'˜We need to make as many memories as we can'
Excited Kate and Andy Goodall were loving life as parents to newborn baby Jacob.
But when he was sick and had difficulty sleeping, they began to get concerned.
Then a hospital doctor noticed his left eye wasn’t fully closing.
After tests and an MRI scan, Kate and Andy were given the devastating news that Jacob had a large brain tumour.
Now the couple are determined to enjoy every precious minute they have with 11-week-old Jacob.
Kate and Andy, from New Road in North End, Portsmouth, found out she was pregnant last November.
‘I was over the moon,’ she says.
Then, in April, Andy came home from work with a surprise.
‘I was sat in the back garden and he said he had a present for me. Then he asked me to marry him. It was lovely. ’
The couple had planned to get married next summer with a vintage-style wedding. But their circumstances soon changed.
On July 25, Jacob was born. He was 16 days overdue and Kate had to have an emergency caesarean because he was breach. But he arrived safely weighing 8lb 60z.
‘I cried my eyes out,’ Andy says.
Kate adds: ‘It was awesome. I couldn’t believe he was ours. He was so beautiful.
‘The first couple of weeks were brilliant. He more or less slept through the night.’
But then things started to take a turn for the worse. Jacob was sick and no longer sleeping as well.
A health visitor noticed he wasn’t putting on as much weight as he should have been for his age.
The problem with his eye not closing led to tests and the shocking news that he had terminal cancer.
He was transferred by ambulance from the QA to Southampton General Hospital.
‘I phoned Andy, which was the worst phone call of my life,’ recalls Kate.
The tumour was 5cm at its largest, around a quarter of Jacob’s brain. He was diagnosed with an extremely rare form of cancer known as an Atypical Teratoid Rhabdoid Tumour (AT/RT).
Kate and Andy were told that if Jacob didn’t have surgery, then he could have a matter of days to live.
‘The run-up to the surgery was horrific,’ Kate says.
‘In all honesty we didn’t think he would make it through. We took him down to theatre ourselves.’
So at just six-and-a-half weeks old, Jacob had his operation. It lasted around six hours, during which surgeons managed to remove 95 per cent of the tumour.
Kate says: ‘I said that he was a little fighter and one of the surgeons agreed and said they were pleasantly surprised because he had done really well during the surgery.’
But cancerous cells remain and Kate and Andy have been warned that Jacob’s cancer is terminal.
He spent two weeks in the Paediatric Intensive Care Unit following the operation. Eventually, he was taken off a ventilator and began to breathe on his own.
When Jacob was diagnosed, Kate and Andy made the decision to marry as soon as they possibly could.
She explains: ‘Because of the diagnosis, we both decided that, if we were going to lose him, then I didn’t want to let him go without having the same surname as me.’
They had to apply for a waiver to allow them to get married quickly, as usually a couple have to register their intent to marry at least 28 days in advance.
But thanks to some quick work by Portsmouth Register Office, they were able to get married on September 16.
Jacob also had a special naming ceremony in the chapel at the hospital shortly after his diagnosis.
‘It was a bit of a whirlwind,’ adds Kate.
‘We got back to the ward and the staff had got us a cake and a balloon and made us a card with Jacob’s footprints on it. They had really made it quite special for us. The staff have been absolutely phenomenal.’
Two weeks later, the couple were given the option of taking their son home. Kate says: ‘We have had to learn quite a lot of different skills. We have been trained in CPR and physio.
‘We know that we are going to end up back in hospital, whether it’s through deterioration or treatments.
‘But we wanted to have some time at home to enjoy being a family.
‘It was quite daunting bringing him home, but we have got fantastic support.’
A community nurse visits every day and the family have been given various contact numbers should they need help.
Jacob needs 21 doses of different medication every day.
After the operation, he suffered nerve damage so a special suction machine is used on a daily basis to remove a build-up of mucus and saliva that gathers in his airways. He has to be fed through a tube.
Andy says what has happened has brought him and Kate even closer together.
‘It’s been awful. We went through the stage of saying “why us?”. But it could be anyone. If anything we think we are fortunate because we are dealing with it quite well.’
‘We definitely feel closer than we did before.
‘The worst thing is feeling useless. It’s our job to look after him and there is nothing that we can do.’
To top it all off, the couple have no form of income as Kate was made redundant in December last year and Andy is a self-employed plumber.
Fortunately, their friends and family have been hugely supportive and a fundraising page has been set up by Kate’s cousin.
It means that Andy can stay at home and spend time with his son without having to worry about bringing money in.
So far, more than £6,000 has been raised.
Kate adds: ‘I don’t want people to be awkward around us. We don’t want Jacob to be forgotten about.
‘We want as many people as possible to meet him. He is a little fighter.’
After Jacob’s operation, Kate and Andy were keen for the tumour to be used as part of research into the disease.
Kate is encouraging parents to seek help for any health concerns they might have.
‘People need to get things checked out,’ she said.
‘If we hadn’t gone to the hospital and they hadn’t spotted his eye, he would be dead by now.
‘I would rather be here now making every second count than having had that taken away from us.’
So where do the family go from here?
‘We’ve been told it’s terminal,’ Kate adds.
‘The problem that we have at the moment is he’s not big enough to withstand chemotherapy.
‘They could go and do more surgery but there’s no point in doing that if they can’t back it up with chemotherapy.
‘We are optimistic as many parents can be but we are also realistic.
‘The goal, apart from enjoying every moment that we get, is getting him bigger and stronger.
‘But we don’t know when that will be. It could be six weeks, it could be six months.
‘Whatever happens it’s going to be awful. But we refuse to spend whatever time we have got crying over it. That’s not making any memories. We need to make as many memories as we can.’
WHAT IS AN ATYPICAL TERATOID RHABDOID TUMOUR (AT/RT)?
An Atypical Teratoid Rhabdoid Tumour (AT/RT) is an extremely rare tumour, usually diagnosed in children aged three or younger.
Although it is usually a brain tumour, it can occur anywhere in the central nervous system (CNS), including the spinal cord.
It is a disease in which malignant cells form in the tissues of the brain.
About 60 per cent will be in the posterior cranial fossa (particularly the cerebellum).
The cerebellum is the part of the brain that controls movement, balance and posture.
The brain stem controls breathing, heart rate and the nerves and muscles used in seeing, hearing, walking, talking and eating.
An AT/RT may also be found in other parts of the central nervous system.