Ava’s journey -Life Saving Vaccine

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Hi all! We are Leanne, Ava’s Mum and James, Ava’s dad.

Firstly, thank you so much for taking the time to like this page and read Ava’s story.

I wanted to share with you why we have taken the steps to create this page following Ava’s diagnosis with Stage 4 high risk Neuroblastoma on the 7th April 2018.

This page was initially set up by our dear friend Thyra to help relieve the financial burden of James having to stop working, medical expenses, a new baby on the way and everything in between since Ava was diagnosed in April 2018. Since then, we have updated the page to continue our fundraising with a sole focus on Generating enough funding for Ava to receive a potentially life saving Vaccine. 

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, 10 blood and platelet transfusions down, too many medicines and blood tests to count, 5 X-rays, 7 ultrasounds, 4 MRIs, 2 MIBG scans down. She’s also had multiple other treatments including weekly dressing changes etc.

The main treatment of course is her cancer treatment! She’s 6 cycles of chemo down, with 2 to go.

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 - approx 14-18 months. 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.

So that brings me to this page - WHY ARE WE DOING THIS?!

Well - the most annoying thing about Neuroblastoma is it’s tendency to reoccur. The rates of relapse following remission are high - approx 75%. Of those 75% 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 worlds 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 $300, 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 over the next year 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!

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.

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.

Any questions you may have you can inbox us on this page or contact me directly.

I’ve placed a few links for you below also which includes our go fund me page, and more information about the trial.

Thank you so much for ready this VERY LONG post - we truly appreciate it!

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


Facebook: Avasneuroblastomajourney

website: www.avasjourney.com.au 

instagram @leeleeloves12

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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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I thought I’d share our Wednesday with you. It’s a long post but I want to document it for our memory as well as share it, so if you have time, take a read... It looked a little like this:

Woke at 5:30am. Ava crying out in pain. James sleeping on the floor in her room (as she will no longer sleep on her own)

Give Ava endone to help her pain. Put her in bed with me to try get her back to sleep. She’s tired.

Get up at 7am. Prep her bag for a day in the hospital. We have bloods to do, an appointment with the oncologist and she needs to have all her dressings changed. Plus today is day 10 after chemotherapy and so she’s due a GCSF intramuscular injection to help stimulate stem cell growth.

8am prepare Ava’s medication. Pain medication for bone pain, 2 anti-emetics for sickness due to chemotherapy. All prepared for NG tube administration as she won’t / cant take anything orally.

Brush Ava’s teeth before we leave - now this is a hell of a job for any parent with a toddler I am sure! Ava’s mouth is very sensitive due to chemotherapy. It becomes very sore, blistered and she literally screams out in pain. I clean them as gently as I can. Her mouth is bleeding quite a lot. It’s clear Ava needs a platelets transfusion today.

James makes her food - formula feed. Sets up giving set and feeding machine to run continuously throughout the day. Again another challenge getting a toddler to comply with wearing a backpack all day!

I get ready for work. After the hospital appointment I will go into work whilst James continues the day in the hospital with Ava.

Drive an hour to the hospital with windows open, trying to make sure Ava isn’t sick all over herself and the car seat. She’s upset. Doesn’t want to go to hospital, has pain in her tummy (chemotherapy also causing her diarrhoea) and she feels sick.

In the hospital Ava is now happy she remembers she can now play. Toys, lucky dip box, and lovely nurses and play therapists she likes to chat to.

Have an appointment with the oncologist. Try to take in the following information given;

1. Changing up Ava’s next cycle of chemotherapy. Ava’s Neuroblastoma is difficult. She’s been a poor responder. They are keeping her off protocol and following a trial that’s unpublished but shown great success in North America.

2. Trial compared Neuroblastoma kids like Ava receiving one transplant chemotherapy (current protocol here in Australia and in EU) compared to kids receiving a double transplant (standard protocol in North America) - results are: NONE of the kids in the single transplant did well, disease progressed. In the double transplant 55% had a positive response. (Still a low % in my eyes )

3. Told us he and the board have decided this is Ava’s best chance. What that means for us;
Ava will have a double transplant. 10 weeks in isolation as opposed to 5. Different drugs being used to the standard ones used in transplant that they are experienced with using. Her next and last cycle of the extended chemotherapy will match what they used in the trial - the nasty agents that make Ava exceptionally sick. JUST AS I AM HAVING ANOTHER BABY! ‍♀

Next Ava has to have dressings changed, lines cleaned, blood taken and a GCSF injection:

This is hard. For any parent. She hates it. Now some positive success is we no longer have to use a sedative (midazolam) to do dressings. We can do it without. But she is terrified. We have to restrain her whilst she cries and pleads with us not to do it.

I comfort her. Tell her it’s ok. She’s safe, it doesn’t hurt. Nursing staff and comfort first (play therapists) are AMAZING! So helpful, so calming.

We successfully take off old dressings. Carefully wash the line that’s now exposed into her heart whilst restraining Ava so she cannot pull the line out. Ava’s done well! She bounces back quickly, playing with the toys brought in to distract her.

Now GCSF injection in her thigh. A small device “buzzy bee” is placed on her leg to distract from the pain of the injection. The injection is quick, sore but over fast. The thing with GCSF if the pain that can be excruciating in the bones when it’s stimulating stem cells to grow. Ava gets severe pain in her little legs.

Blood taken, she needs platelets. So a platelet transfusion is organised.

I go to work. James stay in hospital. I finish work, go to late appointment at the women’s hospital for the new baby (luckily the women’s hospital is next door to the children’s hospital). Chat to midwife, try to take in all info on the impending arrival of new baby, then drive back to hospital to pick them up.

In the car it’s 6:40pm. Ava is exhausted. She’s upset because she’s sore, tired and feeling sick. Halfway home she starts vomiting. James acts quick, holding on to her NG tube in the hope she won’t vomit it out. It stays in! YEYY Small wins!

Pull over in 7-11 petrol station. James cleans Ava with baby wipes, cleans the car seat, change of clothes, whilst I hold her (she’s cytotoxic and I am pregnant so can’t come into contact with her body fluids). And off home we go!

Home at 8pm. Do Ava’s medications again. Do her NG feed again for overnight. Bath Ava, put her to bed. Laying on the floor holding her hand until she finally goes to sleep.

Eat dinner together. Watch 1/4 of a film. Then James goes to sleep in Ava’s room on the floor. I get into the bed alone. Set an alarm for 2am when I need to get up and give Ava her next dose of medication.

Thursday is a new day! adamant this one will be better - james will try take Ava out to the park / beach etc and hopefully she will have a bit of fun! And I will go to work.
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September is childhood cancer awareness month. I wanted to share some facts.

This page is all about Ava and her journey with Neuroblastoma; however she isn’t the only child suffering / who has suffered this terrible disease. Some we see fighting for their lives like Ava in the Royal Children’s hospital each day. Some we read about from other parts of Australia and the world. Some have battled and won. Some battled and devastatingly didn’t survive. Some are newborns, toddlers like Ava, some are slightly older or in their teens. All kids. All not deserving of this hand they’ve been dealt.

In the picture below left is Ava a year ago in 2017. A seemingly happy healthy toddler loving her food and a good babycino. On the right is Ava 1year later in 2018. Unable to eat and sustained with a high calorific formula feed provided via an NG tube. Small and underweight for her age. Alive only because of the toxic medicines regularly administered Through the lines you see going into her heart.

What a difference a year makes.

Childhood Cancer is not rare. Just people don’t really know or want to think about it. We didn’t. Until it happened to Ava.

Some facts for you:

On average 900 Australian children will be diagnosed with cancer this year

One in five of those children will die.

Of those cured, 10% will go on to develop a treatment related cancer in later life

Almost half of childhood cancers are diagnosed between the ages of 0-4 years

These are the hard facts to absorb and are the same throughout the world:

Childhood cancer is the biggest killer of children out of any childhood disease.

Government funding for cancer research is disproportionately directed towards adult cancers. 4% of funding globally is expected to be received for childhood cancer. Just 4%.

Did you know the average age of diagnosis of cancer in an adult is 67 years - average life lost to cancer is 17

The average age of diagnosis of cancer in a child is 6 years - average life LOST IS 71 YEARS!

And finally. This one hurts me the most:

Neuroblastoma claims more lives of children under the age of 5 than any other cancer.

Go Gold for kids with cancer!



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This journey started on 7th April 2018. The first picture was taken on Easter Sunday -1st April. Ava seemingly normal little toddler, just a bit unwell with a virus.. until her diagnosis with Stage IV High Risk Neuroblastoma.

The last picture is a picture James took yesterday evening of Ava and I... 5 months on. Ava was sore from her bone marrow aspiration, and had issues with her oxygen (hence the extra tubes in her nose) and was rather swollen but generally all went well.

This journey has by far been the most difficult that James and I have ever (and probably ever will) face. For Ava this journey is traumatic, gruelling and far beyond what most should or would go through their whole lives, let alone in 5 months so far. Her short life of just 2 years old makes it difficult for her to understand why she has to walk this journey, and her pain and suffering is beyond the comprehension of most.

However her age is also her saving grace. Ava lives in the moment, every moment and quickly bounces back. Ava will hopefully live a long and happy life with limited memory of this traumatic journey (with all the support from you wonderful people trying to make sure this happens for her - thank you! )

Ava remains a shining star, a bright beacon of positivity and happiness despite what is thrown at her.

Yesterday Ava had her scans. An MIBG and a Bone Marrow Aspiration to check her response to the extra cycles of chemotherapy added so far, due to her lack of response a couple of months back.
James and I felt sick. We were so nervous and to be honest we had already set ourselves up for bad news. We were used to bad news on this journey so far.

But we were WRONG! It was GOOD news! our amazing little Ava bear IS responding finally! Her cancer when diagnosed was given a score of 18. After her induction chemotherapy cycles, she had barely responded and her score was still 15 (expectation was to be around 3). After the current treatment protocol she’s now at a score of 7! We couldn’t have been more relieved!

Ava’s Journey is far far from over. There will be many more hard times ahead, and for Ava; treatment will become even harsher. But we are now able to feel a little more hopeful that she’s going to be ok. For the first time in 5 months we experienced a little bit of happiness.

If I wasn’t pregnant I would drink a glass (or 3) of wine to celebrate!

so here’s to our amazing Ava bear! Our little warrior! though she be but little... she is fierce!
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