Relapse Journey

Day 33: Some days we feel defeated

Day 33: Bella has had an terribly rough 48hrs. Extreme abdominal cramps which required grading up in her pain meds to morphine boluses. Nausea followed by large vomits of bile. Buscopan charted to ease cramping & the infectious team have come to review her port. We have been informed it will be removed in the next couple days. They will replace it with Hickman line-readying her body for BMT in July 😱😱

Bella is still febrile 37.7 degrees @ 5am this morning. Bella’s tolerance with febrile neutropenia is 37 degrees (not 38 degrees) as the high dose of dexmethosone (steroids) she is on can mask the true temperature. RCH is running 3 different antibiotics (amicayson, ceftazidime & vancamycine). Full maintenance fluid also going to replace electrolytes etc as her appetite has been compromised due to the infection.

Port needle removed thank goodness (de-accessed ) as this was the point of infection. This was the initial reason we came back in. It looked pretty red & infected once the needle was removed.

Bella has been so lethargic (bedridden ) with zero appetite. Although she has asked for H2O. I hope she turns the corner soon. It’s heart-breaking watching them go through so much, every single day.

Team Bella: some days we feel defeated. Each day presents a new challenge. Relentless. 😩 But we NEVER give up!💪👊

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