Dax's story - rhabdomyosarcoma and brain tumour symptoms

The surprise trip to Disneyland Paris

It all started in early March 2020 with a surprise trip to Disneyland Paris. We’d kept it a secret from the kids for almost a year and surprised them at the airport. We were all so excited. Once we arrived we realised something wasn’t right with our son, Dax. One half of his face was barely moving. We were really worried so we took him to the hospital whilst we were in France. He was checked over, bloods carried out and given the all clear that it was likely Bell’s Palsy but that they would advise us to have an MRI done once we returned home to rule everything out. They assured us he was safe to finish the trip and celebrate his big sister’s birthday and I’m glad he did because he loved the magic of Disney. One of his favourite films was Frozen and they had a Frozen event on at the time so he loved seeing Elsa and the special Frozen parade with all the songs and characters.

What followed made us extremely worried

A couple of days later, we landed back home and went straight from the airport to the children’s hospital. Again, we were assured it was Bell’s Palsy and we were given steroids to try, and a referral to neurology after we expressed our concerns and wanting an MRI scan. Dax’s condition wasn’t getting better and we’d heard nothing from the neurology referral. Only a couple of weeks later, Dax was really poorly all of a sudden. He was vomiting repeatedly and could no longer balance to stand or walk unaided. Very different from the little boy who was normally running around with his sister. We were extremely worried. After racing Dax up to the A&E department he was admitted and, in the days, following he had two MRI scans done. What they found was what they believed to be an acoustic neuroma is a type of non-cancerous (benign) brain tumour. They assured me that it was so small, “the size of a peanut”. Dax was discharged home for us to wait and hear the results of their meeting and the diagnosis. Soon, we had the phone call to say they are going with the diagnosis of the acoustic neuroma with the possibility of Neurofibromatosis. However, surgery would not be considered as it was a benign tumour. Instead, they planned to ‘watch and wait’ re-scanning in three months’ time.

We planned to travel to the USA for surgery

My husband and I were overwhelmed by it all and so trusting, but we soon became frustrated and found a specialist surgeon in the US to remove the tumour. We’d managed to fundraise the required amount in an incredibly short time and had been communicating and planning with the hospital and surgeon in the US. We’d repeatedly asked the consultant here to remove the tumour but they would not change their minds. All of a sudden, Dax started having blood coming from his ear and what looked like a growth. We took him back to the hospital again. Alarm bells were really ringing for us, it was on the same side as the tumour. But over the next two weeks, we were repeatedly told it was impossible, and that it was a foreign object that Dax had gotten stuck in his ear and also an ear infection. We were given multiple different ear drops and antibiotics but nothing was working, it kept growing.

Dax’s oxygen levels became very low

On 16 May 2020, we’d had enough and we knew something was really wrong so I took him back to hospital where they booked him in for an MRI, but before sending us home to come back in a few days for it, they discovered Dax’s oxygen levels were low. We were soon admitted and he was having bloods taken, a feeding tube placed and oxygen on. It was really stressful and emotional because we were being isolated until our COVID swabs came back and there was a one parent only rule in the hospital. On 18 May 2020, Dax went for his MRI and our world really starting crumbling. It was only six weeks since the last MRI but his tumour had grown aggressively, was now very large and was displacing Dax’s brain stem greatly from its growth and pressure. They didn’t know what kind of cancer it was yet but they knew it had to be cancer, it was bad. All the medical teams seemed to jump into action and although it was a relief, it’s what we’d been desperate for weeks ago but they wouldn’t listen.

Another exact tumour was discovered

Obviously, Dax was extremely ill and wasn’t going anywhere so the treatment in the US was put off. Days later Dax went for tumour resection where they managed to remove 70% of the tumour but in a bizarre twist there seemed to be an exact replica tumour forming on the opposite side now, the exact same way the first tumour had started. We then received quick news from pathology that we were dealing with Rhabdomyosarcoma. Dax started a standard combination of chemotherapy treatment called IVADo only days after recovering from his surgery. We all knew how fast this cancer was growing so we couldn’t waste any time. We felt able to take a breath. They’d removed a huge chunk of tumour and he was now on treatment for it. But then, 10 days post-surgery, Dax started having multiple seizures. Dax was rushed to ICU where they rapidly ventilated him. He stayed in ICU for almost a week. He was given an emergency CT scan which showed he’d developed Hydrocephalus, so they did emergency surgery to fit a drain to drain off the excess fluid around his brain. Days later they fitted a permanent shunt. Dax had multiple surgeries as well as chemotherapy, with time spent in High Dependency Unit and Intensive Care Unit.

Dax constantly vomited

Soon, Dax was back on the oncology ward and although he was constantly vomiting among other side effects from the treatment, we thought we were moving a bit smoother and were even discussing the hopes of proton beam radiation therapy in Manchester after his chemotherapy which was part of the planned treatment. Unfortunately, the results from his MRI in mid-July were not good. The scan showed a mixed response to the chemotherapy but the new tumour had slightly grown and there was now cancer in his spine and Cerebrospinal fluid. We were told there was nothing more they could do but make him comfortable. We really weren’t expecting it as we’d watched the tumour that had grown out of his ear canal disappear in response to the treatment. He was doing the best he’d been in two months. Dax was finally discharged home but it wasn’t under the circumstances we’d hoped for or imagined.

We wanted to try all we could so we came up with another plan, he was too poorly to be sedated for radiation so we decided to try a different chemotherapy. We were clutching at straws but as a parent you’d try anything to save your child.

End of life care for our Dax

Sadly though, Dax was soon back in hospital. His breathing was getting weaker when he slept. They prepared us for what they thought was to happen in the coming days and moved Dax from palliative care onto end of life care. Dax was tough though, he soldiered on for a month and a half longer, even being taken from end of life care and going back onto palliative care. In that time, we got to make memories as a family and spend time at home together. His sister had barely seen him for two months and they’d missed each other desperately. We’d missed all being together, the four of us. He even got to have the burger and ice cream that he’d been so desperate for the last two months.

Soon, we made the heartachingly impossible decision to stop all the treatment. With Dax now having full facial palsy and being deaf in both ears among other physical problems, we could see that even with a miracle his little body had been wrecked from the cancer. It just wasn’t fair to him to continue.

Dax got his wings

On 31 August 2020, Dax passed away at home in my arms. He’d been surrounded by all of his family that day and we’d told him it was ok to go. He was two years, seven months and one day old.

He’s greatly missed and loved every single day. We talk of him all the time, have his photos up and even his little hat and jacket hang in our hallway along with his shoes. He’ll always be loved and remembered.
Devon, Dax’s mum, June 2022

Update September 2022

As a family we never know what to do for the anniversary of Dax’s passing. We want to honour him and remember him.
This year, we did that with the fantastic support of our community as we hosted a charity night in Dax’s honour, raising £7,132 for Children with Cancer UK. It was great to know everyone was there keeping Dax’s memory alive and supporting a cause that’s so important to our family. Everyone had a great night and we know Dax would have been up on the dance floor with us too.