Finally Home!

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.

PC