For those that pray we would appreciate prayers for Eloise and for the team at Great Ormond Street Hospital who are meeting tomorrow to discuss Eloise’s case and provide a second opinion on their diagnosis and treatment options.
- Eloise has unfortunately been continuing to have seizures and in the last few days has also been trembling and has been slightly unsteady on her feet, even when she is not having a seizure.
- Eloise started taking anti-epileptic drugs (AEDs) a few weeks ago (it has taken 3 weeks to bring the dose up, in steps, to the recommended dose).
- Eloise’s seizures have levelled off but are now plateauing around ~10 a day
- That said, today Eloise (& Mel) ended up being admitted into hospital following a ‘cluster of seizures’ and additional trembling (she had 4 in half an hour, with persistent trembling/shaking between) – she totalled 16 seizures today. A long story short, Eloise was sent home as she needs to wait to see a consultant – who wasn’t available – only after some lovely Drs and Nurses were very helpful and supportive.
- We had another appointment today with the Neurosurgeon from St George’s who reiterated that surgery is fraught with risk and doesn’t think we should to a biopsy/surgery at this stage and that ‘watching and waiting’ was the recommended approach until the next MRI in Feb.
Second opinion from GOSH:
- We have asked for a second opinion from Great Ormond Street Hospital (GOSH) both for prudence and to get their thoughts on whether there is a link between the seizures and the brain tumour – as we have been presented with two different schools of thoughts on this so far.
- GOSH’s Neurology Team are meeting tomorrow (22nd) morning to discuss Eloise’s case.
- We were due to meet with a Neuro-Oncologist from GOSH on the 4th Jan to discuss the outcome of their meeting but the meeting has now unfortunately been cancelled due to Tier 4 restrictions. (GOSH will now send a written report to the Neurosurgeon at St George’s – our main hospital).
Please pray for:
- GOSH’s MDT to come back with a clear recommended plan and a clear opinion on whether there is link between Eloise’s seizures and the brain tumour
- That we would feel peaceful with the agreed (St George’s and GOSH) treatment plan
- For the reduction and complete stopping of all seizures and trembling
- For continued resilience as us as a family – with Tier 4 restrictions and other family challenges it’s feeling pretty exhausting (e.g. Mel’s Grandpa has been in hospital and her Step-Grandmother passed away 2 weeks ago, it feels quite rough going)
How do we feel:
- Grateful – that we have access to amazing world-class medical care at St George’s and GOSH (Eloise also has referrals on to very specialised Neuro-Paediatric Eye and Endocrine specialists)
- Exhausted – watching Eloise continuing to have seizures (and seeing little improvement), trying to navigate a new medical world, being continuously told that this ‘will be a long road’ (e.g. 10 years) and having to emotionally come terms with not only having a daughter with a brain tumour but, in essence, a long-term “illness” is pretty waring (and that’s before Covid/Restriction changes..!)
- Frustrated – That Eloise’s seizures are not decreasing/getting under control and that (at times) some of the admin systems/processes in the NHS have been less than ideal. Frustrated that Eloise’s tumour is in such an unusual place for a brain tumour – making surgery even more complicated and fraught with risk, making decisions about treatment/next steps even more challenging.