Today we met with the oncologist to discuss Eloise’s biopsy and to discuss the next steps in terms of chemotherapy.
It was a long meeting, with lots of information (which we won’t go into the detail here – as there is just so much). But here are a few of the key points:
- The biopsy is still being analysed by pathologists at Great Ormond Street to diagnose what the exact sub-type of Embryonal tumour it is. But all embryonal tumours do not have a good prognosis – particularly in very small children. If Eloise is to get to the age of going to school then she is going to have to fight and beat the odds significantly. The chemotherapy approach at this stage won’t be affected by the sub-type, but the pathology might just give some useful information for further down the line.
- Eloise will be on a very high dose chemotherapy – involving 6 x 21-28 day cycles. It will involve 5 chemo drugs, given via a Hickman line (tubes in the chest) for 7 days. Eloise will then have some ‘rest days’, but even on the rest days there will be various appointments. At the end of the 6 rounds she will have a stem cell rescue procedure too. Eloise will be an inpatient for the entire first cycle and the first part of the second cycle. She will then return as an inpatient for the 7 chemo days each future cycle as a minimum.
- The list of short and long term side effects of high-dose chemotherapy treatment for children is very long and as you can probably imagine – not pleasant. But in short, the growth of the tumour and the prognosis means we don’t have an option but to start treatment in the hope that it will shrink the tumour (ideally obliterate it) and give us options for further treatment (e.g. surgery and/or targeted radiotherapy) once the tumour is smaller.
- Next week (Wednesday 17th) Eloise will have her Hickman Line inserted via a small operation (day patient) at St George’s Hospital. They will also do a lumber puncture at the same time, whilst she is under general anaesthetic. We will all need Covid tests ahead of this.
- On Friday (19th), Eloise will have various appointments to look at her kidneys and hearing in preparation for chemo, followed by another meeting with the oncologist.
- Eloise will then start her first round of chemo on 22nd February. She will then be in the Royal Marsden as an inpatient for the next 5-6 weeks.
How do we feel?
- Exhausted and crushed from another difficult conversation with another consultant telling us that Eloise’s prognosis is worse than it was at the start of the day and that Eloise’s diagnosis is exceptionally rare. We try to make the day special and enjoy being fully present for the girls, but find we are exhausted in the evening.
- Scared about the next few weeks – about how Eloise, Anna and ourselves will physically and mentally cope. We are absolutely gutted the girls wont see each other for so many weeks – that literally breaks our hearts. We will both be allowed into hospital (but only one of us stay each night), but it means as a family we will be separated for a long time, and then regularly be separated for the next few months.
Covid pandemic + Cancerous Brain Tumour in a toddler is exceptionally rough going.
- Despite the hard things, we feel grateful that we can both go into hospital whilst she is an inpatient and grateful that we feel the NHS would fire anything at this to try and beat it.
For those that pray:
- FOR THE TUMOUR TO BE OBLITERATED and for Eloise to be strong, healthy and full of life (refer to blog 1 for her name*)
- Pray we can make the most of the next few days. Our last ‘family time’ for a very long time.
- Emotional and mental strength to keep being strong for our beautiful and smart girls.
- Practically – for none of us to get Covid and for the operation and appointments next week to be successful and for Eloise to be amazingly peaceful despite the chaos.
* We’ve since been told that Eloise also means ‘healthy’ too! So we are also praying this over her.