Smashing this first chemo and finding ETMR experts

This week has been spent having blood transfusions, platelet transfusions, antibiotics, learning how to feed and administer medication via NG tubes (Pete and Mel learning!), and changing a lot of clothes and nappies!

Eloise continues to do brilliantly with this first cycle of chemo.  She’s running around the ward (always attached to stickman – or sometimes now a bag with her NG feed in it), dancing, playing in the playroom and continuing to act very much like a toddler.  Her temperature came down very quickly (thank you for praying!) and her seizures have improved significantly (she’s still having a lot, but they are generally very mild absences – the medication is certainly helping).  We are so grateful she’s not been vomiting (everyone asks when she last vomited, and we have to say she hasn’t once – yet!) and are genuinely impressed by how strong and resilient she is.  Her blood counts are at zero, but you wouldn’t know it 😊

Alongside this, we have been doing quite a bit of research into ETMR’s.  With it being so rare (there are only approx. 300 cases in the literature, worldwide) the evidence base is very small.  The numbers are too small for official clinical trials.  That said, we have liaised with a few survivor families (including here in the UK) and have found a couple of experts who have done research into ETMRs and successfully treated some cases (most children don’t survive a year).  We are really grateful to our oncologist and CNS nurse here at the Royal Marsden for allowing us to get in touch with these experts for their advice and for supporting us with providing Eloise’s medical information.  We’ve already had an initial response from one of the experts.  We are also getting a second opinion on surgery from another neurosurgeon who has successfully removed an ETMR here in the UK. 

So far. the key thing everyone agrees is 1) we need to act fast 2) for Eloise to have a chance of beating this, she needs surgery – so we really need surgery to be an option.  3) In due course, she’s likely to also need a type of focal radiotherapy too…

How do we feel?

• Exceptionally grateful for the internet (to be able to connect with others that know about ETMRs), the experts who are researching this, and a supportive and fast-moving team here at the Royal Marsden.  We know these are still small chances, but we keep doing all we can to see how we can help our smart, fun-loving Eloise. 
• Really glad that Eloise is doing so well and is having such limited side effects with her first round of chemotherapy.  Thank you to everyone for praying!  This is so important, as it potentially gives us more options (e.g. for surgery) as she continues to be strong.
• Exhausted.  Our days are really full – from meetings with dieticians, to meeting with Dr’s, to rounds of antibiotics, blood transfusions and regular observations.  It’s a constant stream…  Sleep has really improved as we are now in a double person room, but are the only ones in the room for the past couple of nights – and this has really helped Eloise’s seizures too.
• Conscious that over the next week some big decisions will be made for Eloise (again!).  She will have another MRI via general anaesthetic on Tuesday and then decisions will be made about next steps e.g. whether to start the second round of chemo or go for surgery now.  We are hoping the information and opinions we gather from the ‘ETMR experts’ will also really help these decisions too.

 For those that pray:

• Praise God that Eloise continues to do so well and have limited side effects from the chemo and that she continues to have fun!  Thank God for the seizures improving (we’d like them to be completely gone, but there has been a marked improvement, so we are really grateful).  Please pray this continues!
• Pray for all the decisions that will be made regarding Eloise’s treatment over the next few days.  Pray for divine knowledge and wisdom for all those involved – for the experts to provide clear and helpful advice, for our oncologist and for everyone to be agreed (including ourselves) on the next steps.  Pray that surgery will be possible – for the right surgeon, at the right time (very soon!)