Chickenpox, MRI, nursery planning…

The last few weeks have been full!

Over the Easter holidays (following Eloise’s intrathecal chemo) we had a lovely few days at Mel’s Mum and Ross’s and then the Easter weekend at a holiday cabin near Lymington, Dorset – thanks to an amazing charity, Momentum.  We had a great few days enjoying the weather and beach hut, but unfortunately on Easter Sunday Anna developed chickenpox.  She had it exceptionally mildly (she’d actually had the chickenpox vaccine!), but it led to Anna being off school and Eloise being put on oral antivirals for two weeks in an attempt to prevent Eloise getting chickenpox/getting it too seriously.  If Eloise gets a spot – it’s straight into hospital for approximately a week of IV antivirals.   What, for most parents is a pain and rite of passage (chickenpox), unfortunately is a serious issue for children with cancer.  So far Eloise appears to have remained clear – she’s not out of the woods quite yet, but so far so good.

We’ve also been exploring options for Eloise to attend nursery in September.  Eloise will need significant support in order to attend, but this feels like a massive milestone to be even thinking about.  Statistically she wasn’t meant to get to this point – but here we are, exploring options for her to start a nursery.  She really is remarkable!  Thank you God.

That said, we’ve realised selecting a nursery for Eloise is a whole different ball-game to sending a ‘more typical child’ to nursery – it’s a lot more complex.  We (Pete and Mel) have learnt so much this year about things we had very little knowledge of before – brain tumours, paediatric cancer and its treatment and side effects, acquired brain injuries, sensory issues, physio challenges etc. We now have the education system and how it supports children with complex needs to add to the list.  We would be grateful for prayers as we learn and navigate the SEND education system and as more concrete plans are put in place with the local authority, nursery, Eloise’s health professionals and ourselves. 

Thank you to those of you who also prayed for our dog Kobe – he was very poorly (we will save you the details!) but he pulled through and is now back to full health. It still seems odd we asked for prayer for our dog, but he’s been one of the really positive things from the past year and we are really grateful he’s ok.  Kobe continues to bring the girls many smiles and is also an excellent companion in many of Eloise’s home appointments. 

Eloise will finish her 9^th round of chemo on Tuesday.  She’s continued to find the second half of the cycle (i.e. now – when she’s on the additional drug) much harder.  Overall she is improving though – albeit very slowly.  She is a little legend for soldiering on.

On Wednesday (4^th May) Eloise will have her next MRI.  We probably don’t need to reiterate how important this is – we need it to stay clear, as so little can be done if it shows any sign of relapse.  So please, please pray Eloise’s scan shows that she remains with No Evidence of Disease (NED).  Assuming she remains NED, she will then start round 10 of maintenance chemo on Wednesday 11^th May.

How do we feel?

With all the above, a little frazzled.  Eloise has had a lot of appointments, work has been full for Pete and our head has been in lots of different places.  Anxiety before her scan continues.

For those that pray

• Pray Eloise’s MRI scan shows No Evidence of Disease!
• Give thanks that Eloise continues to slowly get stronger.  Give thanks for her resilience and for God’s work in her life.
• Pray for the logistics as she goes for the MRI scan – being nil by mouth, having the GA, getting Covid swabs on Sunday etc.
• Pray as she finishes this round of chemo – most importantly that she avoids chickenpox and doesn’t pick up any other infection that sets her back.
• Give thanks that Anna continues to enjoy life and has recently learned to swim and that Kobe has returned to full health.
• Give thanks for the generous and continued support of many, with special thanks to Momentum for a nice Easter weekend away
• Pray for wisdom and favour as plans are made for Eloise to attend nursery with the right support and environment.