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[...]

Just a short update to let everyone know that we finally got Ellie home for phase 2 recovery! She was released from hospital on Wednesday afternoon and we’re hoping to get 1-2 weeks at home before commencing phase 3.
 
We had hoped to get Ellie home a little sooner as she was progressing quite well however, another infection meant she needed to commence a new course of antibiotics. We had previously posted that Ellie was battling two infections – C Diff and Micrococcus Luteus. Those infections were treated successfully and she recovered quickly. However, we then discovered an infection on her skin, which was causing her quite a bit of pain. It took some time to confirm the type of infection while we waited for bacterial swabs, viral swabs, and blood cultures to reveal the source. During this period, she was being treated with Meropentin and Vancomycin, both broad spectrum antibiotics and so the doctors were confident they would be having an effect on the infection. The infection was eventually confirmed to be Pseudomonas Aeruginosa, which is unfortunately resistant to the two antibiotics being administered. Pseudomonas is a less common infection in the oncology ward and our team of doctors needed to rely on the dermatology team to determine the best treatment plan.
 
Ellie eventually commenced treatment with Aztreonam – an antibiotic unknown to the oncology team but recommended by dermatology. To complicate things, concurrent to the commencement of infection, Ellie’s neutrophils began to come back in after a long period of neutropenia. This is what had us thinking that she would be able to come home as soon as the Pseudomonas was treated and it was a good sign that her neutrophils were coming in even though she had an infection. However, shortly after commencing treatment with Aztreonam, Ellie’s neutrophils took a sharp turn downward. Aztreonam was having good effect on her infection however, it was causing neutropenia. One week after commencing Aztreonam, the decision was made to switch to Ciprofloxacin, a similar antibiotic but one which is less likely to affect neutrophils. After changing antibiotic, we immediately saw a sharp increase in Ellie’s neutrophils and we were back on track.
 
While we had technically not reached the normal trigger for home release (0.20 neutrophils) our team decided to release us as they were comfortable Ellie was trending in the right direction. It was also becoming a case of ‘now or never’ as our window for getting home was narrowing. Ellie is booked for her lumbar puncture and bone marrow aspirate on 12 May after missing the window for the 5 May booking due to not recovering quick enough. This gives us one full week at home before the LP+BMA. The plan is for this to be day surgery and all going well, Ellie can return home until the results of the Minimal Residual Disease testing are received and her treatment plan for phase 3 is confirmed.
 
Ellie is, of course, loving being home and we are loving having her home. It’s a full house with the four of us, grandma and Lilly. Ellie was so excited to meet Lilly after seeing lots of photos and telling all the nurses about ‘grandma’s puppy’ who is now living with us. We’re very fortunate to have all of us in the one house for mother’s day and again, its proving to be amazing for Ellie’s mental health.[...]