Gracie's Story

Sadly, Gracie gained her angel wings on 16th March 2017 and Kidscan sends all our love to her parents Katie and Callum. We are honoured to be part of Gracie’s story, and proud that she could be the face of Kidscan’s “I Miss…” campaign in 2016. Courageous Gracie will always be a wonderful Ambassador for Kidscan.

With incredible grace, Katie says “We’ll be forever grateful to Kidscan, we had some lovely experiences through our involvement, and it’s given us more memories to treasure while helping you guys in the process, which is all we ever wanted! We would love nothing more than for her to continue to represent the charity in whatever ways she can.”  R.I.P. Gracie.

At two years old, Gracie McCall was diagnosed with an aggressive brain tumour. Her mum, Katie, talks about her experience:

Everything happened very quickly for us. It was January 2014 and we had just enjoyed a great Christmas and New Year.

Gracie was almost two and a half and had started to be a little under the weather, which we put down to a little cold or virus due to the time of the year. She was snotty and had a temperature – all fairly usual for a toddler.

However, in the space of a week she got progressively worse. She became increasingly lethargic, and had an awful cough – something I would later learn was due to pressure from the tumour. She was also very emotional, struggling to make decisions and not seeming to know what to do with herself. Gracie’s dad, Callum, and I had taken her to the GP but it was put down to general viruses and had always cleared up after a few days. The only other symptom she really had in the weeks leading up to everything was being car sick, but we thought that was all that was and never for one moment thought it was because of a brain tumour.

Then, on the morning of the 14^th January, we went to wake Gracie up for nursery and were met with the most distressing sight. She was whimpering and her arm and leg were twitching – she was having a seizure down her left hand side. We called an ambulance, but even at this point I didn’t believe it was anything too serious.

I vividly remember the paramedics taking her temperature, which had reached almost 40, and them being relieved, as that sort of thing without a high temperature could mean a brain tumour. Even upon hearing that, I still couldn’t believe it would be anything very serious.

We were rushed to Royal Manchester Children’s Hospital where Gracie had a CT scan straight away. Much later that evening, when we had been transferred to a ward, we were finally told that she had a brain tumour on her right frontal lobe. We felt complete devastation and disbelief – we had been at ballet the week before, how did we not know this thing was growing in her brain?!

Gracie had an MRI scan very late that night and plans were made for emergency brain surgery to take place on Sunday. The surgery was a success and the tumour was removed – we then waited to find out what type of brain tumour it was.

A week later we were told. It was AT/RT (Atypical Teratoid Rhabdoid Tumour), a very rare, aggressive tumour. Only around four to six children per year are diagnosed in the UK and survival rates for children under three are pretty dire – around 10%. Outcomes are often poor because children cannot survive the aggressive treatment.

We discussed the treatment plan with our consultant, which would involve nine rounds of IV chemotherapy lasting two to four days every two weeks, with six weeks of focal radiotherapy to the tumour bed providing there had been no spread of the cancer to her CSF. If the cancer had spread she would need to have high dose chemotherapy with stem cell transplant.

Naturally we were terrified about the treatments, but we had no other choice. I was most afraid of the radiotherapy due to the possible late side effects on memory, learning and her ability to lead a normal life – especially given her age. However, it was radiotherapy which had seen better outcomes for children with her type of tumour. We discussed delaying it until she was older, but we wouldn’t have been able to live with ourselves if we had done this and the cancer returned. It was a terrifying decision.

Normality became a life of thumb pricks, blood counts, chemo, general anaesthetics, MRIs and over 30 blood transfusions. Gracie started radiotherapy at the Christie on the 17^th March, which involved a general anaesthetic every day for 30 days. She was still having chemo at the same time and got a lot of temperatures. She also had to take antibiotics to ward off any serious infections.

Even when Gracie must have been feeling so, so awful she was bright, chatty and really wanted to play – just like any other two year old. It was heart breaking and so inspiring at the same time.

We finally rang the end of treatment bell on the 3^rd of July 2014. Thankfully, she doesn’t have any permanent damage to her vital organs – something that many children suffer due to the poisonous treatment. However, Gracie’s hair has still not grown back on the top of her head and we don’t yet know what long term effects there may be from the radiotherapy. Whatever the future holds we will get through it, because that’s what you have to do.

It is the most devastating thing to be told your child has cancer, but we received incredible support from friends, family and hospital staff. It has been hard to go back to ‘normal’, as it takes over your whole life. The experience isn’t over and in some ways it never will be. What I have learnt is that a cancer diagnosis isn’t the end – children are strong and your baby will get you through the darkest days imaginable.