“I am wishing, praying, hoping for just another six months, one more Christmas and summer to create more memories with my beautiful girl.”

Ava’s story, written by her mum Amanda.  

In September 2018 Ava (2 years old) developed gastro like symptoms and an increase in ‘terrible twos tantrums’. Ava was going to day care five days a week and her educators had also noticed she was getting increasingly clingy. Damien (my husband) and I noticed she was becoming a bit quieter, a bit more tired. Everything else was fine. No outwards appearances of anything wrong. Over the next couple of months, we were regulars at Queensland Children’s Hospital emergency department – gastro, more gastro, torticollis (stiff neck), more gastro. Ava had tests to check if she had a twisted bowel, kidney issues, dehydration, stomach issues but there was no mention of anything neurological.

In November 2018 the gastro symptoms were still appearing, and the vomiting was almost daily but only in the mornings. After she was up and about, she was fine, mostly her old self. Late November Ava and I were dancing around the living room to Emma Wiggle when she screamed, grabbed the back of her head and lost control of her bladder (she was toilet trained by now). I just knew something was seriously wrong. On our sixth emergency visit blood tests were taken and the results indicated cancer. Ava was booked in for an MRI the following day. Cancer had never entered my mind over the past months. There has been no paediatric cancer in either my husband Damien or my families.

Ava was put under a general anaesthetic and a full brain and spine MRI was performed. Once Ava woke up, we were escorted back to the ward where about four medical staff were waiting. I was asked if I wanted to have the conversation in front of Ava and my whole world crumbled in that moment. The MRI showed a brain tumour the size of an orange wrapped around Ava’s brain stem. Immediately I asked if it was because I had Ava at the age of 40, is it something that I had done, something I had been feeding her, the lifestyle she had been leading. I was looking for some kind of reason, but there wasn’t one. It was just something that happens to way more kids than I ever knew. I never even knew brain cancer is the most common cause of death of kids out of any disease.

Ava was admitted to hospital immediately and the on call neurosurgeon, Dr Gert Tollesson, and oncologist, Dr Rick Walker, came to see us that same night. Both Doctors have been incredible, kind, transparent and supportive. I feel so lucky they were on shift that day. They told us the tumour had probably been growing for the last year and if we hadn’t kept persisting and coming into emergency then the tumour would have eventually cut off the oxygen supply and Ava would die. We had about six weeks left until this would have happened – we would have been smack bang in the middle of Australia driving to Adelaide to spend Christmas with family.

Ava was put on steroids for three days to reduce brain swelling before surgery. Looking back on that time now seems like such a daze. I was so ‘green’ in the cancer world, I could barely even spell oncology let alone understand what it all meant and what was to come. The Children’s Hospital Foundation were a godsend over this time. The volunteers helping us with the basics like navigating the hospital to providing me comfort as I escorted Ava into theatre not knowing if she would come out alive or changed forever. Ava’s favourite thing before surgery was a visit from Dexter and Nanook the therapy dogs. What a wonderful gift that was at a very dark time for all of us.

The first surgery lasted for seven hours. Ava was taken to ICU and we were told the surgeons were able to remove 90% of the tumour but there was 10% remaining stuck to the brain stem that could not be removed. It wasn’t until a day later that we learnt Ava had a stroke during surgery which resulted in weakness down the right-hand side of her body. The staff in ICU also didn’t know this and as a result Ava aspirated, developed pneumonia and a collapsed lung. It was touch and go for many days and Ava spent a total of 10 days in ICU fighting. After this we were transferred to the neuro ward where we stayed for two weeks, desperately hoping we would be out for Christmas. We had two weeks of rehab as Ava couldn’t swallow, eat, sit up unaided, walk or speak. Damien and I took turns staying at the hospital and spent most of the time in a fog.

We found out the cancer was an ependymoma – anaplastic and grade 3, the worst type.

We finally got Ava home late December before Christmas with a naso-gastric (NG) tube as she needed to be fed directly into her stomach due to vocal cord palsy – a symptom of the stroke. Ava decided to pull the tube out of her nose, and we ended up back in emergency on Christmas Day. That was certainly a Christmas we won’t forget.

January 2019 saw us start seven weeks of chemotherapy to try and shrink or slow the growth of the remaining 10% on the brain stem. Ava couldn’t have radiation straight away as her brain was still developing so we were trying to hold out until she was three. It was so hard watching Ava lose her hair, shaving her head, seeing her so sick. She took it all in her stride though but unfortunately the tumour grew again during chemo. This meant a second surgery in March 2019 before we started radiation to remove the new tumour.

Early April 2019 we began 33 rounds of radiation. This was performed daily under general anaesthetic. Each morning Ava would have to fast and then have a GA, undergo radiation, recover and then go home. The process took half a day and took a huge toll on Damien and me, as we juggled full time work and carer responsibilities. Every day waiting for us were the beautiful ladies behind reception at 4B. Over the weeks we became friends and they were so kind to Ava, with Leanne providing her paper and stickers every morning on arrival. The volunteers in the surgery waiting area played with Ava and made her forget for just a little bit. Radiation finished in May 2019 and we were then transitioned into a ‘wait and watch’ world of an MRI every three months.

Scanxiety is real. I’d be ok for a few weeks after an MRI and then a couple of weeks before the next one I’d be so anxious that we were going to get bad news. Our oncologist told us early on that ependymoma is a highly recurrent cancer and our goal was to keep it away for minimum 12 months. I was told if it came back within 12 months the likelihood of Ava reaching seven was only about 20%. News no one wanted to hear.

First (Jul 2019), second (Oct 2019) and third (Jan 2020) scans post radiation were all clear. We were so happy that our warrior princess was truly beating this horrible disease. The last of the scans (Apr 2020) before we reached the 12-month anniversary of end of treatment showed ‘slow progression’. Not a tumour, not anything definite, maybe nothing, maybe something…. but a slight change. We had to wait another three months to find out if this ‘slow progression’ was actually anything at all. Every time I looked at Ava over these three months, I’d be looking for some kind of sign, is it back? Am I being paranoid? Was that fall just a clumsy four year old or a cancer symptom?

In July 2020 the MRI showed another tumour had grown. The news we all did not want to hear, and the news that we knew meant a poor prognosis. We were devastated. The oncologist and neurosurgeon said we needed to operate soon. The tumour had grown from nothing to 2.5cm x 1.5cm in a matter of 12 weeks. This was considered ‘very aggressive’. Surgery was scheduled for the following week. Both our oncologist and neurosurgeon were confident that 80% of the new tumour could be removed.

Ava had her third brain surgery on 22 July which went for seven hours. We were told the longer it goes the better as that will mean they are removing tumour – a good outcome. Ava was moved into ICU and the neurosurgeon asked to meet with me. Sitting in the ICU hallway I was told that the tumour could not be removed. It was too risky as it was so close to vital vessels and nerves. If removed Ava would have had a stroke or died. I am so grateful the surgeons listened to my wishes for quality of life. Now Ava’s tumour was deemed inoperable. We knew what this meant. If the tumour continued to grow at the rate it had over the past three months, then we would only have another three months with our beautiful brave daughter before the cancer took her life.

Ava was conceived after two miscarriages when I was 40. I had never met ‘the right guy’ before Damien and when Ava came along, she was everything that I had been waiting for. Damien has three children from a previous marriage who live with us full time and who adore Ava, and Ava adores them. She is a beacon of happiness around her sisters and brother. The thought of only having a few precious months left with Ava and the lifelong impact this will have on my step kids, and our families, is indescribable.

Dr Rick has got Ava into a new chemo trial out of Toronto which started on 5 August. As her tumour is not responsive to standard chemo treatments, we are hoping the combination of these two trial drugs will slow the growth or shrink the tumour. We want to prolong her quality of life as long as possible. This trial is a 28-day monthly cycle. seven days of chemo, six days off, one day of chemo, 13 days off – and repeat. Her response will be monitored after each month and we are praying for positive news. I’ve been told to be realistic though – if it didn’t respond to chemo before it is likely it won’t respond again. Maybe there is then a chance of radiation but that didn’t work last time either.

I have quit my job to be Ava’s full-time carer. Chemo is brutal and as this trial is about determining the maximum tolerable dose for children, I can only imagine the side effects she will have. Last time when she lost her hair, we told her that her hair had ‘gone on holidays’ and it would be back one day. Her hair will now be taking another ‘holiday’ just as it has grown back to a point where she can wear pig tails. This time round I think will be different. She was two and a half before and didn’t care about appearances. Now she’s four and a half and she loves her clips, dressing up, lipstick and handbags. I am sure the loss of hair will be challenging for a small girl just finding her femininity. I’ve promised her that if she wants to be ‘twins’ that I will shave my hair off too.

When we told the kids that Ava was sick again and that this time the Doctors couldn’t get the tumour out, they wanted to start a bucket list to create beautiful memories with Ava before her time comes to leave us. Ava doesn’t know she is sick, and I am not sure I will tell her. She knows she goes to the hospital and loves it. Yep she wakes in the morning and asks to go to Kidzone every day! This is our treat before or after treatment. Ava loves the volunteers in Kidzone and this room has every toy Ava can imagine. Nothing is too much trouble for these wonderful ladies, and they will entertain Ava’s every whim for arts and crafts. Without these facilities and volunteers our experience would be very different and I am sure nowhere near as fun.

Ava’s focus right now is to build cafes and hotels with her sisters using Lego, play dolls, mums and babies, ride her scooter and bike, and basically just have fun each day. We are learning a lot from her and trying to live our lives the same way – in the moment, grateful for every day. Some days for me it is literally focusing on getting through 10 minutes at a time. I try not to let her see me cry.

I find it hard to accept charity at the best of times. I am definitely getting better, but it was a beautiful gesture when a good friend asked to set up a GoFundMe campaign. With a significant drop in income and an increase in expenses, every cent helps. The kids want to create great memories with Ava in case the worst does happen. She may not make Christmas, so we are thinking of having a family Christmas early. Starlight Foundation have brought her wish forward and we are getting a puppy soon – a Boston Terrier companion dog for Ava who she has already called Dexter, after the beautiful therapy dog she met on her first hospital stay. RedKite gave me some books this week on how to have conversations with kids about love, loss and dying. I am not ready for that, so the books have gone onto the shelf hidden by clothes. Even just knowing they are there breaks my heart.

We are currently living in a small apartment, all six of us, while some renovations get done on the house. We don’t move back in until November and my goal is to get Ava back into the house to swim in the pool and enjoy some summer. I am wishing, praying, hoping for just another six months, one more Christmas and some summer to create more memories with my beautiful girl. All we have is hope now and we hope that this chemo trial gives us some more time.

Funding brain cancer research is so important. I had no idea brain cancer is the disease that impacts kids the most in Australia, yet it receives the least research funding. How can that be? It doesn’t make sense to me. Kids are the future of our world and if this disease is impacting them so badly, at such a young age, shouldn’t we be doing everything we can to find a cure? The prognosis of brain cancer is not good. Is this why funding is directed elsewhere or is it a political issue? I am not sure. All I know is I would do anything to save my daughter and the other kids I have met throughout this journey and spare all the families the pain and suffering we are experiencing.

Story written and details correct September 2020.

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