A Rough Couple of Weeks for Ellie

It’s been a rough couple of weeks for poor Ellie. She’s really feeling the effects of the chemotherapy this time around. She recently finished a five-day course of high dose Fludarabine and Cytarabine (FLA) and her counts have almost hit the bottom of the trough. She has been febrile for over a week and very symptomatic. Her most obvious symptoms are constant nausea (though thankfully not much vomiting), chemical conjunctivitis (caused by high dose cytarabine), and fatigue. She is also retaining a lot of fluid, particularly in her face which is very swollen, especially on the right side where her right eye is almost swollen shut. When Ellie is feeling these effects she starts to shut down, so she’s largely been non-verbal, and when she is verbal, it’s not pleasant! I don’t blame her though; I would be the same if I was that sick.
 
Given Ellie’s constant fever, the team was concerned that she had another infection. However, after four tests, nothing has grown on the blood cultures, so they have now tested for a viral infection, but we likely won’t see the results for a couple more days. We think it’s unlikely she has a viral infection and is more likely to just be the effects of the cytarabine.
 
It’s a fine balance to determine how much chemotherapy to administer in relapsed AML. I have previously said that the treatment plan in 2021 was all per the MyeChild protocol so we were well prepared. After relapse, there isn’t a set protocol and its dependent on the individual and how they respond. When the team told us the plan for one round of FLA(G) and then maybe a round of FLA, we questioned why they weren’t planning on stronger options to ensure Ellie stays in remission. It was explained that last year she was essentially given as much chemo as the human body can handle which is much more than adults are given. Now she needs more. So, it’s a challenge to find the balance – just enough to achieve remission, but no more to reduce the risk of significant long-term issues. The cumulative effect of chemo is now obvious to us given Ellie’s reaction to FLA when she handled it quite well in the last two phases of consolidation therapy last year.  
 
We still don’t know a lot about the bone marrow transplant however, we should have a meeting with the donor team soon. The head oncologist indicated that we have a ‘cord donor’ lined up for Ellie which is great news. Stem cells taken from an umbilical cord reproduce into mature, functioning blood cells quicker and more efficiently than stem cells taken from the bone marrow of a donor. This is reassuring given none of us (immediately family) were suitable matches for donating bone marrow.
 
This is a useful link to understand the basics of bone marrow transplant: https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/bone-marrow-transplantation
 
We have lots of questions for the donor team and transplant team, and are anxious to know more. However, as our team keep telling us – one step at a time.  
 
PC