So Eloise had her intrathecal chemotherapy yesterday! It was a long day for us both (Mel and Eloise) and she didn’t enjoy being nil by mouth until 11.45am, but we got through the day. Eloise seems to have tolerated the chemo very well with no fever and even came home last night very excited (we call it the ‘I’m not staying in hospital endorphins’)!
In the afternoon we had a useful meeting with Eloise’s oncologist and we’ve decided to slightly reduce one of her chemo drugs to see if it helps with her tremors (up until now, this drug has been increased week-on-week). We are hoping it helps. It was also good to discuss Eloise’s overall health and be reassured that much of her tiredness is to be expected so soon after high dose chemo and stem cell transplant, proton and now her continued active chemotherapy treatment. It was helpful to be reminded that this is a very, very long game and to have realistic expectations.
The next couple of weeks we have various appointments – community nurse visits, meeting with Eloise’s Proton oncologist, speech and language therapist appointments, physio appointments. We are glad Eloise is starting to now receive some of this support ‘in the community’ and not just in hospital, as she is likely to need some of this for the foreseeable future and beyond chemotherapy treatment. We are beyond grateful to the marvellous NHS!
For those that pray:
- Give thanks that Eloise has recovered from her cold and was able to have her intrathecal chemotherapy yesterday. Give thanks for the wonderful Drs, nurses and staff.
- Give thanks that she tolerated the intrathecal chemotherapy well with very few side effects.
- Pray that Eloise gets stronger and that the various appointments are helpful. Pray Eloise’s tremors and unsteadiness improve.
- Pray Eloise continues to be NED!
Please also pray for other families affected by ETMRs. In particular please pray for Savannah (who we mentioned earlier last year as she is 1 month younger than Eloise), who’s cancer has unfortunately spread despite intense chemo and protons. She is enrolling on a CAR-T clinical trial which aims to galvanise the immune system to fight this dreadful disease. Pray for strength as her family are separated and for this treatment to work for Savannah (and for ETMR’s in general, as it would be a game-changer).