Made it on holiday to Devon!

After a low-key few days where Eloise has been quite low energy, last night we made it to Appledore, Devon.

We are so grateful to be here. Thank you to Mel’s wonderful aunt and uncle for letting us use their place. It has a wonderful view, so even if we don’t manage to do much, we can see the estuary and boats and the girls love seeing the sea.

Eloise has had a bacterial infection all week, so that’s not been fun, in addition to her chemo side effects…. But she’s ok and seems to be getting marginally better. Most importantly she is pretty content. She still rarely complains about things.

We are also massively grateful to the Royal Marsden for organising shared care with the North Devon District hospital (so Eloise has open access if she needs it whilst on holiday), and also to the community nurses for doing two extra visits so we can go on holiday. Everyone has done what they can to enable us to get away for a few days. How kind of them all.

Eloise doesn’t actually know what a holiday is. Our last holiday was to Wales last July when she was just 13 months – so she won’t remember that. Every other long journey for her since then has been hospital/treatment related. But she has clearly got into the spirit and Anna has been explaining what ‘holidays are’. She clearly picked up the excitement and kept saying ‘holiday’ enthusiastically on the journey!

How do we feel?

So happy to have a family holiday all together – just for us. It’s quite emotional to think we’ve made it to a family holiday.

Feeling somewhat mad that we have come – 8 medications and types of chemo to administer multiple times a day (all needing preparing in different ways), NG feeds and lots of equipment, plus ‘keeping a distance from people’ so we can hopefully avoid any hospital trips. We hope all will be well this holiday and Eloise won’t need to go to hospital.

Grateful to Mel’s aunt and uncle for their place, and to all the medical staff that have made this holiday possible.

Sometimes I also wonder if this is our last/only holiday – will Eloise make another one?! We hope and pray that Eloise will continue to defy the odds and that we will have many happy family holidays for years to come. But we know that for us, we don’t know if we can expect that.

For those that pray:

• Give thanks we made it on holiday. What a blessing.
• Pray for protection against the range of things that could cause a hospital admission on holiday.
• Pray against relapse. Whilst Eloise’s last scan said she was NED we know that battling a grade 4 ETMR brain tumour is a long battle… We need miracle to continue for many years.