Update 16th Jan 2021

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 appointments and tests to be progressed.  Despite neurosurgeons thinking the seizures not being linked to the tumour, she continues to think they are – noting that Eloise isn’t a classic case (but Eloise hasn’t been throughout this whole situation). 

Unfortunately Eloise’s seizures don’t seem to be improving much.  She is also now going to be referred to a neurologist to look at this (alongside her broader situation) and she is likely going to need to try an alternative medication.  Her shaking/ trembling/unsteady on her feet seems to be worsening and particularly bad after waking in the morning or after a nap – and interfering with her playing etc quite a bit.

We have another appointment booked with the neurosurgeon on Monday the 25th January.  We also now have an endocrine specialist appointment on the same day (at St George’s).  We are still waiting to hear when the ophthalmologist appointment will be.

We also have her Brain and Spine MRI (by general anaesthetic) booked for Wednesday 17th February.  We are really pleased this has been booked in, as this scan is crucial in determining the current growth of the tumour and to see if there are any changes.

How do we feel?

  • Gutted that Eloise’s seizure medication hasn’t helped.  We really need it to start working and/or the alternative medication to work.…
  • Relieved that the MRI has been booked and other appointments have been made.
  • Anxious as we still don’t have a ‘prognosis’ as there are still so many unknown parts of the jigsaw.

For those that pray

  • Prayers that Eloise’s seizures will stop/ the medication will work – and that the shaking/trembling will improve soon
  • That the appointments will all go ahead and not be delayed due to Covid

4 thoughts on “Update 16th Jan 2021

  1. Pete, Melissa…you are continually in our thoughts and prayers, and on the Knights Meadow Prayer Chain. I will update folk at tomorrows Zoom Service. The update helps us to focus our prayers on specific needs, eg seizure medication. Love to you both, Roger and Lauriex.

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  2. My heart hurts for Eloise and for you both as her tremors haven’t shown any decline. Praying that this maximum dose will begin to work and if another medication is needed that doctors on her case will have wisdom beyond their own to prescribe what’s best for her. May God move you closer to a diagnosis and ultimately healing if that is in His will. May God strengthen you and be near during this incredibly difficult time that is very hard for us to imagine. ❤️❤️🙏🏻🙏🏻

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  3. Continuing to pray, earnestly, day and night. We pray that the tumour will shrink to bring an end to the build up of water on her brain and the seizures – and so that surgery will not, when it comes to it, be necessary. So very proud of you all in how you are handling this nightmare. XX

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