Eloise's incredible story .

Our amazing little beauty.

Eloise is a bundle joy!  She loves listening to, singing along and dancing to Christian songs!  Eloise was diagnosed with an Embryonal tumor with Multilayered Rosettes (ETMR) in 2020, 5months after her first birthday.

 
It has been nothing short of a rollercoaster experience for Eloise, mum Mel, dad Pete and older sister Anna!  January 2021 brought with it, prolonged hospital admissions, and historically a hydrocephalus, an ETV, multiple brain surgeries, biopsies, transfusions, seizures, trembling & unsteadiness etc. 

Words are not sufficient to tell this amazing little girl's story.  Read mum & dad's honest account of Eloise's difficult but real life brain tumour journey. 

FIRST SYMPTOMS AND GETTING A DIAGNOSIS 

• "In August 2020 Eloise started having odd ‘moments’.  She would run up and cling to us for a few seconds and then carry on toddling around. Our childminder was the first to mention that these ‘might be a type of seizure/absence seizure’. We went to the hospital out of hours and our GP. We were given a date in December to see a paediatrician, so we went privately in meantime – had an EEG and ECG done, and results showed nothing unusual."
• "The NHS system catches up and Eloise is given an appointment with an Epilepsy consultant.  Mel meets with the Epilepsy consultant and she thinks Eloise does have Epilepsy despite her clear normal EEG – thinking she is having partial focal seizures.  A sleep EEG is done – the results of which are inconclusive but showing a very slight abnormality.  Epilepsy consultant just feels something’s not right…. as a result, she books an urgent MRI (Eloise’s first general anaesthetic), to rule out anything structural."
  

IT'S A BRAIN TUMOUR...

• "25th November Eloise has her first MRI.  On the 27th of November 2020 Mel and Pete are urgently called into Epilepsy consultants office to be told that the MRI has showed that Eloise has a brain tumour.  We feel heart broken & devastated.  Although the scan indicates it is very likely to be low grade, treatment is likely to be needed.  Quickly, Eloise starts anti-epileptic drugs, but sadly they do little to help."
• "In December - we visit the neurosurgeon at St George’s hospital.  We are told they want to ‘watch and wait’ and scan again in 3 months.  We are told it’s most likely to be a low grade tumour and as it is in an awful location for surgery and ‘watching and waiting’ is the recommended approach."
• "We are told even a biopsy is too risky due to the location (tectal plate/close to brain stem).  In the meantime Eloise is referred to a range of specialists to manage other potential issues caused by tumour – suddenly, she needs to see an opthomologist, endocrinologist, haematologist, occupational therapist, child psychologist etc. etc."
• "Overwhelmed by the sheer complexity and speed of it all, Mel and Pete request a second opinion from Great Ormond Street.  Regretfully, this confirms that watching and waiting is the most expedient approach."

OH...!

...IT’S A HIGH GRADE, VERY AGGRESSIVE, CANCEROUS BRAIN TUMOUR LEADING TO BRAIN SURGERY #1.

• "Eloise’s symptoms worsen over Christmas AND she has up to 20 partial focal seizures a day despite meds.  Eloise starts falling over frequently and the neurosurgeon brings forward her next MRI.  On the 27th of January Eloise is sent for a 2nd MRI and we didn’t even get to leave St George’s the hospital!"
• "One day, a neurosurgeon walks in whilst Eloise is in recovery and informs us that the tumour has grown aggressively and is causing severe hydrocephalus (fluid on the brain) and that brain surgery to relieve the pressure is needed immediately.  It feels like a dream and at this point we're reeling from one heart-breaking discovery to another, about our beautiful little girl." 
• "36 hours later, Eloise has her first surgery (#1 brain surgery) to relieve the pressure (via an Endoscopic Third Ventriculostomy or ETV).  We we're told that a biopsy of the tumour was also needed and we had no option because we needed to know what the tumour was, as it was clearly not a low grade tumour!  And so, the neurousugeons insert a Rickham reservoir in preparation.  The surgery went well, but following the surgery Eloise had major uncontrolled seizures and the doctors struggled to get them under control, due to trapped air in the brain, which led to an intensive care admission and a week stay in hospital!" 
• "In February 2021 the neurosurgeons confirmed that the tumour biopsy is an ETMR brain tumour.  This is a very, very rare, highly aggressive cancerous brain tumour with a dismal prognosis.  Terribly, we were given 10 to a maximum 20% survival chance…. and this is the average survival is 9-12 months.   Added to this, Eloise’s tumour is in the riskiest part of the brain to operate and neurosurgeons are unlikely to be able to remove it.  At this point you start to wonder if this is really happening to you...and to your precious little child?" 
• "From advice, chemotherapy is recommended, as a trial, to try and shrink the tumour away from the risky area of the brain – all so that surgery becomes more possible."
• "How do we feel, tired, overwhlemed, shocked, grieving, angry, confused and more..."
• 
  

SPRING 2021...HOW DO WE FEEL?

"Eloise began a high dose intensive chemotherapy in February, through March 2021.  We've never stopped asking for prayers to see her through her chemo cycle and the recovery process.  This has been difficult on our family and we have felt separated as we can’t all be together.  Distraught and tormented by the statistical prognosis, which, coupled with seeing Eloise become poorly from chemo and the changes in anti-seizure drugs, is very distressing.  Everyday we just wished for a ‘normal life/normal day’.  Eloise has already suffered so much and her life is a world apart from most one year olds (and bluntly far from what we had envisioned for her).   We are incredibly proud of both Eloise and Anna.  Eloise is a fighter and still charms everyone even when she’s unwell and Anna is doing so well and is incredibly understanding and caring.  They are both absolute superstars and are showing amazing resilience and strength of character."

For those that pray: 

• We are grateful for your prayers through Eloise's treatment, the side effects, intensive care and recovery.
• We are grateful for our wonderful oncologist at the Marsden (Dr Sucheta Vaidya) and a whole team of experts across the world who worked out the best treatment for Eloise.  As ETMRs are so aggressive, Eloise definitely needed intense future treatment and a few ETMR survivors have generally had a Gross Total Resection (Eloise managed to have this!!), high dose chemo and focal radiotherapy/proton therapy!  These 3 factors increased her chances of surviving.
• "On the 7th of June, Eloise turned 2 and the neurosurgeons
• "From advice,
• "How do we feel, tired, overwhlemed, shocked, grieving, angry, confused and more..."
  

A journey of challenges, faith, hope & resilience.

"Our wonderful and delightful Eloise turned 2 on the 7th of June.  There is so much we could say and we don’t quite know how to summarise it.  But here goes - Eloise you are amazing and we are so proud of you.  The last year has been harder on you than we could have ever, ever imagined and we are so desperately sorry you are going through this. But you have lived up to your name - you fight for life in all its fullness. You are absolutely amazing. You always give everything 100%. You try, try, and try again, never giving up. You inspire us, have taught us so much and we couldn’t love you more. Thank you for bringing so much joy to our and Anna's lives - for your sense of humour, your intelligence and your steely determination. We pray that you continue to grow into all that God intended and that you know how much you are loved and how incredibly proud we are of you."