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Maya Shows Us What Strength Looks Like

Tuesday 16th December was a reminder that recovery from ICANS is never a straight line. Maya had been doing so well on Monday with her passive bike ride on the hospital bed, and then at 4:30am the next morning, she spiked a temperature above 38°C and woke me up moaning and groaning.


Monday night had already been rough—the IV machines never stop. Each has two alarms: one saying “Near End of Infusion” (which could be 3, 5, or 15 minutes before—seemingly at random!) and one saying “End of Infusion.” Maya is IV-heavy, some meds 6-hourly, some 8-hourly, some 24-hourly. During the day, the noise blends into the ward, but at night, it feels deafening. I spent hours sleep-deprived, standing there silencing them every few minutes, wishing I could take away every irritation from her ears. HCAs and student nurses aren’t allowed to touch the machines, so it’s me.


As usual, blood cultures were taken, swabs from her rash, cotton wool in her nappy for urine microscopy to rule out a UTI, and an extra antibiotic, Amikacin, added “just in case,” even though she’s already on Meropenem. On top of that, she’s on Aciclovir for viral coverage and Ambisome to cover suspected fungal infections. The rash eventually started to subside as her temperature came down, but it’s a lot of drugs, a lot of monitoring, and a lot of small wins and setbacks. ICANS recovery really isn’t linear—one day she’s doing great, the next she can feel like she’s dropped off a cliff.


But the day did get brighter. Maya was hoisted into her tilted chair (she moaned a little at first), and our karaoke friend Pete came to visit.

She even tried to show him how much she’s trying to move her arms! I didn’t catch it all on video, but I got little snippets, and they were enough to make me beam with pride.


I am endlessly proud of Maya—her strength, determination, and grit never cease to amaze me. She is, without a doubt, the strongest child I have ever known.


If Maya’s journey touches your heart, please share it far and wide this Christmas season. It’s a season of hope, love, and the reminder that even in the toughest battles, courage shines the brightest.


To those that have asked:


PayPal to dellanie_nash@yahoo.co.uk (as a gift)


Santander

D C Nash

Sort code 09-01-36

Account 4957 9984

Reference: Maya’s Journey


Thank you. Thank you. Thank you.





 
 
 

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