Hi all! We are Leanne and James, Ava’s mum and dad.
Firstly, thank you so much for taking the time to read Ava’s story. We never thought we would be in the position of asking for support from total strangers, but we are so thankful you might want to help us to save our little girl.
In April of this year, just after her second birthday, our precious Ava Bear started acting strangely. We took her for tests and on 7th April, we got the worst news of our lives: she was diagnosed with Stage 4 High Risk Neuroblastoma, a very rare and aggressive childhood cancer. Leanne was pregnant. Our perfect world fell apart.
Since then, Ava has gone through multiple operations and tests and spends more time in hospital than out. Our little fighter has completed her 8th round of chemo now, and it is unspeakably hard to see how sick it makes her. Even once she is in remission, there is a one in two chance of relapse. One in two.
BUT THERE IS HOPE! Her best chance is a lifesaving vaccine only available from Memorial Sloan Kettering Hospital in New York City.
This incredible trial vaccine has been shown to PREVENT RELAPSE in cases like Ava’s-- we cannot let her go through all this chemo and then relapse! That is not an option.
But we were stunned and horrified to learn that the vaccine and associated costs are estimated at a shocking $350,000 AUD.
We will also have to temporarily relocate to the States for her treatment, but we will do whatever it takes. Her baby brother Angus was also born mid-September 2018, adding much joy but also complication to an already hectic life
We don’t have assets we can sell off. Leanne is working full-time alongside raising a newborn and a sick toddler, and we save all we can. We don’t like to ask for help, but we have no choice, and we are determined to raise the money for our baby girl. This is the purpose of this fundraising page.
We ask for the help of others to help save our little girl and give her the gift that all of us have and want for our own children - the gift of a happy life. There is no price you can put on your child living past the age of five.
From the bottom of our hearts, THANKYOU for caring about Ava and sharing her story. Your support could be lifesaving.
Any questions you may have, please inbox us on this page or contact me directly. www.avasjourney.com.au
Phase 2 trial - https://clinicaltrials.gov/ct2/show/NCT00911560https://www.mskcc.org/pediatrics/cancer-care/types/neuroblastoma
* MORE INFORMATION *
Neuroblastoma is a very rare, very aggressive form of childhood cancer. It’s a cancer that primarily affects the adrenal nerve cells.
The type Ava has is classed as stage 4 high risk - Ava’s cancer is very aggressive. It’s spread across her body; Ava has a primary tumour in her abdomen in the adrenal gland above her left kidney. This tumour is so large is half the size of the liver and is squashing her kidney completely. Ava also has several other tumours in the bones themselves, the cancer is in her bone marrow, her blood and lymphatic system. It’s even spread in her skull bones and eye sockets.
The current rates of survival for Ava’s kind of cancer an average of 40%. We don’t focus on this - we focus on 0-1 and we are adamant she is going to be that 1 - that survivor!
Ava has already started treatment - she is multiple surgeries down, central line and NG tubes placed, ovaries removed and harvested, stem cells harvested, blood and platelet transfusions down, too many medicines and blood tests to count, X-rays, ultrasounds, MRIs, MIBG scans. She’s also had multiple other treatments including weekly dressing changes etc.
The main treatment of course is her chemo! Eight rounds down.
It cannot be expressed enough how heartbreaking and nerve wracking it is as parents to have to expose our 2 year old to this - these agents are highly toxic! The purpose of chemotherapy is to kill rapidly dividing cells - of which cancer cells fall under this, but so does your own body cells. You lose your hair, you get blisters and sores from your mouth all through the gut and out the other end, you become neutropenic (no neutrophils and so no immune system), low blood cell counts so feel like you cannot even move, not to mention the sickness and pain.
Ava has long way to go. And that’s with the hope she will after this point go into remission of cancer.
Along this journey she will need transplant chemo, a stem cell transplant, surgery to remove the primary tumour (no easy feat - approx 6-8 hours), radiotherapy and immunotherapy.
The most horrifying thing about Neuroblastoma is its tendency to recur. The rates of relapse following remission are high - approx 50%. Of those 50% who then relapse the survival rates are so low second time around that almost all are terminal.
We DONT want Ava to go through all of this and risk a relapse. That’s not an option!
There is hope - Memorial Sloan Kettering hospital in New York have been trialling a drug which so far has had brilliant results with keeping children cancer free for years longer than ever before.
Memorial Sloan Kettering has the world’s very best Neuroblastoma specialists and experts - leaders in their field.
Currently this vaccine is in phase 2 trials - this trial being the use of the drug on patients who are in remission with Neuroblastoma (had it first time). Although Ava has a long way to go on her journey now, it’s likely that this drug will not be available to us here in AU or UK when she completes her treatment.
The cost of getting to the US to get the vaccine all in is the sticking point - it’s approx $350, 000 AUD. A LOT of money I am sure you will agree. But what price can you put on a child being given the opportunity to live their life past this age of 5?!
We are looking to raise this money by Christmas to ensure that when the time comes we are ready to go to the US to have this treatment without delay and thus risk of Ava relapsing.
We don’t have assets such as a home that we can sell or remortgage, and of our own money that we do have we are already saving hard!
Any extra funds raised that may not be needed for this fund we will ensure are given to Neuroblastoma research to continue to raise awareness and find better treatments to bring about better outcomes to children suffering with this awful disease.