Phase Two Update

Since commencing phase 2 treatment, Ellie is doing reasonably well. In fact, we would say she’s doing superbly when compared to the trauma of phase 1. The doctors have noted that her condition in phase 2 is more attuned to the norm and what we would have expected during treatment.
 
Despite her numbers being back down to rock bottom, she is in good spirits. Critically, her neutrophils are 0.00 and her platelets are sitting around 15 with blood transfusions every couple of days. Her haemoglobin is also on the way down and she requires red blood products a couple of times a week. This is exactly what we expected during this period after chemotherapy and it is, as we know, a game of closely managing her medications and trying to avoid infection. She is also regularly febrile however, unlike during phase 1 when this was around the clock, she responds very well to paracetamol and so the high temperatures aren’t affecting her too badly. While she is febrile, her temps are low-mid 38’s whereas during phase 1 she was consistently mid-high 39’s and even in the 40’s.
 
Ellie is also quite regularly nauseated however, again, unlike in phase 1, she communicates well and has good periods during the day where she feels well and is chatty, silly, and engages in school work, crafting, and other activities. Many of the nurses who looked after her in phase 1 find it amazing that she is now smiling and actually talking to them! It was a great novelty for the nurses to come in and have a conversation with Ellie. Many of them feel so relived and also a sense of victory that they have broken through with Ellie.
 
Although the aim of the game right now is to avoid infection, we have been in an isolation room for the duration of phase 2 due to a couple of infections. Shortly after being admitted for phase 2, Ellie was confirmed to have Clostridium difficile colitis (C Diff). This is a typical opportune infection that is regularly seen in leukaemia patients who are immunocompromised. It is being treated with Metronidazole and the doctors aren’t too concerned about it. Ellie was also recently confirmed to have Micrococcus Luteus, which was identified in blood cultures taken on 12 April. This is another opportune bacterial infection, which is being treated with Vancomycin.
 
Unfortunately, Ellie’s rash has returned. When she first spiked a fever, the go-to drug for treatment of an underlining but unidentified infection is Piperacillin Tazobactam (Piptazocin). This is the drug that we believed (but couldn’t confirm) was responsible for causing the horrendous traumatic rash during phase 1. When the rash returned, we immediately ceased Piptazocin and replaced it with Cefepime, another broad-spectrum antibiotic with very similar properties to Piptazocin.
 
We knew that because Piptazocin wasn’t confirmed as the cause of the rash reaction, the next time Ellie spiked a fever, they would administer Piptazocin. The dermatologist team suggested that if Piptazocin was actually the cause of the rash, we would see a reaction within 15 mins of administering the drug again. Ellie’s rash came back within 24 hours of the first dose of Pitazocin. Thankfully, it is much milder and less traumatic to Ellie as we immediately substituted drugs. To us, this confirms she is having a reaction to the Piptazocin however, there is some debate among the doctors. Some of the team are not convinced Piptazocin is the cause, whereas others believe it probably is. The best explanation we have is that it is likely a level 3 reaction (whatever that means) to one of the key components of Piptazocin. It is less clear because she didn’t have an immediate anaphylactic reaction and therefore, is not by definition, allergic to Piptazocin. In any regard, they will document it as being a drug related reaction, so that in the future, when she presents to hospital with a fever, Cafapine will be the go-to drug to treat rather than Piptazocin.
 
We feel quite comfortable with Ellie’s current condition and her overall response to phase 2 treatment so far. We’re hoping that we can maintain this level for a few more weeks until her neutrophils start to come back and she starts to recover from the chemotherapy. As a broad target, the last safe moment for a Bone Marrow Aspirate to be taken is day 42 (post phase 2 chemo commencing) so our window is 05-12 May. With any luck, Ellie will have recovered to a satisfactory level by that time so that we can complete the BMA and go home for a week or so (fingers crossed) while we await the BMA results. Phase 3 will commence shortly thereafter.
 
PC