Megan's Story
Beth and Mick from Croydon were thrilled when their second child Megan was born in March 2003 - a sister for their son Joe.
They couldn’t have wanted for a happier, bouncing baby daughter - always smiling. But then when she reached the age of five months, unusually for her, she began to cry a lot, but not surprisingly the couple put it down to teething problems.
“We gave her some medicine but she remained unwell, she was very lethargic and didn’t seem to be breathing properly,” Beth explained.
Their GP thought it was a viral infection but she deteriorated quickly and began to really struggle for breath.
Tests at the Mayday Hospital in Croydon revealed she had pneumonia but despite antibiotics, she didn’t improve so an ultrasound was done which revealed one of her lungs had collapsed.
She was whisked off to the Royal Brompton Hospital where she had a chest drain inserted and her lung was re-inflated.
Initially she seemed to improve but then she went downhill again.
Following more tests including a CT scan the couple were devastated to be told that their baby had a Neuro Blastoma – a cancerous tumour attached to her spine but also squashing her lung.
Doctors moved quickly to get her into Great Ormond Street where she began intensive chemotherapy in “Chemo Kids” ward.
Then there was another blow a week later when little Megan had respiratory arrest because the tumour was crushing her windpipe.
She went into intensive care and was on ventilation for ten days but Mick said it was dreadful, it felt more like ten years.
More bad news following when they were told that the cancer cells were in her bones and bone marrow which made her “Stage Four” – a very grim scenario.
Although Megan was allowed home, Beth and Mick were having to make endless and lengthy trips to the hospital for the chemotherapy which meant it was impossible to look after Joe as well so he had to go to his grandparents for seven weeks, which Mick said was pretty tough on him.
It was around this time that Beth and Mick were introduced to CHASE via their Hospital at Home team. They agreed to go along and see Christopher’s and were so impressed they went back to stay the following weekend.
They were relieved to have CHASE care team members Ruth and Val on board giving them support in the home and allowing them the chance to go out on their own occasionally. Beth said: “There are only certain people you can leave Megan with – only a very few you can trust. Megan needed time away from us as well.”
Mick said they valued the home visits enormously – they had been particularly valuable for Beth who admitted that there was a danger of becoming a bit of a recluse if you didn’t get out at all.
Stays at Christopher’s were also much appreciated. “We could just go out of the front door if we wanted to; knowing Megan was being cared for. Joe absolutely adores it at Christopher’s; we always have a job to get him home!” They feel that the atmosphere at Christopher’s has been very good for him.
By January 2004 Megan was “re-staged” following the brilliant news that the chemotherapy had cleared most of the cancerous cells in her bones and shrunk the tumour but treatment was not over yet. She needed major surgery to remove the tumour and they were horrified to learn that a major vessel, the aorta, was running through the centre of it.
They warned the couple that as such, surgery was more of a risk than they had initially thought.
At the tender age of one year and two weeks old, Megan went into theatre for her operation and the surgeon admitted afterwards that it was the one of the most difficult operations of its kind that he had ever done, but it had been a success! Because of the location of the tumour he had had to slice pieces of it away gradually – “like peeling an apple from around her spine” Beth said.
The surgeon removed 95% of the tumour, the only small part remaining having now calcified and at present there is no sign of the disease.
“If it doesn’t come back within two years it should be OK – Megan is having scans every four months. There is no cure for Neuro Blastoma but at the moment Megan seems to be clear of it – it’s like a remission. But we know it could come back tomorrow or in 20 years – it’s not unheard of,” Mick explained.
Sadly the damage to Megan’s spine has left her paraplegic and doctors say she will never walk. There are other problems including the fact that her bladder and bowel don’t contract to empty property so she is on medication for that. In addition she has scoliosis of the spine and should be wearing a brace – but she is stubborn and refuses!
She will need spinal growth rods as she grows.
Despite all the couple say it’s not all bad and CHASE has supported the family throughout the really difficult times – and continues to do so.
Beth said: “Megan is the happiest little girl you could ever meet, despite everything.
They told us three times that she would die and she is still her – she has defeated all the odds.