Full days

We’ve failed to write an update for a while – it’s been busy! Thank you for the continued prayers and messages, we are very grateful. Eloise has been doing (relatively) really well. She tolerated the intrathecal chemo well.

She’s had a busy and exciting few weeks, for which we are really grateful. The last few weeks have included a varied collection of things:

• A day trip to Peppa Pig World for her delayed birthday treat. She ADORED it and was in the best part of her cycle. From her engagement and enjoyment, we think it was probably the best day of her life so far. What a blessing!
• Appointments, appointments, appointments… OT, epilepsy consultant, usual nurses etc. The great news is that Eloise’s possible absence moments might just be fatigue-related (from treatment) and not absence seizures. Please pray this is the case!
• Using the potty! As soon as Eloise was brought the ‘fancy potty’s’ from her OT she was determined to use them (whether we wanted her to or not 😂). And so she has – she’s done so well too! She’s certainly showed her determined streak and it feels quite a big milestone. What a hero you are Eloise! On chemo and still mastering a new skill like that.
• Pete returning from Kenya. Others of us in the house being poorly… but are now fortunately better. Eloise seemed ok.
• Anna’s celebrating her 6th birthday with a bouncy castle birthday party with her (20+) friends! Eloise joined in too.
• Eloise also participated in the toddler race at Anna’s school sports day. Again, Eloise wanted to! She is determined to take part in things, even if her body isn’t as able/energetic as others.
• Lots of preparation for starting nursery in September. Eloise will now proudly tell you she’s going to Rydes Hill nursery! We have been blown away by their support and help to get everything in place for Eloise to be able to start. It’s a huge amount of work and we are so grateful!
• Proudly taking Kobe into Anna’s school for wellbeing week.

Unfortunately today Eloise is a little more poorly and spiked a temperature, leading to an admission into the Royal Surrey Hospital for further tests and checks. It has been several months since we last had to go in for an infection/temperature visit – but perhaps a little inevitable after a few more socially active weeks, with higher infection rates floating around. We are back home with antibiotics whilst awaiting blood cultures and results. Please pray that Eloise starts to feel better soon and is well enough to have her final intrathecal chemo on Friday (at the moment this seems a little questionable). We are hoping to be able to count down the final few weeks/days of active treatment!

It is astonishing that Eloise has nearly completed 12 months of maintenance chemo and remains in remission at the last scan. It is no understatement to declare this a wonderful miracle. Eloise still has a number of challenges and issues to contend with but the mere fact that she is still with us is remarkable. We don’t ever take this (or our time with Eloise, or Anna) for granted, we are truly grateful, humbled and just a little bit emotionally shattered.

Please do join us in celebrating this miracle and give thanks for all the answered prayers over the past (nearly) 2 years, since we first walked into a hospital.

Eloise will have her next MRI on August 1st, after her active treatment has (just about) finished, alongside the results from her detailed eye exam. We will update you again once we know the next steps on the road ahead.

Some pictures of Eloise enjoying Peppa Pig World for her birthday…