Life for Lauren - Bone Marrowthon

25/09/2023

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 ❤️

24/01/2022

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 ☺️

27/12/2021

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 ❤️❤️

Personal blog

24/12/2021

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 ❤️

23/11/2021

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.

07/11/2021

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.

04/10/2021

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.

03/09/2021

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!)

30/08/2021

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

06/08/2021

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

27/07/2021

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

20/07/2021

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

06/07/2021

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.

03/07/2021

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.

24/06/2021

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.

20/06/2021

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.

18/06/2021

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*

13/06/2021

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!!!!!!!

🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉