The start of the new school year has gone wonderfully smoothly; Anna has settled extremely well in her new school and is loving being at the same school as Eloise. Eloise is enjoying seeing all her friends again and continues to make progress in her learning and development. Her energy levels have significantly improved since a handful of months ago and her confidence is growing. 

She’s enjoying ballet at school (and sometimes insists on teaching us ballet which involves us dancing around the kitchen), going to church and just her little life.  It’s lovely to see her social, comical and determined character come through.  What a delight and privilege it is to see children grow up and develop.

Eloise continues to have lots of appointments and support, both within nursery and at home.  One new highlight is that Eloise has just got accepted into the local Riding for the Disabled (RDA) group, and wow, did she love it!  Her confidence and natural ability shone through and it looks like she is hooked.  The RDA were so incredibly welcoming, treating her with such dignity, respect and just ‘getting her’ and speaking to her at her level, helping Eloise to come out of herself and feel confident.  She jumped on the horse and loved every minute, and didn’t want to leave. These moments are so special and hard to quantify.  Living with the impacts and complications of Eloise having had a rare brain tumour can make for a very lonely journey, at times. Therefore, when we have experiences (like the RDA) where people ‘get’ Eloise it just makes such a difference to how she and we all feel.

Over the next few weeks, Eloise has lots of appointments – most critically next Monday (9^th October) Eloise has both her MRI and CT scans.  The MRI is a routine monitoring scan, but the CT scan is additional this time to better assess the lesion in the brainstem (thought to be calcification) that has been seen on previous scans and last time was seen to ‘be brighter/have changed’. We will have follow up neurosurgeon and oncology appointments to discuss the scan results.  In addition Eloise has an endocrinology appointment at the Marsden next Wednesday (11^th October) during which it is expected that we will discuss whether Eloise needs to start additional treatment such as growth hormone. 

How do we feel?

Most days we feel utterly privileged to see Eloise and Anna grow up and delight in Eloise’s improvements.   She really is a lovely, kind and sweet girl.

Other days we become more aware of some of her challenges.  When Eloise is slightly under the weather/poorly or tired her challenges become more acute.  The recent neuro assessment in Manchester highlights that on many, many levels Eloise is doing great, but there are challenges, such as with visual perception/processing. 

We feel relatively peaceful about the scans next week at this point, but know that the next few weeks might be a little tense as we await results etc.  It’s never easy to think that despite everything she’s been through, there is a ‘lesion’ in Eloise’s brain – which raises lots of unknowns and uncertainties as nothing can be done about it (as far as we know at this stage).  But clinically Eloise is doing well so we remain relatively peaceful, and we think back to the remarkable miracles that have taken place to get Eloise to where she is now.  We pray that the God that has been with us and her throughout this journey, continues to be.

For those that pray:

• Please pray for the MRI and CT next Monday.  Pray for Eloise going under general anaesethic again (she’s on the list for near lunchtime so it will be a long morning!).  Pray for the results – that there is No Evidence of Disease (!), no hydrocephalus and nothing else alarming.  Pray against any seizures following the general anaesethic (as has happened before).
• Pray that the lesion has remained stable or disappeared and/or that we get clarity that it is nothing to worry about/ problematic going forward (this feels quite a big ask…).
• Pray for peace for us and both girls.  Stress levels often rise around scan time, so please pray for calm and peace in our household.
• Pray for Eloise’s endocrinology.  Pray for wisdom around the growth hormone decision.
• Pray for Eloise’s continued health and development.  Pray for her seizures to be non-existent (we haven’t seen any for months!), her speech, strength, mobility, processing speed, visual processing all to improve.  Pray for God to restore her body and brain.  Pray that she will be proud of who she is and for the miracles already done in her life.