Half-way through and BIG prayers needed for next steps!

Eloise is half-way through her proton beam therapy! She is doing so well and continues to enjoy being an outpatient and trips to the park in the afternoon. Most days she’s getting more accepting of being nil by mouth. She enjoyed time with Nanna V last week, and this week her other Nanna! Precious times.

Anna and Pete are at home but plan to come up at the weekend (after Pete finishes isolating). It will be lovely to be together again!

Every day we are so grateful for the treatment that Eloise has been given under the NHS. It really is astonishing and a testimony to how much we as a society value life. The love and care Eloise has received is outstanding.

We are currently in the process of working out next steps for Eloise’s treatment (maintenance chemotherapy for 12-18 months). This is getting a little more complicated as the drugs recommended by the ETMR experts in Canada and the USA are difficult/impossible to access in the UK. The evidence is sparse on the two key treatment options, but as relapse is so high/likely and the vast majority of the few ETMR survivors have had this treatment, the experts recommend Eloise having it – so we feel we must pursue it. The alternative is just monitoring Eloise – but sadly as so little can be done if Eloise does relapse, we feel we must keep pushing forward and try everything we can to prevent this.

At the moment we are therefore exploring all options (UK/NHS and private overseas) and are really grateful for having an amazing oncologist at the Marsden who is leaving no stone unturned and helping us to explore all of the options. There are a huge number of logistics that will make a lot of this tricky/impossible (!!) so we would value prayers that the path would be really clear – that the right treatment would be possible, and that logistics would be doable (whether in UK or overseas). We are going to need strength, stamina and a lot of miraculous open doors…

….And Eloise ideally needs this treatment starting between 2-6 weeks after proton (max 6!), so it’s only a handful of weeks to make the decisions and sort all the logistics/admin out. It’s another huge hurdle…

How do we feel?

• Mel is a little exhausted from the night NG feeds and disturbances, but apart from that is doing well.
• Missing each other!
• Trying to explore all options… and hoping that the right path will open up.

For those that pray:

• Pray for continued protection of Eloise’s brain from the proton therapy
• Pray for the proton treatment to work!
• Pray for wisdom and open doors for the next steps with regards to maintenance chemotherapy