A new day

Hi

Well, I had not reblogged before now as life with Immie had not changed a lot since the weekend. She was still having screaming fits of pain every four hours. Though after being in consultation with the resort last Thursday, Local Doctor on Monday (antibiotics prescribed as it looked like a secondary infection had occurred - two ear infections), Mr Reniet on Monday (detox and herbal medicines applied) and Second local Doctor visit (steroid sinus sprayer and phenergan prescribed), yesterday and last night we finally got some sleep. Too pinpoint what was actually wrong, who knows? I am just grateful for some sleep and hoping for continually relief for her.

Imogen is such a incredible and brave little girl, even with all the pain we still managed to see her smile, chatter and beg to go to school (much to Kody's disgust, who would WANT to go to school : P). After yesterday's doctor's appt, she went back to school for the afternoon. I was anxious to see how she would go (apparently she had a moment but was quickly distracted). On Tuesday the day previous Imogen and Granma went on a excursion with the school to the FESA museum, during this Immie had one of her screaming fits. Picture a huge fire building, a high pitch screaming Imogen, my mum with four other kids to watch and a bunch of people who had never experience Imogen's screaming = slight chaos. Luckily she calmed down after another dose of panandol, Granma cuddles and distractions from her fabulous teacher Mrs Barker.

On that note I must gratefully acknowledge Imogen's teacher and aid, Mrs Barker and Mrs Mc Donald for the fantastic job, love and support they give our Imogen and us. Imogen has had both of them as her teacher and aid for the last almost two years, in that time they have assisted Imogen to reach many school goals and create and establish her absolute love of school. A big Thanks to Mrs Barker and Mrs Mc Donald.


Master Ashton and myself checked out of Osborne Park Hospital (OPH) on Saturday afternoon. I should actually rephrase that, we went sprinting from the OPH building on Saturday afternoon. After spending a lot of time in hospitals you get incredibly good at packing up very quick and getting out of there. Ashton's numbers for jaundice had decreased enough for the pedestrian to be happy for him to go home. In the pediatrician words "that lady needs to go home" ( I had told him the day previous between tears about how we had just got home from PMH that day). Home we went for a glass of wine and some brie cheese : ). Ashton has been very good, feeding every four hours, I have been able to get a little sleep between feeds. It's amazing how you forget the intensity of those first few weeks of a baby's life. The child health nurse came yesterday and declared him a perfect baby. My sista Livi arrived Tuesday from Kalgoorlie, and has been a huge help...making sure I get to have some rest during the day as well. We are so grateful for family xx.



Kody...the fantastic big boy, turns 11 next Wednesday - wow. I really can't believe it, it just seems yesterday he had his 10th Birthday. Kody has been busy..busy with trombone, choir, drawing and creating all sorts of things. He has been fantastic with Ashton, he loves having a new baby brother. As always he has been very tolerate also with the very grumpy and bossy Imogen, Kody is such a great kid.

Well I think that is about all,

Thanks again for the support and all the positive vibes and prayers,
all of them give us the strength to continue on giving Imogen all the natural medicines she requires (no matter how they taste : P), and the hope we need to provide a normal life for Kody, Imogen and Ashton.

Love
The Holmes Gang

All in an average week???

Just one normal day??

As most of you know, the last three – four weeks for the Holmes Gang have been a little like a rollercoaster – filled with mixed emotions. Devastation over Immie’s relapse – incredible joy on the safe arrival of Ashton.

This week – Ashton’s first week on the planet has not been has simple or relaxed as we all hoped. The week began with rushing around picking up laybys as Ashton arrived two weeks early and my head has really not been on the arrival recently... especially not a early arrival of our beautiful boy. My fabulous mum drove Ashton and myself around collecting the shopping. Visits from Nana and Pop (Jason’s parents) on Monday.

Tuesday involved Ashton’s needles and a hospital visit, where I sat with a huge smile on my face as I was at the antenatal clinic with a baby, while all the other pregnant mums glared at me : ). Wednesday morning was the quiet before the storm...At lunchtime Immie had developed a huge head ache, though after some pain relief stayed at school. Then the homecare nurse arrived, and suggested that Ashton – my yellow bean may need a heel prick to check his jaundice. Off to Osborne Park Hospital for a 2 hour wait...he was borderline with his jaundice.

Home again...to a Immie now screaming in high pitch pain.....very scary!!..By 9.30 pm that night I was on the phone to the resort, after a restless night we arrived at the resort at 8.30am. Immie was continuing to scream, even with every pain relief on board. CAT scan – all clear (thank god). Snot test came back with a respiratory virus, treatment - ride it out. Immie and Jason, stayed at the resort to manage her pain. Ashton (who had been very good and very cute for all at the resort) and myself headed home. Back to the resort first thing in the morning, to send Jason off to get some money : ). Immie had too much relief a better night. Home we came at about 11 am, thanks to chauffeur mum.

Returned to Osborne Park Hospital (maternity hospital) to get Ashton’s jaundice checked. Only to discover it was way to high still...you guessed it checked into Osborne Park Hospital at 5 pm, for up to two days under the UV lighting with mummy the milk train for company : P.

So this is where we sit with no mobile coverage, but plenty of broadband coverage- hurray!!

My hope for next week is a very boring week, or even a day would be great. It’s the week before school holidays, so some order would be nice.

I have to say a HUGE thank you to my mum for being a huge help this and every week, day, minute, second and to dad for keeping her in the life she accustomed too : P.
Also thank you to the many many supportive blog comments, emails and guestbook writings. All of them bring us much hope for a miracle for our beautiful girl Immie and the day everything will be “normal” again. Please keep them coming.

Love

Fiona, Jason, Kody, Imogen and Ashton.

P.S Immies pool order is in, Make a Wish is unable to help us due to time restrictions, though very generously the Kids Cancer Support Group and the trekkers have offered to help us make Immies dream come true. More news soon xx

Our Newest Holmes Gang Addition

Our New Baby Boy

Mummy Fiona and Ashton 10 minutes after his arrival

Daddy Jason and Ashton

Our newest addition to the Holmes Gang has made his big debut, exactly 2 weeks early..

"Ashton Noah Holmes"

was welcomed to the world on the 13th of September 2009 at 8.29 am weighing in at
8 pound 1 oz (3710 grams)
52 cms length from top to toe
35 cm head circumference.

Ashton arrived in similar style to his fabulous brother and sister, A BIG RUSH!!!. With a 2 hour natural labour from start to end.

Ashton and me arrived home the same day at 4.30 pm.

Kody and Imogen were in Kalgoorlie for the weekend with my mum, Aunty Donelle and cousin Lisa. Imogen had been invited to a ball in her honor to raise funds for the Kalgoorlie Hospital and Children's Cancer Institute. A very excited Kody and Imogen arrived home at 9.30 pm on Sunday evening to a new brother. They spent the day home on Monday showering him with love and kisses.

Love, Hugs and Hope

Jason, Fiona, Kody, Imogen and Ashton

Reality for us...

As every morning since last Wednesday, I awoke filled with hope, that the last week had been a nightmare. Anyone who has lost someone incredibly close can understand the pain, when you realise that it was not a bad dream, but has now become your reality. As a parent with a child with a life threatening illness, we don’t just suffer the loss if your child loses the battle to their horrible illness. It’s from the tiniest things...them not be able to have a proper bath or shower for weeks on end due to lines they have hanging out of their body, not being able to attend friends party’s because they are too sick or if they are not sick but have no immune system, missing sibling’s (of the sick kid) assemblies/school excursions, spending huge amounts of time apart from your family unit, the loss of being able to grief in privacy, when the whole ward of doctors do their walk around discussing your child like a number, Organising to go to the shops/ movies that requires a doctors clearance and a bigger bag of medical supplies and clothes then you needed when they were a new baby. Yes, it’s not the big things, it’s the little things all added together.

Though you have no option, no parent wants to outlive their child. This leads to the long road of treatment regardless of the illness. When first you enter the road, you are naive, numb, confused, mad, sad, though positive. After your child is not a statistic of the crap cure rates there are for cancer. Over the period of the treatment, your spirit and hope get crushed and raised, solely relying on the doctors words, that look or blood counts. Then you reach the end, you expect to feel a sense of peace or relief. Instead you feel, fear, the drugs and the hospital community that has supported your child is suddenly gone..finished are weekly appointments..now you see them 3 monthly. You don’t have x ray glasses, every time your child complains of a sore finger, has an extra bruise, your heart rate races...your immediate thoughts are relapse. Even when they look fantastic, you still have that doubt. It never ends.

Why have I said all the above, as I want you to have a slight understanding of how it feels after all the treatments, after a first relapse, after promising your baby girl with those big green eyes no more taps or needles or Nasal gastric tubes...after putting her through more pain then you yourself could bear. You are then told “It’s back, it’s aggressive and there is little we can do”. You, as her parents are asked to consider her quality of life and how much time you would like to buy for her. Inside you scream..” I would like to buy her a whole life..to see her grow and learn to read, to see her ride her bike without training wheels, to see her celebrate another 60 birthdays, to hold her tight when she gets her heart broken the first, second..and third time, to see her in her ball gown..her bridal gown...to hold her first child, your grandchild”. The first relapse is a total meltdown, but the second is unimaginable. The information regarding the cancer treatment you now know, is heartbreaking before the doctor speaks you know what they will say. You hope a miracle has happened, a cure has been found between treatment completing and this relapse.

Without your understanding, or being touched by Immie's battle there will never be a cure for cancer in our lifetime. It could take one person's personal response to our Imogen's story to enable them and others to make a huge difference.

A complete cure for our gorgeous, smiley, care free, brave, 5 year old Imogen has not happened. There has been no miracle treatment discovered...or new study opened that will unlock the neuroblastoma key. Our options medically are limited; all that is available will only buy her time. Immie’s cancer has become resistant to every chemo agent and combo available in Australia. It has become aggressive, the tug of war Imogen has fought with the beast, for 2 ½ years plus, has become a struggle. Options available in America are purely trials, used to determine which cancer they are best for. These are the facts of this horrible cancer – neuroblastoma. In the last 20 plus years there has been little progress in understanding neuroblastoma, to allow for more effective treatment.

Our decisions to consider Imogen’s quality of life and happiness are heartbreaking. Even though we were aware of the treatment options prior to Monday’s meeting, we are still numb from the pain this meeting has bought us. Our whole aim now has become on how to give Imogen the best quality of life, that she deserves and has worked so hard to get to, as she fought so strong to obtain. We will relish every moment with her, every minute, every day, every week, every month and every year. We have begun natural treatment with the amazing Mr Renier, which involves tablets and drops. We know our brave battler baby girl Immie will do everything to prove all the medical professionals wrong. We ask that you send her and us the strength to continue to fight for what is rightfully hers – a normal carefree and pain free life.

Jason will be looking at employing someone else to have time off to enjoy our family and soon to be newest addition. We are seeking "Make a Wish" assistance and trying to get some money together to give Imogen the one thing she loves as much as life..her very own swimming pool in our front yard. The memories we will gain from this will be worth every cent. Imogen will continue to go to school and live life normally from dancing to scootering. If you see us out and about please do not avoid as you are not sure what to say, please recognise we need your support and to allow us to be able to honour Imogen with her wish of being a normal 5 year old kid.

All our love

The Holmes Gang

P.S Imogen has been a true hero with radiation, tomorrow is the last day. Apart from being a little more tired you would not realise she is unwell, as she swam like a fish at the pool today. Enjoy the attached pictures, as much as we did experiencing them with her.

P.P.S Our super kid Kody passed swimming lessons today, he is now in stage 6, Way to Go Kods : ).

P.P.P.S After you read this please go give the person or children you love another hug and don't stress the small stuff, life is not a dress rehearsal.

http://picasaweb.google.com.au/theholmesgang/OurFamilySeptember2009#

It's all in a name

4th of September 2009

I was having a moment today as I pinned flowers onto the huge canopy that surrounds Immie's bed. When I looked up her framed name definition that was given to her when she was born from Jason's Aunty and Nana caught my eye.

Imogen

26th of April 2004

An Image:
~Latin~
A lady devoted to all she meets,
being a model to the community
for how she loves her
family and friends.
She is giving, hard working
and charitable,
She doesn't know
the meaning to the
words no or impossible.

That last sentence describes our Imogen perfectly. Tomorrow the new battle begins,
Fight on Baby girl, we love you xx
Love Mum, Dad and Kody

Why?

What a horrible, gut retching world we live in a times..simple joy can be erased so quickly. We are devastated, crushed and gutted.

I am not sure how much I will be able to type on our normally happy blog page, as I sit here with tears running down my face. For those who are not aware, but are still our avid and fantastic supporters..on Wednesday our amazing, smiley and incredible girl Imogen received the most hardest of blows. She has again been challenged by the bastard of a cancer neuroblastoma, that has already stolen over half of her life.

We received this devastating news at her scan results meeting on Wednesday morning, we were shocked...and still are. The cancer has moved so fast, when scanned only just over 2 months ago, there was no visibility of this new spot. It is now trying it's hardest to beat Imogen down, it's a constant tug of war. It is pushing on her spinal cord, which links to the pain I mentioned when last I posted, and is far to close to her bladder and bowel.

Imogen began emergency radiation yesterday, now covering her whole mid section. She will have 5 sessions, which only take 10 minutes at a time and are not painful to her. This will bring her some relief, but will not completely erase the cancer. We meet with Immie's oncologist on Monday afternoon to discuss options. We will also meet with our fabulous Mr Renier (bio chemist/ naturopath) to discuss alternative treatments. Until then we are not sure what will happen, we remain not defeated, though we are aware that we will have to make some very tough decisions. Ensuring we consider Imogen's quality of life and that she has battling this horrible disease for now over half of her life.

Immie loves nothing better than being with her family, fishing, scootering, recently discovering she can click her fingers (now only mummy and the baby can't : ), school, being chased down the street by her crazy daddy when we are leaving in the car and being in the thick of everything and anything happening. How can we be without this girl, who has taught us and given so much??

I, especially am finding it incredibly hard to talk to anyone right now, so please do not be offended or even concerned if I do not return calls or seem stand offish. I am trying to conserve all of my energy for Imogen, Kody, Jason and our " almost" newest Holmes addition. Though on the other hand please don't avoid us, keep sending emails, texts, leaving messages on the blog etc, without your support, prayers and love we would have never got this far and will never be able to continue putting one foot in front of the other everyday.

Love
Us

P.S For all concerned, Baby and me went to the hospital to be checked out, the little cheeky monkey spent the whole time kicking me and trying to kick the heart rate monitor off my stomach. We are both well.