Ellie’s story
Aurora employee, Jody, nominated Neuroblastoma UK to be one of the company’s charity partners for this year, after sadly losing her six-month-old daughter, Ellie, to neuroblastoma in 2011. Jody shares her story here…
“My first-born daughter, Ellie, was a very happy baby. She slept well, fed well and was always smiling. She was a very alert baby and enjoyed lots of interaction from her elder siblings.”
The journey to diagnosis
At 12 weeks, my chunky baby was diagnosed with a hernia, due to her distended belly button. She thrived day to day, along with healthy vitals, I was advised the diagnosis would not require any treatment until walking age, as this can be very common in children.
As Ellie grew, her hernia did too. She was experiencing digestion issues, colic, teething and symptoms most 6-month-old babies have. Coupled with introducing food, her ailments were typical of a healthy growing child. She would have difficulty laying on her stomach which impacted her mobility slightly. However, due to her hernia diagnosis, this was not necessarily a warning sign. Unusually however, Ellie on occasion would sweat. This was localised to her back and would present upon returning home from outings.
As a new mother, I was unaware. We learn lots of parenting information as we prepare to meet our children. However, would we need to be aware of symptoms of childhood cancer, just in case?
Not typically, which is why I have chosen to share Ellie's story and hope that with vital research, we can firstly eradicate neuroblastoma in future and secondly, raise awareness for early diagnosis. Treatments are slowly advancing. However, this can only be furthered with kindness and the generosity of humanity.
“Our lives changed overnight.”
The hernia and her stomach became very extended and hard. This was not normal. Coincidently with a trip to the local health clinic organised that morning for weighing, Ellie presented to the health visitor who advised we should take her to the hospital immediately.
She was admitted to the paediatric ward at our local hospital and was treated with pain relief whilst blood tests, urine samples and scans were organised.
I was very aware of the seriousness and urgency of our situation. However, I could not contemplate any other outcome than taking my baby home once she was better.
We were able to leave the hospital for homestays most nights, as we waited for further testing due to her being so strong and having healthy vitals. Her stomach was being monitored as the size was expanding rapidly. This continued to increase and with test results complete, a decision was made to move Ellie to Great Ormond Street Hospital via medical ambulance.
We arrived to find a full consultant team who seemed surprised to see my bright, blue-eyed smiley baby, with her bottle in hand. Treatment for her was already prepped and we were told immediately our daughter had Stage 4 Neuroblastoma. I was clueless. However, ‘Stage 4’ resonated. We were advised of the drugs being used to treat her and administered. She was strong and defied the odds this far. She fed most days, bottles and rusks, while listening to nursery rhymes and watching her favourite shows, all while she was receiving chemo. Treatment took effect instantly – the side effects of the treatment were very intense and rapid. The tumour had stopped growing.
With healthy vitals, an operation would be scheduled for a Hickman line to administer the chemo going forward, as well as a bone marrow aspiration and a biopsy of the tumour, which GOSH had diagnosed to be situated from her liver to her stomach.
Her future was considered. By us and by the medical team. Would this treatment affect her for the rest of her life? Will her cancer come back? Will her hair grow after chemo? Will she be able to have children? Will she be able to have a normal life? Will she be the little sister who was loved and adored?
“Ellie was a real-life angel by my side.”
Ellie was inundated with visitors as she prepared for her surgery – this would be the beginning of her fight and she was determined to be happy every day and gave me so much hope. A real-life angel by my side. I would be as strong as she was.
Surgery morning arrived, she was happy, settled and fed. Vitals were stable, and the tumour had still not gained any mass.
After surgery, Ellie was brought back to her room to rest and receive a blood transfusion. All her procedures were successful. I was grateful my baby was back safe from theatre. However, she was not her usual happy self. She slept as expected. My little angel had been through so much that past week, but always had a smile for mummy.
Unfortunately, a smile I would not see again. After her vitals declined, she was transferred to ICU and was monitored around the clock with constant supervision overnight. She became stable, yet despite best efforts, she tragically passed away the next day. Ellie was now with the angels.
“Moving on was excruciating… time stood still.”
Moving on was excruciating. Leaving my baby behind whilst she was prepared for her forever resting place was immense. In the immediate aftermath of her death – time stood still.
My focus was maintained by my younger sibling and I was blessed to receive another daughter within a year of Ellie’s passing. I found Ellie’s death extremely painful to talk about. However, with my second pregnancy, vital medical information was imperative. I have daily reminders of Ellie which I describe as bittersweet. Over time the hardest question I have faced is ‘how many children do I have?’ I have three – the immediate response. ‘How old are they?’
She would be… doesn’t seem fair!
HOPING ELLIE’S STORY WILL SAVE LIVES
I have researched neuroblastoma and have discovered this illness is random and has no discriminations. It is particularly an early childhood cancer with a survival rate of 5 years.
My aim and mission is to raise as much funding as possible for Neuroblastoma UK and I hope Ellie’s story can raise awareness and with the most optimism, save a life…
Ellie’s organs were donated to medical science and she will always be remembered by her family and the book of rest at GOSH.
I am so pleased Aurora has chosen to fundraise for Neuroblastoma UK this year. We have many events being held and I am honoured to be able to contribute efforts towards this.”
