Ava’s Journey - Life-saving Vaccine

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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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What a weird little period of time we are in at the moment. Life seemingly normal but very far from it. Home but never far from hospital and the reminder that the journey is not yet over with the daily routines of medications, NG feeding and weekly dressing changes.

Ava completed radiotherapy approx 2 weeks ago now. She did an amazing job staying strong through it and at the blink of an eye; it’s done! Another stage of the treatment protocol completed.

So the last couple of weeks, bar hospital appointments here and there Ava has been home, life fairly normal. And that’s the hard bit for me. To be honest I’ve struggled with normal. The anxiety of the wait to begin the next stage of treatment knowing she still has active disease. The hair growing back, the energy she has... you wouldn’t know she still has cancer yet that niggling anxiety constantly reminds me this isn’t over and she does indeed still have disease in her bones and marrow.

I’ve struggled with what to share for a while to be honest. Feeling pretty tired now after 14.5 months of this cancer journey (not the posts, the actual journey we are living). My Positivity has dwindled somewhat in the past month or so.

I fill my positivity bucket by the fun experiences we have with Ava and Angus and this weekend, since it’s her last before admission for the start of immunotherapy we will do just that! We have planned to take her on little day trips to all her favourite places (and the crazy weather forecast will not stop us )

So here’s an update of where Ava is at treatment wise;

Tomorrow (we only found out this evening!) Ava goes under general anaesthetic for Bone Marrow Aspiration again to check where the disease is at at this stage (she still has some bone marrow disease) - and there hits the Scanxiety with a resounding crash, bang!

Next Tuesday she has the radioactive tracer infused ready for an MIBG scan on Wednesday again under another GA to confirm exactly where the cancer is located in the body (last time there was just one site in her femur of left leg)

Next Friday she has the beginning of treatment for immunotherapy

Next Sunday she is admitted to hospital for a week to begin immunotherapy.

For those who aren’t sure what this is:

Immunotherapy is the use of medicines to help the body’s own immune system recognize and destroy cancer cells more effectively. A drug called Dinutuximab which is a Monoclonal antibody (man-made versions of immune system proteins that can be made to attack a very specific target) seek out and attack the cancerous cells with the help of several other meds (immune system hormones) to boost the immune system to destroy the cancer cells. (That’s my very top level explanation)

Hopefully - this is the golden ticket on the NED (no existing disease) express for Ava we have all of our hopes pinned on this! This also is the final stage of her upfront treatment before New York!

Immunotherapy goes on for 6 months in total, the antibody delivered each month with a week hospital stay. The rest of the medicines delivered from home (I think through hospital at home nurses?!) in between stays.

As always; there are side effects to these treatments, some very severe which include severe nerve pain, blood pressure issues, vomiting, infections, skin issues, then also behavioural issues such as rage. Let’s hope Ava gets off lightly this time good news is, immunotherapy side effects are not long lasting unlike radiotherapy and chemotherapy.

So now to try to stay calm leading up to these scans - let’s hope if there’s any change it’s in the right direction with less disease seen since radiotherapy

Pics of a very happy Ava with beautiful locks growing so fast! ‍♀
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Ava has just 1 day left of Radiotherapy. Compared to chemotherapy and transplant, this was a walk in the park...despite the daily trips to Peter Mac Cancer Centre taking over an hour each way, followed by poor Ava having to be put under general anaesthetic each day. Something she has become used to over the weeks, which in turn breaks my heart to see her surrender to the fact she has no choice in something she really fears

It’s started to take its toll on her; she went from eating quite well to not very much at all again, and unfortunately seems to be holding food in her cheek rather than swallowing it. the hospital say this is very common in children whom have been NG fed for a long period of time - and let’s remember; Ava has been fed via an NG tube for 13 months now. She has been referred to Speech and language therapy which help with eating issues of this kind. Just another crappy side effect of cancer treatment I guess.

The radiotherapy is making Ava tired, sore in her tummy and nauseous again which in turn is making her vomit despite having anti-emetics on board. We are trying our best to feed her nourishing meals through her NG tube to keep her weight healthy but it’s difficult and heartbreakingly Ava is losing weight. At 3 years old she’s tiny - just 11.9kg.

Despite all this, she still finds time for fun! She’s been spending her days at one of the cancer charities Challenge supporting kids with cancer playgroup which she LOVES. It’s such an amazing space for kids and families going through cancer. She’s been at the beach, the park, she went on the big skyline wheel, the museum, sealife centre and more! She’s tired, and sore but my gosh this girl can keep on keeping on!

1 more day, then a short break of approx 2 weeks before she begins Immunotherapy. Which is the final stage of her treatment (hopefully bringing her NED (no existing disease) before vaccine in NYC You’ve got this Ava!

Ps. Photo is of Ava enjoying a blue iced gingerbread cat yesterday (which I later realised she essentially just licked, stuck everywhere except her mouth and I found glued to the footwell of the car ‍♀)
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I cannot express how grateful we are that life is for now a bit more “normal”. Ava is (mostly) happy and pain free. Enjoying moments like this. The beach is where she’s in her element. And today was the most perfect beach day. Beautiful sunset, lovely warm weather and happy kids!

I have shared this on other platforms before but I wanted to share it here on Ava’s page - beautiful words written by Tess Guinery; she depicts what I believe all mothers hope for their children. I connect with these words completely and hope you guys like it too!

“If I choose to always grow,

maybe she will bloom like a wildflower.

If I make art from my everyday,

she too, will create her days full of colour.

If I let my tears fall and always when they need,

perhaps she’ll water the earth with an open heart.

If I’m clumsy-crazy and all about her Dad,

a beautiful-crazy-love is what her heart will search for.

If I let him forever romance me in the wake of day,

she will forever know no less.

If I say “I’m sorry”—even when it’s hard,

maybe she’ll be quick to forgive others.

If I choose to speak life in vibrant and rich colours,

let beige words never settle in her heart.

If I leave pretty love-notes, handwritten on every wall,

affirmations will line the depth of her soul.

If I choose the uncomfy and forever shake up my ways,

maybe she too, will stand to live life bold & brave.

If I take time to be alone & make dreaming paramount to my week,

she’ll learn solitude is important and a golden gift to seek.

If I look in the mirror and speak kind and gentle words,

she too, will forever know her worth.

If I fill our house with flowers, music & sweet loving scents,

maybe the silhouette of home will always be warmth.

If our front door is always open to those who are in need,

she’ll learn the golden purpose of life.

If I pray out loud and have real conversations with God,

maybe she’ll move mountains with her voice.

If I tell her I love her a million times a day,

maybe, just maybe, she’ll learn:

that even in my flaws,

my lack,

and my mistakes,

I gave her my entire heart—

My motherhood monologue” By Tess Guinery Design
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Our hearts were deflated and hopeless for so long. No matter how hard she battled, Ava always ended up with not so great results - slow response, still so much cancer.

Our hearts are BURSTING, full of hope since Ava’s newest scan results this week. All that Ava has endured has not been in vain and finally, FINALLY she has responded well!

Ava’s scans shown that her disease has significantly reduced. She had cancer in most bones in her body. Now she has a spot of active cancer in just one bone in her upper leg. She has some disease still in her bone marrow but again that has reduced significantly. Her curie score (Measures the amount of Neuroblastoma in the body) has reduced to 1!

This means Ava can continue on with normal planned treatment; we have a meeting next week with the oncologists at Peter Mac Cancer Centre where Ava will receive radiotherapy in the upcoming week or two (date yet to be confirmed)

Ava has been through a lot to get to this point. It has definitely not been easy, and we are not naive to the impact all this treatment will have on her long term health and wellness, but for now we can’t focus on that. We just can’t. For now the focus is keeping her here with us. And today has given us that big boost of hope that we can do just that. ♥️♥️
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