It’s been a while since we last sent out an update.
Since then Eloise has settled into nursery really well, with the excellent care of all the Rydes Hill school family, her teachers and from her 1:1 support.
Eloise has started to develop some genuine friendships and is especially enjoying ballet on a Wednesday morning. Her energy is returning, she is slowly developing her language and her eating has drastically improved. It’s been wonderful to see Eloise’s love for people, her humour, and her zest for life return – it can be quite infectious. She’s a funny girl and likes to be the life and soul of the group.
Like many nursery children – Eloise has picked up a seasonal cold. She picked this up in her second session at nursery. However, unlike other children, Eloise hasn’t really shaken it off fully and transitions between varying degrees of cough, snot and chesty splutters.
At the same time we have started to very slowly wean Eloise off one of her chemo drugs, Sodium Valporate (it’s used for various things but Eloise has it at a super high dose for chemo purposes). The plan was to do this slowly over a number of months until she is completely off it in early January.
We think Eloise’s development has been hampered by this drug (which makes you very drowzy and gives you “brain fog”) and we were really looking forward to her reducing and stopping this drug. In general Eloise has been doing really well since the start of term and the reduction so far in sodium Valporate.
Last Friday Eloise had an odd moment when she lay down on her side and jolted very briefly. Then on Sunday Eloise was extremely wiped and spiked a temperature of over 38 – which meant a day and overnight stay in the Royal Surrey Hospital to have a range of tests to determine the source of infection. After a number of tests (mostly to exclude some serious infections) it was assumed that Eloise had a cold and was discharged with some antibiotics.
Eloise rebounded quite strongly and went back to nursery on Wednesday. However on Friday, nursery phoned us to let us know that Eloise had just had another likely seizure (Eloise’s 1:1 is an ex-Paedatric nurse) – which was shortly followed by another seizure a few minutes later. (Eloise is currently on an exceptionally high level of anti-epileptic drugs already…)
After an afternoon of phone calls, it was agreed Eloise next MRI would be brought forward and we agreed to be vigilant and go into hospital for a CT scan in the event of another episode (to check it isn’t hydrocephalus).
This morning, Eloise had another short seizure. We are currently in hospital waiting for a CT scan. Please pray that we can get to the bottom of what is causing these new seizures, that it is something we can treat and isn’t serious. Please also pray that Eloise doesn’t get too distressed by these episodes and they don’t knock her recent improvements.
How do we feel:
- It has been utterly wonderful to see how well Eloise has been doing this past 6 weeks. She has been doing so much better and we are so proud of her.
- The seizures have been quite traumatic. Not knowing the cause (yet) is a hard space to be in. And not knowing if they will continue or not is also difficult. It also brought back lots of memories too. It’s also reminded us that this continues to be a battle and that even 2 years on, life isn’t simple – it’s unpredictable, and that there might still be bumps in the road. We hope this is just a little bump, and that somehow this isn’t a longer term issue.
For those that pray:
- Pray for us to get to the bottom of this – that it’s nothing serious (certainly not any tumour!). Pray it’s short lived and can be dealt with.
- Pray for peace for us. It’s been very disappointing and distressing.
- Pray for Anna – she witnessed the episode this morning and said in her own words that Eloise was having a ‘moment’ (she remembers her previous seizures which we called ‘moments’). Pray it doesn’t trigger stuff for her and make her worried/anxious.