Madison O’Donohue’s Story
Brave Adelaide family is taking life one day at a time
It was a few weeks leading up to Madison’s neuroblastoma diagnosis last year that her mother Monique noticed she wasn’t her usual happy two-year-old self. Various GP visits followed, but revealed nothing unusual.
Monique noticed Maddie was starting to withdraw more and more from her usual activities and becoming very clingy, which doctors initially put down to a virus and the usual boundary-pushing of her age group.
About a week and more doctors’ visits later Maddie ended up in the ER as the situation had not improved.
Eventually blood tests revealed a problem, though there was still confusion about exactly what that problem was. It was a radiographer who discovered a tumour behind Maddie’s abdomen and as Monique said, “We were made aware that we were at war with Stage IV Neuroblastoma.”
The tumour was behind Maddie’s abdomen and wrapped around various organs, including her liver and kidney, and attached to her aorta, very close to her spine. It was described to the family as being like one large mass of tentacles squeezing its way into all the spaces between her organs. It was also showing up in Maddie’s bone marrow in her hip and shoulders.
Four months of aggressive chemotherapy started not long after diagnosis. Madison was in hospital for 105 out of the next 120 days. She then had stem cell harvesting in preparation for further chemotherapy treatment, which would follow surgery to remove the tumour. Scans and tests were re-done at this stage, showing the tumour had shrunk by 75 per cent but was still approximately 450g.
“Madison had seven-hour surgery two days after her third birthday to remove 95 per cent of the remaining tumour,” Monique said. “She had her stomach cut open from one side to the other known as the ‘gladiator’ – a very appropriate nickname, as she has proven to be a real fighter!”
“Seven days after surgery she was able to get out of bed and take a walk and four days later we took her home to complete her recovery. The surgeon said he was happy with the mass he removed, though he couldn’t get all of it.”
Two weeks later Madison resumed high dose chemotherapy followed by stem cell replacement to save her life from the aggressive chemotherapy being used. She spent 21 long days and nights in isolation in critical care. With not much of a break in between, a final dose of chemotherapy started two weeks later, including more stem cell replacement.
Madison spent the next 60 days in isolation in hospital, including over Christmas. She endured three weeks in intensive care on life support with pneumonia and developed aHus blood disorder that was rapidly breaking down her red blood cells, despite daily blood transfusions. This required separate intensive – and very costly – treatments.
Maddie underwent 20 sessions of radiotherapy, which was initially postponed due to her poor health. This was followed by a total of 18 red blood transfusions and the use of other blood products, which Monique equated with 68 donors!
“We have experienced too many complications and setbacks with Maddie’s treatment to mention here and after all of this we are left with no promises that the disease won’t return, but we will continue to monitor her closely and take things one day at a time,” said Monique.
You can help support research into a cure for this devastating cancer and support Team Maddie through their page today.
Huey Gordon May’s Story
Huey was just 10 months old when diagnosed with Neuroblastoma
Unlike many newborns, Huon Gordon May was actually a happy and content sleeper. But then his demeanour changed. Suddenly, he became clingy, unsettled and a very noisy sleeper.
viously concerned, Huey’s mother Jill took him to numerous health professionals and doctors before finally given a referral to see a paediatrician. It was there that a mass was detected on his neck and 10 week old Huey was diagnosed with Stage 4S Neuroblastoma. The primary 5cm tumour was impeding his breathing, and then quickly spread to Huey’s liver – causing it to swell to 5x its normal size.Unlike many newborns, Huon Gordon May was actually a happy and content sleeper. But then his demeanour changed. Suddenly, he became clingy, unsettled and a very noisy sleeper.
Huey was in enormous amounts of pain and discomfort as the tumour pushed his organs down to his groin and there was a real risk of liver failure.
At just 11 weeks of age Huey began his first of 8 rounds of chemotherapy. He also received countless blood transfusions to help him get through the treatment.
After the 8th round of chemo, Huey had an MRI scan which showed that he unfortunately still has tumour cells encasing his carotid artery – which is an inoperable area. Although his liver has returned to its normal size, there are still spots of Neuroblastoma, which – due to the highly sensitive area – also cannot be removed.
Jill, family and Huey’s team of doctors are currently monitoring Huey’s catecholamine levels monthly and he’s having a scan every 3 months to ensure the cancer doesn’t re-spread.
You can help raise funds for children like Huey who are affected by Neuroblastoma, at Run2Cure on Sunday, 3 June 2018. We’d love to see you there. You can donate to Huey’s Run2Cure Team here.
Indianna Martin’s Story
|Parents:||Rebecca and Chris|
One family’s dream of kinder and more effective treatments
Two weeks after her first birthday Indianna stopped eating.
Suspecting a urinary tract infection, parents Rebecca and Chris wasted no time getting her to their local hospital.
A speedy transfer to Westmead Children’s Hospital followed and not long after, the heartbreaking news.
It was July 2017 and one year old Indianna had a 15cm tumour. After a MIBG scan, the doctors confirmed that this bright little girl had Neuroblastoma Mync Amplified – the most aggressive type of Neuroblastoma.
Indianna and her family embarked on the only treatment available: a gruelling chemotherapy regime. After five rounds of chemotherapy the tumour had been significantly reduced and during a marathon 16 hour surgery, it was successfully removed.
The family had no time to rest, as Indianna spent seven days in ICU before bravely enduring another round of chemotherapy in preparation for a necessary Bone Marrow Transplant.
Only five short days from the transplant, the family were dealt another blow. A CT scan revealed that the tumour had not only grown back but was also appearing in different places. As of February 2018, the family are waiting for the results of her latest scans to reveal the extent of the tumours so they can devise a new treatment plan.
Indianna continues to battle the unwanted side effects of the chemotherapy which means she now requires hearing aids and constant monitoring of her kidneys. It has only been a few months since Indianna’s diagnosis and the family has been through so much, yet Rebecca, Chris and Indianna are looking to the future.
With the support of their friends and family, this brave family aims to participate in Run2Cure on Sunday, 3 June 2018 to raise funds for research into better treatments for children affected by Neuroblastoma.
You can support them too.
Update: Very sadly Indianna passed away on 6 April, 2018
Adrian Nocevski Story
|Parents:||Nick and Bernadette|
Adrian and his family are not ready to give up
In July 2012, after countless visits to the pediatrician, Adrian’s parents felt something was not right and rushed him to Randwick Children’s Hospital. The next day (5th July 2012) they received the devastating news that Adrian had stage 4 Neuroblastoma Intermediate risk.
Within 48 hours Chemotherapy started and during the next 6 months Adrian endured 8 rounds of chemotherapy and surgery to remove the primary tumour located on one of his adrenal glands. Treatment finished in January 2013 whereby the doctors monitored his remaining residual tumour through 3 monthly scans for the first year.
On June 2015, Adrian unfortunately relapsed, treatment once again started immediately this time with the high risk protocol which consisted of 10 rounds of chemotherapy, bone marrow transplant, 14 sessions of radiation to his neck, 5 sessions of immunotherapy and an additional 14 sessions of radiation to the left eye orbit.
Adrian completed his treatment on November 2016 whereby he remained with some traces of neuroblastoma behind his left eye orbit. In February 2017 the family received the wonderful news that Adrian was clear of disease in his left orbit region, however on May 2017 scans showed once again there was a recurrence.
A decision was made by his doctor in June 2017 for Adrian to begin a clinical trial with a drug called DFMO currently available in Australia. Adrian has fought each battle with determination. Adrian’s parents only wish is that this treatment is successful to rightly allow him to enjoy his childhood.
It’s been a long 5 1/2 years, but Adrian and his family are not ready to give up.
Edwina Thomas Story
|Parents:||Beth and James|
Cherish the good days, they bring strength
In the weeks leading up to her second birthday in March 2016, Edwina began to become very withdrawn and irritable and presented with low-grade fevers. Though there were a few changes going on in Edwina’s young life, such as adapting to a new baby brother, her mother Beth’s gut instinct told her something else was at play, as Eddie was normally such a busy and chatty toddler.
Numerous GP appointments followed, as well as a diagnosis of severe anaemia. However, after suffering from severe tummy pain, Eddie’s parents took her to emergency on the 2nd April where they were informed after a long day in the hospital that Edwina had a large mass on her right kidney.
Beth continues the story, “I was in some way relieved that they had worked out what was going on but not really aware of how serious the situation was. Our life was turned upside down in an instant. We were transferred straight to the Michael Rice Oncology Ward and over the following week Edwina had numerous scans, tests and surgery which confirmed Stage 4 High Risk MYCN Amplified Neuroblastoma. Her cancer had spread to both her femur bones and she had large football size tumor coming from her right adrenal gland.
Once Eddie was strong enough following her biopsy surgery and central line placement we started her first round of chemotherapy. Edwina was given a 70 per cent chance of survival if she was to complete a gruelling 18 month treatment process. This included six rounds of intro chemotherapy, a 10 hour tumour resection surgery, two stem cell transplants, 20 sessions of radiotherapy, five rounds of immunotherapy and six rounds of retinoic acid. She has endured over 30 general anaesthetics, blood and platelet transfusions, IV antibiotics, weekly dressing changes and IV pain relief. She has had to endure severe nausea, vomiting, diarrhea, and mucositis, which is ulceration from her mouth all the way down to her bottom, causing severe pain.
Eddie was unable to eat for weeks at a time and was reliant on IV nutrition and fluids. It was extremely hard to watch, as it seemed as though the pain would never end. She has endured more than you could ever imagine and it has been the hardest experience as a mother to watch my child go through so much pain and suffering. Throughout this time we have cherished the good days, which have been few and far between, but each one gives us the strength to help support Edwina through the next stage.
We are so happy to say that Edwina completed her treatment in August 2017 and is in remission. She has severe high frequency hearing lose due to the chemotherapy treatments she received and now happily wears her hearing aids. Edwina will continue to have three-monthly scans and reviews to confirm that she is still cancer free.
Evie Weir Story
|Parents:||Sarah and Joshua|
Evie’s memory shines brightly
In August 2013, Joshua and Sarah Weir were concerned about their daughter Evie as she had been vomiting and feeling unwell.
Only a week after Evie’s second birthday she underwent tests and scans that led to the devastating diagnosis – she had stage 4 neuroblastoma. The primary tumour was discovered in her adrenal gland, as well as other tumours throughout her body. The disease had also spread to her bone marrow.
Evie responded well to the first course of treatment, which included five rounds of chemotherapy, but later that year she had major abdominal surgery to remove the tumour.
Early the next year, following more rounds of chemotherapy, Evie then had a bone marrow transplant from her own stem cells. After a long recovery, she underwent another 12 rounds of radiation and six months of immunotherapy.
Three months later, just when life was starting to get back to normal, another tumour was discovered – this time in her head. She had an operation to remove the tumour with more chemotherapy to follow, but only eight months later another tumour was detected.
Evie had her second neurosurgery to remove the new tumour, followed by 16 rounds of head and spine radiation and then her three monthly scans have all been clear.
Evie’s mum, Sarah, always said, “You never know what tomorrow holds, so we just enjoy today,”.
Very sadly Evie relapsed further in 2017 and despite a new drug, Evie very sadly became a little angel on 19th December 2017. Evie’s memory shines bright and we thank her family for their support.
We need to find a cure for this dreadful childhood cancer.
Amber Streeting 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.
In May 2017 Amber unfortunately relapsed and is now undergoing additional treatment. 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.
Update: Very sadly Amber passed away on April 18, 2018.
William Smith 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. Towards the end of 2017 William relapsed and currently his oncologists are reviewing treatments. We are hoping 2018 will bring some positive news for William and his family.
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.
Update: Very sadly William passed away on April 2nd 2018.
Isabella White 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 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 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 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.