“I remember my husband, Andrew, saying 'It might be bad but it’s not going to be something like leukaemia'.”Natalee, Ted's mum
Ted was an average 3-year-old boy, always playing outside, crazy about Lego and chasing after his older brother, Oscar. But when Ted was diagnosed with Acute Lymphoblastic Leukemia (ALL) it turned his life and that of his family into a nightmare.
Ted was an average 3-year-old boy when one night he started screaming and couldn’t be consoled by his parents, Natalee and Andrew. The next morning, Ted was lethargic and struggling to walk.
After visiting their local doctor, Ted was sent to Bankstown Hospital for further tests. By this point, Ted couldn’t bare any weight and his father had to carry him.
“If he stood on his legs he just collapsed if I wasn’t holding his arms. Whenever he hurt himself, he would get up and say, “dust it off.” But he just couldn’t dust this one off.”
At first, the hospital thought Ted had an infection, but after multiple tests, Natalee started to worry, she knew something wasn’t right.
The next day on Ted’s fourth birthday, the hospital were amazing, decorating his bed with balloons and streamers. When the nurses came in and sang happy birthday and gave him presents, Ted felt like a million bucks. Little did Natalee and Andrew know, that the next day they would hear the words they were dreading the most.
The next day Ted was rushed to Sydney Children’s Hospital, Randwick. Ted was diagnosed with acute lymphoblastic leukaemia (ALL). ALL is the most common type of leukaemia and survival rates are greater than 90%. However, when Ted started treatment, Natalee soon realised it wasn’t going to be easy.
Acute lymphoblastic leukaemia accounts for about one third of all childhood cancers and is one of the greatest causes of cancer-related deaths in children.
Ted was given an initial two-year treatment plan with chemotherapy starting the next day. Ted reacted well to initial treatment, but his appearance was dramatically affected. Ted’s cheeks and stomach grew to the point where he was almost unrecognisable, while he started to become less active and abnormally quiet. The steroids also affected his moods, causing busts of anger. It was heartbreaking for Natalee to watch her caring little boy change so quickly because of the medication needed to save his life.
“No one would do this to a four-year-old if this wasn’t required. As painful as it was to watch, I understood that they had to kill the cancer cells. I was just hoping that it didn’t take the rest of him.”
Oscar to the Rescue
As Ted’s mood swings became worse, his older brother Oscar, who was only 6 at the time, stepped in and told him, “I love you. I want you to stop hitting and if you stop hitting, you can come play a game with me.” Their brotherly bond grew, and Ted would light up when Oscar came to the hospital, where they would snuggle in bed, watch TV and play Lego together.
“There were so many times that Ted would be really unwell and wasn’t eating and then Oscar would walk in and he would just light up.”
With Ted doing well, his family agreed to place him on a clinical trial, which would hopefully lead to fewer side effects on his heart and organs.
Just as he seemed to be moving in the right direction, he stopped responding to the treatment and was taken off the trial. His status moved from standard to medium risk. Ted endured further rounds of chemotherapy, including 48-hour stints in isolation when his temperature spiked.
A Lasting Impact
Ted finished chemotherapy in September 2016 and stopped all medication that Christmas after 27 months of treatment.
He is still having regular hospital check-ups and the side-effects of the treatment he endured are still a daily reminder of the journey they had been on. Ted has nerve damage in his fingers which affects his writing and struggles to ride his bike due to the muscle wastage in predominantly his core.
Ted is now 23 months into remission, with three more years to go. He has regular check-ups, but it is hoped they will be down to every three months by the end of 2018.
Ted isn’t scared of going to the hospital, in fact he loves it. He feels like everyone is there for him and he’s the centre of everyone’s world and that makes him feel great.
Ted still loves his Lego and playing with his big brother, when Ted grows up he wants to be a builder or a super Villain.
“As crazy as it sounds, if it was going to be leukaemia, and it was, we were hoping for acute lymphoblastic leukaemia as it had the better survival rates.”