Chemotherapy starts tomorrow

After a full week of MRI scans, appointments, tests and the operation for the Hickman line and lumber puncture, we are now gearing up for Eloise to start chemotherapy tomorrow.

The Hickman line and lumber puncture were done on Thursday – thank you to those of you who prayed.  The operation was done in the morning and although she was very ‘hangry’ before, Eloise pushed through and was a superstar!  We went home late Thursday night, and then went into the Royal Marsden on Friday for the kidney test and the appointment with the oncologist.  Eloise has been fantastic at putting up with all the general anaesethics, the Hickman line in her body, the tests etc.  She has been tired and isn’t 100% but when you think about what she has gone through, she is doing amazingly – still managing to sing, dance and play with her sister Anna.

The appointment with the oncologist on Friday confirmed that Eloise’s tumour is an ETMR.  The prognosis is not good at all, but as we clarified with the oncologist – we are starting the high-dose chemotherapy in the hope that it will shrink the tumour so that surgery can be done, and in the hope that we can ‘cure’ it.   The MRI scan showed that the tumour had continued to grow at a similar rate as between the first two scans (but not exponential, so that’s good), and shows only the one tumour.  Unfortunately as the tumour is attached to the brain stem, surgery is not an option at this point – and therefore we really need the chemotherapy to shrink the tumour away from the inoperable area, so that surgery can be done.

Tomorrow Eloise will start the high-dose chemotherapy at the Royal Marsden.  She will be an in-patient for several weeks (prob 5-6 weeks if all goes to plan).  Today is our last day together as a family for many weeks/months.  It’s a very weird time.

Update: We wrote this blog earlier today (Sunday), but we again ended up in the Royal Surrey today as Eloise’s Hickman line needed looking at.  Eloise and Mel ended up spending a few hours in the hospital and were told she needed a set of antibiotics via IV then, and then every 12 hours (via IV).  So instead of staying in and being then transferred to the Marsden, we opted to take her home and have the last few hours of the day together (for our last family day and a walk as we’d promised Anna), and we will take her in again at 1.30am for her next dose, and then home, and then take her in for her audiology appt and then the starting of chemo.

How do we feel?

• It’s now starting to take its toll on us – stress levels are high and plans keep changing.  It certainly feels brutal and relentless – and its horrible to see our sweet Eloise be put through so much (and hate many of the procedures), every single day.   It’s sad to have had our last few family days together (before Eloise is a long-term in-patient), snatched away from us, and it’s hard feeling like we keep letting Anna down and are struggling to follow through on the few things we say we will do.
• It is frightening that Eloise’s prognosis is so poor, but we are holding onto the fact that the Dr’s are doing this in the hope (no matter how statistically small it is) that they can cure the tumour.  At the same time we know we have an All-powerful God who can and sometimes does do miracles.  We continue to hold onto Him.
• A whole mixture of other things!  We cherish each moment we have as a family, but they make us feel sad too.  It just feels so unfair on both of our girls.

For those that pray:

• Pray for Eloise to be able to start the chemotherapy and that it would work!  That it would drastically shrink the tumour – and particularly shrink it away from the brain stem in order for surgery to be a feasible option.
• For Eloise herself, as she gets put through such toxic high-dose chemotherapy.  For her to not be too sick, ill and not have too many side-effects.  For massive protection from infection – we understand many children on this protocol can end up in intensive care due to infection – so please pray for protection.
• For Anna as she goes back to school and adjusts to Eloise (and at least one of us) being in hospital all the time.  Following chats with Eloise’s oncologists, we are really grateful that Anna’s school are allowing her to come in as we will be in hospital with Eloise.  We are so glad Anna will be able to have some respite from the chaos at home, see some classmates and have some vague normality – and not be at home on her own without her sister around every hour of every day.  Please pray she doesn’t miss Eloise too much and adjusts well to being back at school.  We are also massively grateful to our parents who are helping out with looking after Anna and keeping things ticking over at home.
• For renewed energy to begin this next step.  Our reserves are low, so pray we can find renewed and deeper strength to keep going physically, mentally and emotionally.
• For wider family and friends – for Eloise’s grandparents, cousins, aunts, uncles, great grandparents etc etc. Please pray for comfort, faith and emotional and physical strength as they continue to journey with us and support us.