Monique noticed two year old 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.

A real fighter

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. 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. Monique, Madison's Mum
Maddy in hospital with Santa and her brotherTwo 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. Monique, Maddie's mum

If you're a family who's been diagnosed with neuroblastoma, you can get support via our Family Support Section to connect with other families.