Category Archives: Uncategorized

After posting yesterday’s blog we have been told that Eloise will now have surgery on Friday morning (around 8.30) and not today (Thursday). The procedure will also now involve a biopsy as well as an ETV – the whole procedure should take roughly an hour to an hour and half. The reason for the biopsyContinue reading “New surgery time for ETV and MRI reveals unexpected, aggressive tumour growth”

Eloise went in to St George’s Hospital to have her second MRI this morning. As a result of the MRI Eloise has been immediately admitted and will undergo surgery to have an ETV tomorrow morning. The Neurosurgeons and Radiologists are also going to meet to discuss potential surgery on the tumour. Please pray for: SuccessfulContinue reading “Eloise going for surgery”

So the last week has been quite challenging and upsetting.  Unfortunately Eloise’s trembling has worsened so much so that at times she is often struggling to walk and keeps tripping/stumbling or just falling straight on her knees. She has sometimes started scooting around furniture again.  After sending a video of Eloise trembling to the EpilepsyContinue reading “Hope and prayers this week needed”

This week we’ve been home-schooling Anna and trying to make a bit of progress on various appointments etc for Eloise. We had an appointment with the Epilepsy Consultant who has upped her current medication again to the max.  The Consultant was really understanding and does seem to be on our case in pushing for appointmentsContinue reading “Update 16th Jan 2021”

A quick little update We’ve received the second opinion from Great Ormond Street Hospital (GOSH).  In general their recommendation supports the overall approach taken by St George’s Hospital, but adds a few things to note: It is more cautious and recommends an earlier MRI scan (2-3 months i.e. end Jan to Feb) to monitor theContinue reading “A quick little update”

Quick update for people who have kindly asked how Eloise is doing and if we have heard back from Great Ormond Street. Eloise continues to do amazingly well developmentally (her language is exceptional) but is unfortunately still having a high (10+) and increasing number of seizures a day – which is disappointing as we wereContinue reading “No news”

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 beenContinue reading “Another day, another prayer request: Prayer request for Great Ormond Street’s opinion”

A long – a very long, road ahead. Its taken us a while to know how to write this blog… Yesterday Eloise had blood tests (for biomarkers) and we met with a Neurosurgeon at St George’s in Tooting.  We previously understood that either a biopsy or surgery were going to be discussed. To be honest,Continue reading “A long – very long road ahead”

After being rushed in to be informed of Eloise’s diagnosis and then told things would move fast (“days and not weeks”) things now feel relatively slow going (which is probably not that surprising as even a day feels quite a stretch at the moment).  Eloise has started on anti-epileptic drugs (AEDs) – which have slottedContinue reading “The waiting game”

Firstly apologies this post is very, very long – we don’t anticipate future posts to be so long, and sometimes we might just post one line.  So where are we? Background As some of you know, over the past few months our daughter, Eloise (17 months – born 6 June 2019) has been experiencing oddContinue reading “Where to begin…”