Holding onto Hope for 2022

Eloise has had Christmas out of hospital! This has been a real treat and an answer to prayer. Thank you to those that prayed!  The girls have enjoyed seeing family at different points and have been thoroughly spoilt.

Eloise has been doing a bit better (than in early December) but to be honest it’s hard to tell. On the plus side, her appetite has improved significantly. Her energy levels are up and down and she needs quite a lot of ‘managing’ but we’ve had some special times and even trips out. Her tremors have possibly got worse (again it’s hard to tell exactly as it all becomes a blur) and her walking/unsteadiness is mixed. She appears to have had a chesty cold over the past few days (not covid), but no temperature as of yet – but without being able to take calpol etc it’s pretty rough for her on top of all the other things she is coping with each day!

Eloise has her next round of intrathecal chemo planned for this Wednesday – so we are gearing ourselves up for that, alongside starting back to work and school for Pete and Anna.

How do we feel?

• Grateful for Christmas all together!
  
• Unsure of how to think and feel! Eloise is doing ok in some ways, but not in others. We have absolutely no idea what to expect/benchmark her against anymore. We never know what is causing her issues – there are just so many variables. And we don’t know if any of these issues are a sign of something bigger (relapse) but we desperately hope they aren’t. And we don’t know what to expect in the future, both in terms of her health and development,  in the coming days, weeks, months or even years.  It’s very weird…
  
• Aware of a challenging 2022 ahead, especially for Eloise (let’s be honest, we can’t exactly make grand plans!). We pray that it will be less ‘dramatic’ and turbulent than 2021 and that it’s a year of Eloise building strength and health.  This feels like a slow burn, but we pray that by the end of 2022, that Eloise is still with us, that she is NED and that we can see how far she has come on.
  
• We are acutely aware that Eloise has such a high chance of relapse – and despite the best treatment in the world (proton/chemo/surgery), the vast majority of children still don’t survive.  It’s very weird as it can feel like a very unfair and cruel game of Russian roulette.  None of these children and families (many we now call friends) should have to go through any of this.  We pray for Eloise, but also for ALL families faced with this dreadful disease.

For those that pray:

• Pray that Eloise remains NED.  Please keep praying for this and praying against relapse.  We continue to live in the very real tension of holding on in faith for a miracle to be done in Eloise’s life and for her to survive and have life in abundance, whilst knowing the reality of the deadly cancer.  At the same time we also wish it didn’t require a miracle of defying the odds and for all ETMR patients to survive!
• Pray for Eloise to get stronger – for her tremors to reduce and stop, her balance to improve and her sensory issues to become less and less.
• Pray that Eloise recovers from this cold ahead of her next round of chemo on Wednesday.
• Pray for wisdom as we work out how to support Eloise’s development when so many ‘normal’ things for toddlers are off-limits.
• Pray for other families with children battling ETMRs and brain cancer.  Pray for greater knowledge about how to treat it – and for children worldwide to have access to this treatment!

Enjoying Christmas Day at home