Successful shunt, growing stronger and wow – what a miracle

Eloise had her shunt surgery yesterday – the operation went smoothly. We are really grateful to all the staff here at Alder Hey for everything they have done to get Eloise through 2 operations and ensure she is looked after.

Since then, Eloise has turned a corner. She’s been sitting up for longer periods and has been eating well. We continue to give her a top up feed through her NG tube as she’s lost quite a bit of weight this past week and needs all the energy she can find to face the next step, but she’s doing much better. She continues to be quite weak and struggles to stand (let alone walk), but this appears to just be a strength/weakness issue rather than any neurological issue. It’s naturally sad to see Eloise like this (she walked at 10 months!), but we are grateful it’s only a strength issue.

All in all, we are unbelievably grateful that Eloise has had a Gross Total Resection (i.e. they removed all the tumour during surgery and there is no evidence of the tumour on her scans!) and she doesn’t appear to have obvious neurological side effects from the surgery.  We were told months ago (when the tumour was a lot, lot smaller ~8cm³ rather than ~30cm³) that Neurosurgeons were only likely to get some of the tumour out. So taking a step back, the fact that the neurosurgical team at Alder Hey managed to remove all of the tumour without Eloise having many of the possible (and/or expected) side effects, really is the most amazing answer to prayer. Wow.

Assuming Eloise continues to get stronger, we are hoping to be allowed home at some point over the next few days. It will be a long car journey, and with Eloise currently struggling to sit up for long periods (due to the pressure change in her head) this feels slightly daunting at the moment. Please pray she gets stronger, can sit for long periods and we feel comfortable driving her all the way back to Guildford. We would love for Eloise to be allowed out of hospital, to be able to see Anna and to get home for a few days before the next stage.

Next steps: the plan for the next stage of Eloise’s treatment seems to be coming together.

Eloise is being put forward for proton beam therapy – there is a UK panel that decide whether to approve her application, as it is very specialised and there is limited capacity to offer it to patients. We will write another blog in due course on how landmark this is (and overall Eloise’s treatment)…

Eloise will also have high dose chemo with stem cell rescue. The first stage of this is for Eloise to have her stem cells collected/harvested on Tuesday 6^th April, so she will be an inpatient in the Royal Marsden from Monday 5^th April. Eloise is then likely to be an inpatient for several weeks (with possible periods of isolation) whilst having high dose chemo and then stem cell transplant/rescue at the end.

In the meantime (between whenever we leave Alder Hey and go into the Marsden on Monday 5^th) we will also have a few more appointments in the Marsden in preparation. Eloise is also likely to have another small operation by general anaesthetic at St George’s next week ahead of the stem cell collection and high dose chemo (hopefully this will be just in one day, and is assuming Eloise is strong enough for another operation).

Many people have asked, why does Eloise need high dose chemotherapy and proton beam therapy when they removed all of the tumour?

In short, this is because Eloise’s cancerous tumour is so aggressive/malignant (WHO Grade IV) that even if a few (microscopic) cancer cells were left in her brain (which even after a Gross Total Resection will be the case), then the cells will multiply fast, grow into another tumour and spread to other parts of the central nervous system! Generally, the handful of survivors of ETMRs are those that have had a Gross Total Resection (GTR), High Dose Chemotherapy and Focal Radiotherapy (generally Proton Beam Therapy).  Whilst Eloise’s prognosis remains awful (i.e. single digit survival rates) due to her having an ETMR (the 3 factors noted above don’t equate to cure, just increase her odds), we are grateful that Eloise has managed to have a GTR and it looks like she is getting the best treatment possible. It’s absolutely amazing!

For those that pray:

• Prayer of thanks for the amazing miracle of a Gross Total Resection. This has been independently verified by radiographers – just utterly amazing. Prayer of thanks for a successful shunt operation which has helped to deal with the hydrocephalus and enabled Eloise to improve.
• Pray for Eloise to get stronger so she can manage the long car journey, can begin to stand/walk again – and face all that’s ahead.
• Pray for favour on Eloise’s application for Proton Beam Therapy – that this would be accepted and accepted quickly.
• Pray for wisdom for our oncologist and all those involved in looking at Eloise’s case – for them as they piece together the exact type of chemo and the timing in the context of proton etc.
• Pray for Anna too – she’s had several months of upheaval and not seeing us together. Pray for continued resilience and strength for her. She’s an absolute superstar.