MRD Negative and Standard Risk Profile

We finally have confirmation of the excellent news that Ellie’s Bone Marrow Aspirate and Minimal Residual Disease Testing came back as MRD Negative (post C2)! This is fantastic as she continues to be considered in morphological remission with no trace of Leukaemia cells in her bone marrow! We are over the moon and this is a huge milestone as it determines the treatment plan for the remainder of her main treatment.
 
It’s also important to note that the MRD results were assessed using Polymerase Chain reaction (PCR) which is accurate to 1:100,000 cells and is considered definitive. This means Ellie has achieved MRD Negative (post C1 and C2) which categorises her as ‘Standard Risk’ (refer to my post of April 21). Standard Risk means she avoids the highly cardio-toxic chemotherapy and will finish her treatment in phase 3 and 4 with a more standardised chemotherapy treatment plan.
 
Ellie will be admitted tomorrow to commence Phase 3 treatment. She is currently still at home, which has been great, but is due to her blood results not yet showing that she is healthy enough to commence treatment. To commence Phase 3 she needs a neutrophil count of 0.75 however her last count last week was only 0.20. Bloods taken yesterday achieved 0.86 so she’s now ready to recommence treatment. For context, a healthy person’s ANC is around 1.50 – 1.80.
 
Today we also consented for another randomisation as part of the MyeChild Trial. Typically, Phase 3 and 4 AML patients who are Standard Risk are treated with high dose Cytarabine. However, the MyeChild Trial seeks to determine if incorporation of Fludarabine results in better long-term prognosis. Ellie will now be randomised for the two different treatment plans. That said, we understand the difference in the two treatment plans is not greatly significant, that is, they are both relatively ‘standard’ chemotherapies. Fludarabine does come with a slightly increased brain toxicity risk however, this is usually only evident in older patients, not children. Aside from that, we are fairly comfortable with the randomisation and the decision has not weighed on us as heavily as the Gemtuzumab randomisation from phase 1. In fact, we feel fortunate to have made it to consolidation therapy (phase 3 and 4) as we know there could have been many other outcomes.
 
It will be a total of 3 weeks that Ellie has been home during phase 2 recovery (less a number of day visits for bloods and check-ups). Once again, it has been amazing having her home and she’s loving being here with family, sleeping in her own bed, and playing with her sister. So much so that during some horseplay with Annabelle, she managed to rip her nasogastric tube out! I still have no idea how it happened. There was a little yelp and there it was, sitting on the floor. After some initial concern, Ellie thought it was hilarious. We also managed to convince the doctors not to put it back in because she has been eating a lot and taking all her medications orally. We will eventually need to put it back in during the course of phase 3 when she’s not capable of eating or taking oral medication.
 
One final note is that we are continually impressed with how Ellie is approaching her treatment. Her resilience in incredible. She fought so hard during the trauma of phase 1 and the grind of phase 2. We are now very lucky to be in a position to commence consolidation therapy after achieving Standard Risk prognosis. So many AML patients don’t get this far or are diverted to higher risk treatment plans. We now have the luxury of consenting to consolidation therapy randomisation rather than having to weigh our options as Intermediate or High Risk patients. When discussing the next steps and how long we will be in hospital, Ellie is pragmatic and mature. It must be hard for her knowing she is going back to hospital tomorrow for likely another 6 weeks but she doesn’t show it. She’s a fighter and determined to come out on top.
 
PC