Update 3rd May: Counts on the Up!

Over the last few days Eloise has got much better! Her temperature and infection have gone, and she’s been getting stronger. She’s stopped being sick and is having a combination of IV feeds, NG feeds and eating some food.

She’s walking around (with stickman) and enjoying the playroom and garden. It’s lovely to see her singing and dancing again a bit too – she’s not done this for quite a while. It’s wonderful to see some of Eloise’s very cheeky and funny character return! We are so proud of her – she’s had to re-learn to walk several times in the past few weeks after her various operations/intensive care admissions, and she’s done it amazingly. Eloise was born physically strong and she continues to be. The lyrics from Chumbawamba’s Tubthumping ‘I get knocked down but I get up again, you’ll never gonna keep me down, I get knocked down, but I get up again…’ seems appropriate to sing!

That said Eloise does also get quite frustrated at being attached to stickman most of the time and many times simply wants all the line to be “off!”. She’s also getting very frustrated with nappy changes (that are ending up in tantrums – which when attached to stickman are quite difficult to manage) as she is sore from the chemo and needing changing so often. She continues to be brilliant and very brave for the nurses with all the daily injections, meds, obs, regular blood/ platelet transfusions etc. but nappy changes can be a real challenge!

The great news is that Eloise’s all-important neutrophils and white blood cell counts are up!! She’s no longer at zero (or even neutropenic) , so we are ‘on the way up’. In theory we are meant to stay in hospital at the Marsden with her until 21 days after her stem cell transplant (so another 10 days) to keep monitoring her – mainly because she’s at risk of VOD which has to be dealt with very, very quickly. But we are hoping to get to Manchester in the next few days/week for proton planning, and then return to the Marsden for any further recovery.

How do we feel?
We are so encouraged by how well Eloise is now doing. You’d never have guessed what she’s been through over the past couple of weeks… and months for that matter. What a little legend.

We are incredibly grateful her counts are on the up! We are really hoping to get her to Manchester ASAP…

We are doing a bit better having had a little more sleep (stress “little”, as hospital sleep is still tricky!) the past few days.

For those that pray:

  • Praise that Eloise’s infection has gone, she’s stopped being sick and her blood counts are on the up!
  • For Eloise to continue to recover brilliantly! Pray for protection against VOD.
  • Pray for Eloise to travel to Manchester for proton planning really, really quickly – ideally in the next few days. To do this, her counts need to continue to come up, she needs to come off all her IV meds and feed (and keep her feeds/food down), only require blood/platelet transfusions every few days (rather than daily), and have no other infections/issues etc! She needs to be strong enough for another general anaesthetic too.
  • Pray that it isn’t so uncomfortable for Eloise having her nappy changed and that she’s calmer for it. It’s a small prayer, but it’s making her quite frustrated as we have to do it so often.
  • Pray that all this treatment obliterates any cancer!
  • Praise that her partial seizures have continued to stop. Please pray she has no other seizures.
  • Please continue to pray for Anna. And pray that Eloise and Anna can see each other soon. An hour together as a family would be amazing…

10 thoughts on “Update 3rd May: Counts on the Up!

  1. Continuing to pray. My mother would sympathise with you, when I was in hospital as a baby I coped with most stuff, blood tests etc etc, but if anyone brought a stethoscope near me I screamed the place down!

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  2. I have no words but incredible praise and thanks to the LORD Almighty at what I have just read about Eloise Zoe!!!! God’s mighty hand is upon her & He will not let go!
    Continuing to pray for all points listed, esp. against VOD. As well that it shan’t be long before you’re all on your way home from Manchester via Marsden for a day or so 🧎🏽‍♀️🙏🏽🧎🏽‍♀️

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  3. Rejoicing in your good news… praying for you all! As a well seasoned former nanny, I’d like to offer an idea that might make Anna feel “helpful” and perhaps make nappy changes more tolerable for Eloise…
    If your nappies are not plastered with Minnie Mouse or Disney princesses, (also a potentially good diversion!), ask Anna to color pictures on new nappies for Eloise with brightly colored markers, adding stickers or notes, or a little treat taped on it or???? Get creative with grandparents, too! (Uncle Ollie made this picture for you today!😉) …. don’t know if that’s possible due to COVID or her need for protection from “germs”, but she could make her own pictures, too… as could mom and dad!!! Have some fun with that! Enlist a nurse or two for “funny faces” or pretty colors or…???? Much love and joy to you all… standing with you! He is GOOD! 🥰😘💕💖C

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  4. Praise God for his goodness and so
    Many wonderful answers to prayer.
    Lord we ask for more …. more of your healing power and goodness to flood little Eloises body, zapping anything that shouldn’t be there and filling her with your love and wholeness making everything new and tip top, just as you made her. We pray for special, fun filled family times together and lots of rest and refreshment for all. 🥰

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  5. Such an amazing little girl! We pray this improvement will continue and all will go to plan. Blessings to all the family xx

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  6. Praising the Lord that things are going better , praying as you ask , nappy changing must be tough , but having the energy to have tantrums ….. well !!
    Blessings and love Penny x

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  7. Your updates are so helpful. Thank you for taking the time. I thought there would’ve one tonight and am relieved to have heard your news. Poor little girl with sore nappy changes. Some days it’s the collateral damage that breaks the camel’s back. Hoping normal white count will soon help.

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  8. It’s so wonderful to hear these good reports yet continuing to pray your precious and amazing daughter!!! May God continue to guide those attending her and give her strength each day!

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  9. Praying that Eloise becomes more comfortable with nappy changing and her skin less sore.
    That her condition improves and she is able to make that journey to Manchester very soon.
    Also for Anna, Mel and Pete and their extended family for continued strength. They are remarkable as they deal with these demanding circumstances.
    You are constantly in my thoughts and prayers.

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  10. Hope you got home as planned and are having a good time with the girls. Mollie is super happy to be with her bothers and really hope you guys are having a good “full family” weekend as well.

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