Update on Eloise – Friday 19th March

Eloise is still in HDU but is planned to move to the recovery ward later today. Overall she is doing really well – she’s eaten some food (so shows she can swallow), is talking and her limbs can respond. Her eyes, on first appearance look ok and she can see things near and far away. From first appearances it doesn’t look like she has any obvious big long term side effects of surgery! Amazing!

She’s clearly in quite a bit of pain, but doesn’t really complain too much. She’s unfortunately been sick a few times and is very weak. But overall all the staff say she’s doing really well – when we think of the major surgery she has just had.

Our wonderful oncologist at the Marsden (Dr Sucheta Vaidya) and a whole team of experts across the world are working out next steps in terms of Eloise’s treatment. As ETMRs are so aggressive, Eloise will definitely need intense future treatment – the few ETMR survivors have generally had a Gross Total Resection (yay, Eloise has managed to have this!!), high dose chemo and focal radiotherapy/proton therapy…. and these 3 factors increase her chances of surviving. The MDT at the Marsden are today discussing Eloise’s case and we wait to hear next steps. We will update the blog in due course, once we have heard the agreed plan.

We continue to be exceptionally grateful for a successful surgery and the amazing experts working on Eloise’s case.

For those that pray:

• Pray for Eloise’s recovery from surgery. For her to stop being sick and to keep some calories down (via food and her NG tube). Pray she doesn’t develop hydrocephalus again (a risk from her surgery, which if it does, will occur over next few days). Pray against any seizures.
• Pray for the all the experts making decisions about next steps. Please pray that they are unanimous about the best approach and that Eloise can get the right treatment.
• For us all. All the options will require several months of hospital stays/admissions and Eloise will most likely be very poorly for a long while. The journey ahead is very long and we need renewed strength to keep going every day, and for Anna to be resilient despite always having one/both of us and Eloise in hospital.

As part of our journey we have met/connected with a number of hugely helpful, inspirational and caring families- many of whom are also going through their own challenges and tough journeys of having a child with cancer. We are indebted to many of them for giving us seasoned advice, connecting us with experts and for their support.

One family particularly close to our hearts are the Johnson family in Utah. Their daughter, Savannah, is a few weeks younger than Eloise and has also been diagnosed with an ETMR in a similar location and at the same time. You can follow Savannah’s story and progress on their blog. Please join us in also praying for Savannah and her family as our daughters bravely fight together.