Inspired by Elara

Elara was 2 and a half years old at the diagnosis stage.  It was a crushing blow to me, a single mum who had just begun working and finding my feet in a turbulent year.

There was no time to comprehend the enormity of this diagnosis. My main focus was getting my little girl through this vigorous treatment with a smile on her face.  Elara is a real girly girl so I adopted an approach to make this journey a fairy tale for her.

The initial chemotherapy she received, 8 rounds, were her ‘superpowers’.  We would pack up for our hospital adventure every few weeks to go get her superpowers like the other ‘lucky’ children we met at the children’s cancer ward.

I told Elara that some cheeky little fairies would be coming to take her hair away.  They would take it off to the woods and work at making it extra special for when they returned it to her.  Christmas Day 2019, we celebrated Christmas at the John Radcliffe Hospital while Elara went through her second round of chemo.  She called out to me; ‘Mummy, Mummy, the fairies have come!’ and passed me a clump of her beautiful bright blonde hair.  She was so excited, I feigned happiness before having to leave the room and break down in tears.

The next part of our journey was to have Elara’s tumour surgically removed from her abdomen.  I never wanted to shy away from being honest about what was to come.  So I drew her a big poster and explained that in her tummy, there was a little monster.  I told Elara that the naughty monster in her tummy was ruining the food party (encouraging Elara to eat made all meal times we had a ‘food party’).  From the diagram I drew, I had the monster made into a little toy, so following her surgery, I presented her with the monster we had successfully removed.  She was overjoyed – she had no idea how much this meant!

Next came high-dose chemo.  This was a 9-week admission to the ward across the summer months where Elara would receive life-threatening chemo to attack every possible cell of neuroblastoma we could.  It was a tough time for Elara.  Covid had hit, which meant, that no visitors could come to see us.  We were together in a room for those 9 weeks.  Elara lost her ability to speak, eat, and drink and was on morphine and intravenous nutrition to keep her going.  It was her 3rd birthday during that time, yet she had no energy to blow the 3 candles out on her cake.  But my girl showed her strength and began smiling and recovering, and after a long stint, we were given the go-ahead to return home.

The next phase of our adventure meant daily visits to London for radiotherapy in September 2020.  Elara bravely laid still, no easy feat for a young child, and alone in the room for the radiotherapy to attack any cells that remained in the torso area where the original site of the tumour was.  She knew that the lovely team at University College of London Hospital wanted to take ‘special photographs’ of her and mummy couldn’t be in the room as it was just Elara they wanted to see.  Elara sailed through this in her usual jovial manner – sticking stickers on the machine and being ‘chief fish-feeder’ were her highlights.

Our final quest was to undergo five rounds of immunotherapy.  This is a fairly new (in terms of cancer treatment) innovative procedure that teaches the immune system to attack the cancer should it try and return.

The immunotherapy could be put into a backpack and so Elara and her superpowers could have the treatment at home.  We were on the home straight. Elara’s hair was growing back, I had made her school application for September that year.  Life was on the up.

At the end of January 2021, Elara complained of pain in her leg.  Elara very rarely complained, so I took her to the hospital.  An MRI scan devastatingly confirmed that Elara’s cancer had returned.  I already knew the dire outlook and prognosis statistics of a relapse of this type of cancer.

I can’t even put into words how I got through that next month.  My focus never faltered on keeping Elara happy and unafraid.  As further tests were carried out, it became apparent that no treatment could treat or even halt the aggressiveness of this relapse.  I was told Elara had days to live.

My darling girl stayed brave to the very end, thwarting their predictions and allowing me a few extra precious weeks with her before she passed away peacefully in my arms.

During Elara’s treatment, I soon learnt that neuroblastoma treatment and research services are severely underfunded.  CCLG are a wonderful charity that works incredibly hard and relies on charitable donations to pioneer new research and trial new, kinder methods of treating childhood cancers successfully.  I shall forever continue to pioneer this Special Named Fund in Elara’s memory to raise awareness and funds on eradicating neuroblastoma, saving children’s lives, and ending the heartbreak of diagnosis and loss for families.