EXCERPT FROM EMAIL TO FRIEND This friend emailed to ask what she could do for us – a common question from friends and family. We are lucky to have such strong support. “We're getting great care, from pretty well every department in that hospital. Talk about straining the health dollar! I can't think of anything we need, but I can tell you that each time I receive a little email like yours, it boosts my spirits. It really does help to know that people are thinking of us. And Rose is, indeed chubbing up beautifully. The transplant surgeon visited her last weekend, and says he's very impressed and encouraged. He may even decide to transplant her before she hits 8 kilograms.”
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EXCERPT FROM EMAIL TO A FRIEND Another long lost friend, discovered via the internet. This time, the friend is one I lived nextdoor to in 1969! We lost touch in about 1981. Lots for both of us to catch up on. “Life's really busy because our baby, Rose, is sick - lots of hospital admissions in her little life, and she has been in Royal Children's since start of December. Her dad, Shane, or I stay in there with her every night, while the other sleeps at home with the older two kids. I'm about to head in to hospital now. Rose is in an isolation room, with only family allowed to visit, because of her lowered resistance to infection. The single room thing is a blessing for us during this long admission, as it has its own shower and toilet. Not many patients in the Royal Children's enjoy such luxuries!( We've had lots of other admissions in the general wards, cheek by jowl with other patients and their carers. I'm a light sleeper, and don't sleep a wink in those c...
EXCERPT FROM EMAIL TO A FRIEND – THE MOTHER OF ANOTHER LITTLE GIRL WITH BILIARY ATRESIA She sent an email asking how Shane was going with his hunt for a cause of Rose's pancreatitis. “Our specialist has us not really focusing on the lipase theories - basically because she says it doesn't change the management of Rose in any case. I think Shane needed a bit of a breather from all the heavy scientific detective work anyway, but I reckon he'll get back onto it if needed. The aim is still: grow, keep well, and transplant. The transplant team want her to be 8 kilograms. Blow me down, she seems to be starting to put on some weight.”
EXCERPT FROM EMAIL TO A FRIEND “. . . as for Rose, Shane reports that she had her most settled night ever. . . He on the other hand couldn't sleep - the only time in recent memory that he's had the opportunity to actually SLEEP alongside Rose, and he had insomnia. Head filled with crazy theories about why Rose has pancreatitis, so he had to hop onto the internet. The doctors are encouraging him to do his wacky research - that's the odd thing. . . Anyhow, who knows - he might find something about pancreatitis.”
EXCERPT FROM MASS EMAIL TO FRIENDS An email to bring everyone up to date, after a very emotional month or so. “ long time off air. . . Still in hospital with Rose, who continues to struggle to gain enough weight to make a transplant a safe enough procedure. We've been in since 2 December, and it's pretty tricky juggling everything, as you'd imagine, but I think we're staying focused most of the time. The adjustment process continues to work away at us. Lots of medical spanners remain in the works for our Rose, the worst of them still chronic pancreatitis. Aaarrgh! They still have no idea what's causing it, and haven't succeeded in stopping it either. Pancreatitis isn't even something that happens in kids with Rose's liver condition, so she has us all scratching our heads, and Shane trawling the internet for clues, night and day. Oddly, despite all the trouble with her kooky pancreas, Rose's liver is kind of holding its own (as much as a liver can, i...
