Beautiful Brain

It’s been a while since our last post so we wanted to check in and let everyone know that Ellie is progressing well. She’s getting stronger every week and seems to be feeling happier and more comfortable with herself.
 
We have definitely seen her mature considerably this year; she’s taking more responsibility in her schooling and learning, showing more emotional intelligence, and obvious awareness of her treatment and mortality – which she speaks about. It’s quite eye-opening to hear a 10 year old verbalise understanding of her mortality.
 
Earlier in the year, Ellie was really struggling emotionally and had verbalised that she wasn’t happy and wished she could trade places with anyone else. She certainly had some very difficult. However, over the last few months, her health has been improving weekly and her emotional state improves with it. She’s enjoying seeing her friends for weekend playdates, talking with Annabelle, and now even loves cooking with Kara. Her strength is also improving well, and she no longer needs the wheelchair to get through the hospital – she can walk the whole way which is a significant milestone.
 
In terms of her treatment, there isn’t a great deal of change; it looks like we will continue CTL immunotherapy for a while. We did have a scare a few weeks ago which thankfully turned out to be a false alarm. Ellie had a PET scan to check progress and the impact of CTLs on her PTLD which we know is still present. Interestingly, around that time we had noticed some regression in nausea and diarrhoea symptoms. The PET was conducted on Wednesday, and on Thursday they called to say we needed to come in for an urgent meeting on Friday. That is never for good news.
 
Our oncologist explained that the PTLD is clearly still throughout her stomach and bowel and there didn’t seem to be much change since the last PET scan. It seems as though the CTLs had good affect early, but the results had plateaued in recent treatments. More concerning is the fact the PET showed what appeared to be some new activity around the base of her skull. This had the team particularly concerned given Ellie’s previous AML chloroma in her brain. They weren’t exactly sure what it was but had concerns it could be something more sinister “eating the bone in her skull”. Our oncologist can sometimes be a little more descriptive than is needed…
 
The team ordered more CTLs at an increased dosage and an urgent MRI. Thankfully, the MRI showed no signs of PTLD at the base of Ellie’s skull, and no mysterious ‘skull-eating’ cancer. Interestingly, the increased dose of CTLs seemed to have significant and immediate effect on Ellie. Her diarrhoea and nausea symptoms subsided within 24 hours and she was feeling much better.
 
Also interesting, the MRI gave us a clear image of Ellie’s brain so we could see what is happening in the area of her previous AML chloroma. Turns out she has a big beautiful brain! In the image attached, you can see only the slightest scar tissue where the chloroma was. We can’t tell you how reassuring this is. It’s something that still haunts us – whether we made the right decision not to agree to brain radiation therapy.
 
Since the last dose of CTLs of increased strength, Ellie had been doing great. We joke that it’s the magic dose of CTLs! That said, we only have one dose left which Ellie will be administered in a few weeks. The team still say they don’t know why the PTLD is persisting, nor do they know exactly why the CTLs work the way they do. However, all agree that if its working, let’s keep doing it. I think it’s likely that unless Ellie’s next PET is completely clean, they will order more CTLs, though this time, from a different donor which comes with some risk. The only alternative is more chemotherapy which, was being discussed if the MRI results weren’t good.
 
Chemo is clearly counterintuitive right now. The problem is the PTLD is hanging around because Ellie doesn’t have an immune system. The CTLs – donor T-Cells – are effectively artificially boosting her immune system. Chemo would kill the PTLD but also destroy any recovery her immune system is trying to make, setting us back a long way.
 
It’s easy to fall into complacency – pretending everything is almost normal – until a Thursday afternoon phone call saying we need to come in for an urgent meeting, slaps you right back into reality.
 
The important thing is right now, Ellie is doing great and feeling great. She impresses us every day with her intellect, determination, and sassy wit. And she is HILAROUS. There’s not much that makes me burst out laughing these days, but Ellie comes up with the craziest funniest things sometimes – usually paired with an impromptu theatrical routine for effect.
 
We feel like we’re in a steady routine now, and Ellie’s continued progress has us feeling the most hopeful we’ve been in a long time. We’re enjoying having her home, watching her grow, and only thinking positive thoughts.
 
PC