The last month has been a little rough for Ellie, adjusting to changes in her medications. Since coming off the Prednisolone steroids, things haven’t been as smooth as we hoped. It’s obvious to us now, just how much the steroids were doing for her. The purpose was to prevent GvHD however the side effects included mood swings, huge appetite and others as we’ve spoken about. Since stopping the steroids, Ellie has regularly been nauseated, vomiting, diarrhoea, and generally feeling off.
 
We recently increased her anti-nausea medication as she was struggling to hold anything down. She vomited so much that she brought up her nasogastric tube. This was obviously a little distressful for her, as she was vomiting while the long tube which was in her stomach was now hanging out her mouth. We quickly cut the long end and pulled the rest out through her nose. It was a bit of an ordeal at bed time!
 
After a few days, we had the NG tube replaced, which also isn’t a pleasant experience. However, a few hours after getting home, Ellie vomited it up again. Back to square one. We cut and pulled it through her nose again, and then had it replaced a few days later. So far it has remained in place; let’s hope it stays that way! We think the NG tube will need to stay for a few more months until Ellie no longer needs to take cyclosporin; she can drink enough fluid during the day; and her food intake is good enough to not need NG feeds. 
 
There was a period of concern last week when Ellie had blood in her vomit over a few days. However, the team believes she may have a little tear in her oesophagus which is causing the blood rather than anything more sinister.
 
The vomiting, diarrhoea, and blood in her vomit sounded alarm bells for us that GvHD was returning after ceasing the steroids. This has also been a concern for the team however, they have been cautious not to jump into treatment as her symptoms weren’t entirely consistent with GvHD. However, things escalated over the last week as the diarrhoea and vomiting hasn’t improved, Ellie’s weight has been dropping, and now she has a rash starting to reappear.
 
The head oncologist declared today that Ellie has GvHD again and has ordered us to recommence steroids. His plan is to ‘go hard, early’ to kill the T-Cells that are attacking Ellie’s gut and skin, and then wean back from the steroids ‘after time’. Ellie will commence steroids tonight, around four-times the dose she was taking when we completed BMT. This also means Ellie will have to continue taking cyclosporin. Prednisolone steroids and cyclosporin are two of the key medications that have long-term side effects, so we had hoped to stop taking them as soon as possible. Now, it looks like she may need to take them for at least another 2-3 months.
 
This is a significant regression in Ellie’s recovery which is clearly disappointing. However, the silver-lining remains that GvHD likely also means a Graft vs Leukaemia effect. Therefore, the graft should also be attacking any remaining leukaemia cells. The other silver-lining is that Ellie is still home with us, and in pretty good spirits. She’s doing full days of school via her robot, and next week will participate (Robo-Ellie presence) in the school assembly/concert for Grand-mother’s Day.
 
PC[...]