When people ask, ‘how’s Eloise doing?’ I never quite know what to say. She’s relatively ‘well’ but then I take a step back and think ‘heck no, she’s not doing well for a 2 year old?!’. It’s really hard to know what to expect, what is now seen as ‘well’ (because she is not a well child!) and each day is different.
So here are some thoughts on how she is doing at the moment…
- Eloise had her second intrathecal chemotherapy on Thursday. It went smoothly and this time her temperature started to creep up but didn’t spike. Phew! So we have been allowed home. So she is ‘well’ as she’s not in hospital on IV antibiotics etc.
- She’s well in terms of getting steadier and stronger on her feet, but she can’t run and bounce like a normal 2 year old and her head is titled down. She really has lost a lot of her ‘bounce’ over the last 9 months and it feels like most days she just puts all her energy into getting through the day and participating in things as best she can. She interacts and walks around and will then just lie down and rest on the floor, or get agitated as she’s very suddenly overtired.
- She’s well in terms of her language developing, but a lot of the time she hasn’t got the energy to ‘chat chat chat’. Her humour comes out occasionally on a very good day, but we do miss her infectious smile and laughter (she genuinely was the most smiley of kids) that she had pre-treatment. It’s slowly returning, on her better days, but most days she’s still clearly feeling quite whacked, nauseous and poorly.
- She’s well in that her weight is more stable, but her appetite is particularly low. She’s nibbling at best. We know it’s not just being fussy as she’s often refusing anything. This can be quite exhausting trying to encourage her to eat… We give her an NG feed overnight, but that involves waking in the night to man it, turn it off and give it a flush…. And it isn’t really how you want a 2 year old to live.
- She’s well as she’s not vomiting, but she does have a lot of lot of nappy, clothes and bedding changes. Despite her being mentally ready, potty training is a long way off at the moment.
- She’s well in that she doesn’t appear to have any of her focal seizures, but does have some absent moments when exhausted, and she’s on such high anti-epileptic drugs that add to her exhaustion.
Thanks to those that prayed for Anna – she has really enjoyed her first week back and been brilliant with all the uncertainty and change.
For those that pray:
- Pray for this round of chemo – for less exhaustion, for her appetite and for her to feel more ‘normal’. Pray for her to smile and laugh more.
- Give thanks she’s NED. Pray against relapse!!