Ava’s Journey - Life-saving Vaccine

228.231 $ des Ziels von 350.000 $

Gesammelt von 3.665 Personen in 9 Monate
Erstellt am 8. April 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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Update 24
Gepostet von Ava's Journey
vor 1 Tag
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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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Update 23
Gepostet von Ava's Journey
vor 8 Tagen
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FEAR. I don’t think I ever truly knew what it was to feel fear until Ava was diagnosed. On the outside I portray a pillar of hope and strength but inside, if I’m honest I am a wreck with fear.

I look at Ava’s beautiful face and though she’s smiling and so strong, inside I break down - awash with all the trauma of the past 8 months and most of all a constant sick feeling in the pit of my stomach brought about by fear. Fear of losing her. I of course smile back and pretend I don’t feel this way.

I know this is negative, and I honestly try to stay positive, try to live in the moment but recently, with Ava having a transplant and how sick it made her..plus the side effects she still suffers daily because of it; I am struggling to see the positive. The research I have been doing to make a decision on her next treatment path has highlighted how evil this disease is and how difficult Neuroblastoma is to treat - that too has left my hope and positivity somewhat depleted.

I’m then so hard on myself, for thinking negative thoughts. For looking at my daughter as if it’s the last time I’ll see her. I don’t want to think this way... no parent does but sometimes it’s so hard. It truly is one horrific roller coaster ride... you’re screaming at the top of your lungs to get off but no one will let you. And some days (like today) you just wonder how you can possibly continue. But we will, and tomorrow is a new day.

I managed to get the oncologists to agree to scan Ava before the next transplant. She will have an MIBG and CT scan on Thursday. We will receive the results on Friday. I truly hope it’s been successful in reducing her cancer but once again “scanxiety” kicks in. That terrible fear of bad news. I so hope it’s not.

This journey has definitely made us strong, and it really has made us appreciate life, live in the moment and not take time with our children for granted, but some days you just feel weak, tired and scared, and that’s ok.
It’s hard for me to show that weakness in person, much easier to write about it. I feel it’s important to document these feelings on this journey - they’re real and they’re valid. I want to look back at the end of all this and be proud of what we managed to get through together. ♥️
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Update 22
Gepostet von Ava's Journey
vor 14 Tagen
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We are still enjoying time at home together. Yesterday Ava and I built a zoo complete with an Australian animal enclosure, a big cat enclosure, hippo lake and more! It’s so lovely to see her playing so imaginatively.

Life has kind of felt normal.

I have in the background been doing a lot of research and learning about treatments available for Neuroblastoma. Learning about long term side effects of the treatments she is receiving, how to best keep her healthy through all of this and IF it is absolutely necessary for Ava to have a second transplant.

My head and my heart are broken from what Ive learnt. We try to live each day as it comes but sometimes it’s not possible - sometimes you have to learn and prepare yourself. We have some major decisions to make at this moment in relation to Ava’s treatment path - decisions no parent should have to make and decisions that whichever way I turn have an impact on Ava’s life - survival and quality of life. I’ve learnt from my research that this cancer journey is one big gamble. There are no guarantees and no real way to know what’s best. So many contradictions it’s a minefield to navigate through.

Ava has such a long way to go. And we won’t stop until we can give her both the chance of survival AND the best quality of life we can. It’s both a timely and financially costly journey but we have so much support (people financially helping through ongoing fundraising for treatment and also emotional/ practical support) so thank you all - we appreciate the ongoing support for Ava’s Journey.

Today we are in hospital talking to the oncologists about scanning Ava again in between the two transplants. This is with the intention of helping us as her parents make the final decision on how we want to proceed with her treatment to ensure she not only is cancer free but also able to live a quality of life with limited serious side effects.
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Update 21
Gepostet von Ava's Journey
vor 1 Monat
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Memories like this hit us hard sometimes.

A year ago I took this picture of Ava running around crazy in Black Rock park - climbing up the slide the wrong way, climbing up anything actually! Now Ava can barely climb up 2 steps without help.

This memory I think hits us hard because this beautiful picture of smiley happy Ava became the face of Ava’s campaign to raise money for a life saving vaccine... because she has stage IV high risk cancer. I would never have imagine this when taking this photo of her one year ago. Nor would I ever have thought possible to raise money to send her for the vaccine... but we have and we are! ♥️

Ava is still the smiley happy girl you see in this picture. But her smile this time hides a lot of pain and suffering. She is the pinnacle of strength and wisdom beyond her years - this little 2.8 month old can tell you exactly how to use a blood pressure cuff, she knows what ‘obs’ are, she understands what a central line is, she knows what hydromorph is. She also understands pain. A toddler shouldn’t tell their parents “I have pain in my bones” or “it hurts to speak because of mucositis”. But Ava can. She knows pain beyond what most adults can comprehend. But she still smiles every day.

Ava has completed her first Stem Cell Transplant. All in all we were in hospital for 41 days. It was by far the hardest thing we have ever experienced. Ava has always been SUPER strong throughout all her chemo rounds, but this transplant came close to breaking even her strong little spirit I could see it. I hope she stays strong through the next one in a couple of weeks time.

She’s bounced back! As Ava always does! and just in time for Christmas! We got to leave yesterday and are now settling back in at home. Her gut still doesn’t work properly and causes her a lot of pain. She isn’t on full rate of feeds but enough to sustain her.

I am spending AGES putting her meds together - morning noon and night - opening up capsules, crushing tablets.. everything measured out accurately! ‍♀

Cancer parents will know all too well how this feels, but at times like Christmas you cannot help but wonder (however much you try to stay positive) if this will be the last you have with your child... it certainly makes you appreciate and make the most of it!

But we are all home for a week or two until the start of her next transplant! We have a Christmas tree up, Ava is currently sat playing “farm” with her animals in her playroom which is AMAZING to see! and we will have Christmas at home together! YEY! We will make it memorable!

Merry Christmas everyone! We wish you a very happy holiday! ♥️
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