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Amber Streeting’s Story
|Age:||6 years old|
|Location:||Central Coast, Sydney|
|Parents:||Peter and Sarah|
|Treated at:||John Hunter Hospital|
Family support helps get through the toughest of times
One night, back in July 2015, four and a half year old Amber had woken up from her sleep complaining of a sore stomach – which was very out of ordinary for her as she always sleeps right through the night.
The next day she was still not well and sore in her stomach, so her parents Peter and Sarah decided to take her to their closest hospital (in Gosford) to get her checked out. Once there, she was given some medicine and started to feel better however, she still needed to go for further tests to get to the bottom of her concerns.
After getting a scan on her stomach it was made apparent that Amber was very unwell. The radiologist had seen scans like hers before and believed she had the rare childhood cancer, neuroblastoma.
At the John Hunter Hospital in Newcastle, Amber underwent a mass of tests, ultrasounds and surgery with the results confirming Peter and Sarah’s fears – their precious little girl had stage 4 high risk Neuroblastoma.
Amber immediately commenced treatment, which consisted of chemotherapy every 10 days for 70 days. Initial tests after this time had showed improvement, however more still needed to be done. Since then Amber has undergone further rounds of chemotherapy, radiation therapy and a stem cell transplant.
She is currently undergoing autoimmune therapy – a very painful and intense treatment that will unfortunately need to be continued for the next 5 – 6 months to help diminish Amber’s aggressive cancer.
Amber’s father Peter says that they have been very lucky to have such great support from their families as it allows them to give everything they have to support their beautiful daughter through this difficult time.
“There is a lot more to this situation than just having a sick child,” Peter says.
“Before this happened to us, I would hear the story of another child with cancer going through a rough time, but never really understood what it meant for the parents or siblings of that child and what they go through too.” Said Peter.
Peter is now more aware that on top of his daughter’s illness and the day to day juggling of appointments and treatments, there are many additional pressures to manage such as financial and relationship stress and depressed periods for all concerned. The Streeting family are aware of how important is to work together through these issues.
The Streeting family are hoping that the new year will bring good news and they are confident that Amber’s courage and strength will help her get through this tough time.
William Smith’s Story
|Age:||7 years old|
|Treated at:||Westmead Children’s Hospital|
Family digs deep to help William
In late January, this year, William had become lethargic and had slight pains in his belly. At first the pain was not consistent and there was no vomiting, temperature or visible signs of it being anything of any major concern. However, after a week the pain and lethargy had increased and so his mother Danielle took him to the family GP where he was referred for tests.
The next day William had an X-ray which showed something on the right lung, which was believed could have been pneumonia, but an ultra sound showed many more lumps in William’s abdomen -leading to the devastating realisation that something was dreadfully wrong.
The following day William was admitted to Westmead Children’s Hospital, where tumours were found throughout his body, except for his head. Doctors had diagnosed him with Stage 4 Neuroblastoma and he immediately commenced treatment, which included five rounds of chemotherapy, in an effort to shrink the tumours.
After the last round of chemotherapy, William then underwent a nine-and-a-half-hour long surgery, to remove two sections of his liver with tumours. Only 24 hours before this, his parents were also given news that the primary tumour had stretched across to the lining of his heart.
Following the surgery, he has had another round of chemotherapy and two bone marrow transplants and is now in hospital recovering before future treatments of radiation and immunotherapy.
William’s cousin, nine-year-old Matilda, had no hesitation in deciding to have her lovely golden locks shaved off from the moment she found out chemotherapy would cause him to lose his hair. The two are not only cousins, but great friends and Matilda wanted to show her support and help raise money for his care and the Children’s Hospital at Westmead.
Isabella White’s Story
In May 2011, Isabella was 20 months old when she was diagnosed with Neuroblastoma and associated VIP secretion. Bella was our only child at that time and she started to become unwell several months earlier. We visited the GP often and various tests were done over these months without any answers.
In the month before she was diagnosed Isabella started to lose weight, and various other symptoms started to make her very unwell. It was ultimately an abdominal ultrasound that found she had a large mass in her abdomen. As I sat down to hear the ultrasound results from our new GP and new paediatrician, I will forever remember their words…. “The ultrasound found a large mass in Bella’s abdomen. You need to go to the Sydney Children’s Hospital Emergency Dept now. Don’t delay. You need to expect the worst case scenario….”.
The memory of that first night is still a blur of doctors and nurses introducing themselves, many questions, and the words… ” We need to do some more tests but we think the abdominal mass is cancerous. We will get the Oncology Team to come and see you”. The fear that began that night is still etched in my mind. I remember feeling that it just couldn’t be ….. Our baby girl couldn’t have cancer…. She was just a baby….
Bella was admitted to hospital that night and didn’t leave for over 4 months. Tests confirmed that her abdominal mass was the childhood cancer Neuroblastoma. During these months she was extremely unwell and unstable, and wasn’t well enough to go home. She endured so many tests, scans, blood transfusions, plus chemotherapy and major surgery. Her weight became a significant hurdle, at her lowest she was 8kg and she was placed on TPN (nutrition given intravenously) for 4 months.
These months were such an emotional roller coaster…. I found we just lived minute to minute as her health was so variable and so much unknown. It was like we were frozen in time… We were living this nightmare and we didn’t want to think too far ahead because we didn’t know what the future held.
After 4 months, Bella had a 12 hour surgery to remove almost 85% of the tumour. There were complications during the surgery, however our brave Bella once again fought hard and was out of ICU within days. A few weeks later, just after Bella turned 2 years old her health began to improve, her symptoms became fewer and she was discharged from hospital to continue treatment from home. As time went on her health improved each day and she became stronger.
Now in 2017, Bella is a happy and active 7 year old in Year 2. She loves swimming and gymnastics and really wants to be goal shooter in netball. She is symptom free and though she has active tumour remaining in her abdomen it has been stable in size since 2011. Bella now has yearly MRIs to monitor the tumour. And though she is well, there is still the fear that her tumour will start to grow again.
Life has certainly thrown us some curve balls and it certainly has had many ups and downs… But the more time goes on the more it feels like just a terrible nightmare. We do live a ‘new normal’ life now….. And while encouraging Bella to live life to the fullest and looking ahead to the future it is never far from our thoughts about how quickly that can change. And how it has changed for many families we met along this childhood cancer journey.
Max Haggar’s Story
|Age:||6 months old|
|Parents:||Dale Haggar and Sarah Spencer|
|Treated at:||Monash Children’s Hospital, Victoria|
Putting the power of social media to good use
Wesburn parents Dale Haggar and Sarah Spencer set up the page “Two hearts, one battle … neuroblastoma” after their son, Max, was diagnosed with Neuroblastoma 4s in September this year.
Max’s cancer started in the adrenal gland, and had enlarged his liver – next to his twin, Charli, Max’s abdomen is much larger from the tumour.
At the time of diagnosis, the Haggar family set up a Facebook page to help family and friends keep up to date with Max’s treatment and condition – as well as to help raise awareness of the cancer.
The page amassed more than 600 likes in the space of a month, and the couple said there had been an “overwhelming” response, with a flood of messages offering support, food drop-offs and kind words.
Max’s treatment has commenced with a low dosage of chemotherapy initially to try and reduce the size of the tumour. Now all they can do is wait and see if the treatment will do the job in reducing the tumour or whether they will need to increase the dosage for a better result.
Connor Howse’s Story
|Age:||6 years old|
|Location:||Collinsville at time of diagnosis now Proserpine (Nth Qld)|
|Parents:||Rhiannon and Gordon Howse|
|Siblings:||Sisters Isla (4) and Freya (almost 1)|
|Treated at:||Royal Brisbane Children’s Hospital then Lady Cilento Children’s Hospital|
Rare childhood cancer strikes twice in the same family
In January of 2014, the Howse family were a happy family running their own business in Collinsville, North Qld. Their nearly 4 year old son Connor had just started pre-school and their daughter Isla was a gorgeous typical 18 month old toddler.
After Connor had had a few sporadic temperatures and started walking with an unusual gait, his mum Rhiannon took him to the local doctor for a check-up and blood tests. As the results weren’t conclusive, she then pushed for an ultrasound of his hips – which would also show no abnormalities.
Connor didn’t improve or worsen over the next few days but at Rhiannon’s insistence they got a referral to a pediatrician in Townsville – 3 hours from home – where he underwent further blood tests and x-rays. Once again, the results did not show anything of concern, so they were told to go home and return the following week for more tests.
By the next afternoon Connor’s health had worsened. When his mum asked him why he was crawling rather than walking his response was ‘my legs feel really dizzy’. He was then admitted immediately to Townsville hospital.
Rhiannon packed their bags with clothes for 3 days – little did she know that this would be the last time they were together as a family in Collinsville for 16 months.
After three days of tests and scans, Connor’s parents were told that he had numerous tumors in his abdominal area, pelvis, spine and right knee. The next day the Royal Flying Doctors flew Rhiannon and Connor to Brisbane for admission into the Oncology unit at the Royal Children’s Hospital and on February 13th 2014, Connor was given the official diagnosis of Stage 4 Neuroblastoma.
Their family was devastated – they could not believe that their family had been inflicted with this insidious disease again.
Rhiannon’s sister’s son Darcy (Connor’s first cousin) was diagnosed with exactly the same disease in May 2012 at age 6. At the time, the families were told neuroblastoma was not genetic and just bad luck as it was such a rare cancer. Darcy was treated at the Starship hospital in NZ and is currently in remission.
While most cases of hereditary Neuroblastoma occur sporadically, affecting individuals who have no family history of the disease, in 1-2% of cases* a susceptibility to develop Neuroblastoma can be inherited from a parent. The risk of developing the features associated with the hereditary Neuroblastoma may be passed from generation to generation in a family, but the severity of the disease can vary widely between family members. Both boys have had blood samples sent to the Netherlands to be tested for the specific gene and hope to enter a study group in USA next year.
Connor completed the same aggressive treatment protocol as Darcy. He underwent five rounds of intensive chemotherapy, major surgery, a bone marrow transplant, radiotherapy and 6 months of immunotherapy. He is also currently in remission and due for his next quarterly check up in February 2017.
Ava Bell’s Story
|Age:||6 years old|
|Location:||North Bondi, Sydney|
|Parents:||Tony Bell and Jenny Davis|
|Treated at:||Sydney Children’s Hospital, Randwick|
Hoping for a bright future
Ava was just six-months-old when her mum, Jenny, heard her screaming, and ran to find her struggling to breathe, her eyes rolling into the back of her head and her lips turning blue.
At the Sydney Children’s Hospital, Randwick, doctors found that her lung had collapsed due to a collection of fluid in her lungs and she was immediately transferred to the Intensive Care Unit and placed on a ventilator.
Ava was then sent for scans which revealed a five and a half centimetre cancerous (neuroblastoma) tumour in her chest and abdomen – the cause of pressure and build-up of fluid on her lungs. The cancer had also spread to her bones.
She immediately commenced a course of chemotherapy treatment and spent the next 15 days on the ventilator until she could breathe again on her own. Over the next 12 months she endured ten rounds of chemotherapy and three operations to try and rid her of the tumours – one of which was entwined around her spine.
A highly risky operation to perform due to the potential of damaging nerves, doctors were relieved to discover after further investigation that the tumour had matured and become non-cancerous. Ava was then able to stop her intensive treatment.
These days outgoing and bubby six year old Ava is back home with her family, but will need to continue to visit the Hospital annually. The focus of these check-ups will be around long term development goals and whether the treatments she underwent have caused any side effects as she grows.
Sienna Hoffman’s Story
|Age:||2 1/2 years old|
|Parents:||Lucy Jones and Oliver Hoffman|
|Treated at:||Sydney Children’s Hospital, Randwick|
A source of inspiration
Sienna Hoffmann is the driving force behind over $700,000 in fundraising and is the inspiration for this site. She tragically lost her battle at aged just 2 1/2 years old however lives on through the work of her friends and family.
Ciara Flanagan’s Story
|Age:||8 years old|
|Treated at:||Sydney Children’s Hospital, Randwick|
On the other side
Ciara Flanagan has been the driving force behind over $350,000 in fundraising which has been delivered to Children’s Cancer Institute for research into the disease. She is a success story in this horrible disease and will be started a new journey in 2015 when she headed to school.