Life for Lauren - Bone Marrowthon

Hi everyone! It’s been a while so we’d thought we’d give you an update. After years of being sick, numerous hospital visits and 2 bone marrow transplants, Lauren is finally healthy and living her life the way she wants. It’s been 2 years since the last bone marrow transplant so today she had a bone marrow biopsy.

Over the last couple of years Lauren has settled in to her new life and is achieving great things. She’s working part time, has started playing tennis and going on adventures with her friends.

Lauren is finally well enough to go travelling so next year she is going to Europe to watch Eurovision with her best friend Sam.

As Lauren is so much better now we will not be using this page anymore. We want to thank everyone so much for all the support and donations over the years. It helped so much and it would’ve been so difficult without everyone’s help. We are especially grateful for everyone that signed up to the registry to donate their bone marrow. It obviously makes a massive difference and saves lives.

Thank you all so much ❤️

Lauren started getting her vaccines today. Her Bone Marrow Transplant wiped out all of her childhood vaccinations so she’s starting again from scratch.
Today she had the triple antigen & pneumococcal. She has a headache & sore arms, these are hurting her much more than her 3 COVID vaccines did.
It’s a huge relief for Lauren to start building up protection again. She’s still incredibly vulnerable but very thankful to science for vaccines ☺️

please help support one of Laurens close friends, Romany, during a tough time.

She lost her mum due to domestic violence, and has created the organisation ‘Rachel’s Voice’ to raise awareness of domestic violence and to force stricter laws for victims.

please like and Share the page. any support is appreciated endlessly ❤️❤️

Rachel’s Voice Personal blog

Hi everybody!

Lauren is doing well, she officially doesn’t have neutropenia anymore! But it will still take her another 18 months to build a fully functioning immune system! We were reminded of this fact by this weeks blood test. Lauren’s liver function was higher than normal so she’s back on a very high dose of steroids 🙄 this proves that she has graft vs host disease so we’re monitoring her symptoms and if anything gets worse she’ll be going straight to emergency over Christmas.

Lauren has stopped working since the borders opened and will be home isolating for the foreseeable future. So we are spending christmas at home with just the four of us (7 if you count the cats).

We want to wish everyone a merry christmas and thank you for all the support you’ve given us this year. Love you all, stay safe ❤️

Foreign stem cells saved Shelley's life, but doctors say they should be available at home Stem cells made the difference for Shelley Garvie, but experts say Australia is a long way behind where it needs to be in finding donors for the treatment and are calling for reform.

Lauren has been busy enjoying life in Hobart and gradually reducing some of her medications.
Unfortunately she’s had a setback. After stopping her immunosuppressants and steroids her liver function was off slightly last week which can be an early sign of graft vs host disease.
Yesterday she was very tired, developed nausea, diarrhoea & a fever.
We took her to emergency where blood tests showed her neutrophils were fine, but potassium was low. Blood cultures were taken to check for any infections & she was put on a heart monitor. She was given IV potassium & antibiotics.
This morning she’s been moved up to the Oncology/Haematology ward for further monitoring. At this stage the doctors say they would expect more symptoms if she had GVHD & suspect it may be food poisoning, but will continue to monitor her.

Oops!! Sorry we haven’t posted in weeks, Lauren & Helen have been enjoying being back home!
Things are going well, Lauren’s khimerism is still 100% donor cells! Although she’s been struggling with a lot of anxiety, nausea and migraines she’s mostly feeling well.

A gynaecologist at the women’s hospital confirmed that Lauren has menopause and she needs an oestrogen patch so her bone density doesn’t decrease. Luckily she has 21 eggs frozen from when she was 16, but hopefully we won’t need to use them 🤞 It’s possible that her ovaries might kick in still.

They saw her transplant doctor from Melbourne via video call last week and he’s started to decrease her immunosuppressants. This will eventually lead to lowering the steroids too. Lauren’s very excited to get rid of her chubby cheeks and cutting down on all the tablets.

Lauren still needs weekly blood tests and multiple doctors appointments each week, but she’s trying her best to enjoy herself with her friends and still get enough rest.

The hickman line is out and they’re on their way home!

(don’t look at the third photo if you don’t like blood!)

Oops sorry for the huge gap between updates. The days just blur into each other in lockdown. Lauren is doing ok & still continues to have appointments at Peter Mac two days most weeks.
Last week Lauren was able to have her first COVID vaccine which was a huge relief but the side effects weren’t fun.
Day 100 tests are due but most of them are done at Royal Melbourne Hospital which is experiencing a COVID outbreak. Most of Lauren’s tests have been delayed. She had her bone marrow biopsy done at Pete Mac last week and was a bit sore as usual. For a few days she was experiencing migraines as well as the side effects of the bone marrow biopsy and vaccine all at once - she was pretty miserable 😩
On Wednesday Lauren will see David Ritchie, the head of Lauren’s transplant team, to find out the plan for returning home.
Thank you to everyone who has donated to the go fund me, it’s made such a difference not having financial worries. It really is appreciated.

https://www.gofundme.com/f/life-for-lauren-bone-marrowthon?utm_source=customer&utm_medium=copy_link_all&utm_campaign=p_cp+share-sheet

This is Lauren’s nurse, Alex. She has supported her through both transplants on the ward & as an outpatient at Peter Mac. She is a GVHD expert but we think her super power is helping Lauren to manage her anxiety. She’s helped her through multiple panic attacks. She is so knowledgeable, kind & patient. Without her both transplants would have been much harder and we are very grateful for her.

Physically Lauren is doing much better apart from some unexplained pain. All of her test results are looking good. Medications are still being adjusted but things are moving in the right direction.

Mentally Lauren is really struggling with her anxiety which may be the cause of the chronic chest pain she’s been experiencing. Luckily she has Alex as well as her psychologist from Canteen and her psychiatrist from Peter Mac to help her through.

Luckily the Olympics are providing some distraction during lockdown #6.

Gofundme: https://gofund.me/3c27ed17

Day 60 something (we’ve lost track)

Late Friday afternoon Lauren experienced more chest pain. She texted her nurse who told her to go straight to emergency. Although fairly certain it was a repeat of the pain she had when she was last anaemic it needed to be checked.
She had blood tests, ecg & an x-ray & was told they had a bed for her on the transplant ward. By this time the pain had stopped & Lauren convinced the doctors to let her go home once the test results gave her the all clear.
We returned to Peter Mac on Monday & weren’t surprised to find that she needed another blood transfusion. Several of her blood counts have been steadily going down so her medications are being changed & this should lead to improvements.
Lauren heard from her manager at Kmart on Monday about fundraisers they’d held in stores across Tasmania. She was so happy to hear that people had donated over $1000 to help her along her journey.

gofundme: https://gofund.me/c2c86977

Well that 2 weeks went quickly!
Melbourne is back in lockdown, so Lauren is only leaving the apartment for appointments at Peter Mac.
Lauren’s neutrophil count has been consistently in the normal range. The transfusions helped her anaemia but she might need another one on Thursday depending on new results.

The rash on Lauren’s legs spread & got worse. She was seen by dermatologists at the Royal Melbourne Hospital who almost immediately asked if we use Canesten rinse aid in the laundry. An ingredient in this & some antibacterial wipes causes a reaction called granular parakeratosis. This could take months to recover from fully. The first steps include running a 60 degree cleaning cycle in the washing machine 3 times, then washing all clothes 3 times on a 60 degree cycle, moisturising several times a day & using steroid creams. The rash has started to improve.

She saw a Gynaecologist to check on symptoms of GVHD - all clear. She thought it was likely that Lauren has entered early menopause and ordered some tests which will give more information.

With the addition of steroids causing facial changes it’s unsurprising that Lauren’s mental health has taken a battering. Luckily she had appointments with her psychologist & psychiatrist and had medications adjusted.

The go fund me is going really well, with over $10,000 raised already. The much appreciated funds are supporting Lauren and Helen at this difficult time. So if you are able, please consider donating to the go fund me, to keep Lauren and her mum more comfortable during her second transplant.

Go fund me: https://gofund.me/3c27ed17

Gofundme: https://gofund.me/3c27ed17

After a weekend of abdominal and chest pain yesterday’s blood tests showed that Lauren was very anaemic. She needed an urgent blood transfusion & will go back to Peter Mac for more in the coming days. She’s developed another painful rash on her legs. Despite this her neutrophils haven’t dropped.

This is a good reminder of the need to continue donating blood & encouraging others to. Don’t forget to join the Life for Lauren - Bonemarrowthon team if you haven’t already.

Today we received a generous donation from Rosetta Primary School. They held events including an ice cream fundraiser. We’d like to thank all of the staff and families for their efforts and support.

Gofundme: https://gofund.me/3c27ed17

On Thursday Lauren’s neutrophil count was a massive 3.0!!! Which is within normal levels. All other results were also positive. The GVHD rash is virtually all gone. They’ve started weaning her off the steroids which should improve her sleep.

Yesterday was the first time she left the apartment without needing to go to appointments. She went to Officeworks to print out more photos for the wall (which is nearly taking up the whole wall!), stocked up at Chemist Warehouse and found some cute bargains at a newsagent. It was good for her to get out for some exercise and fresh air.

In the last post we gave you another hint and some people guessed right - she’s going to have a Zoom call with Hamish & Andy soon. She’s beyond excited because she’s been a massive fan since she was little.

This is Helen’s first attempt at a crocheted blanket & she’s already well on the way to completing the next one.

Great news!
Lauren’s neutrophil count is 1.4! This is the highest in her life without GCSF. She did this all by herself! We are very proud of her!
Her chimerism is 100% donor cells. It never got this high after the last transplant. 🤞it stays like this.
Her GVHD is responding well to steroid treatment & the rash has almost gone.

gofundme: https://gofund.me/3c27ed17

This is Lauren’s reality at the moment. She’s spent the weekend covered in this itchy, painful rash. She has a sore mouth, nausea & diarrhoea. This is due to graft vs host disease (GVHD).

GVHD means the transplanted stem cells are fighting against Lauren’s original bone marrow.

During the last transplant we were told that we needed to avoid this at all costs. This time they were expecting GVHD to happen & hopefully it will help the transplant to be successful. The key is to keep it quick & mild so that Lauren isn’t put at risk.
GVHD most commonly affects the skin, gastrointestinal tract, liver and lungs. Lauren’s liver and lungs are unaffected and she’s being treated for the symptoms affecting her skin and gastrointestinal tract. The immune suppression medications she’s taking are being monitored closely to prevent GVHD from progressing.

Bucket list guesses
It’s not the Wiggles.

Clue #4 they started their career in radio.

gofundme: https://gofund.me/3c27ed17

Today we were going to tick something off Lauren’s bucket list. But she woke up to find a previously isolated rash was now all over her body so we needed to go back to Peter Mac urgently & cancel the “special event”.
Turns out that Lauren has graft vs host disease which can be very serious, luckily at the moment she’s ok & doesn’t need to be admitted to hospital. She’s now on oral and topical steroids which should relieve her symptoms quickly.
We’re not going to tell you what the item on her bucket list is that she’s about to tick off but we want you to guess.

Clue #1 Lauren has been obsessed with these people since she was very small.
Clue #2 Lauren has watched all of their tv shows at least 10 times.
Clue #3 they are very well travelled.

Put your guesses in the comments. (Please don’t comment if you are close friends & family who already know.)

*pillow to hide gross rash*

Amazing news everyone, Laurens out on the town again! No more hospital 24/7, she will only need to go in for appointments now. She is still going to be in Melbourne but happily spending her time with her wonderful mother and playing with her BBQ Play-Doh set. Let's all say a huge congratulations to Lauren, this is amazing progress!

P.S also 0.6 neutrophils!!!!!!!

🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉

Today we got amazing news! Although Lauren isn’t ready to be discharged yet, she was able to have day leave. She left the hospital late this afternoon & needs to be back later tonight.
It’s so exciting to be together again & Lauren has been able to eat an enchilada & Tim tams & an apple.
Neutrophils are still 0.4, but eating is HUGE progress.

Lauren is so desperate to be discharged from hospital.
Earlier in the week her doctors said they were aiming to send her home on Friday. Her neutrophils had increased to 0.4 & now they’re down 0.3. She needs a neutrophil count of 0.5 for discharge.
The only thing that needs to improve is eating. At the moment she’s still relying on TPN due to nausea & vomiting.
Today the doctors revised their plan & said she probably won’t be ready to leave until Tuesday - she was devastated!
She’s still not able to have any visitors and this won’t change with the lifting of Stage 4 restrictions. She feels very isolated & lonely despite the attention of her lovely nurses.
She’s really upset & feeling helpless to change her situation.
Lauren is experiencing severe bone pain this evening which will hopefully mean a higher neutrophil count tomorrow, but it’s excruciating for now.
Please send Lauren encouragement in the comments below.

Tonight, Jabeks would like you take a second to read a story about one of our beautiful and Inspirational clients!

FB please put your hands together for Lauren-

“ I was born with severe chronic congenital neutropenia which means i have a compromised immune system. throughout my life i’ve had numerous hospital visits, but in the past few years they have gotten worse and worse. it was decided in early 2020 that i had to go to melbourne for a bone marrow transplant. so in june 2020, during the strict stage 4 lockdown, I had chemotherapy to wipe my immune system. As a result all of my hair fell out. although the transplant didn’t work and im currently back Melbourne to have another one, i’m trying to live my life the best i can. my hair has been growing back so well i just had my second first haircut”

We know how amazing our Jabeks community is and tonight we want to celebrate Lauren! Celebrate her bravery, her fight, her optimism, her laugh, her beautiful hair, her spirit by sending her all the laughs, positivity, beautiful energy we digitally can.

So below, please post a little message to Lauren, perhaps you have a favorite quote, or a hilarious joke, maybe a cute puppy pic? Some words of comfort, a little prayer. let’s raise the vibration and fill The comments for Lauren to read when she needs a smile

We will all know the feeling of life flipping us upside down at some point and we all know the power of strangers, kindness and positve energy! let’s do something nice for someone else!

If you’d like to find out more about Lauren, register to be a bone marrow donor or keep up to date, Lauren has a FB page, please head over and follow her.

https://m.facebook.com/bonemarrowthon/ or search life for Lauren

First the good news - Lauren’s White Cell Count has gone from 0 to 0.1 & that 0.1 is neutrophils! This happened a few days earlier than it did with her first transplant so we’re hoping that’s a good sign. 🤞
She has been a little more comfortable as some of her pain has started to ease.
She also had another bag of red blood cells today, so please keep donating the good stuff 🩸
One of her nurses brought a surprise in for her today - she knows Lauren loves hippos 💕🦛💕

Lauren has been complaining of a tightness in her chest for some time & today her oxygen saturation dropped to about 90%. She’s had swabs collected & a had a chest X-ray.
While waiting on results she is on oxygen almost constantly.
Her chest X-ray showed something in the base of one lung. It may just be fluid from lying down so much, it may be something caused by a virus, maybe pneumonia. That will be monitored, probably with a CT scan.
In more good news she doesn’t have COVID-19.

We just wanted to say a huge thanks to all those people who have been donating their blood/plasma/marrow. Lauren has received Red Blood Cells and Platelets recently (see photos) and we are all feeling so thankful for the people who made this possible.

Any one who has ever donated, you're saving lives. You're helping so many people, Lauren included, and it's so important that we keep pushing for donations. This is a worthwhile and amazing thing to give to another human being, the gift of health.

Donations are always welcome and always needed! If you're thinking of donating this is your sign to do it, register with our team and sign up to donate your marrow!
Life for Lauren - Bone Marrowthon

https://my.donateblood.com.au/app/myteams_tallies

This is just a gentle reminder that Lauren is feeling very unwell. Most of the time all she can do is sleep.
While she loves the support she’s receiving she really isn’t well enough to focus on individual messages right now.
Please refrain from messaging Lauren directly as she feels compelled to read & try to respond to all of the messages she gets.
She reads the comments on these posts when she’s able to. If you need to send a more private message please send it to us so that we can pass it on to Lauren when she feels up to it.

Thanks for your support.

Gofundme- https://gofund.me/3c27ed17

Day 7

What a week it’s been.

Lauren hasn’t been comfortable since her transplant. She was unable to eat due to pain & nausea, she has now started TPN which is nutrition delivered through her Hickman line.

Her pain levels are now being managed with fentanyl delivered by PCA in conjunction with other IV pain relief. Even with this she’s been experiencing regular pain including constant headaches.

On Tuesday Lauren watched her Nan’s funeral over YouTube. It was devastating not being there with family but at least she could watch & speak to family members by video chat after the service.

With the announcement of stage 4 lockdown in Melbourne today we learnt that Lauren won’t be able to have any visitors for a week. This will be extremely hard to deal with. Thankfully the 7b staff are amazing & will do all they can to care for all of her needs.

Gofundme link- https://gofund.me/3c27ed17

The challenges continue for Lauren. She feels very unwell & has been very tired, only occasionally managing to keep her eyes open for short periods of time.

Lauren has continued to experience pain & nausea. It’s a constant battle to find the right combination of medication to keep her as comfortable as possible.

Her potassium levels have dropped which means extra tablets added to the huge number she’s already struggling to take given her constant nausea.

Today she also needed 2 bags of red blood cells. This is another not so gentle nudge to book an appointment to donate blood if you’ve been meaning to get around to it. Don’t forget to register for the Life for Lauren- Bonemarrowthon Team so we can keep track of our stats. So far we’ve saved 108 lives!

Tomorrow morning’s Eurovision final is giving Lauren something to look forward to. We’ve been watching the semi finals together & she’s been quizzing us about the entrants.

We had a few smiles from watching this amazing squirrel video recommended by Sally.

https://m.youtube.com/watch?v=DTvS9lvRxZ8&feature=share&fbclid=IwAR2XhrRtWvV8ONqUuCczVcIdKPbD-ArYqxE74FK7D6VsZ-rSS7ZCsaZmUwE

Day 0! Stem Cell Transplant day.

It’s been a big week for Lauren. She was admitted to hospital on Sunday evening (on her birthday). When she arrived there was a birthday cake waiting for her, the nurses had decorated her room with balloons & they sang Happy Birthday to her (there may have been tears).

She continued chemo the next few days, it was stronger than before & she needed to chew ice constantly for hours to protect the mucous membranes in her mouth.

Tuesday & Wednesday were hard on her physically & mentally especially with the news of a death in the family.

Lauren was pleased to have both parents with her for this transplant. She was very positive & excited about her transplant last year, looking forward to a new life free of neutropenia & not really considering that it may not succeed. She was more subdued this time.

2 bags of stem cells from her original American donor were defrosted in a water bath & transfused through Lauren’s Hickman line.
This transplant was much more uncomfortable for Lauren than last time. She suffered stomach pain, nausea and felt very flushed.
After the transplant she was pleased to be able to sleep with the help of sedation.

Hopefully things will improve soon, but the next few days at least are likely to bring more discomfort but we are so proud of her!

Please donate here at https://gofund.me/3c27ed17 to make Laurens time easier.

Hey everyone! We have some fun news for today.

ITS LAUREN'S 21ST BIRTHDAY!!! 🥳🥳🥳🥳

It may not be the birthday we all imagined for her but she's going to make the best of it anyway. Here's a lovely photo of her with her new baby Honey, let's all wish her a happy birthday!

And if you're feeling like getting her a birthday gift then we have our Gofundme still going, we can help make life easier for Lauren and Helen.

HAPPY BIRTHDAY LAUREN! 🎈🎈🎉🎉🎁🎁

https://gofund.me/3c27ed17

This morning a package was delivered from Koala Kids Foundation. Lauren has been really struggling with missing her little baby Snowy (her favourite cat) and we’ve been trying to figure out a way to make her feel better. Koala Kids organised a robot cat to be sent and it’s adorable! It meows, purrs and moves just like a normal cat. We are struggling to think of a name for the new cat. Has to be weather themed to match with Misty, Snowy and Sunny, so if you have ideas please help 😉. Along with the cat, we also received a pottery kit, diy mosaic coasters, punch needle kit, wool to make a snood and a diy miniature house. We want to thank Koala Kids so much, this has lifted our spirits and will give us something to do.

Lauren and Helen are now in Melbourne preparing for the transplant. They spent most of today at Peter Mac, seeing a psychiatrist, haematologist, pharmacist and getting bloods done. Lauren is starting many new medications tomorrow including chemotherapy. Until Sunday she will be a Hospital in the Home patient, then on her birthday she will have another lot of chemo and then be admitted on to the ward (happy 21st Lauren 🥳😒). They are settled into their accommodation which was organised by the Sony Foundation.

GoFundMe: https://gofund.me/c2c86977