Mid-Treatment Update

Ellie is almost 5 months into her main treatment and we believe we are past the half way point. What was originally thought to be a 6-month treatment plan now looks like it will take around 8 months to complete. This is because Ellie has taken longer to recover during phases, with the first 2 induction therapy phases taking exactly 2 months each. We therefore anticipate Ellie completing her main (planned) treatment by October.
 
Ellie is currently around half way through phase 3. This phase consisted of just 5 days of chemotherapy using high dose Cytarabine and the trial drug, Fludarabine. The first 2.5 weeks of phase 3 were relatively smooth sailing. Ellie’s blood counts were relatively high and she was feeling pretty good. She had lots of energy and we were able to explore around the hospital regularly and visit her favourite place – the Starlight Lounge.
 
However, phase 3 hasn’t been without its road bumps and as the head consultant says, “Ellie will always throw something at us that we haven’t seen before”. One of the side-effects of high dose Cytarabine is chemical conjunctivitis. Ellie was battling this over the first 2.5 weeks and her eyes were in a lot of pain and very sensitive to light. She was taking eye drops every 2 hours to keep on top of it while wearing an eye mask most of the day. That was about her only issue for the first 2.5 weeks however, we could see her blood counts dropping quite quickly at around the 2 week mark. She very quickly returned to being neutropenic over the period of a couple of days and she’s now back to being febrile daily and taking anti-nausea medication around the clock to keep on top of her nausea. This, of course, affects her appetite which will soon become a problem if her weight fluctuates as we may need to replace her nasogastric tube to provide her the necessary nutrition. It will also help with her taking oral medication as this is becoming a struggle again.
 
We are also reminded of how we shouldn’t take her (relative) health for granted and we need to remain vigilant about strict hygiene requirements. As mentioned, Ellie was feeling great for about 2.5 weeks while she had a decent level of neutrophils. Then as soon as they dropped, she tested positive for another infection. This time it’s a blood infection - Enterobacter Cloacae. Thankfully, it’s a relatively mild infection, which is sensitive to the two antibiotics she was intuitively treated with – Gentamicin and Cefepime. However, there was a period of time where the doctors couldn’t confirm that she didn’t have a much more serious infection - Carbapenemase-producing Enterobacterales (CPE), which can’t be effectively treated by antibiotics and has a high mortality rate. This reminded us just how sensitive Ellie’s situation is and how careful we need to be.
 
Despite her ups and downs, Ellie is doing really well, all things considered, particularly when we compare with what she has already been through.
 
As we pass the half way point, Ellie has had 19 weeks of treatment, 16 weeks living in hospital, 32 blood transfusions, 23 days of chemotherapy, 5 intrathecal chemotherapy procedures, 10 surgeries (procedures), 4 days in ICU, and 6 infections.
 
One thing that stands out to us is Ellie’s reliance on blood products. They are literally keeping her alive. Kara and I have never given blood before and that’s about to change. We have registered as blood donors and my first appointment to donate is in about 2 weeks. We’re really looking forward to being able to give back, particularly now that we have first-hand experience and understanding of just how critical it is for people like Ellie.

PC