Relapse Journey

Discharge Eve – Day +43, BMT #2

Pre-B, ALL Deletion p-16, Standard Relapse, Day +43 BMT #2, 107 days in the transplant ward (3 months, 7 days), 230 days since relapse.

Papa & Bella playing their favourite board game Monopoly at the moment. It’s addictive-they’ve played it daily since last week!

Tis’ the eve before discharge.

Nearly three quarters of 2017 have been spent inside RCH. 😣 I can unashamedly & unequivocally say that tomorrow will feel like Christmas for our family. 😍

We are so, so proud of what Bella has accomplished. She has faught against all odds, to engraft (we did not have a great prognosis going into BMT #2). Her little body persevered & here we are tonight. On the cusp of being released from the 4 wall confines we’ve called ‘home’ for the past 15 weeks. Bella, a geneticalledy improved ‘chimeric’ human being. Diseased bone marrow replaced, new healthy donor Tosh (Dad)’sΒ marrow in.

Through lots of blood, sweat & tears, Bella is going home! She was weaned from the intravenous (IV) pole this past week. No longer attached! Although reluctant at first (she was scared) a feeling so alien to her-to not have the pole following her around like a “third leg”. All +15 medications & to pass down her nasogastric tube & 1 injection along with 5 daily finger pricks (to test blood sugar glucose levels) from here on in. Even though she does not have to swallow them orally, taking loads of meds does cause abdominal cramping/discomfort. It’s totally understandable, her reluctance at transitioning from IV to oral intake through her NG tube.

She has achieved steady progress over the past week. Her stamina has improved, she has started eating/grazing over solids in addition to trophic feeds running at 40ml/hr continuously. Her mood has had a marked improvement once she realised ‘home’ was truly on the cards.😊 We are still struggling to manage her diabetes as the Lantis may be causing her to become hypoglycemic most evenings once she has the injection. It’s mucking up the pancreas, so I am pushing towards a protocol of no insulin injection before we leave 😣 We hope to have an improved plan with endincrinlogy by tomorrow morning!

Thank you once again to ALL of our supportors out there! We did not do this alone! πŸ‘£β€β€β€β€

Team Bella hope all our family & friends had a lovely Melbourne Cup holiday & that you backed a winner!

Bella might be galloping out of Kookaburra ward tomorrow! πŸ˜‚

Team Bella : Never give up! πŸ‘Š πŸ’ͺ

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