Today Eloise went back into the Royal Marsden for some blood tests, a few other checks and to be discharged. Disappointingly her neutrophil counts had dropped, so she needed another GCSF injection – but after a few hours of discussions, she was allowed home as ‘is otherwise doing so well’ (I was nervous when another night in hospital was suggested…).
Unfortunately this has also had a knock-on for Eloise getting to Manchester for Proton beam therapy planning. We have heard that this might be next week (Monday 17th) but the Christie Centre in Manchester will only take Eloise if her counts remain stable and she doesn’t require another GCSF. Eloise has another blood test on Wednesday – so please pray her counts remain stable, so she can get to proton planning.
How do we feel:
Disappointed – we had really hoped to get to Proton planning this week. We know that ‘days matter’ with ETMRs. We are so grateful that she has been accepted for proton therapy on the NHS but feel disappointed that the system is not being flexible and can’t act faster when needed. It doesn’t feel a very good use of resources to spend all the money on proton therapy, but fail to do the treatment at the opportune time. We are obviously nervous that any delay increases her chance of relapse…
For those that pray:
- Thanks that Eloise is doing so well – she has been so full of life and energy.
- Pray that Eloise gets to Manchester for proton planning in the next few days. Pray that Eloise’s counts are stable (e.g. blood test on Wednesday) and nothing stops her getting there as quickly as possible. Ideally this week…but at the moment that doesn’t seem likely/possible.
- Pray that the timeframe between proton planning and starting treatment is as minimal as possible.
- Pray for protection against relapse!