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…