In Memory of Gracie

March is Brain Tumour Awareness month and we are remembering one of our Kidscan patient ambassadors, Gracie, who gained her angel wings four years ago.

Gracie was only two years old when she was diagnosed with a very rare, aggressive Atypical Teratoid Rhabdoid Tumour (AT/RT). Only 9 children per year are diagnosed in the UK and survival rates are only 23%.

ATRT is a Central Nervous System tumour of the brain or spinal cord. The tumours develop from stem cells that helped the embryo to form in the womb, but have remained active in the brain after birth. When these stem cells fail to stop dividing after the child is born, they can form a cancerous tumour.

Incredibly, after a gruelling five-month regime of chemotherapy, blood transfusions, radiotherapy and further tests, Gracie was able to ring the end of treatment bell in July 2014.

But sadly, Gracie suffered a relapse and gained her angel wings on 16th March 2017

Here we tell Gracie’s story by hearing from her mum Katie who, as Mother’s Day approaches, tells us how Gracie is still an important member of their family and big sister to Flynn aged 3 and Everly, 18 months old. Katie begins by telling us about that time, four years ago.

“Gracie had been very poorly prior to December 2016, but she had a really nice Christmas, we had fun and she was enjoying herself and her time. But at the beginning of 2017, she was admitted to ICU, ventilated and sedated. Gracie recovered but we found out during that time that the tumours had progressed again.

Gracie had had radiotherapy to her brain in October, which gave her a few more months but had not helped as much as we had hoped.

Our only option was a trial drug, we’d known about it for a long time but there had either been no space on the trial or it was not the right time. But at that stage, it was pretty much our last option. That was a really stressful time. Obviously, the criteria for the trial were so strict and we didn’t know if she was still eligible. Various tests had to be done but some blood test results were not quite right… eventually we were able to start and Gracie was granted this drug that targeted her particular tumour. We hoped it might buy us some more time.

So, she started on that, we didn’t see a huge improvement but she was not getting worse. That’s the thing with an AT/RT (Atypical Teratoid Rhabdoid Tumour), when they start to deteriorate, they can go downhill fast.

Then around the start of February she had some totally random bad luck. Gracie (like many cancer patients) had a port into her chest; a line for drugs and bloods to be delivered. She got an infection in this port so was admitted, given the standard protocol of antibiotics and admitted to the ward. At that stage when she was not getting better, needing oxygen and really poorly, we found out Gracie had pneumonia.

At that point everybody thought (her Consultant, nurses and us) was that it? Can she get over the pneumonia? It transpired that when they’ve been on treatment for such a long time, it weakens the immune system and can it be the body saying an awful lot has been going on, they’ve had enough? But in true Gracie style, she kicked the pneumonia! It cleared up, but as we’d had to stop the trial drug in the meantime, even that small gap of three weeks, that led to the tumours doing what they do and progressing again.

We weren’t sure if Gracie could carry on in the trial as she’d had this gap, so we were back and forth between the drug company and her clinicians, eventually they said she can restart. That was the Friday evening, so we left hospital feeling really positive. Gracie was not great but she was better than she had been, we would hopefully get the drug again so we could see what that can do.

So, we spent the Friday evening at home, then had a relaxing day on the Saturday. Gracie absolutely loved colouring, almost obsessed about it! So a calm day at home… but in the early hours of Sunday, she had another really bad seizure at home. We had to call the ambulance to get Gracie to hospital where she was ventilated and sedated but she never came round from that seizure. When it actually happened, it was quite a shock and happened quickly.

We knew how poorly Gracie was and that she was never going to get better, but for that to happen again… That was the 9/10th March so she was back into ICU where they did a scan. Gracie had a shunt fitted from a couple of years before, the scan had shown that was blocked and could be causing the issues. They were pretty sure it wasn’t but they did operate to replace the shunt. But we knew then and we talked to her doctor about what we’d do and where we wanted to be, because they’d said they’ll take her off the vent and didn’t expect we’d have long with her after that.

So, this happened over a couple of days, we spent that time in ICU with Gracie and made the decision to go to Frances House, a local hospice near us, where she passed away on 16th March.

From the beginning of 2016 really, we’d been in hospital more than we’d been at home. Her Consultant said to me and they’re right, I am relieved and grateful that she had those couple of days at home before. That’s all she would have remembered. Sometimes I’m grateful that we didn’t see her deteriorate over a long time, some families can spend months and months in the hospice. So sometimes I’m relieved that we got to be at home together then Gracie went to bed and that’s the last she knew.

We were relieved to get to Frances House as we didn’t know if she’d be able to go, getting her stable enough to transport her, trying to move a child that ill is a massive undertaking really – shows you how brilliant the team at the hospital and Frances House were to be able to do that. We thought about coming home but Gracie needed quite a big team around her, to bring that home to what felt like our place didn’t feel right. Frances House were absolutely wonderful and have been since.

Friends and family, they’d been through everything with us all the way along and many of them were able to come and see Gracie at Frances House to say goodbye. The ICU environment is horrific, with machines and wires everywhere, no one wants see that. So, family and friends were able to say bye at the hospice which helped. It was a surreal time really; you don’t think it’s real or really happening.”

Gracie was such a young child but as Katie explains, she made a big impact on the people she met:

“She loved a chat, Gracie was really talkative even from being little, mainly about cats! She was really confident and not afraid to tell people what she thought. I think everybody got that sense, an old head on young shoulders, ahead of her years, not only with what she had to deal with, but the way she came across.

In some scenarios Gracie stuck out like a sore thumb. Going for radiotherapy at Christies, you don’t see many children there and some of those adults in the waiting room have said to me ‘seeing her really helped me get through my treatment’. Some got in touch on facebook to tell me, so to know she helped people along the way like that was amazing.

Gracie started school in September 2015, just before we found out she’d relapsed, and she really enjoyed school, really got stuck in. A lot of that year she was really well and managed to go which expanded her network of friends and experiences. That was the connection to Heatons Nursery as staff there, they were her teachers previously. Gracie loved talking about cats, so when we got our own cat Sparkle, who her ‘I Miss…’ video she made for Kidscan was all about, he was a hit! She loved singing, dancing and colouring. A bright little button who made everyone smile.”

At Kidscan, we speak to many parents who talk about the importance of making memories with their very poorly children, Gracie’s family felt that way too.

“I can understand why just about everybody in our situation says that, because as soon as we knew about her relapse, when we were no longer looking to be able to cure her, our purpose completely became her quality of life. We wanted her to enjoy things, having really nice times, experiences that would then give us memories we’d have to hold on to. We were very lucky to have loads of things.

The little things were important such as sitting on the sofa together, colouring together, we were taking everything in as much as we could. In terms of bigger things, the Ward 84 Party when a group of parents hold an annual party for all the oncology children, Gracie had a great time meeting with friends she knew from hospital, but out of hospital, brilliant times and memories

And then the biggest one for her, was a wish-granting charity helped us go to Disneyland Paris – Gracie had the time of her life. She was well then and really able to enjoy it all, which was fantastic.

One of my favourites was a family holiday in Tenby, a beautiful place and really the last holiday when she was really well. Things went downhill after that, but seeing her playing on the beach, visiting animal parks, swimming really enjoying life as she should.”

Katie has two younger children (Flynn age 3, Everly age 18 months), they know Gracie is part of their family and she’s important to them.

“Gracie is their big sister and that’s how we talk about her, it just happens to be that she’s not here with us. We talk about her all the time and what she did, what she liked and what she’d think about things now. Because they’re only little and she died before they were born, it is difficult for them to grasp, but they know absolutely that Gracie is part of the family.

Flynn who is three, he’s understanding a bit more. He’s started asking ‘will she be home soon?’ so we’re talking to him about it, that his big sister is not here with him but is always around us. We have lots of photos of Gracie too that we look at all the time with them.”

Gracie still inspires generous donations to Kidscan and Katie is keen to continue supporting our research and to raise awareness of children’s cancer, to try help other families.

“Our ultimate hope all is that all children can survive cancer, that families are not left missing their children. And just, well it’s not something I was ever aware of before Gracie’s diagnosis, the fact is that so many people are not aware until happens to you.

So there does need to be a lot more awareness of childhood cancer out there as it can happen to anyone overnight and then, when you’re in that situation, you find out that they’re using ancient treatments designed for adults to treat children. There is a desperate need for new, innovative treatments that work and don’t leave children with awful side effects. Even when children survive cancer, treatment can cause an awful condition they may have to face later in life. Its awful.

For me there just needs to be more of a focus on encouraging researchers [to study childhood cancer], there doesn’t seem to be a lot of incentive to do it. Even when funds for projects exist, they don’t seem to have an interest in that area. But children have got the greatest number of years to lose. Surely, they should be number one for funding?

It has struck me, of course it is amazing news that scientists have created covid vaccines so quickly, but it does go to prove that when you have unlimited funds and resources, science can come up with the innovation and create treatments for things. I do hope there can be a focus in that kind of way on treatments for childhood cancer.”

This month, its also Mother’s Day. Katie is sharing Gracie’s story in the hope that she can help other mothers, or fathers, facing a child’s cancer diagnosis.

“It’s a difficult one really as I don’t necessarily think any amount of advice can help but I suppose, as much as it is difficult at the time, families do come out the other side and the majority of children do get well.

When you’re in it, life as you know it is forever changed. Nothing ever comes close or can change it, it becomes a case of before and after.

Do lean on family and friends for support, you’ll also meet wonderful families whose children are also going through treatment, they will all help bring you through.

Ultimately your child, they’ll be the one to motivate you to get through and get done what needs to be done. You’ll see them facing things you wouldn’t ever have imagined and their bravery, makes you feel braver.

Also, we were so glad that we came across the Kidscan charity. I’m trying to think back, I think someone had reached out for families to share their stories before Childhood Cancer Month and I thought I’d be happy to share Gracie’s story if it helps. She’d only just finished her treatment then. Kidscan is a wonderful charity to be involved with, the way people have embraced Gracie really means a lot.”