Ava’s Journey - Life-saving Vaccine

203.130 $ del objetivo de 350.000 $

Recaudados de 3.451 personas en 7 meses
Fecha de creación: 8 de abril de 2018

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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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Your invitation to Ava's Black Tie Gala & Auction Nov 17th || Ava's Story showing on Channel 10's The Project tomorrow night at 6.30pm


Dear Friend of Ava,

We wanted to reach out to you, Ava's generous Go Fund Me supporters, to give you an update on the fundraising efforts so far. It has been so incredible to see how Ava's warm heart and infectious smile have captured the hearts of so many people around the globe.

We are sitting at about $100K in total and have some amazing activities kicking off in the coming weeks. We are really hoping they will help Ava’s family to realise their dream of raising the $350,000 by Christmas!

Ava’s tiny fundraising team is made up of a few very dedicated volunteers. Several of us didn’t know the family beforehand but now count them as friends. We are here to support James and Leanne with all the event planning, media, logistics, and strategy that comes with raising such a huge amount of money!

With that in mind, please have a look below to see what we are up to. Ava is making her television debut tomorrow, and our major Gala fundraising event is less than a month away, so it is full steam ahead!!

For those of you not in Australia, please share social media posts and encourage your friends and contacts to support Ava! Remember they can donate easily through www.avasjourney.com.au.

For Ava’s friends in Australia--

1. Mark your diaries or set your TVs to record!! Brave Ava and her incredible parents will make their television debut on The Project TOMORROW, Friday 26 Oct, on channel 10 from 6:30 to 7:30. You will hear first-hand what they have been through and get a glimpse of Ava's incredible, infectious positivity, despite it all. You do not want to miss this!!

2. On November 17th at the Plaza Ballroom at the Regent Theatre, we will host Ava’s Gala, a black-tie event with live entertainment, where Chef David Ricardo will delight tastebuds with drinks and canapés on arrival, as well as an exquisite three-course culinary experience and unbelievable auction items. Please book your tickets and tell your friends, so we can make this event the success Ava deserves.

Guest host Kristy Mayr of Channel 7 and auctioneer Marshall White Brighton’s Stephen Smith will entertain between acts from talented performers, the auctioning of incredible items such as sunny family and golf holiday packages, an original Kerry Armstrong Artwork, a private group ride with 2-time Tour de France Green Jersey winner Robbie McEwen and a Mercedes-Benz Brighton Drive Day. Each ticket comes with a 1 in 25 chance of winning a fantastic door prize.

Tickets and tables of 10 are available at avasgala.eventbrite.com.au - your ticket to this event could be life-saving. Please book ASAP to avoid disappointment.

3. We will soon be announcing a Mercedes-Benz Brighton raffle to win a Mercedes-Benz A180. Yes, you read this right - we are raffling a Mercedes-Benz! To get more details, please make sure you follow Ava's Journey Facebook page.

As always thankyou for your support. We can’t do it without you, and neither can Ava.
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It’s been just under a week since we received the results to Ava’s last scans. We haven’t posted about them and I am sorry about that - we just wanted time to take in and digest them first.

It’s been 6.5 months since Ava was diagnosed. 8 cycles of chemotherapy down. 16 blood transfusions and platelet transfusions, 4 MIBG scans, 4 bone marrow aspirations, 4 MRI scans, 3 CT scans, 5 ultrasounds, 1 oophtectomy, 1 stem cell harvest, 2 biopsy surgeries, 28 central line dressing changes, 15 GCSF Intramuscular injections, 12 NG tube insertions and more than double the dressing changes on the NG. 5 Echocardiograms, 3 hearing tests, 3 CTGs, 7 hospital admissions (outside of chemo) due to side effects including 4 episodes of severe mucositis. IV medications of many varieties, so many blood tests I cannot count.

Then there’s the part I prefer not to count; the amount of times Ava has cried in pain, in fear of what is being done to her, sheer frustration when being isolated to a small hospital room and ward. The amount of times she’s begged her parents not to take her in the treatment room to do dressings, to give injections, to have NG tubes inserted. The times she’s complained of pain in her bones, in her tummy. The sickness and vomiting. The hair loss. Just all the side effects of the past 6.5 months.

But there’s also been many happy times I have tried to document - the times the beautiful staff have positively engaged with Ava, made her laugh and smile. The charities that support her - starlights and clown doctors who come visit her and sing and dance. The beautiful volunteers who give up their time to support families - playing beautifully with Ava, walking her Round and round the ward endlessly. The times outside of hospital when she’s well and living a somewhat normal life, doing the things she loves like swinging in the park, saving sea snails stranded on the beach, visiting the farm and the sea life centre.

Ava’s results were positive I am glad to announce! She will move to the next phase of treatment - surgery. So we are relieved to finally hear this news!

However I want to be honest with how we are feeling. For us, the results are both positive and negative. Positive that she shown a response to the extra chemotherapy she had received, however negative that her curie score was not as low as we had hoped for. It hurts that she has had to go through 8 cycles of chemotherapy and this damn Neuroblastoma is still present in her body.

Ava’s endured so much in 6.5 months. Spent more time in hospital than most will ever spend in their whole lifetime. More treatment than most will receive in their whole lifetime and she’s only 2.5 years old.

She remains strong, she remains positive and constantly proves to us that she will not be beaten!

www.avasjourney.com.au
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Ava’s been admitted to hospital. We expected this to happen after the 8th cycle of chemotherapy and she did so well to last until today.

This little girl has been suffering pain - pain in her bones, pain in her gut and mouth from mucositis, severe exhaustion from low red blood cells, bruising and blistering of her skin from low platelets... but she did so well still finding the energy to do some arts and crafts over the weekend, fly her kite at the beach as we had promised her & see some friends.

Her blood and platelet counts were so low that even changing her dressings today caused her skin to bleed.

This is now her 4th nap of the day. But she’s receiving blood as I type this post which should offer her a little more energy, and the platelets should stop the bruising and bleeding.

So she’s now on IV antibiotics (as she also spiked a fever of 38.9 degrees C) fluids, pain meds and is likely to be admitted for the rest of this week.

We hope she gets out before James birthday on 7th so we can be together (outside of hospital) to celebrate as a family!

Then if all goes well... in 2 weeks we hope to go on a little family break with the charity Koala Kids to Tasmania - which will be amazing to just experience a little bit of what life was like before Ava’s diagnosis... it will be amazing to see her excited to go on a plane, to have fun playing and just generally spend a weekend together. ♥️ lets hope it happens!
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This is my first update in a while - sorry. It’s been a pretty tough week.
We have been so grateful to have Ava home - in fact for the longest period we out of hospital so far actually - 10 days!

Ava’s oncologist weighed up whether Ava needed to have chemotherapy on Monday (today) or not and given that this week is a special week...(detailed below); he decided Friday was acceptable.

Up to Friday last week, I was working a lot. This was my last week before I take a few weeks off for maternity leave and so I had so much to do. This on top of last minute maternity appointments, and some further appointments for Ava. I generally cope well with pressure but this definitely got too much.

I became overwhelmed, allowed myself to think too much of the bigger picture, looking into the future, reading and then obsessing about the stories of other children with Neuroblastoma who have not survived or who have relapsed. Of parents who are now having to do palliative care at home on their 4 year old - it was just unbearable to comprehend and my heart breaks for them.

I worried about how life will be with a newborn and also a toddler with cancer. How I would juggle this with work. How James would cope as a stay at home dad to both of them. About raising enough funding to get Ava to the US for treatment. About long term side effects. About her mental health because of all this. Worry Worry Worry.

See this journey is brutal... we try to remain strong but it hits you sometimes like a tonne of bricks, reminding you that life is so fragile and unpredictable. My usual coping strategy is to try live in the moment - using this knowledge to make the absolute most of the time we have with eachother and our incredible daughter Ava. But sometimes, it overwhelms you and you cannot help but panic over the fact that we may well lose our precious girl, still so tiny and because of such a brutal disease. I feel angry that she has to suffer like this. That she cannot just be a normal happy toddler.

I am writing this post at 4am in the morning, Monday 17th September. I can’t sleep. At 8:30am I will arrive at The Royal Womens Hospital with my dear friend Renae, to have my second baby. This time my waters will be broken to start labour. Probably sometime on this day, our baby boy will be born.

This should be exciting, and part of me of course is (James definitely is) however I also feel sick. I feel guilt. I feel terrified.
I feel like this because a) worry of how we will cope as a family with another to take care of. How the dynamic of our family will change. How Ava will react and cope. The logistics of hospital life with a baby in tow b) guilty that my time won’t be able to be just for Ava even though I feel it should be. I feel pain about how she will feel that I cannot hold and cuddle and lay holding her hand whilst she settles to sleep as much as a could. c) I feel terrified about this baby being sick - will he also have cancer? Will my exposure to chemotherapy have affected his health (I know this is unlikely and I have been careful but these thoughts creep in). I fear how we would cope with 2 children with intensive medical needs. d) I fear for my own mental health. Will I cope? Will I suffer PND given the situation? I hope not.

I also feel sadness and gratefulness. Grateful firstly to be able to successfully have and carry a second child. Grateful to give Ava a sibling to love and play, and grow with. Grateful to my friends for their support and to Renae for attending the birth with me. But also sadness that our difficult situation means James cannot be with me for my labour or birth (although he will try make it for birth) due to the need to take care of Ava. It’s hard for him that he will not be there to hold his baby when born and be with me throughout.

This post has been more about me as Ava’s mother - I apologise for that. But it provides a little insight to what we as a family face currently and how this journey greatly affects us as parents also. We aren’t always as strong as we seem.

Today we will (likely) add another baby to our little family. Wish us luck, good health and smooth birth. I will keep in mind how strong Ava is with what she has to go through and use that to help me through. And I will keep hope in my heart that this baby is going to bring all the happiness and joy to our family to keep us strong, keep Ava strong and keep fighting on.

Here’s to the next chapter (oh and of course I’ll post some beautiful “twinning” photos when I have them - that’s right, I have already bought matching outfits for them both, as has nanny (my mum)

Thanks for following Ava’s Journey - I will get better with posts and pictures! It’s important to us that Ava’s Journey is documented, that awareness of Neuroblastoma (and childhood cancer) is spread through her story and of course so imperative that we use her journey to ensure she gets the vital funds we need to help Ava continue a life - thanks for supporting, following and sharing and please if you can, continue to do so.

Ava’s website has all details on how to help her or donate if you wish: www.avasjourney.com.au
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203.130 $ del objetivo de 350.000 $

Recaudados de 3.451 personas en 7 meses
Fecha de creación: 8 de abril de 2018
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