Where to begin…

Posted byEloise Zoe UpdatesPosted inUncategorized

Firstly apologies this post is very, very long – we don’t anticipate future posts to be so long, and sometimes we might just post one line. 

So where are we?

Background

As some of you know, over the past few months our daughter, Eloise (17 months – born 6 June 2019) has been experiencing odd ‘moments’.  They started as situations where she would run at us and suddenly cling onto us for dear life, go red in the face and breathe heavily.  We noticed these moments but thought she was doing it out of panic – children can sometimes do odd things especially when they are little and learning to walk etc.  It wasn’t until our wonderful childminder (who we will forever be indebted) mentioned to us in early September that she thought these moments might be seizures and suggested that we should get them checked out. We hadn’t contemplated these moments could be seizures (we only really thought of seizures as the grand-mal version) and we are very grateful that someone with more experience was brave enough to have a difficult conversation.

We got Eloise first checked out by a Doctor at the beginning of September.  A very long story, but after errors/delays in the system,  over the past few weeks Eloise has had an EEG, an ECG, a sleep EEG, and then on Monday had an MRI under a general anaesthetic to try to get to the bottom of the issue.  The early thinking was that Eloise had possible ‘temporal lobe epilepsy’ – and the MRI was to just check there wasn’t a structural cause (which was deemed very unlikely).

During the period all the tests took place (since September), Eloise has been having an increasing number of seizures – starting from approx. 2 per day, increasing to 5-8 per day, and now between 10-14 per day. The seizures have also become more obvious – including shaking of her limbs and looking vacant.

Diagnosis

On Wednesday morning we got the call from the Epilepsy Consultant asking us to both come in immediately to talk about the results of the MRI, which showed ‘a problem’. We weren’t expecting results for 2-3 weeks, so we were NOT expecting a call.

At the appointment we were told the news that Eloise has a brain tumour (the Dr was good at not using the word brain tumour in the first few sentences, to soften the blow).  What we know so far is that it is a ‘moderate size’ astrocytoma tumour – it appears to be on her brain, rather than ‘in’ the brain.   The seizures that Eloise have been having are a symptom of the tumour. We don’t know much more than that in terms of the detail at the moment.  We don’t know what grade it is yet (but apparently most are low-grade).

We’ve been told today (Friday 27th Nov) that the Neurosurgeons and a Multi-disciplinary team at St George’s in Tooting will be meeting to decide the course of action – mainly to decide whether to do a biopsy first (which will still require an incision in the skull) or to go straight for surgery. 

All we do know, is that this is very unusual and as our Consultant said, we are in for a rough ride over the coming period – and that things over the next few days and weeks will be very fast-paced. 

We think the long term prognosis ‘should’ be ok based on percentages (but being honest, statistics aren’t our friend at the moment.  Only approx. 400 children in the UK of any age have a brain tumour… if you look at the % odds of those it all feels very odd, especially when Eloise is also only 17 months…!)

How do we feel?

As you can probably imagine a whole mixture of emotions – shock, horror, anxiety about the coming months, concern over our capacity to keep going and support the girls, concern that Eloise already dislikes Dr’s (and that we cant explain all of this to her!)…

But also:

  • Feeling in awe of what Dr’s can do and feeling exceptionally grateful for the healthcare we do have
  • Thankful that this has happened now, and not in the ‘first wave’ of Covid-19 where MRIs under general anaesthetic were 4 months delayed.  Now, during this second wave the NHS are continuing with the tests, and also importantly, continuing with paediatric cancer surgery (which was apparently delayed earlier in the year).
    Thank you everyone for staying at home to control the virus….it’s meant people like our Eloise can have the treatment they need.
  • Grateful that Eloise is developing exceptionally well – she walked at 10 months and is chatting away and generally loving life (except the seizure moments).  She really is a kid that just smiles all the time and loves life!
  • Grateful that Mel’s work have let her have some time off over the next few weeks to attend all the appts/spend time in hospital and it also enables Eloise to be at home and reduce Covid risks. We are also grateful for Pete’s work who have also been very supportive, which will enable us to best balance life and keep going.

And also, massively thankful for the outpouring of love and care… thank you for all the offers of help.  Over the next few months we are likely to need to take you up on it 😊

For those that pray…

We have grouped them under different headings

For Eloise/Eloise’s health

  • For the meeting today – that the team would decide the best course of action
  • For Eloise to have limited side-effects of the Anti-epileptic drugs she started taking last night, and that these drugs would reduce the seizures, whilst we also work on the tumour…
  • For her not to be too distressed by all the forthcoming procedures and for her to continue to enjoy life somehow
  • For ultimately this to be gone and for Eloise to have a full and abundant life!

(Her name Eloise means ‘warrior/fighter’, and her middle name ‘Zoe’ means ‘abundant life’.  When we named her we felt the meanings were really important….and it now feels more than ever that this is the case).

For Anna

Anna is the most caring sister and one of the highlights of the past 17 months is how close the 2 girls are.  The girls just want to be together all the time – despite being 3 years apart, they adore each other.  Please pray for Anna that she doesn’t get anxious and worried about the situation and that she can still have a great and happy few months ahead.

For us

  • For us to know how to come to terms with this
  • For energy to keep caring for the girls which are at an exhausting age even at the best of times (and putting on our brave face!)
  • Seems an odd one – but parenting this situation seems a new challenge.  How to balance ‘fairness’ between the girls, caring for them both (and not side-lining one of them), not becoming an anxious parent etc etc.
  • To be close to each other, even if we are emotionally and physically exhausted.

For our family and friends

We realise this also comes at a shock for many others too.  Please pray for them too – particularly as Covid restrictions make all of this so much harder as they can’t help so easily/see Eloise.

45 thoughts on “Where to begin…”

  4. Bless you all. – we will certainly pray for you all at least daily and as constantly as we can. It is so helpful for direction on your prayer needs
    It must have been quite a challenge reliving the journey of the last months as you wrote.
    I can’t imagine the turmoil your emotions are in but one thing I do know and believe with all my heart is that the Lord knows and cares for you all……..
    The eternal God is your refuge, and underneath are the everlasting arms. He will drive out your enemies before you, saying ‘destroy them’
    Deuteronomy 33:27
    Please don’t feel you have to reply personally, we’ll follow you blog.
    With much love and prayers
    John and Miriam xxxxx

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  5. Eloise may God’s abundant love fill you up inside and strengthen your little body for the journey ahead. Melissa and Pete may you feel God’s love surround and strengthen you, filling you with his peace so that you might sleep deeply, equipping you for what the day brings. Anna may God’s love keep shining on you so that you see the joy in each day and not the worry.
    My love to you all, and my continuing prayers.
    Bethany xxxxx

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  6. Hi Mel and Pete. You don’t know me but, Luke & Jo are my bro and sis-in-law (I’m married to Jo’s sister, Katie!). Jo has shared this link with us and I just wanted you to know that, whilst we have never met and don’t know each other, we are brothers and sisters in Gods family! Amazing!

    Katie and I are praying for every prayer point you have raised, lifting up the needs for Eloise Zoe that she will somehow understand and feel Gods presence all around her…….praying that the Lord will draw close to you all at this time, and that he will bring healing, strength, peace and his unfailing compassion and companionship to each of you in whatever measure you need. May the God of peace be with you all, and may all his attributes meet you at this time of need (Jehovah-shalom, Elohim and, right now, Jehovah-rophe – our Healer).

    God bless you all,
    Love,
    Stuart and Katie Morgan

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  7. So sorry to hear this Mel and Pete 😔
    Sending lots of love and strength to you all, I cannot imagine how hard it must be.
    We are in London too- Blackheath so if we can help in anyway – look after the girls etc please get in contact. Katie and Andy xx

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  9. Dearest Mel and Pete, our hearts, thoughts and prayers are with you all. We love you guys and your precious girls. Thank you for sharing your prayer requests, we will certainly be praying and standing in agreement for complete healing!

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  11. Mel, and all, your link came up on my feed. I’m so shocked to read the news, with a fellow under-2 my heart aches for what you have to go through, without knowing what you’re having to go through.
    You’re all in my thoughts, especially your Warrior, much love xx

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  12. Hi Mel, Pete, Anna and Eloise,
    You are in our thoughts and prayers, may God bless you richly, fill you with supernatural strength, peace and love and give wisdom and grace to the doctors. Much love and prayers
    Emma Brae (née Sidwell)

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  15. Mel and Pete, I’m so sorry to read this news. I can’t imagine how anxious and overwhelmed you must feel at the moment. Sending you lots of love and you will be in our thoughts over the coming weeks and months, Hannah and André xx

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  18. Oh, sweet Melissa and family… I am so sorry to hear this! Much love to you and prayers for all of you! God sees you! His love and comfort are always with you! He will never leave you or forsake you! Trust His wisdom and purpose… He is with you and goes before you… He loves you! He is big enough…. He will hold you all!
    Your precious little babe looks just like you, Melissa! Big hugs and kisses… Catherine😘💕🥰 (I will follow your blog… keep up with Laura… she will keep us filled in! )

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  19. Mel & Pete,
    We were so sorry to read this. We will be praying for you, especially over the coming weeks. May you know God’s comfort and strength at this time.
    Amy & Andy Meeson.

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  20. Pete and Mel,
    I was shocked and saddened to hear the news about Eloise from Liz and Ian the other day. You may know that we have been battling Will’ diagnosis of lymphoma since April and he will be in hospital over Christmas having Car T cell therapy. What I do know is that the NHS is beyond amazing and the staff we have come to know are incredible….professional, confident, perceptive and deeply caring. Having to go on this journey with your precious little girl puts our battle sharply into perspective and I will be praying for you every step of the way. Sending you so much love, Les 💕

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    1. Thank you so much Les. Yes, we knew of Will’s diagnosis and are so, so sorry you are going through this. We pray that the trial works and that 2021 looks brighter for you all. Much love and prayers to you all and the extended family. Pete and Mel x

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  21. Hi Pete and Melissa
    Harbour Churches (West Wit, Birdham and Itchenor) and praying daily for Eloise and for you both.
    Anchored in Him
    Jonathan
    x

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  22. Sending love, praying for unity and peace between you, enough strength for each day…. praying you are able to be present in the every day with both of your girls. Praying you see past the natural feelings of anxiousness fear and helplessness to knowing its ok to cry, ok to hope, ok to lean on the Lord – knowing that prayers are powerful and effective, knowing HE hears our heart crys, our longings, our deep pain, our utter exhaustion, knowing he knows the end from the beginning.
    (Also know its ok to have a pj day, ok to eat differently when you need to, ok to say no, ok to say yes, ok to be specific about the help you need) love Jen Phoebe Jack & Lois

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  23. Sending lots of love from Liverpool. Really sorry to hear this and we will be joining the many others in lifting you all up to our heavenly Father who loves you all dearly x

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  25. Pete and Mel, thank you for starting a blog and inviting us into this journey. It’s an honor to pray for Eloise and your family in this time. We will follow this and be praying.

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  26. Pete and Mel, thank you for starting this blog and inviting us into your journey. It’s an honor to pray for Eloise and your family at this time. We will keep up with the blog and keep praying! Sending much love and grace your way ❤️ Allison and Michael Sherwin

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  27. Ross and I wanted to leave a message ourselves on the blog to say how much the support of so many people in prayer and extraordinary acts of kindness means to us all. You have been so kind and thoughtful and already have made a huge difference to how everyone is feeling. It’s at times like this when friends and family matter so much and there are even lots of people who we don’t even know who are blessing us all abundantly. You are all playing your part by lifting spirits and helping practically to enable Eloise to get through this – and we believe she will. Pete and Mel named her well – ‘Fighter’ and ‘Abundant Life’ – and she already lives up to her name. She will continue to do so. It breaks our hearts to see our darling little granddaughter go through this but we look forward to the day when this is well and truly put behind her and pray it won’t be too long. We were reminded of the following Bible verse which we give to Eloise, Pete, Mel and little Anna: “The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deut 31 v 8 Mum and Ross

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  30. Dear Pete, Mel, Anna and Eloise,
    Sending you our love and the promise of our prayer for you all as you negotiate these tricky times.
    Barbie and Tony
    Psalm 23

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  31. You are both incredible and showing such strength. Thank you for this blog, I will continue to pray for you all. I love you all so much. Toni. X

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  33. Dear Mel and Pete
    I know it’s been many years since we were in a cell group together at Westwood Church. Your blog is such a powerful idea at this time of challenge, thank you for your courage and faith. We will be upholding Eloise and all of you in prayer and will ask our cell group at St Luke’s Kentish Town to join with us in doing so.
    May the Lord bless you and keep you.
    Cleo & Craig

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  34. Dear Mel and Pete, I’m a friend of Mel’s Mum and have been praying for Elouise’s healing since I heard about her fits. Will continue in prayer for her and for the rest of you at this difficult time and am sending you my love. Isie xx

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  35. My heart sank when Laura first shared the news. My first instinct was a desire to give my young grandchildren a big, long hug and lift you all and grandma Yvonne in prayer. I can only imagine what you are all going through. What a beautiful child, she looks so much like you Melissa.
    Thank you so much for writing this blog so that we can all be praying for you with specific needs. I will be praying and have my church put little Eloise and the entire family on our prayer list. May God’s people all across the globe be lifting up your needs. It is my prayer that God will intervene and show His loving healing power in a glorious way and that He will give you, Melissa, Pete, Anna, Yvonne and the extended family everything you need during these coming weeks ahead.
    Love from Seattle,
    Stan Harrison

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  36. Pete, Mel, Eloise and Anna,

    Know that we love you very very much and are praying continually for the things you’ve asked us to keep lifting up before God.
    We are with you and for you, just like our loving Father. . May He carry you, go ahead of you and make a path for you through this.
    Sending so much love and blessing
    Faye and Nick xxxxx

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  37. We are holding you all in our prayers. We praise God that Eloise will have all the benefits of our wonderful care system and that you, her parents, are committed Christians who have summoned an army of prayer warriors. Sending all of our love, Sandy and John xxx

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  38. Dear Melissa & Pete. We’ re praying for healing for Eloise and everything else your family needs in the firm knowledge that our God is mighty to save. Hold the fort against fear and take His hand as you enter this challenging time on the roller coaster of hope and fears. He will bring you safely to the end of that ride with every one of you full to the measure of abundant life. Much love to you all and praying xxx

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  39. Mark passed on details of your website. We are praying for you all at this challenging time,
    Much love Hilary and Andrew

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  40. Dear Mel, Pete Eloise and Anna,
    My heary goes to you all family.
    Our Lord is a way maker, miracle worker promise keeper! I cast and bind the tumour to leave Eloise in Jesus name! I speak restoration and healing in her life!
    Amen!

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  41. Dear Mel, Pete, Anna and Eloise,
    We haven’t had a chance to meet yet, but my son, Sky and Eloise have, they are both cared for by Karen.
    I’m so shocked and sad about your news, Eloise has just started her journey in life and it’s not fair …. I believe and trust in our NHS and I know that the team of surgeons will do all that is in their power to make Eloise better and ugly c disappear, never to return.
    Our thoughts and prayers are with you. Sending you our love and positive energy,
    Nela, David and Sky xxxx

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  42. To Mel, Pete , Anna and Eloise,
    My heart hurts at the thought of you having to go through what you are right now.
    My son Reuben is cared for by Karen and I know they play together, I have some beautiful pictures of them. It’s unimaginable how your world must feel upside down right now. If there is anything we can do to help to make life a little easier please ask. We have never met but I had to reach out to you all.
    Sending so much love and prayers to your beautiful family xxxx Leah , Billy and Reuben/Roo xxx

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  43. As a cousin of Pauline, your grandmother, I have had the news of Eloise. She is in my prayers and will follow the blog. At this extremely anxious time I am constantly calling out to our Creator Father for this little girl and your whole family. Much love, Shirley xx

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  44. Pingback: Poor Prognosis and High-Dose Chemo for 6 months – We are going to need prayers – Eloise Zoe

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