Ava’s Journey - Life-saving Vaccine

$236,105 of $350,000 goal

Raised by 3,756 people in 11 months

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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 

Facebook: Avasneuroblastomajourney 

Instagram @leeleeloves12 

Phase 2 trial -  https://clinicaltrials.gov/ct2/show/NCT00911560

https://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. 


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This is the video shown at Ava’s Gala and put together by a wonderful friend and it’s just amazing!

It also serves as a reminder of why we started fundraising in the first place - to get Ava the treatment to help keep her alive.

This video makes us smile, laugh and cry all at once! Particularly the first video of Ava’s first smiles as a baby. we hope you enjoy it too.

Today it’s been like going through firsts all over again for Ava.. the transplant has left her weakened and due to her not moving for nearly 4 weeks now she cannot walk or really move at all.

So today and every day from now, physio are helping Ava move again. Today she begun crawling on a play mat just a little. It was lovely to see her moving again. And I’m sure soon enough the usual Ava who runs wild around the ward will be back on form!

The end (of transplant) is in sight... and oh how we cannot wait to be home. But this is by far from the end for Ava’s treatment. Ava still has more than a year to go. With radiotherapy, immunotherapy, Vaccine in New York and then ongoing check ups, scans, side effect related visits etc.

We absolutely need to do everything possible to ensure that whatever treatment Ava needs for her survival we get. And for that we need support. Support from the wonderful people whom have been following Ava’s Journey - whether that be a donation however big or small, or even just sharing her page to raise awareness in the hope that others may have the means to help support our fundraising efforts.

Never did we think we would need to do this (fundraising) nor did we think it was possible to raise this amount of money, but we have, and that’s down to such generous people like you reading this now. We thank you greatly and ask you please for that final push to help Ava ensure she gets all the treatment (including supportive therapies such as psychological help for trauma) she needs and deserves for a long and happy life. ♥️

Ava’s road ahead is long.... But first stop is getting her out of this hospital for a while! Ava has already told us has to be SEA LIFE Melbourne Aquarium
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Day +26 of Ava’s second transplant nearly at a close. 36 days we have spent in hospital this time around.

It’s like a time warp. Time goes so slowly it feels more like day 326. Our days are a cycle of all things medical - constant obs, medications being administered, doctor reviews and other medical interventions such a physiotherapy, educational therapies, speech pathology.

I have to be honest, going to work is a welcome break, offering me some degree of normality - an escape from cancer.

Ava’s little body has taken a big hit. The cumulative effects of 8 rounds of chemotherapy and two transplants has made her recovery this time around very slow. But she is making a recovery and that’s the important part.

Her Hydromorphone and Ketamine have been weaned down and within a few days should be off completely. We will then hopefully work on weaning her off Clonadine also. Her pain now is better but she still struggles with her tummy - her gut is so damaged that it isn’t functioning well. Causing her pain, sickness and vomiting. Her mucositis is mostly cleared up but not fully (by this point in the last transplant she was near ready to leave).

My biggest worry is her not being able to walk or even really hold her body weight. I’ve been told this is rather normal in transplant but again, this didn’t happen in the first one. Physiotherapy have been coming everyday however, using play to engage and encourage movement. On the most part it’s worked a little - in the picture below; Ava went from sitting on the bench to standing up leaving against the sofa whilst attempting to place her animals in the “swimming pool”.

We are not sure when she will be home. We really hope in the next 2-3 weeks and fingers crossed before her 3rd Birthday.

For now we are taking each day as it comes. Celebrating Ava’s little wins like this one below... seeing her smile and her beautiful personality shine through more and more each day is amazing. She is amazing.

At the start of this second transplant we were a wreck with fear and anxiety of losing her during this transplant, and believe me.. it has not been an easy ride, there has certainly has been some very real close calls. but today seeing her take these little steps (literally) has lessened that fear and we finally have been able to take a breath and feel relieved that (hopefully) this was the last chemotherapy Ava will ever receive, and hopefully it’s helped move her one step closer to living cancer free ♥️
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This transplant has been gruelling so far. So many lows. So much pain. So much fear...

But HOORAY! Ava’s counts are coming in and since they first came in on Sunday they have been coming and coming!

Of course they’re still low, but she’s no longer neutropenic and she actually played today!! It was such a wonderful thing watching her do puzzles on her I-pad and engage in crafts with her “ward grandmother” (a wonderful volunteer who comes to play and care for Ava 3 times a week).

So now we just hopefully watch her recover day by day! I will be so glad to see her not in so much pain and come back to us (she’s been like an empty shell of a person for the past couple of weeks).

ohhh Ava hang in there beautiful... the end is near!!!

This short video I took because it was the most peaceful I’ve seen her sleep in weeks now... she’s not out of the woods yet by any means, and we still have a few weeks ahead of us in hospital, but hopefully the only way is up from here!

Ava has a long journey ahead of her. A lot of it unknown. Your support for Ava through donations is greatly appreciated and will directly help us keep Ava alive and well. Please if you can continue to help support - we wholeheartedly thank you ♥️

#avasneuroblastomajourney #neuroblastoma #childhoodcancerawareness #toddler #strong #giveblood
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The night before Ava goes in for her second transplant. Ava is the first child of her age (there was only 1 other whom have received a tandem transplant in this hospital and she is a teenager) to receive a tandem transplant at this hospital. It’s not routinely done in Australia (or Europe, however more common in North America). That alone scares me for fear of limited experience, however I am told the Ava’s oncologist does have a lot of experience through working in North America.

As some may remember from a post a while back, Ava’s Neuroblastoma is a tricky one. It’s difficult to treat and even after so much chemotherapy (8 cycles and one transplant) she has been slow to respond. A truly gut wrenching thing to accept but we are hopeful of her recovery all the same. Because of this, it was recommended Ava have a tandem transplant.

I have tried my hardest over the past couple of months to find a better treatment path for Ava - one that doesn’t involve another transplant, more high dose chemo with serious short and long term side effects; but unfortunately as with all childhood cancers, there is limited research and limited outcomes data available. I spoke to several specialists across the world but still couldn’t find a solution.

We went to the hospital on Friday for results of Ava’s MIBG scan. They were not ready. A kick in the teeth considering I had pushed hard to have the scan prior to making a decision on whether to move forward with another transplant. Given I have not managed to find any other real data with solid positive outcomes in patients like Ava (difficult to treat) i have no choice but to accept her going through a second transplant. I’m devastated for her.

The pictures below are the leaflets given to us for the chemo agents she will receive this week at high doses (designed to kill bone marrow beyond repair). This is a leaflet made patient friendly - and just look how “friendly” these agents are. The side effects are very real. They’re short and long term. And the ones listed as rare but serious affect 1 in 100 patients - that is NOT rare. I understand these products well. I have worked with some of these medications. Never did I think they would be administering them to my child.

Parents of cancer kids (and any cancer patients for that matter) have to read these knowing what they’re about to put their children / themselves through. It’s heartbreaking. James, our family and I are still not over the first transplant and are now having to swallow the fear and push on with the next.

We expect this to be hard on her. She is strong, and we just hope she stays strong through it. Likely another 6/7 weeks stay in hospital. She will have a ward grandmother this time (a lovely volunteer allocated to her for 3 hours, 3 days a week) which is amazing! (Thank god for volunteers - they’re truly special humans ♥️) and she will still receive support with play therapy, music therapy and art therapy - again wonderful! (The hospital try their best to make it a positive and support environment).

I wish there was a different way. There are plenty of novel treatments out there that potentially are doing an amazing job with patients like Ava but the data just isn’t sufficient to risk it. So Ava will undergo the transplant I have worked so hard to avoid.

This is NOT OK. It is NOT OK that children with cancer undergo this sort of treatment - truly torturous and life altering (in a very bad way). More funding and more research for childhood cancer is needed worldwide.

So I am preparing myself (and James) so we understand the signs to lookout for for such issues as VOD and TMA which have a higher incidence in this tandem transplant, so we feel we can be one step ahead for Ava and advocate for her since she cannot. I am packing up her bag, packing some pictures and things to decorate her hospital room. I’ll try to make it homely. I’ll take toys, essential oils, her own bedding and cuddly teddies. I’ve stocked the IPad up with movies and games and bought her a couple of little surprise presents for when she’s feeling really low. We will try keep her as positive and strong as possible.

We will see you on the other side in a couple of months! ❣ (just kidding - I’ll still post updates)
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Raised by 3,756 people in 11 months
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