home our story events blog neuroblastoma media links shop contact us DONATE
chasing charlie’s cure

from stage 4 high-risk neuroblastoma

Imagine being told your child is seriously ill.

Imagine crying until you think there's nothing left.

Imagine feeling like you've been punched in the stomach and wandering the corridors, as if your life was on pause for days on end, not able to comprehend what is happening.

Imagine signing a consent form knowing that death is an option.

Imagine having to hand over your child to surgeons for endless hours and waiting...

Imagine having to watch as your once active child isn't even able to open their eyes for a week.

Imagine the terror...

Imagine the pain of having to leave your baby in the Care of strangers and not be able to sleep by their side.

Imagine standing by as your baby's body is pumped full of poison.

Imagine holding your baby while someone holds a mask over their face as they struggle in fright.

Imagine holding your baby countless times while someone sticks needles in them while they scream.

Imagine the guilt...

Imagine being told the percentage chance that your child might survive or leave you.

Imagine holding back the tears when your other child is carried away from

you screaming "mummy" not understanding why you won't come home.

Imagine watching as within two days your child loses all their hair.

Imagine losing all your independence and identity and just becoming someones Mummy.

Imagine not being able to leave the house for fear of infection.

Imagine not being to able to make any plans apart from hospital visits.

Imagine being stuck in isolation and not see anything but four walls for days on end.

Imagine learning a whole new vocabulary of words which is all you talk about anymore.

Imagine the loneliness...

Imagine perfect strangers passing comment about your son

But with the emptiness ...

Imagine the kindness of strangers who don't know you

Imagine the incredible support from people you've never met but know how it feels.

Imagine how special each cuddle is that you feel the need to memorise it.

Imagine the magic of each smile knowing that this smile was lost for weeks and now it's back

Imagine how fragile and precious life feels

Imagine ... Don't pity, don't sympathise, just spread awareness and Just imagine because it could be you ..…

Credit: written by a mum of a child suffering neuroblastoma

What is Neuroblastoma?

Neuroblastoma is an aggressive cancer that usually starts in the abdomen. It is a cancer of specialised nerve cells called neural crest cells. These cells are involved in the development of the nervous system and other tissues.


What age does it affect?

This type of cancer almost always only occurs in children, with the average age of diagnosis being just 2 years old. It occurs very rarely in adults.


How common is it?

It is the most common solid tumour in children under the age of 5. About 50 new cases are diagnosed each year in Australia.


Is there more than one type?

There are many types of neuroblastoma but they are broadly classified into low, medium or high risk, each with different treatments and prognoses.


What’s the treatment for high-risk?

Multiple rounds of high-dose chemotherapy, surgery, radiation, stem cell transplants (normally two of these, referred to as tandem) and 6 rounds of immunotherapy.


What’s the prognosis?

It claims more lives of children under the age of 5 than any other cancer. The average survival rate for aggressive neuroblastoma is only 50% and the rate for the most aggressive form of Neuroblastoma can be as tragically low as 15%. A third of the survivors of neuroblastoma have long term side effects from their actual treatments.


And Charlie?

Unfortunately, Charlie has the most aggressive high risk form. On diagnosis, the cancer had already spread to his bones, which is how his Mum & Dad discovered it, after noticing a hard lump on his face. It is very rare for a child under 12 months to be diagnosed with such an aggressive form. In fact, Charlie was probably only one of two babies in Australia to be diagnosed with high-risk neuroblastoma in 2016.


.

The FACTS

Imagine….

This heart-breaking photo of Jessica Whelan was taken by her father during her treatment for neuroblastoma. Sadly Jessica died in 2016. May she rest in peace, together with all the other children who have been taken from us far too early by this evil disease.

We will never forget you.

only 1 out of 2 kids diagnosed will survive…

Email

Sign-up for updates Find us on Social Media