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.

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