Relapse Journey

Day 114

Today, Bella removed her inpatient hospital body suit & wore her home life, 7yr old child one. It is the best feeling for a mother to see the transformation from hospital to home. 

Bella’s Berlin wall dissipates and she is less withdrawn, depressed & is so happy to just be herself.

She spent the day with her little friends & I did not connect her to her nasogastric feed. This would hold her back from feeling like a normal kid. I watched as she laughed, ran upstairs, played celebrity head, UNO & did the regular things 7 year olds do. 

As a family going through this journey -it totally keeps you grounded. It makes you grateful for the little things in life, like being able to organise play dates. Our oncology life doesn’t allow for much planning-so I tend to ‘wing’ things last minute. Thankfully it’s the last day of school holidays & some of her closest friends were available to spend some quality time with her before transplant.

Bella has emotionally & mentally been so well on this discharge that we’ve taken only 1/3 of her usual medications. She hasn’t experienced the constant abdominal cramps, headaches & focal point pain (esp. in her legs). Perhaps being in the hospital precipitates the clinical symptoms including reducing one’s mental stamina? When we are in, she requests meds on a 2-3 hrly basis. In the past 2 days, she’s not even asked for ANY pain mgt (I have 14 diff meds in my medical bag to help her manage the various side effects of treatment ). We even managed a Hospital in Home (HIH) nurse visit today at 12pm to administer the Ampho Liposomal-all the while having lunch! Multi-tasking is our middle name! 😂😂

Team Bella: We  home life. Friends are the best medicine. 👭👭👭👭

 

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