MRI, Proton Beam Therapy and High Dose Chemo Update.

It’s been another busy/full week for Eloise. In chronological order:

On Monday Eloise had her ophthalmology appt and then her MRI scan. Her eyes are all looking good so far, which is fantastic. Eloise did really well in going nil by mouth until 3pm and had her MRI at St George’s. They also slightly adjusted her shunt afterwards, so it was another long day in hospital.

Tuesday we had a community nurse visit but apart from that enjoyed the day at home! What a treat! We also heard that Eloise has been accepted for Proton Beam Therapy! We are so relieved about this and are very grateful that she will be given this opportunity for this treatment. Eloise will have this treatment as soon as she is able, following the high dose chemo and stem cell rescue.

On Wednesday (yesterday), Eloise had an audiology appointment (all good with her hearing so far!) and was then admitted into the Royal Marsden to start high dose chemotherapy.

We also heard the results of her MRI… The MRI shows no new growth but there are still some question marks regarding the mass around her veins in the middle of her brain – whether it is post-operative scarring or some small residual tumour.  We had mixed responses to this news – we hadn’t realised that there were some queries about this area still (the surgery had been classified as a Gross Total Resection and we had been told the small area left was bleeding/scarring etc.) and we didn’t realise that it’s often hard to tell these things, especially when it’s such a small area (mm’s). We are naturally relieved that it’s not spread or grown – a massive relief (if it had, we might have needed to quickly change treatment plan) but have a few concerns about this possible residue. The oncologist is seeking the neurosurgeons and others points of view. Either way, high dose chemo with stem cell rescue and proton beam therapy are the best next course of action – and the scan confirmed that we are ok to go ahead with these. It really is an emotional rollercoaster.

Eloise started her high dose chemotherapy this morning. She will have 6 days of chemo (3 days of high dose of one drug and then 3 days of high dose of the next drug), followed by 2 rest days – then a stem cell transplant at 4pm next Friday.  The next few days are mapped out hour by hour…

How do we feel?

Flat to be honest. It’s an emotional rollercoaster that we have been on for months and some days are harder than others. We are very very grateful for Eloise being accepted for Proton Beam Therapy, but know there are so many battles to keep fighting. We are very flat about possible residual tumour but also know that we might never get a definitive answer to what the marks on the images are… they simply don’t know.

For those that pray:

• Praise that the scans remain stable – that it hasn’t spread or re-grown! Pray we get clarity on the scans and that any cancer cells disappear (even if not in a tumour residue there will still be some cells).
• For Eloise to tolerate the chemotherapy remarkably well (please see previous blog about risks). For the next few days, please particularly pray against sickness which she is likely to have now.
• For Eloise to be able to start Proton Beam Therapy very very quickly. We need logistical challenges to be overcome e.g. the likely need for her to have a proton planning session/MRI in Manchester asap – but for Eloise to be well enough to do this. Quick Proton Beam Therapy is crucial for her treatment and prognosis, so please please pray that miraculously she is well enough from chemo to do any proton planning sessions and to start Proton Beam Therapy very quickly.  Pray the logistics would all come together and that admin wouldn’t delay things.
• For Anna. Anna noticed that we were packing for a longer stint in hospital and is now much more aware of the reality of this accute treatment – the length of hospital stays, being separated for weeks, how it can make Eloise poorly etc. Please pray for her little smart mind as she processes all of this.
• For Eloise to be more peaceful. Last night Eloise seemed quite agitated. She seems to know that she’s back in hospital for a while and she too isn’t particularly happy about it. She’s been smiling, chatting and playing with the nurses again today but please pray this continues and she’s more peaceful again – particularly at night. It can be quite distressing seeing her agitated as she also wants to pull her Hickman and NG lines out, so please pray for calm and peace