Give thanks – Superstar Eloise and Round 3 tomorrow

Eloise is the best she has been in 2021!  Her language is coming on, her character is coming out and she’s getting physically stronger.  She’s a very sweet girl, with a great sense of humour, and is very much an extrovert that assumes everyone will want to play with her. Her smile and laughter are returning.

Eloise has loved having Kobe, has been enjoying some playdates, has been to the beach with Nanna V and Grandpa Ross and has even been to an outside toddler group (Toddler Time at Rydes Hill School, who have been wonderful to ensure the group meets outside and also highlight to parents that Eloise is coming and needs to avoid children who are ill/have a cold.  We have been so blessed by this and feel utterly humbled by their kindness!). 

It has been so special to see Eloise do ‘normal things’ and we are grateful to so many people who go above and beyond to bring a bit of joy and normality for our girl.  It feels like after a year of torment, we are finally getting some of our determined, sprightly young girl back. And her hair is starting to grow back too – including in the 3 proton ring areas where the 3 proton beams went in.

None of this was a given.  Even her hair re-growth – the proton oncologist specifically asked the physicists to work on the beams again at the last minute in order for there to be 3 beams and not 2 – for the sole purpose of trying to increase the chances of Eloise’s hair re-growth in those areas. 

Intrathecal chemo tomorrow

Tomorrow morning Eloise will have her 3^rd Intrathecal Chemo at the Royal Marsden – via a lumbar puncture under General Anaesethic.  They will also test for a few other things via the lumbar puncture.  She will be nil by mouth again and will most likely be poorly and weak for a few days.

How do we feel?

• Grateful, and at times even emotional, seeing our girl do ‘normal’ things and enjoy life.  Despite the trauma and pain, it feels like it’s made the last few months of horrendous decisions and treatment worthwhile – to just see Eloise start to shine again.  But we know that we are in a minority for ETMR parents and feel so blessed.
• So proud of our girls.  They really are fantastic and are both really starting to actually enjoy life more. 
• Anxious about whether Eloise’s outward strength and improvement reflects the inward.  Unfortunately we know that appearances don’t necessarily reflect what’s really happening with regards to the cancer reappearing (in the same place, or in other places in the brain/spine).  Eloise’s next MRI is on 1^st November, which will actually be nearer 4 months from her last one…..that’s a very long time when ETMRs are so aggressive and deadly.
• Still feeling like we live on a completely different planet to most people!  This specific blog post doesn’t outline some of the reality and ‘other side of our life’ of living with a toddler fighting brain cancer – but for now we celebrate where Eloise is (knowing that tomorrows chemo will also set her back a bit and make her poorly!).  And if you ever want to ask us about what its really like (more than we write in this blog) – do just ask….it really is a parallel universe some of the time!  Challenges we didn’t even know were challenges, are daily challenges.

For those that pray

• Give thanks that Eloise is becoming more of herself again – actually doing ‘toddler things’, playing and not just surviving.  Give thanks that we are seeing her smile – especially as so many of you have prayed for this.
• Pray for the intrathecal chemo tomorrow – pray for the GA and procedure, for no infections, temperature spikes, unexpected side effects and for her to tolerate it well.  Pray it obliterates any remaining cancer cells.
• Pray for Pete and Mel as we have another month running up-to her next MRI.  Pray we can be peaceful despite any underlying anxieties and fear.
• Pray for protection for Eloise!  Pray for her to defy the ETMR odds and to remain with No Evidence for Disease for years to come. Pray she lives up to her name  and continues to ‘fight for life in all its fullness for herself and many others!’