Post from 31/07/2008 - 7 years ago today!!!...........Update #25. Day Zero. Transplant DONE!!!!!

Transplant has been completed (Day Zero) around 2:40pm - 3:05pm EST. Hard to explain the feeling, but all done and Lauren sat through it talking to the team carrying out the procedure. She's surprisingly well right now, but we've been warned she won't remain like this and is now neutropenic (zero resistance to infection). She's still on morphine to manage the pain associated with Mucositis (see Update #22). The good news is no more Chemo!!!!! Yeah!!!!

Now we sit and wait for her new stem cells to engraft and reproduce like 'rabbits' as Kathryn said through a text message to Lauren. The next 10 - 28 days are key and her blood counts will be closely monitored to see what is happening with the formation on new cells. Graft V's Host conflict is a neccessity but hopefully won't be as bad as some stories we've heard.

By the way, anyone who saw "Saving Kids" on Channel 10 a couple of months ago, where a young boy was having a bone marrow transplant - the room they filmed the boy in is the one Lauren has now - a bit of trivia. We're also next door to another Adelaide family, Louisa, who may be going home soon, after a successful transplant.



HB 74
WBC 0.05
PLT 35
Neutrophils (N) 0.0

7 Years today since Lauren's first bone marrow transplant in Sydney

While we're waiting for remission to go ahead with Lauren's second stem cell transplant here in Adelaide, today marks 7 years since her first stem cell/bone marrow transplant in Sydney. No dinner tonight to celebrate another year of living without leukaemia. Next anniversary will be 1 year after her successful second stem cell transplant.

7 years ago today at Sydney Childrens Hospital, Randwick

31/07/2008

Update Last dose today, by Lauren

So today is the day I complete the second and final cycle of IZOTUZUMAB! Yes I am nervous but my leukaemia counts in my blood have remained below 1 for a while now so let's hope this final dose is what knocks my marrow completely clean and keeps it clean for 3 weeks!!! Next Tuesday I'll be going in for another bone marrow biopsy to see if IZOTUZUMAB did what it was meant to do (fuck my cancer/be a cancer slayer). And as soon as I know I'll try to update everyone. But I have this good gut feeling I am going to get into full remission with this drug and stay there. And even though I'm still very nervous about everything, I somehow have some peace of mind with this gut feeling I have been having. Let's hope my intuition is right and not just hopeful thinking...

As for everything else - I have been home and enjoying it. Cooking, movie watching, starting to get back into reading my acting theory books and surfing the internet (because I actually have a decent wifi connection now) are some of the things I do among all the appointments and tests I go to throughout the week. I've also started a transplant conditioning program with the youth cancer service because when you've been hospitalised for as long as people like me your muscles become de-conditioned so this program helps to get back some of that normal muscle strength. Then during transplant the program aims to try and maintain some or all of that - and new research is coming out about how beneficial it is, especially for youth patients, in the success of a transplant to maintain that conditioning so that's exciting as well.

I've also been trying to rest up a little because even though I'm home, I'm still not feeling great and that's why when people have asked to visit me or catch up with me I've said no. Also the weening off steroids is another thing completely and very uncomfortable at the moment. So if I say no it's because I don't want to see you when I'm sick - I wanna see you when I'm fully Lauren again and feeling good in myself. But the support I'm receiving from everyone is amazing and I can't thank you all enough for being there for me and all your lovely messages and tags on bacon posts (even though I still think bacon just as bacon is the best way to have bacon) and comments and likes. I see them all and it means so much to me so thank you.

So here's to the last dose of IZOTUZUMAB so I can get into transplant and get back to living the life I want and catching/partying/living it up with all of you guys again!!!! ‪#‎IZOTUZUMAB‬ ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬

Feeling like I'm Home Sweet Home - by Lauren

I AM FINALLY HOME! The doctors are happy with how everything is going and how my body is dealing with everything so today I finally got discharged from hospital! Will be going in as an outpatient to receive IZOTUZUMAB from now on. Feels amazing to be home and I just can't wait to sleep in my own bed tonight and hopefully in the coming nights hear some rain on the roof!! And no more hospital food - and yes more bacon (wink emoticon)

Anyway, for those who want to know more about the results of the bone marrow biopsy; unfortunately because I have had so many biopsies in the past most of what they extracted is just scar tissue (fibrosis they call it) so they don't know exactly how well the drug is working at all. Although, they did say that the leukaemia blast count was obviously lower than what they started with and that is what we are starting to see in my blood tests - yesterday they couldn't even put a figure on how many blasts were in my blood because there was only 1! Today it's gone back up to 2% so here's hoping the final two doses of IZOTUZUMAB in the next two weeks just smashes those pesky shits out of my system and puts me into full remission! And then if that happens the plan is 3 weeks for my liver to take a break from everything and then straight into transplant and then hopefully living a healthy life cancer free!

However, If for some horrible reason the drug doesn't get me into full remission or the leukaemia comes back within those 3 weeks I have to wait to give my liver a break, my doctor is looking into what's called Carr t-cell therapy. It's only available in America at the moment but has has had really great results for people like me who keep on relapsing with my type of leukaemia (T-cell Acute Lymphoblastic Leukaemia)! Basically in a nutshell they take my immune system cells (t-cells in particular) and genetically modify them with special drugs to recognise the leukaemia and therefore kill any and not let any grow in the first place. And even though I'm am hoping I will not need this option it's good to know there's still options there just incase.

But for the meantime it looks like IZOTUZUMAB is working it's sweet fuck leukaemia magic - lets just hope it's got enough fuck leukaemia gusto in the last two doses for full remission and to last 3 weeks afterwards!!! Yep you got it, I need a yoga instructor who can teach me how to criss, cross and contort my whole body cause believe me I'm trying to cross everything at the moment!! ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬

Update Day 22 by Lauren

LIL UPDATE DAY 22: Unfortunately one cycle of Inotuzumab (that's the special drug I'm having) wasn't enough to get me into a complete remission. Even though I don't know the results from the bone marrow biopsy done yesterday, the fact that there were still leukaemic cells showing in my blood test means there will most likely be some leukaemic cells in my bone marrow still. So, we are going ahead with the first dose of cycle 2 today! (And if you really wanna know it's being administered at 2pm apparently haha)

However, some good news to hold on to - I only had a 4% leukaemia blast count reading in my blood test yesterday which is the lowest it's every been - so here's hoping 3 more doses of IZOTUZUMAB (I love saying it!) completely obliterates the last of these bloody leukaemia cells lurking around in my body! Will do a big update in a few days when I know the results of the bone marrow biopsy and more of the plan but until then I'm continuing my hardest to ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬

Lauren's 'small sample' of 600 photos she has for her room wall in transplant.

Update Day 15 by Lauren

UPDATE DAY 15: Exciting Times Ahead! The third and final dose of cycle one of my Inotuzumab (such a wicked name for a drug) will be administered today and here’s hoping it absolutely obliterates all the cancer cells from my body!! Unfortunately though we won’t be able to tell if one cycle has worked enough until we find out the results of my bone marrow biopsy which will be happening on Thursday this week. And we will probably find out the results of Thursdays test on Monday - Don’t worry, I’ll keep you all posted, but I really do hope that this one cycle has done the trick so please today and Thursday send all the positive vibes/prayers/thoughts/meditations, whatever you have all done so amazingly over the past 5 months for me!! The power of human thinking is something that I will never underestimate so keep it up and thank you thank you thank you! I am so super lucky to have such an amazing network and support of family and friends!! You guys are the reason I’m in such a good headspace and am doing so well! So thank you!

But anyway, yes Thursday for my bone marrow biopsy I will be as high as a kite again under sedation which I have no problem with at all because now that they’re weening me off steroids I’ve become Little Miss Scatterbrain. Actually the best way to describe it is like the squirrel from the animated movie Over the Hedge. I’m a bit everywhere and no where but it’s getting easier with each day. However still craving all the goodies and yes still loving the bacon! As for hospital they have kept me in due to me needing some extra fluids and just keeping a general eye on me and my blood counts because now that the drug is working it is messing around with my normal blood counts a little bit which I’ve been assured is a good thing that they wanted to see at this stage. But as I mentioned in last weeks update - I’m in an awesome room and I have plenty of things to keep me occupied, I’m taking it for what it’s worth. Doing all the things I wouldn’t be able to get away with if I wasn’t here and I feel a little guilty admitting it but I’m loving it! And yes, lots of people have been asking me whether they can come in and visit and even though I am allowed visitors, I really don’t want to see anyone at the moment. When you’re sick and especially when you don’t look like yourself due to all the steroids (I literally look like Theodore from Alvin and the Chipmunks) you just don’t want people seeing you like that, but thank you for all the lovely offers to come in but at the moment I’d rather hide away for a while until I return to normal and then catch up with you all when I’m feeling better and like myself again. I know you guys will understand.

So overall I’ve been good and tracking well. Apart from that it’s just a waiting game. Nothing else to report really so here’s hoping Thursdays results are the ones we want - 0% leukaemia blast count - cancer totally fucked by one cycle of Inotuzumab!! (such an epic name!) ‪#‎FUCKLEUKAEMIA‬ ‪#‎FUCKCANCER‬

Day leave this weekend

Lauren's home for day leave today & tomorrow (Sat & Sun). Not as much emphasis on 'bacon' from her as she's being weened off the steroids. Pigs are relieved, no doubt!!

Leukaemic cells have reduced under the new drug. Still too early to make a call on it. All going well at this stage. Nice day for a drive in the country.