Lauren came home from hospital today (Easter Sunday) after a few days of chemo which went perfectly to plan. Only hiccup this trip was her Dad giving her raspberry ice cream topping to drink instead of raspberry cordial!!! Will only happen once (no-one told me it was in the same cupboard)!! Since the last email update she's been in hospital a few times, but more because of fevers and associated infection rather than treatment. At one stage the infection was feared to be tumours in her lungs (shadows appeared on a scan, since negated) or infection which could have been bacterial (better option) or fungal (wasn't the case but a problem if it was as could have put the transplant dates back). We went from going to have a lung needle biopsy the day before going to Sydney for our day visit to Sydney Children's Hospital to everyone comfortable that it must be bacterial as her fever quickly disappeared. Turns out it was light pneumonia.
The trip to meet the Sydney Oncology team who will manage Lauren's Bone Marrow transplant was 'interesting', 'confronting', 'scary'. Basically they don't dress it up at all and spell out ALL the possible consequences both during the transplant and after - you can guess some of the conversations mainly centering around mortality and side effects eg. Lauren will not be able to conceive after the Radiotherapy treatment (don't need to spell these stats out here, just picture her fit & well & full of life in your images). Interesting, stats don't mean a lot when you're not in direct control of the rolling of the dice!! On one hand a 13 year old shouldn't need to be involved in these discussions but then Lauren needs to be if she's to work her way through what's coming up. The team there have obvious experience in this area and certainly give you confidence (I think).
One of the highlights from her recent stays in hospital, was meeting Frank Woodley of Lano & Woodley fame. (The famous DVD doing the rounds in Brookman Ward, cheering up the older kids thanks to Harvey). We had to cancel attending his show at the
Adelaide Fringe one Sunday because Lauren spiked a fever and had to be admitted to hospital. Frank to his credit said he'd visit her which I must admit I thought wouldn't happen, until one day there was Frank sitting in Lauren's hospital room having a chat. What's more he rode his bicycle there in 40 degree heat!!! Last Sunday, she got to see his show "Possessed" compliments of Frank and he took the trouble to come out and speak to Lauren after the show. What a great guy and a great show. Lauren laughed HEAPS and forgot all about her treatment for a while. Was doubly good as this was the Sunday after the Sydney trip.
The transplant is planned for May 7th/8th and we should be going there around April 21. Oh yeah, for those who don't know, a 22 year old UK girl has agreed to be the donor and is a 10 out of 12 match, which is considered good. What makes a 22 year old girl go to the trouble (and it does take some effort) of putting her name on the Bone Marrow registry to help someone?? - we'd all like to find out one day if we can meet her - obvioulsy another special 'kid'. Apparently we can't meet for 12 months and then only if both parties agree. Lauren has already earmarked my frequent flyer points for a trip to the UK to meet this special girl. I can certainly see it happening as long as the donor agrees to it.
We've had a friend and Pastor volunteer to shave his head as a fund raiser for 3 charities. Ponytail and all!!! We'll have to get a before & after photo and post to the site listed below. Rob is planning this for early May and we'll put details on a future communication.
Also, this is the last email communication we're doing for these updates. If you're interested in reading future updates please go to www.laurenkupdates.blogspot.com You don't need to be a member nor register to access this site. (Save it to your favourites if interested). This will allow us to put photos on the site and allow all all our friends including the nurses in Adelaide to see Lauren's progress in Sydney. Thanks to Cath for this tip/suggestion.
Bye for now, see you at www.laurenkupdates.blogspot.com in future,
Michael