Understanding AML Relapse

Firstly, Ellie is clinically doing well. She’s eating, playing, taking oral medication, communicating well, and is generally in good spirits. This alone is a big win for us in contrast to her first admission in Feb 21. 
 
However, she is starting to feel the effects of the first round of chemotherapy now and is regularly febrile due to having her first infection – Enterobacter cloacae which, is confirmed to be in her central line and her blood but is being treated with high-dose antibiotics. We know from last year this is just the norm when her blood counts are low – which they are and she has zero white cells and neutrophils. We’re now playing the waiting game for her counts to recover over the next four weeks, where the aim is to avoid infection. We know she may still get infections but we hope they are the less-serious ones that can be easily treated with antibiotics.

Her treatment plan remains complicated and is very much predicated on how she responds to the first two courses of chemotherapy over a period of around 10 weeks. It is critical that she achieves remission within this 10 week period to make her eligible for a Bone Marrow Transplant (BMT, also known as Stem-Cell Transplant). We understand that BMT takes around 6 weeks and is followed by 12 months recovery in a combination of in-patient and out-patient treatment depending on how well she recovers. From what we understand, there are almost always complications with BMT as it is a very risky procedure, so we are bracing ourselves for a rough time.
 
Chemotherapy over the first 10 weeks consists of FLAG: Fludarabine and Cytarabine which Ellie has previously had, but in higher dose, and with the addition of Granulocyte colony-stimulating factor (GCSF). GCSF is given immediately prior to the Fluradabine and Cytarabine to promote white cell growth prior to the chemo destroying the white cells and therefore the AML cells. FLAG is generally accompanied by Idarubicin (FLAG-Ida) however this is another heavily cardio-toxic chemotherapy and the team have decided Ellie is at her threshold of cardio-toxic chemo from her first treatment plan, so it won’t be administered this time.
 
The additional complication is the AML chloroma in her brain and the presence of AML in her cerebral spinal fluid (CSF). Our ability to treat the chloroma with intrathecal chemotherapy via lumbar puncture is being challenged by her recent infection. While the initial plan was to conduct two LPs weekly, this has been delayed due to the risk of introducing the infection into her CSF via the LP which would essentially result in meningitis. However, the systemic chemotherapy and initial intrathecal chemo appear to be working as the motor and sensory symptoms in her left arm, leg, and face have improved, if not entirely disappeared.

 We’re also learning about possible treatment options following the initial 10 weeks however, the more we read, the more it scares us to death. I caution anyone who wants to research AML relapse that the results are confronting, so be careful with what you read and how much you really want to know. 

While we think it’s important to be informed and understand the whole picture, we are trying not to think about the statistics and what the studies and data show, and just trying to focus on getting through the first 10 weeks. But the reality of Ellie’s situation is always on our mind and absolutely terrifies us.  
 
One of the oncologists offered some comforting advice: “Don’t worry about what the data shows; its largely irrelevant to how Ellie will respond”. Meaning that every child responds differently to treatment and Ellie will respond in her own way. This mindset is helpful and we are focusing all of our energy on doing everything that needs to be done to beat the odds and get Ellie home. When we’re in the hospital with Ellie, we only bring positive thoughts. We focus on trying to make her time in hospital as comfortable and enjoyable as possible.
 
Ellie is such a brave, determined girl who wouldn’t care about what the statistics say. She will do her own thing, fight in her own way, and come out on top.

PC