AVA'S STORY

Ava was just six-months-old when her mum, Jenny, heard her screaming, and ran into her to find Ava struggling to breathe, her eyes rolling into the back of her head and her lips turning blue. Without hesitation, Jenny put her in the car and drove her to the Emergency Department of Sydney Children’s Hospital, Randwick.

Doctors originally thought Ava was choking on something, but after an examination failed to find any obstruction in her airway, she was put on a ventilator in the Intensive Care Unit. Ava was then sent for scans which, much to the shock of her distraught parents revealed a five and a half centimeter cancerous tumor called a neuroblastoma in her chest and abdomen. The cancer had also spread to her bones.

Little Ava was immediately started on a course of chemotherapy treatment, and spent the next 15 days in the Intensive Care Unit until she was able to breathe on her own. Over the next 12 months, she was in and out of Hospital, during which she endured eight rounds of chemotherapy and three operations to try and rid her of the tumors, one of which was entwined around her spine and considered too dangerous to operate on.

While doctors were deciding on the next step in Ava’s treatment, it was discovered that thankfully the inoperable tumor had matured and become non-cancerous. Ava was able to stop her intensive treatment.

These days Ava is back home with her family but continues to visit the Hospital every three months for scans, which will eventually reduce to six-monthly scans, the longer she is in remission.

Now a bubbly two and half year old, Ava is out-going, bright and inquisitive and loves playing with her friends at daycare.

“The staff at the Hospital was absolutely amazing, I could not fault anything,” Jenny said. “They treated Ava with so much care and make you feel part of a family, not just a patient.”

AVA'S STORY BY DAD

Ava’s story by Dad Tony Bell

 Hi There – My name is Tony Bell and I am here to talk to you about our journey with our daughter Ava and our experiences in the world of Sydney Children’s Hospital at Randwick…I use the word “world” very much on purpose, because for many families whose children have a long term illness, the Hospital becomes their world. They can spend months living on the ward, it becomes home away from home. To the outside world it is just a hospital, to those inside it becomes like a bubble, you become removed from everything on the outside…Apart from going to the shop or grabbing a take-away, you spend all your time there.

Our Journey started on Jan 14th 2011 – we had no warning that anything was wrong, Ava had been a little cranky and off her food, but her 6 month check-up a week previous had not picked up anything serious. It had been a very normal day all round….I was up at a mate’s house when the call came through from Jen – “Get home quick, there is something wrong with Ava”

Ava could hardly breathe, she looked petrified and was screaming – her eyes were rolling to the back of her head, we thought we were going to lose her…What followed was a very quick ride to Randwick – A mad dash to the Emergency Department,  where the doctors took charge immediately – At that stage we thought she had swallowed something, and that a quick pat on the back would reveal a foreign body and the panic would be over…Not the case, on examination they could not find anything, so Ava was sedated until further tests were carried out…

An X-ray in the morning revealed fluid on her lung had caused it to collapse….But what caused the fluid? – A CT scan would tell us….At 3pm on the Saturday a bad 19 hours turning into a nightmare, the CT scan had revealed a 5 ½ cm tumour in her abdomen and chest…How could this be? There must be some mistake?....Then the bigger question….How can a tiny 55cm, 6 month old, fragile baby survive something like this. The answer Jen and I came up with wasn’t so positive.
Ava responded so well to the surgery, we were home by the weekend – throughout the treatment she was a legend, this helped us through….

About an hour later a team was assembled to talk to us…we were led into a room with 7 doctors and nurses…the last person in brought a full box of handkerchiefs….That was not a great sign. It was only later when we realised that 7 doctors in a room was a good thing…we had an entire team of experts ready to help Ava and us get through what would be the hardest time for us as a family. Over the course of the next 20 minutes various people spoke. I can’t remember exact words, we were in shock. The Intensive care doctors talked about how they would treat her current, very serious conditions and keep her alive…Then the surgeons  talked about a biopsy and the insertion of a central line….Then finally an older lady in the corner talked…She started using big words and terms that we had never heard of – but are now familiar with. She talked about cancer treatment, chemotherapy, protocols, histology of the tumour, blood counts and all manner of things…knowing her as I now do, it’s safe to say that she probably talked a long time too…she did say one thing that I can remember word for word, a ray of light that we could cling too “we would expect her to fully recover” – That Lady was Dr Susan Russell – Ava’s Oncologist - Genius….

The next 14 days were spent in intensive care – where Ava was cared for around the clock. What an absolute fantastic team, going out of their way to make Ava as comfortable as possible. It was on the Friday, 1 week after we were admitted that one of the more surreal moments of our treatment occurred (there were a few). We got the results of the Biopsy back. This was crucial as it would tell us the histology of the tumour…If certain cells (N-Myc) were present, then we would be high risk and survival chances lessened….at 5.30pm after waiting all day another genius Oncologist Dr Tracey O’Brien broke the news…it was good news, No N-Myc cells…Jen was in tears, tears of joy…..Tears of Joy that our daughter had medium risk Neuroblastoma very strange…

Ava responded well to the first round of treatment and we left intensive care to go to the Cancer Ward, C2 west…Again, a surreal moment, we liked the nurses and staff on intensive care. They had been great, Ava was being looked after…we didn’t want to move!!!

However, C2 west then became our home and our lives were dictated by the protocol laid out by Sue’s team. A 21 day cycle of Chemo and recovery….8 rounds to be delivered in total, after 4 rounds a set of scans, followed by an operation to remove the nasty tumour and another 4 rounds to clear up what was left….Simple….and after the first 4 rounds everything was going to plan. The tumour had shrunk so much that Sue suggested we do 2 more rounds of Chemo  to make life easier for the surgeons – The 2 further rounds didn’t do much, which was a setback….In steps Dr Guy “Steady hands” Henry and the surgical team. And what a team. Jen and I were so nervous in the days leading up to the operation. 10 mins with Guy beforehand and or fears were very much allayed. An 8 hour op went very well and much of the tumour was removed…

2 more rounds of chemo should finish things off and clear things up….Nope, another setback…the Chemo had no effect…2 rounds of high intensity treatment was the next step…No effect. Suddenly, after a dream run, things were not going so well – Next step was another trickier operation, where there was a danger of nicking blood vessels that supplied the spinal column…that would be bad, Guy Henry had a difficult job on his hands….We were very, very nervous this time.

Operation day came – yet another surreal moment, 2 hrs in and Guy appeared in the waiting room. They had gone in, only to find dead pieces of tumour, nothing much live at all, nothing to cut…we were elated, that our little one was spared that risky surgery.

We had a 3rd minor operation a few weeks later to get rid of some remnant tumour on a rib…then on the last Wednesday before Christmas 2011 we had a meeting with Sue to discuss what next….That when we got the news that no further treatment was required. What a Christmas present that was…OK it took a bit longer than we thought, but we were almost there. A week after Christmas Ava’s central line came out – a sure sign that we were in the clear.

Last week Ava had her second set of scans which revealed no new growths – she will have scans every 3 months for a year, then every 6 months for 2 years, then every year, the after care at SCH being as important as the care itself.

A few examples of the extra special care you receive at SCH….In the early days on intensive care, Jen and I were out having lunch, we came back to find Ava on a play mat with a load of toys and our nurse entertaining her and making her smile…similarly, a couple of days later we were able to take her outside, an almost military operation with all the tubes and lines and machines. It was a big hassle, but not for these nurses…We wanted some fresh air for Ava…they delivered! These little moments meant the world to us.

Another time I was walking home from the bus stop in Bondi, I heard someone running behind me, then felt a tap on my shoulder…Dr Alan Rubenstein the anaetheologist in the surgical team, out for a family meal, saw me walk by, left the meal ran after me to find out how Ava was, we chatted for about 15 minutes, he was off duty having a meal with his family, but that didn’t seem to matter as he talked to me about how Ava reacted to the pain meds for her operation, and which methods he got best results with.

The nurses on duty the night she was admitted, they came around a few days later to see how she was. Obviously the news at that stage was bad….but they were STILL asking 6 months later…They remembered her!

The girls in Ambulatory care where we check in for Operations and Scans…so great with Ava and make all the kids and families feel better.

I could go on…but they are only words and words don’t have as big an effect as actions…At left you will see a little girl with very blonde hair, just shy of 2 years old…That is my daughter Ava Bell, who is here today because of the work of all at Sydney Children’s


AVA'S STORY BY MUM

By Mum - Jenny Bell

Ava is the exact definition of what a "Normal" 4 year old girl should be, she can be cheeky, funny, infuriating and adorable within the space of 2 minutes. She is constantly talking, asking questions and asking for people to play with her. She listens intently to her Kindergarten teachers, her swimming teacher and her football coach, yet when it comes to Mummy and Daddy trying to teach her something she has no interest! She can take 45 minutes to eat her dinner, then 2 minutes to eat her dessert (much to the frustration of her Mummy). She LOVES Frozen and Disney and gets way, way to excited about Easter, Halloween and Christmas....she has a great imagination, loves Arts and Crafts and can be smart beyond her years... 

Ava has great relationships with her friends and you can see genuine affection when she is with her closest pals and when they are together - Ava is often the one who gets up to mischief and already understand the power of a little cheeky smile that gets her out of trouble

She has little to no recollection of being ill, or what that meant. But when she goes back for check-ups she charms Sue (our doctor) and takes it in her stride.

Most of all, she is a happy little four year old, who makes us smile each and every single day.