Tired but home

Eloise was discharged from hospital yesterday and is happy to be home.  She is very up and down with tiredness (it’s very unpredictable – one day she is tired, the next she has more energy), and today she has mainly just wanted cuddles.  We have Mel’s brother and sister-in-law staying whilst they have some house renovations done, and they have brought their cat ‘Boris’ – who Eloise adores, so Eloise is in her happy place!  Eloise’s two favourite cuddly toys that have been to every surgery, scan, chemo, GA etc are ‘Raa Raa’ and ‘Boris’ (a soft cuddly cat, that looks like Boris) are pretty famous with Doctors and Nurses 😊  

Eloise’s appetite has returned a little bit, but as she’s lost quite a bit of weight over the past few weeks and is still eating less, so she’s having even bigger NG feeds at night.  She’s also having one of her oral agents twice daily, in addition to her other medication.

We today chatted with the proton oncologist/radiologist, who reminded us that it is early days in terms of her scans/being NED.  The next two scans (they will be approx. every 3 months), will be crucial.  He also said that Eloise’s tiredness could continue for months – even without having the chemo that she is having. 

How do we feel?

• Constantly ‘winging it’.  I just had a call to say one of Eloise’s bacterial tests came back positive, so it’s another set of antibiotics – hopefully these can be oral and not IV (and therefore at home and not in hospital).  A second trip to our local hospital already today…
• Grateful that Eloise had her first dose of intrathecal topotecan and is ok.  Grateful that she had it in the UK.
• Vaguely hopeful that we might go on holiday to Devon on Friday.  We are planning for community nurses to come in the morning, so we can go for nearly a week in time to get back for various appointments etc.  We have to time journeys around community nurses and meds.  But we take one day at a time and are staying relaxed about it.
• Aware its going to be a long, slow, challenging few months/year ahead.
• Continually aware that cancer sucks…  paediatric cancer sucks.   Brain tumours are beyond awful. And there is no clear ‘end’, and the treatments lead to long term effects that the children, if they survive, have to live with for years to come.  There needs to be better treatments.

For those that pray:

• Give thanks that Eloise is out of hospital and is ok.  Give thanks that she didn’t have any seizures and is home with Anna (… and Boris).
• Pray for Eloise to have energy, despite the longer term proton affects, and that she tolerates this new maintenance chemotherapy and isn’t too exhausted from it.
• Pray that we are able to care for her well –  that we are able to go at her pace, care for her in the way she needs, whilst also doing things with Anna.
• Pray that somehow, we might make it to Devon for a few days, with no hospital stays 😊