Elara’s story
Two year old Elara spent Christmas 2019 in hospital, after being diagnosed with neuroblastoma on 13 December 2019. She had an 11cm mass in her tummy and needed treatment straight away. “It will be a huge celebration to have Elara at home this Christmas and I am so grateful she’s responding well to treatment. This is our story.”
Nicky and Elara are supporting our Christmas fundraising appeal to help give children with neuroblastoma a #BrighterFuture and raise vital funds to help scientists develop new, more effective and kinder treatment for children like Elara.
“When I woke up at 3am, I had loads of missed calls from the hospital. I knew then that something was seriously wrong. It felt like a bad dream.”
A bruise under Elara’s eye was so dark it looked like a black pen scribble
“I noticed that Elara had a bruise under her eye that was so dark it looked like a black pen scribble. The bruise didn’t clear, she developed blisters on her lips and was feeling unwell, so I called NHS 111.
We had an out of hours GP appointment, an initial diagnosis of tonsillitis, followed by blood tests and a full body examination the next day at the hospital. That night, Elara was quite poorly so spent the night in bed with me. When I woke up at 3am, I had loads of missed calls from the hospital. I knew then that something was seriously wrong. It felt like a bad dream.
“We went straight to hospital and following an examination, the consultant found an 11cm mass in Elara’s tummy. The doctors told me they were really worried about it and said it might be neuroblastoma - I’d never heard of it and had to ask them to spell it out for me! A urine sample confirmed her diagnosis and Elara needed treatment straight away
“…you have to put a smile on your face for your child and I never let her see me cry…”
Elara spent Christmas in hospital.
I’ll never forget our consultant telling me that my daughter had neuroblastoma and that it was a really difficult cancer to treat. It was just awful. The doctors said we’d initially be admitted for 3-4 months so we made the most of Christmas in hospital. We put a little tree in Elara’s hospital room and she took part in lots of Christmas activities.
On Christmas morning, Santa visited all the children and handed out presents - but it was also the first time that Elara’s hair started to fall out. That’s when it really hit me. But you have to put a smile on your face for your child and I never let her see me cry. The other mums on the ward were so supportive and we shared lots of hugs.
“We went on lots of ‘hospital adventures’ and she got superpowers from her Elsa and Anna wigglies. We call her scar her monster mark, and she’s so proud of it. ”
The surgery was a big success and the doctors were able to remove her whole tumour, which had shrunk by around 40%. An MIBG scan showed that it had cleared from her bones and bone marrow, with just a few spots on her knees. In May, Elara had high dose chemotherapy, which was really tough. She didn’t smile for weeks and had real sadness in her eyes. But it was such an amazing moment when she started to smile again.
Elara also had radiotherapy in mid-August and she’s just completed her first round of immunotherapy. She’s such a good little girl and has done really well.
I didn’t tell Elara what was wrong with her, I just told her that there was a big monster in her tummy that we needed to get out. We went on lots of ‘hospital adventures’ and she got superpowers from her Elsa and Anna wigglies. We call her scar her monster mark, and she’s so proud of it.
“We’re so lucky to be where we are as I know so many families who have been through really tough times. I’m just so grateful that Elara will be home this Christmas.”
“..it was such an amazing moment when Elara started to smile again…”
It’s a relief that we’re in the final phase but I’m also terrified and anxious for what the future holds. She finishes treatment in April 2021 but we’ve got to live with this forever. She had an ovary removed in case of any future fertility issues, she has two holes in her left femur and has a hearing impairment in both ears.
We’re so lucky to be where we are as I know so many families who have been through really tough times. I’m just so grateful that Elara will be home this Christmas.
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