Donor T-Cell Time

Shortly after our last update, Ellie had surgery to remove the large Post-Transplant Lymphoma Disease (PTLD) lymph node in her neck for testing. Unfortunately, by that stage her condition had deteriorated so she was re-admitted. We’ve been back in hospital for over a week now and I think we’ll be here for quite a while as there are several issues at play and we’ve had a few scares over the last week.
 
The removal of her lymph node went reasonably well, though there was some question about whether she was stable enough to have the surgery. The surgery went ahead and they were able to remove the majority of the lymph node. However, for the next 48 hours Ellie was in an extreme level of abdominal pain despite being heavily medicated, and extremely nauseated, vomiting considerable volumes of bright green, and then bloody vomits.
 
For several days her pain and nausea were not under control and we had no real explanation for what was happening. The current thinking is that it’s all related to the PTLD in her bowel and throat. After a few days of changing medications to try and find something that worked, we eventually got her pain under control by switching from Fentanyl to Hydromorphone PCA, and a few other pain medications. She is now basically back to having about a dozen medications running through her central line around the clock, plus TPN and nasogastric feeds. It very much feels like being back to square one. Other symptomology includes a head cold which she’s had for months. No immune system means she can’t get rid of it. She is terribly congested, can’t breathe through her nose, and she has fluid in her ears. Her hearing is so poor we have to speak very loudly and so she can lip read. She also can’t hear herself speak, so when she talks she sounds like she’s deaf.
 
It's also now evident that the first plan for treating her EBV and PTLD has failed. She has shown no clinical response since the Rituximab infusions commenced and her EBV count has continued to increase considerably. There were a few days where we thought we had some success as her bloods showed no signs of EBV. However, it turned out they were actually not HER bloods, but a different Ellie Carter, incorrectly entered into her profile. But we won’t talk too much about that. They were very quick to lodge an incident report, and we’re just thankful that no decisions were made to alter her treatment based on the incorrect information.
 
The good news (sort of) is that the results of the lymphoma biopsy confirmed PTLD, caused by her EBV, and not a more sinister type of cancer. Granted, the PTLD diagnosis isn’t good news but at least it isn’t a more sinister lymphoma which would be bad news. We’ll take what we can get at this point.
 
The new plan for PTLD treatment is the donor Cytotoxic T-Cell Lymphocyte (TCL) treatment. After speaking with one of the head oncologists, we’ve since learned that this is a real opportunity. I’m not aware of it being performed in Australia before and we only have access to it because our oncologist has some experience performing it in America, though as I understand, it’s only been performed in around 500 patients. Our oncologist was part of a study which used CTLs to treat EBV with good results. The theory is, the donor T-Cells will boost her immune system for a short period of time and target the EBV and PTLD, hopefully eradicating it. We have secured 6 batches of infusions which are given in 3-4 week intervals and the donor T-Cells eventually die after around 6-8 weeks. While an opportunity, it also comes with risk. Cytokine Release Syndrome (CRS) and GvHD are the main ones were concerned about. There’s also the risk that it doesn’t work which would make us almost out of options.
 
Since the first infusion of CTLs on Friday, Ellie has been highly febrile, has respiratory difficulty and significantly elevated CRP (inflammation) markers. She’s now reliant on oxygen and we had a scare yesterday morning which almost resulted in another ICU admission. She’s since stabilised but we don’t really know what the cause is. By now, we’re very used to being told ‘we don’t know why this is happening’. This particular incident could be the CTLs, PTLD, EBV, or a new underlying infection that is brewing. We’ve changed up her anti-biotics and anti-fungals again and added some broader-spectrum anti-biotics to be sure. So far, nothing has grown on her cultures, but a chest x-ray shows some minor collapsing of her lungs. This is likely the reason she is now reliant on oxygen however, we still don’t know the cause of the other reactions.
 
It’s a difficult time right now, and we can see Ellie deteriorating. We’re just hopeful that the CTLs have an effect and give Ellie a chance. If not, our last chance could be more chemo but I know there are serious questions about how much we could/should give her at this stage.
 
On a brighter note, Ed Sheeran visited the hospital yesterday. He wasn’t allowed to come up to Ellie’s isolation room and Ellie wasn’t allowed to go down to the Starlight Room to watch but the nurses arranged for him to say a few words to her. He said “a big hello to Ellie Carter, I’m sorry I couldn’t come up to see you but hope you’re feeling better soon” which was televised on the internal hospital TV network. Of course Kara took a video of it all, and then the video of Ellie and the nurses dancing to Ed Sheeran was sent back to the Starlight room for Ed to see and that was also televised on the hospital TV. Ellie was very chuffed by this and it put her in good spirits for the rest of the day. The ward was buzzing all afternoon.
 
While clinically, Ellie is not doing so well and she’s under High Acuity care, she’s surprisingly in good spirits. Since her pain and nausea are under control, she’s alert, talking, eating, and maintaining a sense of humour. Despite everything else going on around her, it makes a huge difference when she’s in good spirits. There are nurses on the ward who have literally never heard Ellie talk in the last 2 years and they’ve been coming into the room just to have a chat with her.
 
We continue to look for the silver linings, but they appear to be fewer and fewer. We’re doing our best to stay positive and are hopeful that CTL therapy will give Ellie the boost that she needs.  
 
 
PC