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Over the last few months, the journey has been very hard, complicated, challenging, mindblowing, remarkable and miraculous.
As people are often reading this blog fresh, or haven’t been following the journey in detail, here is a summary of where we are…
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.
• 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 first MRI.
27th November 2020 Mel and Pete urgently called into Epilepsy consultants office to be told the MRI has showed that Eloise has a brain tumour… The scan indicates it is very likely to be low grade, but that treatment is likely to be needed. Eloise starts anti-epileptic drugs, but they do little to help.
• December – See neurosurgeon at St George’s hospital. Told they want to ‘watch and wait’, and scan again in 3 months – it’s most likely to be a low grade tumour and as it is in an awful location for surgery, ‘watch and wait’ is the recommended approach. 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 – opthomologist, endocrinologist etc. Mel and Pete request a second opinion from Great Ormond Street, which also confirms watch and wait approach.
OH – IT’S A HIGH GRADE, VERY AGGRESSIVE, CANCEROUS BRAIN TUMOUR AND BRAIN SURGERY #1
• Eloise’s symptoms worsen over Christmas. Eloise has up to 20 partial focal seizures a day despite meds. Eloise starts falling over. Neurosurgeon brings forward next MRI.
• 27th January 2nd MRI. We didn’t leave the hospital (St George’s). 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.
• 36 hours later, Eloise has surgery (#1 brain surgery) to relieve the pressure (via an ETV). A biopsy of the tumour is also done (we had no option, we needed to know what the tumour was, as it was clearly not low grade!) and the neurousugeons insert a Rickham reservoir. Surgery went well, but following the surgery Eloise has major uncontrolled seizures (the Doctors struggled to get them under control) due to trapped air on the brain – leading to an intensive care admission and a week in hospital.
• February – tumour biopsy confirms ETMR brain tumour. A very, very rare, highly aggressive cancerous brain tumour with a dismal prognosis. We were given 10 – max 20% survival chance…. And the average survival is 9-12 months. Added to which, Eloise’s tumour is in the riskiest part of the brain to operate and neurosurgeons are unlikely to be able to remove it.
• Chemotherapy is recommended, to try and shrink tumour away from the risky area of the brain – so that surgery is more possible.
CHEMO ROUND 1
• February, following a small surgery to insert hickman line, Eloise starts Round 1 of 6 months of chemotherapy at the Royal Marsden hospital – 5 drugs intravenously (Headstart II protocol). This is the first of her very long (multi-week) hospital stays. Intense chemo regimes are horrible….hair loss, sickness, NG lines etc.
BRAIN SURGERY #2 TO REMOVE TUMOUR
• We (Pete and Mel) start researching ETMR’s and realise that based on the limited evidence on ETMR’s, for Eloise to have any chance, she needs surgery to remove the tumour – and to get it all out and to then do focal radiotherapy (ideally proton). After liaising with our oncologist at the Marsden, we get in touch with the leading ETMR experts in Canada and the USA, and with a UK ETMR parent we found on FaceBook.
Following their advice we request a second opinion from leading paediatric neurosurgeon Conor Mallucci in Liverpool. Mr Mallucci says, he might just be able to get it out BUT in his words, the surgery is right at the limit of neurosurgery, and there are likely to be significant side effects (such as sight, mobility and more)….but we have no option (we since realise he’s a bit famous and is often doing complex surgeries in the brainstem/midline area that others can’t). The MRI in March also shows Round 1 of chemo hasn’t worked/done anything!
• Rush to Liverpool for Eloise to have surgery by Conor Mallucci to attempt to remove the tumour. Brain surgery at Alder Hey on 16th March – miraculously the tumour is removed and termed a Gross Total Resection! And Eloise has no obvious long term side effects.
And, folllowing surgery….
Her partial-focal seizures suddenly stop. Literally a miracle.
BRAIN SURGERY #3 TO INSERT SHUNT
• Surgery #2 causes further hydrocephalus and Eloise’s recovery goes downhill. Eloise needs another brain surgery (#3) to insert a shunt (23rd March) which is done at Alder Hey.
As ETMR’s are so aggressive and despite all the treatments and surgery to remove the tumour, the prognosis is so poor – everything needs to be thrown at the cancer, as most children relapse – and very quickly. Therefore Eloise quickly moved on to….
HIGH DOSE CHEMOTHERAPY WITH STEM-CELL TRANSPLANT
• April – Eloise is fast tracked to high-dose chemotherapy with stem cell transplant. Her stem cells are collected.
• Eloise has high-dose chemotherapy at the Royal Marsden hospital. She has a massive seizure and pulmonary arrest (most likely a reaction to the high dose chemo drug, Thiotepa). She’s taken into intensive care for a week. She makes it through, after a thorough set of tests on everything (MRIs, EEGs, etc). Her stem cell transplant still needs to go ahead, so is done in intensive care! Eloise continues her recovery from the high-dose and gets stronger again (and re-learns to walk again)!
PROTON BEAM THERAPY
• May – Eloise is accepted for Proton Beam therapy in Manchester. As far as we understand, she is the first under 3year old ETMR patient to be accepted on the NHS (they normally don’t do radiotherapy in under-3s), and possibly the first ETMR patient of any age. Eloise goes up for proton planning in Manchester. 26th May Eloise starts 6 weeks of proton beam therapy at the Christie Centre in Manchester – 30 sessions, under general anaesthetic each day.
• June– Eloise continues proton beam therapy. 6th July Eloise rings the bell to mark the end of her proton beam therapy.
MAINTENANCE CHEMOTHERAPY TREATMENT
• Mel and Pete explore explore options for long term maintenance treatment to increase Eloise’s chance of survival and attempt to prevent relapse – at the advice of the global ETMR experts.…
• The proposed treatment (intrathecal topotecan, alongside accompanying agents for 12+ months) has never been done in the UK.
• Eloise is accepted for treatment abroad (Barcelona and North Carolina) whilst the tireless and dedicated Oncologists at the Royal Marsden put together a case for Eloise to be the first to receive it on the NHS.
• Amazingly, Eloise is approved by both the Intrathecal and Drugs & Theraputics Committees to receive treatment in the UK, at the Royal Marsden.
• July – Prior to receiving the first cycle of maintenance chemotherapy Eloise has an MRI to see the impact of all her treatments to date and is declared in ‘complete remission’ and there is no evidence of disease (NED). Hallelujah!
• Eloise’s will continue to have regular MRI’s – her next MRI is in early November 2021.
• The majority of ETMR patients relapse within a 2 year timeframe. If Eloise is still NED by summer 2023, statistically she will be in a good place to say that she has ‘beaten’ cancer. Please keep praying.
• August – Eloise starts maintenance chemotherapy (Cycle #1 or 12). She is currently having monthly intrathecal topotecan (ie direct into the brain and spine) and taking 2 oral chemotherapy agents daily.
• November – Eloise gets several infections, including one in her Hickman line – which has to be removed. Eloise scans continue to show NED! Amazing!
• December – Eloise has a port inserted, in place of her infected Hickman line.
. January – We reduce the dose of one of the maintenance chemo drugs (Sodium Valporate) due to the adverse side effects it is having on Eloise.
• February – Eloise’s MRI scans continue to show NED! Fantastic news.
• May – Eloise’s scans shows NED! Amazing!
• June – Eloise turns 3!
• August – A big month. Eloise has her NG tube removed and completes maintenance chemotherapy and her post-treatment MRI scan shows NED!
Eloise Zoe 