Little Lady A is a Special Named Fund at CCLG raising money for research into ependymoma in memory of one-year-old Adeline.
Adeline was four months old when in November 2020 she was diagnosed with WHO Grade 3 supratentorial ependymoma RELA fusion positive, a brain tumour. Her mum Katie shares her story.
Our beautiful daughter Adeline was six years in the making, so when she was born in July 2020 after our first cycle of ICSI we were so happy, beyond what words could ever describe. Life was finally complete.
My husband, Rob, had secured a job in Dubai, and me and Adeline were in the process of moving to Dubai to join him. I travelled to Dubai with Adeline in September 2020 to see if that was the life we wanted. It was a wonderful life: the weather was warm, and the facilities Dubai had to offer children were amazing – it seemed like life was finally everything we wanted it to be, and we never took it for granted.
Adeline was born a healthy 8lbs 5oz. She was happy and smiley and ate and played well. She was just perfect. We always commented on how lucky we were to not only be blessed with a beautiful baby girl after so long, but how lucky we were that she was healthy too.
We were, of course, wrong.
One day towards the end of October 2020, Adeline was sick in the evening and had been quite grumpy and sleepy all day. We didn’t think much of it, and thought she’d perhaps picked up a bug. The following day was the same, and at about 7:30pm she vomited again, except this time I could see that her fontanelle was raised. This worried me, and the NHS website said to seek medical help immediately. We bundled Adeline into the car and drove to the nearest A&E, still fully expecting this to just be a bug of some sort and that we’d be home soon.
When checking Adeline over, the doctors were concerned about the size of her head – it looked normal to me, but they said she was off the chart in terms of percentile. It was decided to do an ultrasound scan over her head, while we were admitted on to the children’s ward and waited for some news, but none came.
The following morning, on 2 November, Adeline’s eyes started to turn inward, and she was rushed for an emergency MRI – this was when we were told she had a mass on her brain.
Adeline was admitted into the paediatric intensive care unit in a hospital in Dubai and underwent a 12-hour operation to remove the mass. We were told that this operation would likely kill her but were overjoyed when we got to see her that night and she was doing so well. The tumour was then sent off for analysis and being so naïve to ‘cancer’ at that point, Rob and I just assumed the worst was over. We thought, as it had been removed, she just needed time to recover and then surely, we would live a long happy life together.
We were wrong again: Adeline was diagnosed with a ‘WHO Grade 3 supratentorial ependymoma RELA fusion positive’ brain tumour.
Adeline spent three weeks in hospital having developed an infection, but once recovered, we returned home, and she was monitored. We decided to get her back to the UK as soon as possible as she’d be offered treatments there that weren’t available in Dubai. However, on 29 December, we were admitted to hospital again as she had developed hydrocephalus, so she had to have a shunt fitted before we could fly back to the UK.
We flew back into Heathrow on 9 January 2021, and were admitted into Bristol Children’s Hospital two days later. Adeline underwent another MRI which revealed some nodules of tumour remained from the original mass, requiring further surgery to remove. A Hickman line was then fitted, and a chemotherapy plan drawn up. The first chemotherapy plan was going to take a year to complete with weekly admissions, but sadly at the three-monthly review MRI in April, the tumour had started to regrow – so Adeline underwent her third major brain surgery. After this surgery, she developed weakness down her left side and was quite poorly with a line infection. Thankfully, after a few weeks, she regained her strength, and we were able to go home.
She was then put onto another chemotherapy plan, but in June, an MRI revealed once again that the tumour had started to regrow. At this point, we were told to consider a hospice and make Adeline as comfortable as possible. We were determined not to give up, and although the medical team weren’t prepared to do another surgery, we asked if we could at least complete this cycle of chemotherapy which they agreed to. On the next scan in July, the tumour hadn’t grown and for the first time we were ‘stable’, as we were again in October after the last dose of chemotherapy had been given.
In November 2021, Adeline underwent her fourth brain surgery to remove the bits that had regrown resulting in a complete removal, and a metal plate was fitted in her head to close the gap in her skull that had been affected by the original tumour and the many operations. They also fitted an Omiya port and a new shunt for the next phase of treatment.
In December, Adeline started her new monthly chemotherapy which was to be done via the Omiya port in her skull – this would allow the chemotherapy to go straight to the brain and ‘mop up’ any remaining cancerous cells. Life was finally looking good - she continued to remain happy, her hair started to regrow, she was no longer neutropenic or suffering from a weakened immune system, and her Hickman line was removed. It meant we could go out and finally do the fun things we’d been dreaming of!
But, in February 2022, an MRI revealed that the tumour had regrown at the original site and spread throughout her brain. We cared for Adeline at home, until she passed away in May 2022.
It was, and remains, the hardest thing we have ever had to do.
Adeline was such a happy child, always so content and smiley. She took everything in her stride, and as long as she had Mama and Daddy around her, nothing phased her at all. She loved watching nursery rhymes on TV, learning the words and dancing along. She was so clever, and nearly knew the full alphabet! She loved to have stories read to her, drawing on her easel at home (and her legs and the carpet!) and being outside. She’d learnt to stand independently and walk with her little trolley and was so close to taking those first steps on her own. Her least favourite activity was sleeping, but I’m forever grateful I got to spend every minute of her life with her, asleep or awake!
I wanted to set this fund up because I want her name to be spoken and I want her to be remembered. I don’t want what she went through to be forgotten or to be in vain. Our walk through the ‘hell’ of childhood cancer showed exactly how lacking the research was. Adeline was given adult chemotherapy at smaller doses, with no real evidence it would work, in the hope it would. It means so much to us as a family that we raise funds towards finding a cure for this evil disease, that robbed us of our beautiful little lady.
CCLG offers the opportunity for funding to go to a specific area or kind of cancer, and it’s very important to us that we raise money that goes straight towards the tumour type that ultimately stole our little girl. Now that we’re in this world of childhood cancer we can never turn away from it and want to help families in the future.
We chose ‘Little Lady A’ as the fund’s name as Adeline very quickly became lovingly known as that when we shared her story on social media. We hope to get as much funding in as possible doing sponsored events, and we already have friends and family wanting to raise money on behalf of Adeline, so what better place to donate it to then her own special fund!
Make a donation to Little Lady A
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Open an online fundraising page for Little Lady A
Set up a regular Direct Debit donation to Little Lady A
Research projects funded
Detecting lingering brain cancer cells before a tumour grows back
Fundraising pages
Text CCLGADELINE to 70085 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Little Lady A so that your donation is allocated to the correct fund.