the Victorian Fires and Queensland Floods,

Love the Holmes Gang

More gorgeous pictures of our delights : )

http://picasaweb.google.com.au/theholmesgang/NewBeginnings#

End of January 2009

Well as you can see from the picture above "Baldy" is getting her fuzz back - very cute and a lot darker. She tells everyone its Black (mmm..maybe not that dark, though you never really know till it all comes back..geez I sound like an old timer to cancer - yuk!!!).

I can't believe it's only a coupla days till school begins again. Kinda big school for Immie, well full time after 3 weeks of staggered entry and Kody's in Year 5 wow!!.

Immie has the same teacher as last year which is great don't have to explain anything - yay!!. Kody's teacher and class lays in the hands of school gods till tomorrow I am hoping they get mixed up, as he has been with the same kids for about three years. There are plenty of kids to be shuffled around with as last year there was four straight Year classes!!. It would do him the world of good to get to know a few different kids. We picked up the new school stationery - I LOVE new Stationery (nutter I am : P) and got Immie her first school dress (how cute).

We have been keeping very busy this holidays, hanging out together, going to the pool, having sleepovers at the Ledger's (fun : )). Immie and Kod's caught up with the hospital OT's on Wednesday, they made pancakes and enjoyed lots and lots of noisy music. We are still waiting to hear form Hearing Australia, which is a bit disappointing though pretty normal in regards to the hospital and referrals. I would have liked for her to have had at least an intial appt prior to school beginning.

Immie has just finished her second dose of Accutane, this time was not too bad, think it may be to do with the high dose of Vitamin E we have been giving her. Though the worse bit was when all her skin started shedding off on the soles of her feet - ouch : (.

Ohhhh.....I almost forgot to mention Superman Kody, Kody thought he could fly last week and apparently he can't : (. Jas and him were riding down a big hill, and then Kods got the speed wobbles and end up flying through the air and landing in the dirt. This resulted in bruising his head, giving him a black eye and major scabs and bleeding on his face, though no broken bones and no visit to the resort. Thank god he was wearing a Helmet. Check out the photos, he looks a thousand times better now : D.

What else...not much Milly the cat has settled right in and is BF's (best friends) with everyone. I have founded my dream house in the hills in Mt Helena, everything we want, Queenslander on stilts on 5 acres...just not the right time. Argh...oh well who knows what will happen tomorrow : ).

Love to you all,

Have a great "back to school" to all the kids returning : D

Fiona and the Gang

P.S Congrats to Colleen and Jethro on the safe arrival of there new little boy, Tobin.

Also a Thank you to the angels for giving Josh scans that were better than anyone could imagine and more time with his family.

Check out the face 5 days later

more pics on picasa abum

http://picasaweb.google.com.au/theholmesgang

What did you say???

Well the results are in on the hearing tests, Immie has severe hearing loss from the hands of chemo the drugs that have given her life. It actually answered our question that she was not just being a "selective" hearing four year old. Her high pitch hearing was dodgy last hearing test prior to stem cell, it has been stable from then though. Unknown to us, it was then and is now labelled as severe, the second level prior to totally deaf.

Immie's middle and low pitch have taken a bashing from stem cell too.

When we arrived, prior to the test the audiologist started talking about contacting Hearing Australia. This gave me the warning that we weren't here for just a routine check up.

I honestly was not too fazed about the fact she has to have hearing aids, speech and a few other things involving. I am just so glad she is here with us and able to live a full happy life whether it be with hearing aids or not. Actually we have both come to that conclusion, after the initial shock.

Now we wait to hear from Australia Hearing, and I am gathering Immie's aid for school with now be a given, until she and the hearing aids settle in.

Say a prayer or send a positive thoughts for our tough, beautiful "peter pan" girl, that this the only tiny bump that gets in her way, of becoming a normal, boring (lol) kid again.

Love Fee

What's going on with our Peter Pan aka Immie

Hi all

Medically, Immie completed her first round of Accutane, it was very rough at Christmas. We were glad when it finished just before holidays. The side effects we encountered were mood swings (you dared to look at her some days), extremely dry skin, cracked lips and nightmares. These side effects varied from day to day. Then we had two blissful weeks, with only special tablets and drops to boost her immune system. Immie began her next lot on Wednesday, after a few hiccups (ok some major ones...grrr), we had the tablets and headed home. We also got given the “forgotten” Vitamin E, to help her skin which we soon substituted for a tablet form as the liquid tasted horrible.

Immie has a few tests of the next month, unfortunately going into next month when she will begin pre primary. Though they are before uni begins for me, you gotta take the good with the bad.

Hearing test is the first cab of the rank – This Monday. Then mid Feb, the CT scan and another check up to begin the third dose of Accutane, End of Feb, check in contrast injection and then the next day big MIBG. Then somewhere in there they need to fit an echo in (a test on Immies heart) and a GFR (to measure Immies kidney function).
We are feeling positive in regards to all the results, though it’s always bloody scary. I wonder will there ever be a time it’s not, I’d doubt it. We are trekking towards that end, but someday the path feels a LONG way away.

On February 22nd, it will be two years since we began, this emotional, incredible journey, that has taught us so many lessons, though has also given us moments of extreme sorrow and joy. Weird isn’t it, how live changing events can do that??, two total different emotions mingled together.

To nourish children and raise them against odds is in any time, any place, more valuable than to fix bolts in cars or designing nuclear weapons.

Marilyn French

Food for thought

Love Fiona and the gang xx

Josh and Immie

http://picasaweb.google.com.au/theholmesgang/Checkups2009#

Denmark is bliss : ) in 2009

Hi to all our fans (lol), family and friends,

After celebrating an awesome News Years with our good friends at the beach, we headed to Denmark on the 2nd of January. Jason stayed behind till Wednesday due to work, and then caught the bus down (much to everyone’s surprise I can actually tell you he enjoyed it : ).

We had a great time in Denmark (thanks mum and dad for the invite), we stayed at my Nana’s place that dad still partially owns with my Uncle’s. It’s gorgeous, plenty of space and a lovely veranduah. We all had lots of laughs especially me and mum, about what I am not really sure lol.

We got to visit the Tree top Walk (scary stuff, tho fun), Dinosaur World(lame, but Immie got to hold a bird so fun), Ocean Beach (lovely), The rainforest (as Immie named it, too much Diego for that girl – you may like to call it the bush), Boating on the river, ocean, by the river, The Blueberry Farm (yum), The Denmark Markets (perfect setting) , Green Pool (why aren’t all beaches like this???), The bakery (both : ), Every shop in town, Albany, The Witneski’s home and the local IGA (about a zillion times, did we eat, or what...WHAT Christmas is over???!!). It was one of the most relaxing and enjoyable holidays we have had, and the first long holiday we have had since Augusta, just before Immie was diagnosed 2 years ago. Told my Dad we would be back next year, he said he was going to Kalbarri then instead, I said that’s ok, we will go there then (super stirrer that’s my dad). On the way back we visted my Granny and Granpa, that was fun, the boys spent time playing pick up sticks (may have been a little cheating happening...I think??)

Enjoy the pictures they are gorgeous.

http://picasaweb.google.com.au/theholmesgang/DenmarkHolidays2009#

Since we got home we have been catching up with our lovely friends,
Dhani & Sam at the pool, Josh & Hannah at the Resort, Mr Rener, the true genius behind Immie’s health, Lisa & Cooper for a quick coffee, Nicole and Cath for a lovely swim and chat, Vanya, Shane, James, Liam, Cherrie and Kai at Vanya’s lovely pool and ice cold house, Laura at Burswood (it’s ok that was just me, no kids left in cars or taken to the casino : P ). Thanks all we had a great week, lots of fun, and lots of beautiful memories.

Love ya xx

Love The Holmes Gang

Checkout that hair, soooo soft : )

A New Year, new beginnings : )

Happy New Year Gorgeous People,

Well we always knew we want to do something on New Year's eve, but we did not want anything to heavy or crowded, just a quiet fun celebration with friends to rid ourselves of a very challenging 2008.

We ended up having a fabulous New Years Eve, by celebrating it in one place that Kody and Imogen love..the beach and with our good friends the Ledgers who we have known since Kody and Victoria were born 10 years ago. Perfect fit to what we were seeking for the ending hours of 2008. We chatted, ate fish and chips, the kids then swam, then we ate drumsticks, then the mum's chatted, the kids and dad's swam, then the sun went down to end another year while the kids ran around with sparklers and glow sticks. We all went home at about 9.30am, after in our eyes 2008 was official over, as Jason Ledger said the sun was down the year was over (liked that very much : ).

Last year was full of challenges, for not just us but for some many of our gorgeous family and friends. It seemed to go on forever, the never ending year has now been put to bed. We begin 2009 knowing it will be full of happy and healthy memories. Sure there maybe tears but let them be few compared to the laughter and giggles to come.

On a last note we are sending all our love to the Rossi Family, we sending you strength and love, and hoping 2009 helps brings love and happiness back into your life's. Love you guys and to all our fantastic new friends, Cahills', Thomas', Boutayre's, Wisniewski's, Ceglinski's, Barry's, and everyone else who has had an incredible impact on our life's in the last two years, we wish 2009 to be a year full of everything you seek and crave - good health and happy memories.

Love to all

Fiona, Jason, Kody and Imogen

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

http://picasaweb.google.com.au/theholmesgang

Merry Christmas to all our readers xx

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

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.

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 -

http://picasaweb.google.com.au/theholmesgang

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

http://picasaweb.google.com.au/theholmesgang

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 -

http://picasaweb.google.com.au/theholmesgang