The waiting game

After being rushed in to be informed of Eloise’s diagnosis and then told things would move fast (“days and not weeks”) things now feel relatively slow going (which is probably not that surprising as even a day feels quite a stretch at the moment). 

Eloise has started on anti-epileptic drugs (AEDs) – which have slotted into the bedtime routine very smoothly, which is brilliant. She continues to have a similar number and severity of seizures – we are really hoping they start to have an impact soon.

We have an appointment to meet with a neurosurgeon at St George’s next Monday. Apparently 4 neurosurgeons have reviewed her case (including those from Kings College Hospital). We don’t yet know their recommended plan for treatment but understand that we will be discussing this on Monday.

How do we feel?

It continues to be a rollercoaster.  We have had a couple of days where we were told to shield (so Anna had to stay home from school), and then have been told we don’t need to until our meeting on Monday – so this has all added to the challenge of the past few days. That said, Anna’s school (St Thomas of Canterbury) have been exceptionally thoughtful, caring and helpful with all the disruption.

How we feel generally depends on which hour you catch us/ask 😊.  We still feel hopeful for the long term, but feel this is going to be a marathon and that the whole situation of brain tumours is quite complex.   We really wish it could all be over very quickly, but we might be in this for a while.

That said, we do feel carried by others’ kindness and care – Anna commented at the weekend ‘Wow, people are being so kind.  Wish I could be as kind as them’.  So even in the hard times, good moments come and our lovely girls are also learning things through it!  Genuinely, thank you for reaching out and loving us – thank you for all the messages and sorry when we haven’t responded.

For those that pray…

  • Prayers for peace/calm in the waiting and for us to relax when so much of the next few weeks and months feels uncertain (e.g. we have NO idea about Christmas at the moment…!)
  • Prayers that the neurosurgeon will give us a clear recommended course of action – one that all the neurosurgeons agree on and one that we feel peaceful about
  • For Eloise’s seizures to reduce in severity and frequency

5 thoughts on “The waiting game

  1. The waiting time is so hard for you. Glad that 4 neurosurgeons have looked at it and praying that the next course of action will become clear on Monday. Xx

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  2. Thank you for sharing.. Praying that today has been useful and given you a clearer picture of where things are going. Much love Melissa x

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  3. Dear Mel and Pete, I have been praying for you all since I heard the news from Yvonne, and I continue to pray for Eloise and the medical team as they advise you on the right course of treatment – for her full healing and recovery in due course, and just now for the seizures to ease; for strength, and courage, and hope for all of you, trusting that you are safely held in God’s love today and always. Caroline (in Clapham)

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  4. Dear Pete and Mel
    We are praying for Eloise that God should heal and help her to get recovered soon. I can imagine the pain you both are going through but above all God is in control of every thing, so we all are standing with you in prayer for the favorable solution in this tough situation. Take courage and have faith in God for He is faithful in helping and comforting His Children.

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