In March 2015 a couple of kids from Sydney’s Upper North Shore had a very important message for Canberra’s top politicians; kids with cancer need science.
Ten-year-old Charlotte and 12-year-old Luke from Turramurra confidently spoke at the parliamentary breakfast about their baby brother Nicholas’ cancer journey. Mature beyond their years, they shared the harrowing feelings they had watching the tiny two-year-old’s battle, with medical procedure after medical procedure making him sicker than he already was.
Nicholas Forwood was two years old when he was diagnosed with cancer.
The plucky primary schoolers spoke about their fierce fundraising efforts for scientific research and boldly put out the challenge, “you are part of the Australian parliament – you should be able to do much more than we can.”
Here’s their full speech.
"Have you wondered what it is feels like to have cancer? What pain and sorrows it brings. Have you ever dared to imagine to have to deal with death? We have and we never wanted to.
I look forward to the day when all childhood cancers are just something that happened in the past.
Good morning Parliament, Speakers and The Kids’ Cancer Project, we will give you an insight on just a few of our experiences, troubles, and events that occurred through Nicholas’ journey, and what we did and the nightmares we faced.
In May 2013, our little brother was diagnosed with high risk stage IV neuroblastoma and has undergone many treatments. Where he first had eight rounds of chemotherapy, which gave him constant diarrhoea and throwing up and each round of chemotherapy he would stay in hospital for up to four weeks at a time and would go back to hospital after a short stay at home because he would spike a temperature.
Nicholas also had major surgery, everyone in our family came to the hospital that day, and then Nicholas spent 10 days in intensive care.
He then did high dosage MIBG and radiotherapy which left Nicholas radioactive that he had to be kept sedated for three days.
Nicholas also had a bone marrow transplant, which saw him stay in hospital for six weeks straight and five weeks he didn’t talk because he had mouth ulcers.
Nicholas then had his final treatment which was immunotherapy. This was the most successful treatment but also the most dangerous treatment of all because it could have left Nicholas’s heart stop beating.
Even after finishing all these treatments Nicholas is still not declared cured and must have scans every three months. He will always have cancer for the rest of his life.
Luke Forwood addressess the parliamentary breakfast in March 2015.
Charlotte Forwood takes the microphone.
Some of the major side effects Nicholas could have later in life are heart failure, liver failure, kidney failure, could develop a new cancer and death.
These are only a few of the many side effects making Nicholas’s journey an emotional rollercoaster which at one point left me traumatised and the next moment, hating the world.
When Nicholas was first diagnosed we heard of many charities we hadn’t heard of before, including The Kids’ Cancer Project.
I remember one day Nicholas coming home from clinic with a The Kids’ Cancer Project teddy bear, he put it down on the couch and went off to play with some other toys.
I sat there next to it and read the tag that was on the bears ear, it said that The Kids’ Cancer Project funded researched in to many hard to cure childhood cancers like brain tumours and Nicholas’ cancer neuroblastoma.
We had talked of doing a head shave later in the year and there was no doubt who we wanted to raise money for because of their goals and what they were planning to achieve; and we knew some people there and they were very supportive and would help us through the work.
When we started fundraising we knew that it would have very little effect on Nicholas’ journey in particular. But we didn’t want anyone else’s family or child to go through the horrible journey we had gone through but not even yet finished.
When we first started up our Everyday Hero page our first goal was set at $1,000 and we thought that was farfetched. We never expected to reach our goal in the first day and within the week our story had gone worldwide.
Our current total is now $135,000 including offline donations. This is one of the best rewards, but the greatest reward of all was seeing what we inspired other people to do, but looking at the big picture this is just a drop in the ocean.
Nicholas with Charlotte and Luke who shaved their heads in solidarity, raising over $135,000 in the process.
We are just two kids, who have gone through tough times. Whereas some of you are part of the Australian parliament – you should be able to do much more than we can.
Our only wish and hopefully yours too is that no child will ever go through what our family went through and families all over the world are going through right now.
Donate to research and help find more effective treatments for kids with cancer.