Firstly, apologies for a long post….there is a lot to catch-up on.
How is Eloise?
Eloise is doing well but has definitely become more tired, lethargic and ‘dozy’ (often meaning she’s walking dozily and tripping). We’ve been told that this is likely to continue for a few more weeks and that she is roughly at the ‘peak’ of the tiredness from the proton beam therapy. Whilst having proton she was tired from the daily GA – she is now tired from the effect of the proton beam therapy. This is a little tricky to manage as we are wanting to do some fun things as a family between treatment and whilst its Anna’s summer holiday, but Eloise’s energy is definitely up and down (and very unpredictable). And unlike an adult who is able to articulate how she is feeling, we are having to somewhat guess and try to adjust accordingly.
Eloise also continues to have a few issues with her eyes looking slightly upwards, alongside her occasional sensory overload challenges, all of which we will continue to work with specialists on (as much as possible) and pray that these things improve as her brain calms from the proton swelling and she gets stronger and stronger. Fortunately these are relatively mild on the scheme of things, and she is still just quite weak. But despite this, Eloise is eating well, always trying really hard at whatever she does and continues to enjoy her days out of hospital and being with Anna!
Yesterday we met with Eloise’s oncologist. It was wonderful to hear the words that Eloise is classified as being in ‘Complete remission’! Awfully, the vast, vast majority of ETMR patients never hear those words as it is just so aggressive (and that’s including many with tumours that are much more ‘operable’ than Eloise’s was). We feel so unbelievably blessed that Eloise has got to this point. Several months ago, we only prayed in desperation that a miracle would happen – that somehow a surgeon would be able to remove the ‘inoperable’ tumour’, and that Eloise would be one of the very, very few ‘lucky ones’ to one day say she is NED (with No Evidence of Disease). Thank you Jesus – what a miracle. Thank you to all those that prayed. Thank you to the vast numbers of people involved in Eloise’s treatment and journey – most notably the superb oncologists, neurosurgeons, epilepsy consultants, junior doctors and registrars, nurses, caring staff, community nurses…the list goes on and on.
That said, because this brain cancer is so aggressive, and so little can be done if Eloise relapses, we are also conscious that the fight is far from over… She is at a very high risk of relapse for another 18 months- 2 years (until she is about 4). So we pray that the miracle that has started, continues!
12 months of Maintenance chemotherapy
With the oncologist, we went through the 12 months of maintenance chemotherapy – to try to ‘maintain’ Eloise being NED and keep the cancer away. We went through the practicalities, side effects, risks and plan for the two drugs that Eloise will take orally each day, alongside the monthly intrathecal topotecan. She will have weekly bloods and liver tests, alongside many of her other very, very long list of appointments.
Eloise is the first child (and probably person) to have intrathecal topotecan in the UK – they have used topotecan before on adults – just not directly into the brain/spine. The expected side effects seem acceptable, but some of the risks were again hard to take in and stomach (some of which are very severe and lifelong). Fortunately the chances of these risks are relatively small, and therefore as the global ETMR experts strongly recommend this approach to try to reduce the chance of relapse and increase Eloise’s chance of survival, we feel peaceful about doing this (and had pushed for this as we desperately want to do everything we can to increase Eloise’s chance of survival). Consent meetings are always tricky, even if you really want the treatment – it’s another stock-take of the risks, and we know these aren’t just theoretical risks – they do occasionally happen to some people!
For Eloise the greatest risk is probably from big seizures and other neuro issues (e.g. neuropathy) from the intrathecal topotecan. These are likely to be evident quickly after the intrathecal topotecan. Other risks include meningitis and swelling in the brain. So please pray against this!
We’ve just been told that Eloise will start her first round of this chemotherapy on Thursday (12th August). She will have the intrathecal topotecan via a lumber puncture (under GA) and will be in the Marsden for at least 24 hours to monitor for any side effects.
How do we feel?
To be honest, a whole host of emotions. It’s actually quite a tricky time:
- We are overwhelmingly grateful that Eloise is NED, but also sometimes feel ‘survivors guilt’.
- We’ve started to think about the past year and how traumatic it has been – but know that it’s far from over either.
- We try to do some fun things – but then realise that life is far from ‘back to normal’. We will never return to the ‘normal family life’ and the options we had before – and are working out how to embrace the phase we will now find ourselves in.
- We are looking forward to being at home more – but conscious that having significant chemo treatment, whilst spending more time as an outpatient also comes with more responsibility.
- And we are also conscious that this is a very long battle and that Eloise (and we) will live with the side effects of all of this for the rest of her life (shunt, risk of seizures/having epilepsy, other side effects from surgery, high-dose chemo and proton treatment). She is doing amazingly well, but Eloise still has massive challenges to face every single day.
- We are so proud of our wonderful girls. Eloise never gives up – she always tries, tries and tries again. And Anna is the most caring, responsible, kind and wonderful sister Eloise could have.
For those that pray:
- Give thanks that Eloise is NED and that she can access maintenance chemotherapy in the UK.
- Pray for Eloise as she begins the new chemotherapy regime next week. Pray for protection from the risks and side effects. Pray against seizures and any severe reactions. Pray the chemotherapy does what it needs to and keeps the cancer away.
- Pray that Eloise gets stronger, that her eyes are ok, that any sensory issues improve, and that somehow this next year, despite all the treatment and appointments – she can have life in abundance.