After a few months of slowly progressing and not much to report, we’ve had a big few weeks with the exciting news that Ellie is in metabolic remission from her Post Transplant Lymphoproliferative Disease (PTLD). Her recent PET scan showed no signs of PLTD and the team are comfortable to declare metabolic remission. The scan wasn’t entirely cold and there were some areas that required some in-depth discussion with several specialists but they eventually determined the PTLD is gone.
 
The other big news is that Ellie had her central line removed this week. This is another big step towards normalcy but one that does make us a little nervous. The logic behind removing the line was based on metabolic remission and no plan for continued treatment at this stage. However, it’s a little pre-mature as a significant influencing factor is the suspicion of an infection starting to influence the line. Over the last couple of months, Ellie’s line site and the surrounding skin has been very raw and oozy. She’s spiked a few temps and has taken a few courses of antibiotics which have helped but not stopped the symptoms around the line. The line has been in for a year now which is a long time, so the team were keen to remove it. I’m sure if the line was in better condition, we would have kept it for a little longer until we are more comfortable that we’re in the clear.
 
Removing the line is fantastic news however, if Ellie does need more treatment such as a blood infusion, that will require a cannula which is very difficult to achieve due to Ellie’s tiny veins that collapse very easily, turning the whole process into a significant emotional event for everyone. Also, if it turns out the PTLD is not entirely gone, she will need a new central line inserted. We’ve discussed this in detail with the team and all acknowledge there is no perfect decision, and we need to closely monitor things over the next few months. Ellie will have PET scans probably every 2-3 months for a while. We are also hoping that Ellie’s immune system finally starts to kick in as this will prevent any reoccurrence of PTLD. To date, her immune system is still ‘terrible’ as our oncologist describes. We knew it would be around 12 months post-transplant for it to start to develop, but we’re beyond that now and as we know, Ellie has had several complications along the way. For now, we continue to ‘wait and see’ like always.
 
Metabolic remission and central line removal is obviously fantastic news and a big step in the right direction. We just don’t feel that sense of excitement this time around and the belief that everything is finally behind us. We’re very happy but cautiously optimistic. What REALLY makes us happy, is seeing how happy Ellie is. It’s like she has a new lease on life with her line being removed. We often talk with her about not letting cancer define her and to try and turn the negative events into positive influences in our life. She is truly responding to this advice and determined to get on with her life. It’s incredible to see. I think Haley Arceneaux had a significant influence on her, just at the right time a few months back.
 
So here’s an example of just how incredible our little Ellie is. We know that she completed NAPLAN in year three – over two years ago and in the middle of chemo – and she knocked it out of the park. Earlier this year, she did the year five NAPLAN, again from hospital, this time while in protective isolation after a bone marrow transplant. She was being treated for PTLD and in severe pain to the point where she was on Pregabalin and Fentanyl PCA. She was extremely anxious about doing NAPLAN after not having any consistent formal education for the last two years aside from about one hour per day of ad-hoc hospital schooling. Being a perfectionist, she was terrified about not doing well. The school teacher sat with her in isolation to supervise the tests, while Ellie self-administered Fentanyl boluses. Again, she knocked it out of the park, scoring right at the top of the highest banding. We couldn’t be prouder of her.
 
Ellie is super keen to get back into everything – swimming, cooking, wearing regular clothes, and getting back to school. Our oncology team are still nervous about letting her out of the house but we’ve been able to sneak a few excursions in! We even got her into school for a couple of hours for assembly (carefully and wearing masks etc) – she absolutely loved it. We just need her immune system to get moving before we unleash her on the world again!
 
 
PC[...]