Eloise enjoying dressing up with Anna
Overall, Eloise has had a relatively good couple of weeks. We’ve had some really helpful and encouraging meetings with professionals (epilepsy consultants, physios, speech and language therapists etc). Eloise still has a very long way to go and has many complex challenges, but we’ve felt encouraged and hope that some (not necessarily all) of these will improve in time – not necessarily in weeks or months, but over years once she finishes treatment. Fighting brain cancer is a relentlessly long game.
Eloise has been laughing a bit more, has had more energy and strength and her appetite has generally improved. We are thinking that some of her proton ‘somnolence’ is finally starting to wear off – but it’s very slow! Her tremors have reduced since reducing one of the chemo drugs which is really reassuring, and she’s become a little more steady on her feet. Eloise still struggles with car rides, light sensitivity, the cold weather (so she doesn’t enjoy the park at the moment!), bumpy buggy rides etc. As a result our activities are limited, particularly as we can’t do much due to her infection risk – but she is very slowly making progress. Eloise most of all enjoys playing with Anna, Kobe and other family members. Her progress can feel disappointingly slow at times, but when we think and look back, she is making small improvements. She’s an absolute hero to just get through each day.
Eloise’s MRI is due this Friday (4th February), first thing in the morning at St George’s Hospital. As many of you know, these scans are absolutely key. Eloise must remain NED (as our options, if she relapses, are very, very limited). With ETMR’s it feels incredibly binary. Eloise is then due to have her 7th round of maintenance chemo starting the week after (9th February).
Unfortunately Eloise has picked up another cold over the past few days (not Covid). We were quite concerned about this a few days ago and were worried it might delay things, but Eloise has been slightly better this weekend. Please pray this cold doesn’t prevent her MRI via general anaesthetic going ahead (the last chemo round was delayed because she had a cold, so they couldn’t give her the GA). Please pray the cold stays off her chest and clears up, that we continue to avoid Covid, and that Eloise is well enough to have the scan.
How do we feel?
We continue to feel a complete mixture of emotions – many are so hard to articulate. We recently came across the untranslatable Greek word, χαρμολύπη, which expresses the concept of joy intermingled with sorrow – which perhaps best sums up how we feel some of the time. We are unbelievably grateful for where Eloise has got to and the miracles that have been done (Joy), but also have a massive sense of ‘loss’ over what has been stolen from Eloise and the challenges she has to face each day and is likely to face in the future (Sorrow). We are naturally having a whole host of underlying emotions ahead of her scan, but at the moment are trying to stay positive and focus on what lies ahead each day.
For those that pray:
- Pray that Eloise’s cold rapidly improves so that her MRI can go ahead.
- Pray for all the practicalities related to the MRI – Covid swabs, being nil by mouth, having the GA, having the shunt re-set after the scan etc.
- Pray for us as a family as we await the scan and the results (we are likely to get them a few days later). Pray against tension and for us to be peaceful.
- Pray that her MRI shows she is that there is NO EVIDENCE OF DISEASE.
- Pray for any other aspects that the scan might show – the last scan showed low pressure and micro-haemorrhages. Pray that the scan shows nothing alarming or concerning. Pray the scan is helpful in adjusting Eloise’s shunt (if that’s what’s needed) and for wisdom for the neurosurgeons and team as they look at the scans and decide if anything needs doing/adjusting.
- Pray that Eloise continues to improve (and perhaps a little quicker than has happened over the past few months) and goes from strength to strength. Pray her tremors continue to improve and her overall development keeps moving forward.