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chasing charlie’s cure

from stage 4 high-risk neuroblastoma

The 20th March 2016 shall be imbedded in my mind for the rest of my life.

I'm sat at the Gold Coast University Hospital with my husband Mark and our good friend Christa, the doctor who had the unimaginable task of telling us the diagnosis of Charlie's CT scan. "Tumour, cancer" is all I heard. Mind racing, I'm thinking the worst. I feel Mark's hand try to stop the involuntary shakes in both my legs, tears running down my cheeks.

What does this mean? Is he going to die?

This was the beginning of our Neuroblastoma  journey.....

Our Charlie. Born 20th June 2015. The day before his Daddy's birthday. Welcomed into a world filled with love and affection with the odd bit of tough love from older brother Hudson (3)! Everybody will say their child is special. But Charlie really is. He has an infectious way of promoting love and smiles where ever he goes. He is truly blessed with being able to make people happy and to make people smile. A trait that has forged the courage and the ability in him fighting this disease today.

Charlie is the boy who will break awkward medical meetings with a continuous blow of raspberries. Charlie is the boy who has the nurses wrapped around his little fingers. Charlie is the boy who will give hope to all others battling this horrendous cancer. He is our little superhero fighting a big battle. He is, without doubt, the little soldier that is carrying all of us through this debilitating journey of Neuroblastoma.

And it is exactly that, a journey. A roller coaster of good and bad news and emotions. Charlie was diagnosed as we noticed a growing lump on the side of his head. Initially thinking he had just knocked it on his cot or his over zealous brother had thrown a toddler punch! Other than this Charlie was a very normal, happy, 9 month old who was meeting all his milestones and exploring the world step by step. This is what makes this cancer so scary. There really was no alarm bells and should this lump have not appeared, well, I dread to think. I've not allowed myself to go there.

Our first hurdle was overcoming the worst case scenario. That Charlie has high risk neuroblastoma. We had over a 90% chance of him having the "better" of the two but no, we were struck down with the worst. Charlie is probably the only baby that will be diagnosed with high-risk neuroblastoma in Australia this year. It gives him approximately a 50/50 chance of survival based on current standard treatment which includes far more intense chemotherapy plus surgery to remove the primary tumour above his kidney, stem cell transplant(s), radiotherapy and immunotherapy. We were overwhelmed to say the least, even my Husband Mark, an emergency medicine consultant was struggling with what lay ahead. This is a very aggressive cancer, one I wish no one else has to endure.

Oddly, i was looking forward to and excited about the first round of chemo he had. I felt like at least something was being done to rid my baby of this tumour that engulfed his little body. A tumour on his kidney the size of an apple, the metastases (where it has spread to) on his head, ribs, pelvis, shoulder and knees and bone marrow. This poison was going to make him better I was sure.  We are now on cycle 4 out of 6 for his chemo. We head up to Lady Cilento Children's Hospital in Brisbane every three weeks, with blood tests and scans in between. Plus, if he spikes a fever due to his low blood counts we are admitted for antibiotics. There really is very little respite, and this will continue for the next 12 months. This last chemo round has really knocked him for six. My little chubby, blond, blue eyed boy is now bald, and more lean, shall we say. But boy is he putting up a fight. We listen and hold onto positive things, like when the Oncology Consultant says, "Charlie is doing better than we had expected" or "not every kid does as well as he is doing through this Chemo Cycle". Well that's right, because Charlie isn't your average 'kid'.

The price we pay for all this "poison" potentially saving his life, are the many side effects that come with it. He will highly likely  have hearing impairment, which may lead to speech and learning difficulties as he is so young. It will also render him infertile. It was at this point that my husband did some research on preserving fertility. After seeking advice from a specialist in the UK, he found that RCH in Melbourne was the only place in Australia that offer hope to pre-pubescent boys as it's so new and still in the experimental stage. So off we went to Melbourne for Charlie to have this procedure called TTCP (testicular tissue cryopreservation). So our little Charlie may be a fertility pioneer one day!

It is funny how the Warrior Mum within takes over. None of us know how we would react in these situations and sometimes we are dying inside but nothing or no one is going to knock us down. I refuse to believe that this is Charlie's final call. I remember saying to our Oncology Consultant, "I am not going to bury my son so we, you, just have to do what ever it takes".

Sure we struggled with 'why this happened to us' so unexpectedly but, what good is that going to do. I need Charlie to look into my eyes and see strength, positivity and focus. My down times are not around him.

Since the diagnosis in March friends and family have rallied around us, pushing us along in a wave of love and support, encouragement and strength every step of the way. SO much so, Mark's colleagues at the Gold Coast University Hospital ED have organised a "Charlie Shirran's superhero Rugby Fun Day".

A fundraising event as we are likely to need to head to America to enrol in a medical trial once his standard treatment has been completed here in Australia. There will be fun for the kids, food, music, raffles and a very much anticipated rugby match between the ED staff! The Wallabies even donated a signed jersey for the event!

So what does the future hold?  

No body knows. There is no doubting that this is certainly a journey of continuous hurdles. Unfortunately, this may not even be the full picture. Relapse rates for high-risk Neuroblastoma patients are currently around the 50% mark. Treatment options in Australia for cases of relapse are very limited, and so patients are faced with huge, huge costs of seeking treatment in the USA. Even if he is one of the lucky ones to be 'cured', it will impact on his life forever and he will need to have ongoing medical check-ups for the rest of his life.

We will however, take each day as it comes. Breathing in, soaking up and enjoying every moment we have together. Life is precious and its a shame it takes something so shocking and unfair for us to realise how unbelievably lucky we are.

If you take nothing else from this article, from my experience, please go home tonight and hug your little ones that little bit tighter, give them that little bit more time. You do not know what is around the corner.

Top photo credits - Bek Grace

Our Story…. Sometimes real superheroes live in the hearts of small children fighting BIG battles….


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