A quick little update

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 the tumours size to ascertain the growth potential.  There are some concerns that it appears ‘cellular’ from her first scan – we are trying not to worry about this, and hold onto it still ‘most likely being low-grade’.  They recommend discussing the risks of doing a biopsy once we have the information from the next MRI scan.
• They agree and think the seizures aren’t currently being caused by the tumour.

Eloise’s seizure medication by the Epilepsy Consultant has been increased but unfortunately doesn’t seem to be having much affect.  She is still having 10+ seizures a day and is sometimes trembling and unsteady on her feet for parts of the day.

How do we feel?

• We are trying to just keep going through ‘the process’ and actually not think too much! We still have to see the endocrine specialist and ophthalmologist and some other tests might shed some further light on the situation.  Someone advised us not to try and work it all out from the first scan – as things are so complicated, and we still have lots of pieces of the jigsaw to put together.  We are still just at the start…
• We are trying not to worry and hold onto the tumour being ‘most likely’ low-grade.
• Disappointed that Eloise’s seizures aren’t improving yet, but hoping that at some point they will…
• Not sure how the new lockdown will work – a school closure for Anna, further pressure on the NHS/hospitals (A video of St George’s Hospital was on the BBC today – saying that some cancer treatments were being stopped due to Covid) , and Eloise unable to join her new childminder as we don’t think we can leave her with a new childminder when her seizures are so frequent and according to her care plan we are meant to call 999 if she has a cluster of seizures (which the day before yesterday we were close to doing again…).

As I’m sure most of us still do – I keep thinking if you had told me in January 2020, our current situation (in its entirety), I could not have even imagined where we are now in my wildest imagination…

For those that pray

• For Eloise’s seizures and trembling to improve
• For strength to homeschool and survive lockdown, whilst looking after and caring for Eloise and juggle all the appointments etc.
• For wisdom to know to manage work/working in this situation.
• For us to stay positive, provide a calm and fun home environment and manage to keep smiling

Also a massive thank you for kind messages etc – sorry if we haven’t responded. But please know we really, really appreciate receiving them even if we don’t manage to reply.

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