We finally have some more good news – after another 5 weeks in hospital, Ellie has been released home and back to being an out-patient. She has seen some good improvement over the last couple of weeks, successfully weaning off the hydromorphone and several other medications.
 
We are very lucky the team has let us come home as technically, Ellie has not met the criteria for release. She is still regularly febrile and that is one of the key data points that almost always keeps an oncology patient in hospital. We have seen other kids preparing to be released from hospital, only to have their final temperate check show 38.0 and then be told ‘sorry, can’t let you go now’ and then the cycle of antibiotics, blood cultures, and tests starts all over again. We saw this happen to a boy on his birthday! It was devastating for them as the family had a big party arranged for his return.
 
We’ve been released with the caveat that we go back for review Mon/Wed/Fri before hopefully dropping back to one or two days per week. The reason for release is that aside from being regularly febrile, Ellie is otherwise clinically stable. Specifically, her pain and nausea are mostly under control. She still needs oxycodone, pregabalin, and three anti-nausea medications around the clock, but we consider that ‘under control’!
 
Ellie has been febrile since we started the CTL therapy but we have never determined the cause as nothing has grown on her blood cultures and there are no other signs of infection. It’s entirely possible that its some low-level inflammatory response to the CTLs, or just the way Ellie’s body responds to them. No-body can explain it, but also, we can’t rule-out an underlining infection or other problem. While the team have let us come home, they are clearly nervous and not entirely comfortable with it. We know the decision is largely because of the relationship we have developed with the team over the last 2 years; they know we’re responsible people; and they know we live 15 mins from the hospital. This has worked in our favour in the past.
 
Some other key updates are that Ellie’s EBV viral copies have significantly reduced (from around 15,000 down to 1,000); her congestion has reduced; her hearing seems to be getting better; she no longer needs oxygen support; and she’s starting to eat and drink again. In fact, Ellie has practically not drunk any water since her transplant in July 2022, until a couple of weeks ago when she suddenly decided she wanted to. Now she’s drinking around 900ml per day. While seemingly insignificant, it’s a big win as she no longer needs NG fluids over-night. It’s very common for kids to not drink water for many months after transplant.
 
Also of significance is the fact that there doesn’t appear to be any sign of GvHD. This is huge. She has been on steroids for so long to suppress her immune system and keep GvHD at bay. When her PTLD kicked-off, the thinking changed to it being the cause of her symptoms, not GvHD. So effectively, the treatment for GvHD created an environment for EBV to thrive and cause PTLD. Hindsight is wonderful but we understand the team had to treat the probable cause, clearly not the improbable cause. However, it was also possible that both GvHD and PTLD were occurring concurrently. The problem with this is you can’t treat both concurrently. We had to quickly try and reverse the effects of the GvHD treatment to commence PTLD treatment. We were very concerned that GvHD may kick off again during PTLD treatment which would have been catastrophic.
 
While our team can’t actually explain why Ellie is feeling better, clearly something is working. Our thought (hope) is that the CTLs are clearing the PTLD and negate any need for more chemotherapy. Ellie’s had two CTL infusions so far and the current plan is to do another PET scan in about a week and make a decision about further treatment at that time.
 
As Kara has said several times, we’re just thankful for every day we have Ellie home with us. So for now, we’ll just continue to enjoy having the whole family under the same roof!
 
 
PC[...]