Our lives changed forever when our ‘healthy’ toddler tripped – I was hysterical, terrified she was going to die
WHEN my daughter Grace was a baby, she started crawling.
Before I knew it, she was putting her little hands on the furniture to stand up and walk around.
But suddenly, after making lots of progress, she kept falling over a lot and we didn’t know what was going on.
One day, when she has one, she tripped and cut her eye open on the TV stand, which was horrible.
I was in hospital until about 1am – then had to get up and run a marathon at 5am.
Doctors referred us to community paediatrics, but before the appointment she continued to lose her balance and started being sick.
She vomited on a Saturday then on Monday went to nursery, where she threw up everywhere and couldn’t stand.
I took her see our GP and Grace fell on the floor, so he told us to go straight to A&E.
She had an MRI scan and was admitted overnight, and the next day the doctor came in and said: “She’s got a brain tumour.”
My partner Fiona and I replied: “You’re saying our daughter has cancer?” We just couldn’t believe it.
An oncologist, a nurse and a charity worker talked to us about medulloblastoma, but we were hysterical, all over the place.
They said Grace’s tumour was at the top of her spinal cord, which was blocking spinal fluid going into the brain.
It was the size of a golf ball, and we were told she had likely had it for about nine months.
Grace was booked in for surgery but she was given a 50/50 chance of survival so we had the whole family round the day before just in case.
It’s all a bit of a blur now, and everything moved really fast.
Somehow I managed to sleep for five hours during her operation. I was exhausted.
Then we got a phone call to say Grace was in recovery and the procedure had been successful.
We were so relieved, and we stayed with her in intensive care for as long as we could.
The next morning, we went back and it was just the best thing we had ever seen. I well up thinking about it even now.
Despite having just had surgery, Grace was out of bed and running – it had such an immediate effect. Doctors and nurses couldn’t believe how quickly it had worked.
She was fine for a few weeks, but then she started showing symptoms again – she was stumbling, falling and had poor balance
Darren Frazer
Five days after the operation, our daughter came home and started six months of intensive chemotherapy to kill any remaining cancer cells.
She had a tiny reservoir put in her head to inject the drugs into her brain while she was awake.
I had to pin her down so they could do the injection, and times like that were really hard.
Fiona has a phobia of needles so I knew I had to be the one to do it.
Grace finished treatment in June 2015 and got the all-clear in August.
She was fine for a few weeks, but in September she was unwell a lot and started showing symptoms again – she was stumbling, falling and had poor balance.
We went to the hospital a few times and they said it was a “symptom rebound” where a viral infection was showing signs of a previous tumour, but we were adamant it had come back.
Once Grace was physically sick, we took her straight back again and my wife said: “We’re not leaving until we get a scan.”
Finally, our oncologist said: “Fine, you know your child best.”
We went to the waiting room and not long after that, there was a moment when we saw everyone come into the room, and we just knew.
They said: “She’s relapsed.” The tumour was the same size as the first one and really aggressive.
The doctor said he’d never had anyone relapse like that and immediately scheduled surgery.
While this removed the majority of the cancer, it couldn’t get it all and Grace started a new plan radiotherapy and chemotherapy, which was extremely difficult.
Thankfully, this time, it worked and she’s now six years cancer-free.
We were told the likelihood of the disease coming back is virtually zilch, so we finally feel a little bit of relief.
It’s the unknown and the anxiety thinking it’s going to come back that has a huge impact on your mental wellbeing.
It was difficult while Grace was being treated. Fiona wanted to do everything and I hate hospitals, so she stayed there at first.
But only one of us could sleep there each night and it was getting far too much, so we decided one of us would do days and the other nights.
I can sleep just about anywhere, so Fiona was there during the day and I stayed at night. She would go home at 6pm and then come back at 9am.
It was hard being nocturnal, and we were like ships in the night.
‘Amazing Grace’
While Grace is cancer-free, radiotherapy has left her with learning difficulties, emotional issues and behavioural problems.
She’s mentally about three years old. She knows she was unwell but she doesn’t know what was wrong, and we’ll tell her when she gets older.
Grace has got some schizophrenic symptoms. You can click your fingers and she’s a different person.
She’ll kick things and hit you, but we’re hoping to get help with this going forward.
Aside from that, she’s doing brilliantly. She’s resilient and takes everything in her stride. People call her ‘Amazing Grace’ and I’m so proud of her.
It was very emotional at my dad’s funeral as he wanted Amazing Grace played.
After a trial, Grace now takes methylphenidate – a drug for children with attention deficit hyperactivity disorder (ADHD).
She puts it in her mouth and doesn’t even need any water, and reminds her parents if we forget.
We tried her at a mainstream school, but the charity Tom’s Trust helped us realise she needed a specialist school so she attends one in Newcastle with about 12 kids to a class.
Grace loves it. She can’t fully read everything yet, but she’s getting there and she can write a bit. Numbers are her thing. She loves maths.
But it’s not just the normal stuff. They’re teaching her social skills and independence.
Last year, they took the bus into town, so they all had to pay their fare and then order and pay for their food in Greggs.
Her future is uncertain. I don’t know how independent she’ll be, and no one can give us that answer.
I know my anxiety stops her from doing some things. I do everything for her, even down to making toast. I just don’t want to let go. It’s really hard.
When Grace was diagnosed, I was made redundant and my wife has multiple sclerosis and she was having a relapse.
My boss was excellent and paid me sick leave until my redundancy date. We’d not long bought a house, so that really helped.
When Grace relapsed, I’d just got my taxi driver licence so I was self-employed and Fiona had been back to work for two weeks at a local public transport company.
We’ve found that it doesn’t work for us both working all the time while balancing life with Grace and Fiona’s MS.
So I took a four-year career break and Fiona works full time as a receptionist.
Grace’s brain tumour has completely changed our lives, we’re restricted in what we can do, we have to plan absolutely everything.
Grace, now 10, is very routine-driven, and we’ve had to wrap her up in cotton wool during treatment, going back and forth from hospital.
At the moment, we’re going to Great North Children’s Hospital every six months, and she has an annual cancer review.
Darren's advice to other parents
There’s no advice you can give someone pre-diagnosis, and one of the hardest bits is to actually get that diagnosis.
The doctor who’d seen Grace when my wife took her up was distraught and upset that they hadn’t ‘spotted it’.
The advice I would give is to look after yourself. Take any help you can.
It’s your child going through treatment, but in a strange way you’re going through it as well, and your mental health is the most important thing.
Keep talking to people, reach out.
Now I’m quite open and I talk to everyone. When Grace relapsed, I would talk to my customers like counsellors and I’d talk about Grace. It helped me.
I’d say to them things could be worse when they moaned about things and I did my best to spread awareness and tell people to go to the doctors if the signs are there.
If you think something is wrong, ask for an MRI.
You’ve got to trust the hospital. They’re the experts, but advocate for yourself.
What is medulloblastoma?
Medulloblastoma is the second most common type of brain tumour in children.
It develops at the back of the brain in the cerebellum and is fast-spreading.
Around 52 children are diagnosed with medulloblastoma every year in the UK. Adults can also get it, but this is rare.
Symptoms often develop over several months and may not be noticeable until the cancer has spread. These include:
- Headaches (particularly in the morning)
- Feeling or being sick
- Double vision
- Finding it hard to sit or stand unsupported (children might fall backwards)
- Problems walking
- Stumbling, falling and general clumsiness
- Being irritable (kids might take longer than usual to settle)
- Appetite loss
- Behaviour changes (children might interact with their siblings less)
- Increased head size
- A swollen or soft spot on the top of the skull
On average, around 85 per cent of children diagnosed with medulloblastoma survive for at least five years.
Source: Cancer Research UK and Brain Tumour Research