An Adelaide family is facing one of the toughest challenges of their life as 9-year-old Fraser Suggate fights aggressive brain cancer. The tumour, nicknamed ‘Bob the Blob’, has seen Fraser undergo urgent surgery which hasn’t gone without its hiccups.
This is just the start of a very long journey, balancing hospital visits and treatments, together with the overwhelming emotional toll as they try to maintain normality for Fraser’s 12-year-old brother, Henry.
Meet Bob the Blob
Fraser’s dad, Rob, wrote a song to explain to his son what is happening to him. He hopes ‘Bob the Blob’ can be used by the Women’s and Children’s Hospital to explain brain tumours to other children facing a similar diagnosis.
“He understands that Bob the Blob in his head and that he feels sick, but his doctors are going to take it out, and that will make him feel better” his mother Simone said.
But getting to Fraser’s brain cancer diagnosis wasn’t easy.
Long Fight For Answers
Misdiagnosis And Mum’s Determination
It all started back in April when Fraser started feeling unwell. Mum Simone took him to doctors who initially dismissed her concerns, telling her he had ‘a bug’, and then even diagnosing it as ‘anxiety’.
But Fraser continued to get sicker.
When he started vomiting, Simone took him back to the doctor who then diagnosed ‘gastro’, but noticed Fraser seemed dehydrated and suggested she take her son to nearby Flinders Medical Centre. Once there, they confirmed it was ‘gastro’, but Fraser wasn’t getting any better.
Simone says Fraser also suffers conductive hearing loss which happens when sounds cannot get through the outer and middle ear. She initially thought that this could have been connected to his symptoms, so booked him in to see an Ear, Nose and Throat (ENT) Specialist.
The ENT booked Fraser in for surgery in August to have grommets put in (tiny ventilation tubes put inside the eardrum to prevent a build-up of fluid). But before this could even happen, Fraser was rushed to Flinders Emergency Department after he complained to his mum of feeling dizzy and sick. Pushing for answers to the medical team, Simone says that they then performed a CT scan.
And then it all became clear.
Fraser Receives a Shock Diagnosis
Young Fraser was diagnosed with Medulloblastoma, a fast-growing, cancerous brain tumour located on the cerebellum.
“I was in absolute, utter shock,” Simone said. “I thought, why wasn’t a scan done earlier? I had so many whys!”
Medulloblastoma symptoms happen when the tumour grows or causes pressure to build up in the brain. They can begin before the cancer is diagnosed and may continue for months or years, even after treatment. Signs and symptoms of medulloblastoma may include:
- Dizziness
- Double vision
- Headaches
- Nausea
- Poor coordination
- Tiredness
- Unsteady walk
- Vomiting
Fraser underwent urgent 11-hour surgery at the Women’s and Children’s Hospital to remove the tumour. Shortly after, Fraser developed posterior fossa syndrome, which develops in around 30% of children with medulloblastoma, often appearing between 1-3 days after surgery.
“You have to put all your trust in them,” Ms Suggate said. “I just said, ‘our son’s life is in your hands, do whatever you can’.”
On top of trying to fight his brain tumour, the Suggate family are now having to deal with little Fraser facing the side effects of this new syndrome. Side effects are similar to someone who has had a stroke, with trouble remembering things and finding it difficult to communicate.
So Fraser will need to regain speech, the ability to walk, run and move his arms, etc, plus facing severe mood swings and the inability to stay still for lengthy periods.
On top of this, not all of the tumour was able to be removed during the 11-hour surgery, leaving Fraser faced with the option of radiotherapy and chemotherapy – further treatment required to try and entirely remove the brain cancer.
“Both Simone and I are keeping positive and also trying to keep normalcy for young Henry (Fraser’s brother), who we must not forget is impacted as well.” – Rob, Fraser’s dad
Consultant neurosurgeon Xenia Doorenbosch from Adelaide’s Women’s and Children’s Hospital said Fraser was “so calm and brave” leading up to his surgery.
“His parents told me that he felt better knowing that his favourite doctor, Dr Jake Nowicki will be in surgery with him.”
Brain Cancer Surgery Continues
Fraser will start radiation therapy in September to remove the remaining Medulloblastoma, followed by chemotherapy. He will require treatment every day for six weeks – that’s treatment for 42 days straight.
Sadly, because of the current syndrome and the fact he can’t now remain still in a set position, poor little Fraser will have to undergo a general anaesthetic in order to receive his radiation treatment every day until the syndrome passes. When will that be? Experts say it’s hard to tell and that this syndrome could hang around for months and sometimes even years.
Let that just set in. Poor Fraser.
Overseas Treatment a Fleeting Wish
Currently, there are two types of radiation for treating this particular form of Medulloblastoma, together with chemotherapy:
- Proton therapy – a radiation treatment that precisely delivers a beam of protons to disrupt and destroy tumour cells.
- Traditional radiation – here, protons have unique properties that allow doctors to better target radiation to the size and shape of the tumour.
Sadly for the Suggate family, the proton therapy is in America (Florida), and while partially funded by the Federal Government, applications can unfortunately take up to 4 weeks (or more) to approve. That’s 4 weeks little Fraser doesn’t have to give up.
Sadly for the 9-year-old, this type of cancer is very fast growing, meaning he can’t wait just sit and wait for the anticipated four-week timeframe for the Government to consider and approve his request. By then, the cancer will have grown even more and reduced his ability to completely rid his body of this cancer. Waiting around is simply not an option.
As you can imagine, Fraser’s family are trying to keep both options open, holding onto the hope that the Government might reconsider his case. They’re hoping the authorities will see that it involves a young child and acknowledge that the value of human life should outweigh paperwork and red tape.
So, moving forward, Fraser will undergo an operation where a ‘shunt’ will placed under the skull with a tube to help drain the cerebrospinal fluid and redirect any excess amounts to the abdomen.
So, for now, it’s a waiting game. Meanwhile, Simone and Rob have to take time off work and play tag team to be by Fraser’s bedside as he faces the biggest fight of his life. As you can appreciate, that’s exhausting for them to be by his side 24/7 but it’s what any loving parent would do.
Fraser’s parents, Rob and Simone, have taken, and will continue to take substantial time off work to be with Fraser, support each other, and care for their 12-year-old son, Henry. They are determined to ensure Henry feels supported and loved during this difficult time as they balance hospital stays with home life. While their main focus is on providing the best care and emotional support for both of their children, this dedication is putting significant financial pressure on the family.
Speak Up and Push for Answers
Simone is urging fellow parents to follow their instincts and advocate for their children. Speak up if you feel it’s not right, and push for the answers you know you deserve!
“Go get a second opinion, a third, go get a fourth opinion until you’re completely satisfied,” she said. “That’s what I was doing. I was searching for answers having been told it’s anxiety and then gastro.”
“If I had taken the word of other people I may not have my son with me.”
Fraser’s a fighter and with Bob the Blob, his motto while in hospital is: “He’s getting strong so he’s not in here for long”.
Friends of the family have set up a Go Fund Me page, with funds raised to be used to cover the costs of medical expenses, travel to and from the hospital, daily living expenses during this time of reduced income, and any additional support services needed for Fraser’s recovery.
The Suggate family is facing an unimaginable challenge, but they are not alone. Fraser’s courage, Rob and Simone’s unwavering support, and Henry’s resilience are a testament to the strength of this family. As they navigate this long and arduous journey, they are surrounded by the love and support of their community. Every contribution, whether through kind words, prayers, or donations to the GoFundMe page, helps lighten the load they carry.
Hang in there Fraser, we’re all cheering for you! You’re a fighter,
