Day Zero

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So today is The Day. “Bonemarrowtransplant Day”, as Ned calls it. And it’s been a less-than-ideal, challenging lead-up, as often seems to befall our family. Ned was admitted to isolation on the BMT (bone marrow transplant) ward last Sunday = Day -8. In isolation, he’s only allowed to have Seth, me, Gilbert (breastfed and <6 months old) and 2 other adults visiting; not his sisters. He then had 5 days of pre-transplant conditioning to deplete his own diseased bone marrow and prepare his body to receive donated healthy marrow. On Thursday (Day -4), his 2yo donor sister, Eleanor, started vomiting and developed further gastro symptoms by Friday (Day -3), enough to warrant admission - on a different ward in the same hospital!  The logistical challenge of which parent stays with which child, particularly since it involves a breastfed baby, strict infection control and isolation, has been ongoing, but fortunately, Lucy (who then also developed gastro) was able to stay with my parents. 

Consequently, it’s been a much more fatiguing, emotional week than we anticipated, where Seth and I have been like apprehensive ships in the night, each not seeing 1-2 of our kids for a while, not to mention fresh air and sunlight. We’ve had contact precautions up to our teeth and have had to optimise Eleanor’s health quickly because Ned’s so dependent upon her marrow. We’ve been fortunate to have wonderful nurses and the same transplant team caring for both kids - all prioritising their well-being for this very day. 

Ned’s doing surprisingly well, especially given his heavy chemo on Friday that required frequent (6-hourly and through the night) showers, bedding and clothing changes. Though isolated, nauseated, and no longer wanting any of his packaged-food-only diet, he’s enjoying his new disinfected / sealed Lego, board games and toys, and tolerating nasogastric feeds. He knows his beloved little sister is giving him a precious gift and he shows her such tenderness and care when they FaceTime. 

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“Me-too” Eleanor has just been so so keen to do what Ned’s doing! I guess it’s to be expected given she was born into this cancer world and has grown up around it. She’s always wanted to “go to the doctor”, “have a blood test”, “go to Ned’s theatre”, “eat MY hos-tal food”, “sleep in MY hos-tal bed”, and has perfectly obliged us in everything. She’s especially enjoying “There’s a Hippopotamus on My Hospital Roof Eating Cake”, and thinks there’s a hippo sitting up on the roof above her (great book for hospitalised kids by the way!). She’s now mostly back to her cheeky, grinning, chatty, cuddly self, and stable enough to have the procedure done today. What a beautiful gift she’s giving! 

Lucy’s being a stalwart, resilient older sister, despite missing us all dreadfully, especially hugging Ned.

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It’s been a really tough couple of weeks for her, not to mention the months before when she’s been carrying a lot of this and other responsibilities on her young shoulders. She understands what’s happening, desperately wishes she could give such a precious gift to her brother, but doesn’t complain about not being in that role. We’ve had to reassure her many times how crucial and valued a family member she is and always will be. 

3-month-old Gilbert is still a cranky baby, but now gracing us with occasional smiles and chuckles! Ned is just loving that Gilbert’s allowed into his isolation room. 

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But today, it’s Eleanor who is going to theatre in the morning, having some of her bone marrow aspirated under GA, which will then be processed and infused into Ned, in what looks like a small bag of blood, late afternoon. It is Day 0. We have been told that from now we are to expect anything for Ned, and be prepared for organ failure, ICU admissions, symptoms of GVHD (graft vs host disease), etc, and it will be a minimum of 6-8 week stay in isolation for Ned, if uncomplicated. Fortunately he’s having the gold-standard sibling transplant - and yes, his blood type will change to hers! Restrictions, reviews and complications will continue for years. 

Today is Day 0, and time is ticking. This is a momentous day for our whole family, especially so for our darling Eleanor and our dear Ned. 

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“He gives strength to the weary... those who hope in the Lord will renew their strength.”  Isaiah 40:29-31