Nicholas' story

Nicholas' story It’s been five years, yet his long-term prognosis is still so uncertain.

Tom and Ursula Forwood live in Turramurra on Sydney’s upper North Shore. They have three children; 16 year old Luke, 15 year old Charlotte, and Nicholas who is now 7 years old.

But life for this unassuming suburban family changed forever in May 2013 when Nicholas was just two. The toddler was diagnosed with high-risk stage IV neuroblastoma and his parents were told there was only a 50 per cent chance he would survive. 
With Tom and Ursula’s consent, Nicholas’ medical team threw everything they could to turn the dire prognosis around.

“Nicholas immediately had a central line and a nasogastric tube inserted,” recalled Ursula. “Throughout the months that followed he had regular scans, X-rays, ultrasounds, ECGs, echocardiograms, injections, bone marrow aspirates, eye tests, hearing tests and numerous blood tests and blood transfusions.”

Ursula kept a diary of all of her young son’s medical proceedures which grew to an impressive number as the months progressed.
“Nicholas went through eight rounds of chemotherapy, a major surgery which lasted 12-hours and resulted in a 10-night stay in ICU, an Autologous Bone Marrow Transplant (where they gave him his own stem cells which they had harvested from his blood early on in treatment), and a dozen cycles of radiotherapy under anaesthesia,” she said.

Ursula comforts Nicholas during treatment.

Between treatments, the little boy had myriad hospital visits either to monitor his health or as admissions due to high temperatures which needed intravenous antibiotics to ensure infection wouldn’t take hold of his immunosuppressed body.

As treatment progressed, doctors reported that Nicholas was responding, however not as well as they would have hoped. His chances of survival kept decreasing.

At one point he had to have high dose MIBG, which involves an injection of a radioactive medication.

“It rendered his little body so radioactive that he had to stay alone in a lead-lined room for five days, sedated and ventilated, with nursing staff sporting Geiger counters when they briefly entered his room,” said Ursula. 

The impact and side effects of each treatment were horrific. So much so that Nicholas’ doctors limited his treatment fearing he wouldn’t be able to handle the full doses they wanted to prescribe. 

After all that, Nicholas entered a 6-month clinical trial to test a new treatment; immunotherapy. It proved to have the most positive impact but it still did not obliterate his cancer.

“In October 2014, after 18-months of gruelling medical care, Nicholas was left with a dozen spots of cancer throughout his body,” said Ursula.

“Even today, the doctors do not know if these spots are dormant active cancer cells or if they have matured to benign cancer cells. Nicholas undergoes regular tests and scans to monitor these spots,” she said.

There are some children who emerge from a year and a half of cancer treatment battle-worn with the family able to slowly come to terms with what is called a ‘new normal’. Then there are others for whom the nightmare of uncertainty and complications continues.

Watch video: Nicholas' Story | A Family Perspective | The Kids' Cancer Project

Nicholas suffered from a bowel obstruction in January 2016 due to scarring from the surgery he had. Emergency surgery to rectify it resulted in a 13-night stay in hospital. Regular tests and scans were performed while he was admitted and the Forwood family’s world was once again turned upside down.
A new spot of cancer was detected.

Another three months passed as Nicholas recovered from surgery and investigations into treatment options took place. His regular tests and scans were once again due and the results showed no change since the last scans, all remained stable once again.

As Nicholas appeared well and was enjoying life, the decision was made to not undergo any new treatment but to keep going with regular tests and scans to monitor the existing spots of cancer.  

Living with scanxiety

At this news, families who haven’t experienced cancer will shout hallelujah, but for any who have been touched by it’s sinister hand will know the phenomenon of scan-anxiety or ‘scanxiety’ all too well.

“It makes common things that most children experience take on a more sinister twist, raising fears, such as a headache could be a brain tumour, tummy pain could be the regrowth of the original tumour, a cough or cold or achy body could mean the cancer has become active and is once again spreading throughout his body,” said Ursula. 

“These fears are not constant, they just automatically raise their ugly when Nicholas is unwell. I spoke to another mum recently whose boy had a brain tumour when he was two, he is now 16 and still whenever he gets a headache, her fear of another brain tumour arises. I don’t think it is something you ever lose, you just learn to live with it the best way you can.” said Ursula.

Ursula and Tom know that as a result of his life-saving treatment Nicholas will be infertile, will never be able to play contact sports, has increased risk of developing a secondary cancer, an increased risk of kidney, liver and heart failure by the time he is in his 20s and has an expected shorter life span.

Nicholas has partial hearing loss due to his treatment, is a lot smaller than other kids his age and has an adrenal insufficiency which requires daily medication for the rest of his life, careful monitoring and additional medication when he becomes ill, and something like breaking a bone requires an injection otherwise his body will go into shock and would likely result in death. 

“Nicholas has taught me more than I’ve taught him, and I am continually inspired and amazed by him,” Ursula said. 

“While he was going through treatment, I was always worried he’d think I was a horrible cruel person for allowing him to be hurt. Because he was so little, I couldn’t reason with him or explain that the doctors and nurses needed to hurt him to make him better,” said Ursula.

“I’d be there holding his hand while the nurses were putting in nasal tubes, giving injections and so on, and he’d be pleading to me with his eyes as if saying, ‘why are you letting them do this to me?’ I didn’t know if just being his mum would be enough. All I could do is be there for him and it broke my heart,” said Ursula. 

Nicholas pictured with his teddy knows just being there is enough.

But Ursula learned never to underestimate the wisdom, strength and bravery of her youngest boy. 
“I remember one day a few months into his treatment, we were at home and I was sewing up one of his little stuffed toys which had a ripped seam,” said Ursula. “While I was sewing, he came up and held the toy’s hand, comforting it, until I had finished.”

“That was the moment that I knew that me just being there, holding his hand was enough for him.”

Super siblings, Luke and Charlotte have also shown great bravery throughout the family’s cancer journey. Their proud parents are in awe of their resilience, grace and altruism, never once using Nicholas’ illness as an excuse, they continued to work to the best of their abilities.

There was so much they had to give up while their little brother was going through treatment, but instead of dwelling on that, they focussed their attention on what they could do to make a difference. When faced with great adversity they have repeatedly shown immense strength and have stepped up in so many ways, not just wanting a better life for themselves or their family but for others.

“Right from the start they said they had to do something to raise awareness and funds for childhood cancer research,” said Ursula. “Eventually they decided to shave their heads and raise money for The Kids’ Cancer Project.”

Nicholas watches as Charlotte and Luke lose their locks to raise awareness and funds for childhood cancer research.

Luke and Charlotte learned about the charity after seeing one of The Kids’ Cancer Project bears which Nicholas had been given at hospital. After doing their research, they chose to donate to the charity because of its focus on advocating for 100 per cent survival of all children with cancer. 
When the dynamic duo started fundraising, they knew it would have very little effect on their baby brother’s cancer treatment and long term effects, but they did it in honour of him because they didn’t want anyone else’s family or child to go through the horrible journey they had gone through … and were still going through. 

Watch the head shaveFundraising | Be a champion for kids with cancer | The Kids' Cancer Project

The head shave was slated for 29 March 2014 and they raised over $135,000 while generating awareness by being in local newspapers and the shave featured on Channel 9’s Weekend Today. It earned them a Pride of Australia nomination and an invitation to speak at a Parliamentarian Breakfast in Canberra in March 2015. 

The family have been fundraising and advocating for science ever since, going on to do more interviews for local and national newspapers, TV shows, and websites. They’ve given speeches at various charity events, have organised and run a variety of fundraising events and are honoured to do any promotional work for The Kids’ Cancer Project when asked.

A family enjoy the Optus Yestival on the Gold Coast in 2018.

Tom introduced the charity to his colleagues at Optus Communications and as a result, the telco is now engaged in Workplace Giving. He was also instrumental in the charity having a presence at this year’s Yestival, a family fun day for all staff, meaning even more people are learning that science will bring solutions and survival for every child with cancer. 

With so much success, Luke and Charlotte were recognised at the inaugural The Kids’ Cancer Project Hero Awards where the charity celebrated the community as part of it's 25th anniversary celebrations on 26 July 2018. 

Charlotte and Luke accept their Hero Awards at The Kids' Cancer Project 25th anniversary. Pictured here with the charity's founder, Col Reynolds OAM. 

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