Wednesday 28 October 2015

The Royal Children's Hospital Melbourne

Lauren is in Melbourne today to investigate a new treatment/trial (global) which has commenced at the Royal Children's Hospital Melbourne. Sounds like Lauren is blown away by the infrastructure there. Even has it's own Hoyt's cinema!!

Anyway, funny looking back when we came to forks in the road re treatment(s) we went down some tracks, thinking it was the poor cousin within a trial, only to find out now, the fact some treatments weren't selected randomly has actually potentially opened new doors through new trials rather than closing them, which some drugs usage would have done.

The one the RAH gave me an ~88K euro bill for last week turns out is one of the drugs that would preclude us from these current new trials. Thank goodness someone there was arrogant enough not to answer the questions I raised to make an informed decision on paying the bill. Otherwise we might have gone down the wrong path!

This treatment effectively replaces the CAR T-Cell treatment in Washington Lauren was allegedly on the wait list for. No more 'flying under the radar' and hopefully explains why I never put those proposed treatments in the blog previously. Hopefully now we can operate with transparency. Not out of the woods yet, but seem to be possibly progressing again.

On a separate note, New Idea published the #cranesforlauren article last week - page 44 if you have it.

Monday 19 October 2015

Not such good news today

I'm not sure the comment "I have relapsed again" below is technically correct as I'm not sure if we were ever given a remission status, but Lauren's facebook update puts you in the picture. Much happening behind the scenes. Lots of confusion and unanswered questions at the moment being followed up with the right people.

Lil Update: I have relapsed again. Found a lump on my left neck/shoulder area about 2 weeks ago, had an ultrasound and biopsy on it last week and I got told this morning it is leukaemia. Not sure what the plan is yet but I'm having further scans today and a bone marrow biopsy tomorrow to make sure it's no where else. Will let you all know more as soon as I know more. ‪#‎FUCKLEUKAEMIA‬ ‪#FUCKCANCER‬

Saturday 3 October 2015

#cranesforlauren

As mentioned in recent posts, Lauren was surprised this week for her 21st birthday with 20,000 origami cranes and photos from people all over the world wishing her all the best. Below are various news items (television and press) from this week. Unfortunately the 'Cranes for Lauren' group on facebook cannot be sent live and remains 'secret' because of some rule facebook has when membership is over 250. Cranes for Lauren is around 3,800 members.

Been a busy week and the cranes have certainly helped Lauren bounce back quickly from the news her bone marrow transplant (second) is not going ahead next week. We need to clarify the exact position of whether she is in remission or not with her haematologist which will happen in an appointment in two weeks. On the 'old' system of measurement, it appears she is in remission, however with a new screening now available, there are some blast cells still present <1 in 10,000. Will update this stuff after that appointment.

Channel 7 news (Mon night 28/9/15):
https://www.facebook.com/7NewsAdelaide/videos/1048817101815611/?pnref=story

The Advertiser (Tues 29/9/15):
https://m.facebook.com/story.php?story_fbid=10153210363156947&id=92701406946


The Messenger/Adelaide Now (Wed 30/9/15):
http://www.adelaidenow.com.au/messenger/east-hills/celebrities-among-tens-of-thousands-whove-made-birthday-paper-cranes-for-three-time-leukaemia-fighter-lauren-krelshem/story-fni9lkyu-1227547647854

Daily Mail UK (Fri 2/10/15):
http://www.dailymail.co.uk/news/article-3252913/Cranes-Lauren-campaign-fills-young-woman-cancer-s-home-colourful-Japanese-birds.html?ito=social-facebook


Rip It Up (28/9/15):
http://ripitup.com.au/culture/social-media-campaign-for-adelaide-girl-goes-viral#.Vg_VasbMcUX

The Australian:
http://www.theaustralian.com.au/news/celebrities-among-tens-of-thousands-whove-made-birthday-paper-cranes-for-three-time-leukaemia-fighter-lauren-krelshem/story-e6frg6n6-1227547647854

Sunrise Ch 7 (Thurs 1/10/15):
https://au.tv.yahoo.com/sunrise/video/watch/29688643/paper-cranes-carry-a-special-message/#page1

Michael Mills video (summary of day 28/9/15): (This is a great summary of the day
https://youtu.be/igQ5bouICXY

Photographs by Jo-Anna Robinson - Photojo
https://www.facebook.com/media/set/?set=a.509387095877914.1073741871.137573849725909&type=3