Although initially on a drugs trial that would mean he would get antibody therapy on the NHS, he needed additional treatment that meant he had to withdraw.
Toby's mum and her family were faced with raising £200,000 to pay for the therapy, which was not routinely available on the health service, themselves.
They launched a fundraising appeal in June 2017, reaching out to others for donations.
In an interview in July last year, she said: “We are a very close family and straight away we said we will fundraise.
“We said we would do whatever we needed to do to get the money.
“We never thought for one minute that we wouldn’t try because Toby needed it. We had to do what we needed to do.
“It’s not a nice feeling.
In pictures: How Leeds came together to say farewell to Toby Nye
“You feel like you are asking other people to pay for your child and that’s your job as a parent.
“We are quite a private family and we had to tell the world about our situation to get what we needed for our son. I feel like I had no choice. I had to do what I needed to do.”
Leeds United stepped in in October 2017, and support from players, club staff and fans helped push the family over the line to raise the money.
Toby began the antibody treatment with drug dinutuximab beta at Leeds General Infirmary in January and in March last year.
Early testing showed his bone marrow was clear of cancer for the first time since his diagnosis.
Tragically, Toby was diagnosed with a brain tumour in the autumn after suffering from headaches and vomiting.
He died on 12 January just days after his birthday.
He had struck up relationships with several players and staff.
Leeds captain Liam Cooper, who once carried Toby on to the pitch at Elland Road, said on Twitter "fly high little man! An amazing celebration for an amazing little boy".