Setbacks but praying Eloise now gets stronger

The last few days have been pretty full-on.  Eloise ended up going into St Georges on Sunday afternoon, ready for minor surgery to remove her hickman line on Monday.  Unfortunately, as Eloise was on the emergency list for theatre, and needed to just go when a slot was free, she didn’t actually go to theatre until 7pm.  So she had the whole day waiting in an isolation room being nil by mouth (including her NG feed).  Even for a toddler who doesn’t want to eat much/only nibbles at best – that is hard.

But the surgery went well.  Her hickman line has been removed due to the infection.  We are waiting for cultures to see if it entered her bloodstream but we are really hoping we have caught it in time…   Eloise now has a ‘midline’ bandaged up on her arm, which will be used in the short term until a new hickman line/port is put in (another GA/minor op).  She was rather surprised this time to wake up from her ‘magic sleep’ to her wiggly line (ie hickman line) having disappeared.

Eloise eventually came home from St Georges today and is pretty weak.  She’s the weakest she’s been for a long while.  Shunt adjustment + chest infection + infection in her hickman line and minor op over the last 9 days means she’s very tired, wobbly on her feet.  Unfortunately her appetite is exceptionally low again and she doesn’t want to do much at all, and she still can’t have calpol/ibuprofen for any relief.  We are praying she can push through and that she just needs to build up strength and nothing else is going on – as most Dr’s and nurses say ‘it’s hard to tell as she has such a lot going on!’.

In light of the above, it’s been decided that Eloise’s intrathecal chemo should be delayed until next Monday (6^th) so she can build up her strength before another round of chemo (it was scheduled for tomorrow).  We would be grateful if you could pray that Eloise quickly improves over the coming days so that she is strong enough for Monday.

How do we feel?

A little cream crackered! Isolation rooms on hospital wards are pretty hard places to be with a toddler – not being able to leave, but trying to get Eloise to do something so she doesn’t ‘weaken’ too much and lose too much muscle strength.  And lack of sleep due to Eloise being poorly in the night and/or all the hospital observations and toing and froing is still quite exhausting.  But we’ve made it through the last week and a half…  Eloise has just gone through, and continues to go through, so much!

It’s been over a year since we found out Eloise has a brain tumour (found out 25^th Nov 2020 – we actually had to look up the precise date as much of the year has become a blur!).  What a year.  Lots of reflections…too many to write here!  For those that haven’t always followed the story, this page gives a summary of the journey so far.

The past week has also been a bit of a ‘wake-up call’ again about how fragile our girl still is.  A chest infection is really quite serious for her and the implications are quite wide.  It’s hard for us as we continue to face a winter of ‘keeping her safe’ whilst trying to have some normality and opportunity to interact with others – especially other children.

Despite the setbacks and challenges of the past week and a half, we continue to try to keep the bigger picture in mind – that on the bigger cancer front, Eloise, at the last scan, is winning. She just needs to keep winning the smaller (more minor, but sometimes still potentially serious) battles too.  Keep fighting our darling Fighter for Life in Abundance.

For those that pray:

• Pray for Eloise to get stronger quickly!  Pray that there are no other issues going on and that its just a matter of getting stronger.  Pray against further infection or any other ‘set backs’.  Pray her appetite increases again and that she puts on weight.
• Pray that she continues to be NED.  Its still a terrifying prospect of her relapsing – pray this amazingly never happens.
• Pray for us as we approach the next few weeks – balancing some low-key Christmas fun, with a poorly child and one prone to serious infection.  Pray for wisdom and lots of fun.  Pray Eloise has more energy and smiles more than she has been.