Abigail's Story
On 21st October 2013, our daughter Abigail (4 ½) was diagnosed with a brain tumour in the emergency department of Princess Margaret Hospital for Children. She had been perfectly fine and well – other than over the course of a month, she had sporadically started being sick once or maybe twice in the mornings……
There are no words that can describe the shock of the moment where the doctors told us. To go from a simple vomit to brain cancer was living a nightmare. However, even then we realised that given the situation we were in – we were lucky – there was only one tumour and they could at least operate on it…..
That Friday she endured over 8 hours of neurosurgery, as the doctors worked to remove as much as they could of the tumour whilst doing as little damage as possible to the surrounding nerves…. From this, she woke up with thankfully only double-vision as a side-effect – which will never get better.
From here came the devastating news that yes, it was cancer – and the cells had already started spreading to her spine. The treatment for her cancer was 31 treatments of high-level radiation; and 6 months of chemotherapy. For 31 days in a row – she went to PMH for preparation for her radiotherapy. We then drove her to the cancer centre where she was put under a general anaesthetic and given the radiation. The treatment was gruelling to get through – with us giving her 28 doses of medication (including morphine) at home and regulating nasogastric feeds as well. She dropped to 11kgs. This treatment has caused long-lasting and severe damage. She has lost hearing and taste. She does not grow without a daily injection of a hormone. She needs to take a thyroid tablet daily. And worst of all she has suffered neurocognitive defects – making it much harder for her to learn at school. Physically she is not as confident and struggles to keep up with her peers. And her hair has not grown back in a few places – she is completely bald at the back.
Thankfully the radiation did its job and eliminated cancer.. and Abigail went through her 6 months of chemotherapy causing sickness and weight loss.
The impact of this treatment on a family is indescribable. Our son James has had to watch his sister go through huge amounts of pain, and not even look like herself, and at times it hurt her to laugh. This was hardest for him – as ever since she was a baby – James could always make Abby laugh…. And now she didn’t want him to. He had to grow up and be more independent way too quickly, and sometimes miss out because the risk of infection to his sister was too great.
As parents, the anxiety is unbelievable – especially at scan time when you can wait over a week to hear results, and I long for a return to the days when colds and gastro were the worst that happened.
Despite what she has been through Abigail’s strength never ceases to amaze. Through all her treatment and even now she always gets on with it and finds a reason to smile – she finds beauty and the good side in everything…She has taught us a lot! Abigail is incredibly creative and artistic, she loves to bake and play with James, and she’s also very charismatic – and perhaps a touch cheeky.
We hope for a future filled with happiness for her… and though at times the side effects make this a struggle, she is worth it. As a team Matt & I are hoping to contribute back through our work with The Adventurers, so that no child, no family – ever has to go through this again.
https://www.telethonkids.org.au/information-for/donors-and-fundraisers/stories-of-support/community/2017/people-power/
There are no words that can describe the shock of the moment where the doctors told us. To go from a simple vomit to brain cancer was living a nightmare. However, even then we realised that given the situation we were in – we were lucky – there was only one tumour and they could at least operate on it…..
That Friday she endured over 8 hours of neurosurgery, as the doctors worked to remove as much as they could of the tumour whilst doing as little damage as possible to the surrounding nerves…. From this, she woke up with thankfully only double-vision as a side-effect – which will never get better.
From here came the devastating news that yes, it was cancer – and the cells had already started spreading to her spine. The treatment for her cancer was 31 treatments of high-level radiation; and 6 months of chemotherapy. For 31 days in a row – she went to PMH for preparation for her radiotherapy. We then drove her to the cancer centre where she was put under a general anaesthetic and given the radiation. The treatment was gruelling to get through – with us giving her 28 doses of medication (including morphine) at home and regulating nasogastric feeds as well. She dropped to 11kgs. This treatment has caused long-lasting and severe damage. She has lost hearing and taste. She does not grow without a daily injection of a hormone. She needs to take a thyroid tablet daily. And worst of all she has suffered neurocognitive defects – making it much harder for her to learn at school. Physically she is not as confident and struggles to keep up with her peers. And her hair has not grown back in a few places – she is completely bald at the back.
Thankfully the radiation did its job and eliminated cancer.. and Abigail went through her 6 months of chemotherapy causing sickness and weight loss.
The impact of this treatment on a family is indescribable. Our son James has had to watch his sister go through huge amounts of pain, and not even look like herself, and at times it hurt her to laugh. This was hardest for him – as ever since she was a baby – James could always make Abby laugh…. And now she didn’t want him to. He had to grow up and be more independent way too quickly, and sometimes miss out because the risk of infection to his sister was too great.
As parents, the anxiety is unbelievable – especially at scan time when you can wait over a week to hear results, and I long for a return to the days when colds and gastro were the worst that happened.
Despite what she has been through Abigail’s strength never ceases to amaze. Through all her treatment and even now she always gets on with it and finds a reason to smile – she finds beauty and the good side in everything…She has taught us a lot! Abigail is incredibly creative and artistic, she loves to bake and play with James, and she’s also very charismatic – and perhaps a touch cheeky.
We hope for a future filled with happiness for her… and though at times the side effects make this a struggle, she is worth it. As a team Matt & I are hoping to contribute back through our work with The Adventurers, so that no child, no family – ever has to go through this again.
https://www.telethonkids.org.au/information-for/donors-and-fundraisers/stories-of-support/community/2017/people-power/
