Mia was unwell for some time before she was diagnosed
Mia had been generally unwell for some time. She had several suspected viral infections, was very pale looking, would fall over when walking and had deteriorating eyesight. When we took her to our local A & E, the doctor took one look at her and ordered a CT scan.
It was an excruciating wait for any news but when the doctor took us into a side room we knew what was coming. Mia had a brain tumour and severe hydrocephalus (fluid on the brain).
We were blue lighted to hospital and an MRI was arranged for the next day. It was then that they were able to tell us her full diagnosis – she had a low grade optic glioma. This type of tumour is slow-growing and located around the optic nerve, which connects the eye to the brain. Mia’s tumour was very large and they were not able to remove it fully due to its location.
Mia’s treatment and its impact
Mia underwent an operation to insert a VP shunt to drain excess fluid from her brain. Not long after that, she had a Hickman line inserted in order to commence chemotherapy.
Mia’s problems were becoming increasingly difficult to manage
For roughly four years, Mia had regular MRI scans, most of which were reported as stable disease. She had begun to have real issues with sleep, behaviour and memory. She was already on growth hormone medication as tests had shown that due to the tumour location, she wasn’t producing enough naturally.
Mia had also started hoarding food as she had an insatiable appetite caused by tumour location. So many problems were getting increasingly difficult to manage. They reviewed her latest MRI and revealed that actually throughout those four years, the tumour had been slowly but continuously growing. This meant starting chemotherapy again.
The beginning of the seizures
Mia had her port inserted again and started weekly chemo. She was just about to start secondary school at this time. It seemed to be a much kinder drug this time – her hair thinned but never fell out and she didn’t experience as much sickness.
After about six months, Mia had her first ever big seizure. We were at home and it was so scary. We were blue lighted to hospital and she was put on even more medication and we now had seizures to add to her growing list of issues.
She got to the 12 month mark of chemo, and they decided to end it. However, not long after it ended, she began to feel poorly again, barely staying awake during the day, her memory was worsening and so was her mobility.
During an unrelated admission, she had her planned MRI and they found that there was a large cyst growing from the tumour. This was putting a lot of pressure on the brain stem and causing all these symptoms.
The neurosurgical team operated to drain the cyst and left in a reservoir for easy drainage. Within a week of surgery the cyst had grown back. They put a fine needle into the reservoir to aspirate the fluid. They had to do this every five days for a couple of months. Eventually it was decided to put a second shunt directly into the cyst to hopefully keep it drained. Unfortunately this malfunctioned several times causing the cyst to grow and leading to increased lethargy and seizure activity. It seemed like Mia’s problems were never ending and we just couldn’t see the light at the end of the tunnel.
Eventually they decided to once again debulk the tumour and this time got roughly 40% of the tumour out after another nine hour operation.
Following the surgery, Mia has been left with no natural thirst, so we have to keep her hydrated intravenously.
Following more months of shunt malfunctions and cystic growth, it was decided to re-start chemo. Since October 2019, she has already needed a blood transfusion and she gets very sick and tired. She’s yet to return to school and has now been out for a year.
Mia is living with so many tough and complicated issues that have only worsened over the years. We constantly have to adjust our sense of ‘normal’ and I just hope things begin to stabilise a bit in the future.
Mia is participating in a research study led by Dr Manuela Cerbone, who is looking into improving quality of life for children like Mia.
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