Maddie was diagnosed with neuroblastoma in 2016 and after intensive treatment is now doing well at 8 years old. Monique, Madison’s mum, shares their story,
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. After about a week and more doctors’ visits, Maddie had not improved and ended up in the ER.
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.
We were made aware that we were at war with stage 4 neuroblastoma.
The tumour was behind Maddie’s abdomen and wrapped around various organs, including her liver and kidney, 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.
Four months of aggressive chemotherapy started quickly after diagnosis. Maddie was in hospital for 105 out of the next 120 days. She then had stem cell harvesting in preparation for further chemotherapy, 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.
Two weeks later Maddie resumed high dose chemotherapy followed by stem cell replacement to save her life from the aggressive chemotherapy. 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.
Maddie 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.
Madison’s Story – Update
We are delighted to share that now 6 years later, Maddie is 8 years old and is doing well – thanks to research that has been done to date. She loves school and had one of the main roles in the school musical and is part of the school choir. She enjoys swimming, has just got her first guitar, she loves to cook with her big brother Levi and makes a salad look like artwork!
Maddie has successfully managed a number of challenges from all the treatments she had to endure. She has some hearing loss from her chemotherapy, and she has had to work on building her overall strength and core. She has now successfully managed to learn how to ride her bike.
It doesn’t end once you finally finish all the relentless treatments, we still have scans and never-ending appointments as there is still uncertainty at times as to what other effects Maddie might have to manage as a result of her treatments.
