Eloise has had a really good week – her energy has slowly returned, as has (some of) her appetite and importantly her blood counts have improved. Also, much of Eloise’s zeal and character has returned! She’s been walking around (even trying to run), playing with other children on the ward and even had a dance session to ‘Let it Go’ with a group of nurses! She (read we) commandeered a rocking horse and put it outside her room – which she proudly rode whenever someone passed by (see pic below). All in all, a huge improvement from where she has been – considering only just over 2 weeks ago she was in intensive care, and ‘wasn’t responding how the Doctors would like’….absolutely amazing. To be honest, she’s actually the best she has been for months – chatty, confident and just desperately wanting to be a normal toddler (but recognising she has quite a bit of catching up to do)!
Due to her consistent good health and energy Eloise has wonderfully been allowed to go home for the weekend and will then be officially discharged on Monday. This is amazing news (and medicine for all) and somewhat surprising – given the average time to recover from high dose chemotherapy is ~ 6 weeks and Eloise has recovered sufficiently in just 3 and a half weeks (a week of which was in intensive care). She will continue to need injections of GCSF and platelet and blood transfusions over the coming weeks, but as these aren’t needed every day and she is doing so well, we are able to go home!
The girls have adored being together today – they really have. Anna has been getting the ‘best big sister award’ for carrying Eloise’s NG bag and moving it as needed, so they can happily play together freely. Eloise continues to have NG feeds (but is eating small amounts as well) and has a ridiculous number of medicines, but she’s happy and getting stronger. Eloise can say all the terminology ‘tube, medicines, flush, obs (i.e. for the nurses observations), wiggly, temperature,’ – she might not be great at naming animals/vehicles, but she knows a lot of nursing words!
Unfortunately we are still waiting to hear about when we will go up for Proton beam therapy planning in Manchester. It will certainly be by the week of the 17th, but our oncologist is hoping for it to be this week coming. Please pray for this!
How do we feel?
- We are relieved to have made it through this hurdle!
- Encouraged that Eloise is doing so well. She continues to amaze us (and health professionals) with how strong she is – we are so grateful for this, and it also means there is the possibility (stress – possibility!) of future treatment post-proton therapy, as she is so physically well.
- Grateful that we are all home under one roof. We have cherished the times we’ve had together today.
- Disappointed we’ve not heard about when Proton therapy will start – but enjoying the time we have at home together in the meantime!
- Happy to be together, having got through another tough period – but equally knowing that the fight against this brutal ETMR is not over – and that relapse is still likely (and there being very limited/no treatment options for relapse). It’s a fine balance to be grateful, hopeful, optimistic and faith filled, whilst also knowing the reality and severity of the disease. That tension is very real. But for today – we have enjoyed the day and never take it for granted!
For those that pray:
- Give thanks that Eloise is doing so well and is home! She hasn’t had any scarring (yet) from the thiotepa and is active and strong. She continues to have no partial focal seizures.
- Give thanks that the girls have been able to see each other and play. Anna has really loved this and has been brilliant. She’s so happy to have Eloise home.
- Pray that we hear from Manchester and are able to get up for proton planning this week. We really need Eloise to start proton therapy really, really quickly (within days really).
- Pray that the high-dose chemotherapy has done what it needs to do – killing any remaining cancer cells.
- Pray against relapse – relapse (or new ETMR tumours) can happen at any point, including during chemo/proton treatment, so please pray for protection against this.