So last week as most of you probably saw I was up in Melbs to get the first step of the trial out of the way (harvesting my T-Cells).
Last Sunday, Dad and I drove up to Melbourne but went pass the Big Lobster (Kingston S.E, SA) and the Big Koala (Dadswell Bridge, VIC) on the way there as I have this weird little goal to see all the official big things in Australia and I heard 'Larry' the big lobster was going to be pulled down at the end of the year due to repair costs being ridiculously high so it's been a matter of I have to see him before he goes! Although I did read in the paper yesterday the state gov has stepped in to fund his repairs. Oh well, we took the opportunity while we had it! If you missed the photos have a quick squiz at my facebook page. (for those without access to Lauren's FB, see photos on previous posts on this blog).
So we get to Melbs safe and sound and we were fortunate enough that the Leukaemia Foundation over there had one of their apartments in Preston free. After a bit of trouble working out the carpark and lifts and the maze of rooms we finally got to our little room and I was in heaven cause the beds were so comfy!!
However Monday, Dad and I were up bright and early as I had to be admitted to the Royal Children's so I could get knocked out and have a bone marrow biopsy and that lovely vascath I talked about in my last update inserted. AND THEY MUST OF KEPT MY UNDIES ON when they inserted it because after I came too (because of the smell of a Maccas Happy Meal Dad had kindly bought me), voila, I still had my undies!
The rest of Monday and Tuesday were like I said - lying around like a vegetable. You're not allowed to weight bear or move or pretty much do anything except for lie down and partially sit up when you have a vascath in. And yes that meant I had to pee lying down into a bed pan which yes was a new experience and I hope will be my last but if I ever have to again I'm buying one of those attachable chick dicks to make life easier.
But I was thoroughly entertained though because Melbs have huge TV/computer things in each room and they also have the Starlight Foundation Channel which basically plays kids movies 24/7. So streamed a bit of Netflix and watched cheaper by the dozen, despicable me etc. on the starlight channel. Also had an acting friend who has moved to Melbs to further her study come to visit and I can't deny but I loved catching up on those TBL family makeovers (wink emoticon)
Also found out on Tuesday that my bone marrow is only at 1.6% so we can't go ahead with step 2 of the trial but we could still go ahead with step 1 which was harvesting my T-cells (again for those who can't remember it's just a white cell/immune system cell).
So Wednesday consisted of me being connected to this machine that whizzed around at a certain speed to collect that particular cell. It's sort of like the gravitron for blood, the process is called Apheresis (I think that's how you spell it), And I'm the third person in Australia to have this particular cell harvested! And they got plenty of T Cells out of the collection!! Wooo!! So those cells will now be frozen and stored until I am able to proceed with step 2 and that will only happen when my bone marrow biopsy comes back with a leukaemia reading at 5%.
That night I was meant to have my lovely vascath out under midazalam (the truth/drunk syrup) BUT it didn't work. So I asked them to just pull the bloody thing out as I couldn't stand peeing lying down one more time and I wanted to change my undies! Ended up not being painful just a very weird and uncomfortable sensation.
Thursday, free from my vascath, they confirmed that enough cells were collected AAAND that Andy Lee from Hamish and Andy was in the building!! So I was able to go and meet him - the conversation starter being me shoving my phone into his face with the picture of him and Hamish with a crane and me being like 'remember this, that was for me!!!' Had a great time hanging out with him - he's so down to earth and veeeerrry good looking!! Shame he's got a girlfriend.
As I was free from the vascath now, I was also able to explore the hospital a bit more and found the patient garden where volunteers take the time out to give kids green thumb therapy which I think is awesome!! So I helped teach them how to make fairy pots out of a smashed up terracotta pot and loved doing so. My inner child just loves this place!
I also had an MRI later that night to check up on how my lymphnodes were doing as I've been experiencing some pain and discomfort with them recently. And just like the whole of this hospital, the MRI room is painted and decorated beautifully as an undersea themed room with these beautiful fish glowing out of the walls made out of fairy lights. It was so enchanting. I'll have to take a picture next time I have to have one.
The results from the MRI came back on Friday and all looked 'normal' as far as the doctor was concerned so they discharged me and then Dad and I drove home.
Will drive up again this Sunday as Monday I have another bone marrow biopsy to see if the leukaemia is at 5% or not and if it is will stay there the week having a number of pre-tests for the trial done. Otherwise, if below 5%, we'll probably drive back on the Tuesday/Wednesday.
So here's hoping my leukaemia has come back enough... (I still get chills when I say it)
#iloveyouleukaemia.................................................................................................................Only so I can #fuckyou and #FUCKCANCER
Tuesday 24 November 2015
Saturday 21 November 2015
Back in Adelaide
MRI scan was clear so we returned yesterday. Thurs Lauren got to meet a celebrity who had made a crane and photo - Andy Lee - from Hamish and Andy fame. He's so down to earth!! Comes in often off his own back and volunteers to meet many of the kids on the ward - what a champ.
He remembered making the crane and taking the photo for "Cranes for Lauren" - he said she must have a great support base because they were asked every day for over a week to do the same thing. Makes you wonder why these celebrities don't go and visit older patients too - I'm sure their days need just a much brightening up if they're in hospital. Clown doctors for adults!!! (Patch Adams - see movie with Robyn Williams)
Oh yeah, she got to see the clown doctors as well before leaving on Friday. The stupidity of it is actually refreshing. Who said hospitals have to be morbid - you can smile and laugh in them - many do at the Royal Children's Hospital Melbourne!! It is a fantastic hospital with equally fantastic staff.
The hospital also has an outdoor garden for patients to be creative - staffed by some excellent volunteers. See Lauren's fairy garden pot below....her first attempt. I'm sure we'll see more of these in the RCH garden soon!!
He remembered making the crane and taking the photo for "Cranes for Lauren" - he said she must have a great support base because they were asked every day for over a week to do the same thing. Makes you wonder why these celebrities don't go and visit older patients too - I'm sure their days need just a much brightening up if they're in hospital. Clown doctors for adults!!! (Patch Adams - see movie with Robyn Williams)
Oh yeah, she got to see the clown doctors as well before leaving on Friday. The stupidity of it is actually refreshing. Who said hospitals have to be morbid - you can smile and laugh in them - many do at the Royal Children's Hospital Melbourne!! It is a fantastic hospital with equally fantastic staff.
The hospital also has an outdoor garden for patients to be creative - staffed by some excellent volunteers. See Lauren's fairy garden pot below....her first attempt. I'm sure we'll see more of these in the RCH garden soon!!
Wednesday 18 November 2015
Leukapheresis procedure today successful (stage 1)
Good news, the number of T-cells from today's leukapheresis procedure was successful in extracting sufficient T-cells for the trial. This means Lauren doesn't have to bat up for this procedure again tomorrow. Lauren was the third person in Australia to go through this new procedure. This in itself is not a full solution, but the start of the journey to get to a new cure. Other good news is this procedure, if successful and if we are able to continue, might negate the original need for a bone marrow transplant. Thanks to Dave and Sophie for their professionalism and care today. Was great hearing Dave's 40+ years experience as a nurse and how much it's changed over the years in procedures and processes in paediatrics.
Tonight, they'll take out the vascath that was inserted on Monday to extract the T-cells as it won't be required going forward.
So tomorrow is just an MRI scan and hopefully we'll be OK to return to Adelaide on Friday. Back here Monday week, 30 Nov for another bone marrow biopsy.
Tonight, they'll take out the vascath that was inserted on Monday to extract the T-cells as it won't be required going forward.
So tomorrow is just an MRI scan and hopefully we'll be OK to return to Adelaide on Friday. Back here Monday week, 30 Nov for another bone marrow biopsy.
Tuesday 17 November 2015
At the Royal Children's Hospital Melbourne (RCH)
So yesterday saw Lauren book into the RCH to start the process of the trial just started here in October. This will happen in stages as Lauren doesn't fully qualify for the trial just yet. One of the stumbling blocks is she needs a 5% blast count (leukaemic cells) and hers have been under 1% thanks to the success of the trial drug Inotuzumab. Even with a bone marrow biopsy yesterday, her blast count is only 1.6%. So we'll have to wait before she can proceed to have her T-cells sent to the USA for genetic modification in the laboratory.
Aside from the bone marrow biopsy yesterday, she had a 'vascath' inserted in her groin which will be used tomorrow to extract her T-cells through a process which might take all day. Basically they'll run her blood through a machine, something like what you see if you donate platelets at the blood bank, extract the T-cells and put the rest back into her. These T-cells will be frozen until she has the required blast count so we can continue.
So tomorrow starts this new journey with the Leukapheresis procedure, which is easier here in Melbourne than having to go to the US to access it.
This hospital is amazing to say the least. Someone had a massive vision what a hospital should and could be in building this. It feels more like a hotel, looks like a modern office complex with shops and eateries on the ground floor - even has a cinema and meditation and prayer room and heaps to keep anyone occupied. It's so modern and what any hospital in any first world country should be these days. Up until now I was under the impression that only people living in the 1800's and early 1900's had any vision to build hospitals.
Turns out we should be grateful a response was never received when querying the RAH Adelaide medical teams' recommended switch from Inotuzumab (Pfizer) to Blinatumomab (A....). If Lauren had ever accessed this later drug, she would have been precluded totally from this trial in Melbourne. However, what's concerning is such a switch would have also have precluded her from the trial in Washington as well, where she was supposedly on a wait list for for the last few months. The trial being the same one. Just confirms that just because a medico says something, doesn't mean it is necessarily correct. People should be encouraged to question their treatment and any professional should be happy to respond to those questions.
The team here at the Royal Melbourne are extremely professional and give you confidence in how they approach their roles. No question is buried and openly encouraged by them. They even respond to emails in writing, which isn't a problem either - at all levels in their hierarchy! This is what all hospitals should be modelled on in admin and professionalism (from what I've seen so far). Makes you wonder what the centres of excellence in Germany and the USA are like?
Here's some photos of this hospital
The trip across to Melbourne was also used to achieve part of Lauren's goal to see all the 'Big things' in Australia. So we visited the Big Lobster, Larry in Kingston in SE (SA) and the Giant Koala at Dadswell Vic
Aside from the bone marrow biopsy yesterday, she had a 'vascath' inserted in her groin which will be used tomorrow to extract her T-cells through a process which might take all day. Basically they'll run her blood through a machine, something like what you see if you donate platelets at the blood bank, extract the T-cells and put the rest back into her. These T-cells will be frozen until she has the required blast count so we can continue.
So tomorrow starts this new journey with the Leukapheresis procedure, which is easier here in Melbourne than having to go to the US to access it.
This hospital is amazing to say the least. Someone had a massive vision what a hospital should and could be in building this. It feels more like a hotel, looks like a modern office complex with shops and eateries on the ground floor - even has a cinema and meditation and prayer room and heaps to keep anyone occupied. It's so modern and what any hospital in any first world country should be these days. Up until now I was under the impression that only people living in the 1800's and early 1900's had any vision to build hospitals.
Turns out we should be grateful a response was never received when querying the RAH Adelaide medical teams' recommended switch from Inotuzumab (Pfizer) to Blinatumomab (A....). If Lauren had ever accessed this later drug, she would have been precluded totally from this trial in Melbourne. However, what's concerning is such a switch would have also have precluded her from the trial in Washington as well, where she was supposedly on a wait list for for the last few months. The trial being the same one. Just confirms that just because a medico says something, doesn't mean it is necessarily correct. People should be encouraged to question their treatment and any professional should be happy to respond to those questions.
The team here at the Royal Melbourne are extremely professional and give you confidence in how they approach their roles. No question is buried and openly encouraged by them. They even respond to emails in writing, which isn't a problem either - at all levels in their hierarchy! This is what all hospitals should be modelled on in admin and professionalism (from what I've seen so far). Makes you wonder what the centres of excellence in Germany and the USA are like?
Here's some photos of this hospital
The trip across to Melbourne was also used to achieve part of Lauren's goal to see all the 'Big things' in Australia. So we visited the Big Lobster, Larry in Kingston in SE (SA) and the Giant Koala at Dadswell Vic
Saturday 14 November 2015
MELBS ESSAY UPDATE (Lauren's FB post yesterday)
MELBS ESSAY UPDATE (not sure if it's under 1000 words, sorry!) :
Basically I have enough lymphocytes (don't worry just a fancy name for an immune cell) to go ahead with step 1 of the 'CAR T-Cell' trial in Melbourne. Was up there yesterday to have a whole heap of tests done as well as sign paperwork etc. with questions like have any of your past lovers been sex workers and the classic are you sure you are not pregnant 😐.
After flying back to Adelaide this morning will head off again to Melbs on Sunday with Dad where we will spend the week. Monday I will be completely knocked out (as children's hospitals are nice and put you under General Anaesthetic for everything) and have a bone marrow biopsy and a vascath (basically a bigger version of the PICC line I have in now) inserted into some big vein near my groin for the collection of my T cells.
Then Tuesday I will pretty much be a vegetable lying in bed waiting for some results to come back as you can't do much moving with this vascath thing in your groin. I've even been told I can't wear underwear 😥 just a nightie because of the bloody thing. So Tuesday I'm thinking will = Netflix.
If all the tests come back ok, Wednesday will be the day they collect my T cells - and for those of you who want to be extra smart this process is called aphresis (just don't ask me how to pronounce it) and I basically get hooked up to this machine via my lovely undie free vascath where one bit of the vascath takes my blood to the machine, which will somehow whiz around at the right speed to collect the right T cells, and then all the leftover blood and cells come back to me via another part of this charming vascath thing. This aphresis procedure usually takes four hours to collect the cells and if they don't get enough I may need to do a second collection but hopefully that won't happen.
After the aphresis I will part with my dear vascath by some nurse giving me this drug called madazaland (literally truth/drunk syrup as it's better known among patients) and pulling it out and the T cells collected will be frozen and stored until I have that 5% of leukaemia in my bone marrow where they will be shipped off to America to get genetically modified.
And yep I'm scared - absolutely terrified. At Least with chemo and Inotuzumab I sort of knew how it worked - drug goes in, side affects, drug kills certain cells, bobs your uncle if you keep positive. But this is so new and foreign to me and I feel like the world just keeps throwing all these extra challenges my way - I'm sick of being tested, I'm sick of seeing other 21 year olds having fun, looking pretty, flirting, going dancing, having lunch, finishing their degrees, making a path for themselves, not worrying about tablets or booking appointments for your PICC line dressing to get changed, not worrying about how the hell you're going to make your lovely little Afro look not like an Afro because when you were in yr 9 and had the same haircut some people used to tease you about it and not worrying about the lumps that continually start popping up on you like fungus because you are sick, because you have a disease and you have to fight it whether you like it or not. I'm so frustrated and angry and hurt.
But as hard as it can seem sometimes (and believe me it's so super hard somedays/weeks) I just have to remind myself and my fears to somehow be grateful. Grateful that I have an amazing support network of family and friends beside me, grateful that I still have options open to me, grateful even for the fact that my steroid fluid has come down so much I can now fit into my jeans again without busting the zip.
I really just want to invest all my hope into this new treatment and that it will finally work for me, but at the same time I'm so tired of investing so much hope only to be let down time and time again. But what else can I do. One of my favourite quotes is
'When the world says give up... Hope whispers, try it one more time.'
As for that here's hoping cancer finally receives the bloody message #FUCKOFFLEUKAEMIA #FUCKCANCER
Basically I have enough lymphocytes (don't worry just a fancy name for an immune cell) to go ahead with step 1 of the 'CAR T-Cell' trial in Melbourne. Was up there yesterday to have a whole heap of tests done as well as sign paperwork etc. with questions like have any of your past lovers been sex workers and the classic are you sure you are not pregnant 😐.
After flying back to Adelaide this morning will head off again to Melbs on Sunday with Dad where we will spend the week. Monday I will be completely knocked out (as children's hospitals are nice and put you under General Anaesthetic for everything) and have a bone marrow biopsy and a vascath (basically a bigger version of the PICC line I have in now) inserted into some big vein near my groin for the collection of my T cells.
Then Tuesday I will pretty much be a vegetable lying in bed waiting for some results to come back as you can't do much moving with this vascath thing in your groin. I've even been told I can't wear underwear 😥 just a nightie because of the bloody thing. So Tuesday I'm thinking will = Netflix.
If all the tests come back ok, Wednesday will be the day they collect my T cells - and for those of you who want to be extra smart this process is called aphresis (just don't ask me how to pronounce it) and I basically get hooked up to this machine via my lovely undie free vascath where one bit of the vascath takes my blood to the machine, which will somehow whiz around at the right speed to collect the right T cells, and then all the leftover blood and cells come back to me via another part of this charming vascath thing. This aphresis procedure usually takes four hours to collect the cells and if they don't get enough I may need to do a second collection but hopefully that won't happen.
After the aphresis I will part with my dear vascath by some nurse giving me this drug called madazaland (literally truth/drunk syrup as it's better known among patients) and pulling it out and the T cells collected will be frozen and stored until I have that 5% of leukaemia in my bone marrow where they will be shipped off to America to get genetically modified.
And yep I'm scared - absolutely terrified. At Least with chemo and Inotuzumab I sort of knew how it worked - drug goes in, side affects, drug kills certain cells, bobs your uncle if you keep positive. But this is so new and foreign to me and I feel like the world just keeps throwing all these extra challenges my way - I'm sick of being tested, I'm sick of seeing other 21 year olds having fun, looking pretty, flirting, going dancing, having lunch, finishing their degrees, making a path for themselves, not worrying about tablets or booking appointments for your PICC line dressing to get changed, not worrying about how the hell you're going to make your lovely little Afro look not like an Afro because when you were in yr 9 and had the same haircut some people used to tease you about it and not worrying about the lumps that continually start popping up on you like fungus because you are sick, because you have a disease and you have to fight it whether you like it or not. I'm so frustrated and angry and hurt.
But as hard as it can seem sometimes (and believe me it's so super hard somedays/weeks) I just have to remind myself and my fears to somehow be grateful. Grateful that I have an amazing support network of family and friends beside me, grateful that I still have options open to me, grateful even for the fact that my steroid fluid has come down so much I can now fit into my jeans again without busting the zip.
I really just want to invest all my hope into this new treatment and that it will finally work for me, but at the same time I'm so tired of investing so much hope only to be let down time and time again. But what else can I do. One of my favourite quotes is
'When the world says give up... Hope whispers, try it one more time.'
As for that here's hoping cancer finally receives the bloody message #FUCKOFFLEUKAEMIA #FUCKCANCER
Wednesday 4 November 2015
Back in the RAH - because of wisdom teeth
Lauren went into the RAH tonight because of a suspected infection from getting her wisdom tooth out yesterday. Should only be a short stay, all things going well. Looked 100% better at 11:30pm tonight than she did at 5:30pm as she was running a fever and being sick, so couldn't hold down any fluid or antibiotics she was on.
Apparently her Lymphocytes are OK to proceed to stage one in Melbourne. So we're just waiting to hear when they want us over for the extraction of her T-Cells for freezing and then genetic modification and harvesting in the USA under their Car T-Cell therapy - science fiction stuff according to some who studied only 20 years ago in this field!!!
Apparently her Lymphocytes are OK to proceed to stage one in Melbourne. So we're just waiting to hear when they want us over for the extraction of her T-Cells for freezing and then genetic modification and harvesting in the USA under their Car T-Cell therapy - science fiction stuff according to some who studied only 20 years ago in this field!!!
Sunday 1 November 2015
Gigantic Update (from Lauren's facebook post today)
GIGANTIC UPDATE (Goodluck reading it): I always know when to do another one of these because a lot of people start messaging me asking how I am going so...
last update was that I found two swollen lymphnodes (one in my neck and one near my sacrum) that were filled with leukaemic cells. For those of you who are going what the hell are lymphnodes - they are part of the immune system and are filled with lymphocytes (usually white cells in the blood) which help tackle any viruses or bacteria that enter your body. These lymphocytes often swell when they are working extra hard or if something else (like leukaemia cells) clog them up, hence the name lymph-node. Because of these nodes I could no longer continue with the next dose of Inotuzumab. And after talking with my doctor the Inotuzumab isn't a complete failure - my bone marrow still to this day only contains 0.1% of leukaemia cells which is fantastic - it's just a shame that the disease progressed to my tissue/lymphnodes and the Inotuzumab was ineffective in the tissue to prevent this.
So what's the plan now?
Well when we first found out about the lymphnodes we thought we would be needing to go to America to receive cutting edge 'Carr T Cell' treatment BUT GUESS WHAT... It's been doing so well in America that the trial has just been brought to the Royal Children's in Melbourne - that's why I was up in Melbs last Wednesday. So after talking to the doctor up there, fortunately I'm not too old to qualify for the trial as the cut off point is 22, but unfortunately, I don't qualify for the trial just yet as I don't have enough leukaemic cells in my bone marrow. (I know, talk about backwards) So because this treatment is so new there needs to be a disease marker so they can see how well the treatment works against the disease and this marker is 5% of leukaemia in the bone marrow. However, I can take the first step and at least get my 'T cells' (a specific type of white cell in your blood) harvested and frozen ready to be sent and genetically modified when I do eventually end up on the trial. Hopefully that will happen sometime in the next month or two.
Well when we first found out about the lymphnodes we thought we would be needing to go to America to receive cutting edge 'Carr T Cell' treatment BUT GUESS WHAT... It's been doing so well in America that the trial has just been brought to the Royal Children's in Melbourne - that's why I was up in Melbs last Wednesday. So after talking to the doctor up there, fortunately I'm not too old to qualify for the trial as the cut off point is 22, but unfortunately, I don't qualify for the trial just yet as I don't have enough leukaemic cells in my bone marrow. (I know, talk about backwards) So because this treatment is so new there needs to be a disease marker so they can see how well the treatment works against the disease and this marker is 5% of leukaemia in the bone marrow. However, I can take the first step and at least get my 'T cells' (a specific type of white cell in your blood) harvested and frozen ready to be sent and genetically modified when I do eventually end up on the trial. Hopefully that will happen sometime in the next month or two.
As for now it's just living life. My blood counts have been pretty good so I've been trying to get out and about as much as I can. In Melbs on Tuesday night, caught up with some family friends in fed square for dinner and almost laughed my head off, last Friday helped out selling bandannas in Adelaide CBD for CanTeen's national bandanna day, can finally do 10min at 9.7km/h on the treadmill and last night had the chance to catch up with all my third year actor peers around a gorgeous bonfire in Charleston!!
Not gona lie - the past 2-3 weeks have been tough because of not knowing a plan and when people say I'm so strong and optimistic it's because I only allow you to see what I want you to see - did you know I broke a light bulb/fixture with my shoe the other day because I was so angry at everything and everyone?? Well I guess now you do but I believe if you were in my position you would also somehow tap into this weird strength that people seem to see so vividly because you simply have to in order to live. There's no choice really, unless you really want to die.
Anyway I think that's enough soppiness for one day!! Haha but yes for now just trying to get out and do as much as I physically and mentally can! #FUCKLEUKAEMIA #FUCKCANCER
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