JOSIE’S STORY

Josie's life was suddenly turned upside down when in September 2004, just 2 days into a new school term, she was diagnosed with a very aggressive form of Acute Myeloid Leukaemia (AML). It meant her world was changed for ever, but despite everything she went through, Josie never gave up her truly inspirational smile. 

Josie Grove 2004 Bumrungrad HospitalJosie was just 14 yrs old, a very healthy active teenager and an excellent swimmer. She was diagnosed with an aggressive form of AML very unexpectedly, after having a blood test to see if she was anaemic. Josie had been feeling tired and had such pale lips that her friends thought she was wearing lipstick which was very much out of character.
Josie had been living in Thailand with her family at the time so her treatment began at Bumrungrad Hospital in Bangkok where she spent 6 weeks in an isolation room having very high dose chemotherapy. At first Josie was unaware that leukaemia was a form of cancer but as the days went by she gradually realized how very poorly she was.

AML (Acute myeloid Leukaemia) comes in different types and sadly Josie's AML turned out to be rare and very aggressive.  After 3 failed attempts to get her into remission with high dose chemotherapy, Josie's parents were told that their only hope was for Josie to have a Bone Marrow Transplant and they should return to the UK immediately. Within 24 hrs Josie was back in the UK being admitted to The Royal Marsden in Sutton which, at the time, was the only hospital with a space to take Josie at such short notice for a potential Bone Marrow Transplant.

Having been in isolation it was a huge relief for Josie to be in an English speaking hospital and among other kids with cancer. It helped to make the very surreal new world she found herself in, a little less scary. There were other children and teenagers to talk to and she soon realized that childhood cancer was actually quite common with 10 children being diagnosed every day in the UK. Some children had been on the ward for many months, and others were patients returning to the ward for regular long term treatment sometimes lasting years.  

Having cancer changes your world - but as a child or teenager your life changes completely and you end up having a very different kind of childhood. ....
You are separated from your friends and siblings, many of the things they can do, you can't. At least one of your parents has to quit their job, maybe even move home to be near to hospital. Parents become your nurse, carer, entertainer and on the upside - your new best friends.
You can feel guilty and responsible, angry and helpless.
Your old style goes out the window and your new fashion statement is a T-shirt and comfy PJ's with a skin-head or worse a partially bald-head to complete the look, hats and wigs can be a comfort but also uncomfortable, hot and itchy.
You are permanently attached to a drip stand which you have to drag around with you everywhere you go. It's attached by a plastic umbilical cord which is permanently embedded into your chest. You give it a name and it's own accessories because your own accessories are now bags of saline, blood, chemotherapy or platelets.
The disappointment of having to have chemo over and over again becomes routine....and the sickness that comes with each bout of treatment is just expected. You have to stay on the ward for weeks or months without a single breath of fresh air because you have little or no immunity and your social life starts to revolve around the nurse's rota and your parents... who take it in turns to be be with you. They are there all the time, whatever you are doing.

 
Privacy and dignity go out the window because now you depend on your mum or dad for everything - they help you go to the toilet and help bathe you. You have to use a cardboard potty no matter if you are 2,10 or 18, because your urine and stools need to be examined, weighed and tested. On top of that you are affected by drugs to a point where you hardly recognize yourself anymore.


You become an expert in dispensing medicines and understand more about the different types of cancer than most adults ever will. You would give anything to be back at school but schoolwork is now optional because most of the time you're feeling very sick.

You learn that miracles don't always happen and that prayers aren't always answered. And you learn that you are not invincible because some of your new friends have already died. But you learn to be strong and determined, accepting, patient, grateful, compassionate and wise beyond your years.

    The cancer ward holds many of your childhood memories some are quite fun. 
 A cancer ward is certainly a great place for a Halloween party!  You laugh alongside other bald children (some with proper-scary scars!) and with little kids dressed as vampires and eating ghost shaped crisps while their drip stands feed real blood into their little bodies! For you its the best fun you've had in weeks....and the parents look on in bewildered silence, wondering if this nightmare will ever end. 

When you have cancer everyday life is not normal and it's not easy. You are in what they call ' The cancer club' - you didn't ask to join - but you belong to it. Cancer can effect anyone, even kids, so you didn't have a choice.

 

After five sessions of Chemotherapy, each with a week of treatment followed by sickness and then another week or two with no immunity and then a wait to see if the leukaemia had been knocked back, Josie was finally ready for her first Bone Marrow Transplant. By now she had been in hospital for 6 months and the BMT involved a minimum of 6 more weeks in an isolation room. Like most kids she had a pre-BMT Good Luck Party with her family and the play specialists, then she went straight into her isolation room for the transplant process. Josie's siblings were sent to live with relatives in Northumberland and Josie was again shut away from everyone except doctors nurses and her parents.

 Josie's BMT at The Marsden
Josie was so positive throughout her illness, despite the many hundreds of hours in hospital. Between the good days and the boring days there were many feeling utterly sick. She had some medical complications and 2 emergency operations, over 460 blood and platelet transfusions and a very frightening spell in intensive care - But Josie just kept smiling and never once complained or even asked 'why me?'

She spent a lot of her time with younger patients, entertaining them and trying to make them smile. When parents didn't know why their child suddenly went into a wild tantrum or wanted to know what their little ones were going through, Josie would try and explain how the drugs changed your mood or what the pain felt like. She was extremely caring and it was really important to her to try and make everyone else feel happy - or at least a little better.

After Josie's BMT at the Marsden she was finally able to leave hospital and move up to Northumberland so the family could at last be together. She felt so grateful to be leaving hospital because a BMT meant her treatment had been a lot quicker than some other types of leukaemia and cancer. As she left hospital she was very aware that some of  the friends she was leaving behind still had months of treatment to complete.

Being able to go for a walk outside or just sit by the river in the sunlight was a such a treat and now aged 15 Josie's was able to think about life getting back to normal. She still needed hospital tests and check-ups twice a week so her treatment was transferred to the RVI in Newcastle where she quickly got to know the new doctors and nurses and made new friends.

Having missed a whole year, Josie was desperate to start school. She started back slowly, doing Maths and English with a tutor at home and going into her new school in Hexham to study Geography, Art, and Fashion Design which she loved. Her hair was growing back in, she was making new friends and at last she was starting to feel like herself again.
However it wasn't long before Josie started getting pains in her legs. After a two week spell in hospital in constant pain, tests revealed that her Bone Marrow transplant had failed.
All that could be offered was more chemo to try and suppress the leukaemia in the hope that it would give her more time. It was devastating news.

Not knowing how much time Josie had, a charity quickly organised a trip to Center Parks so that Josie could have some quality time with her family. She was quite weak but she loved having a tandem which allowed her to cycle about with all of her family having fun like any normal teenager.

Meanwhile Josie's mum had discovered she was pregnant and at 43, what started out as a huge shock turned to joy when tests revealed that, incredibly, the new baby was a perfect stem cell match for Josie.... The unexpected prospect of a baby brother gave everyone in the family renewed hope. Suddenly Josie had been given another chance and while everyone desperately waited for the baby's arrival, doctors started to consider that a second BMT was a real possibility, it all depended on whether the chemotherapy could hold back the leukaemia.
 
Josie was thrilled by the prospect of a baby brother. It was a wonderful distraction for her and it gave the whole family something very positive to look forward to whilst still being acutely aware of all the difficulties that lay ahead for Josie.
 Miraculously little Charlie was born on Josie's 16th Birthday so naturally it was assumed that this little baby was Josie's 'heaven-sent gift' and she claimed him as her own from the moment he was born.

Everything was in place for a second BMT, Josie had already started  having more chemo and Mum was in the same hospital having Charlie with a stem cell collection team at the ready. April 5th was a day of immense hope and joy.

But just 10 days after Charlie was born, there was more devastating news. Tests had revealed that the stem cell collection from the placenta and umbilical cord did not contain sufficient stem cells.Josie's perfect BMT match was no longer an option and everyone had a feeling of total helplessness as a desperate search started up again for an unrelated bone marrow donor. 

Thankfully the Anthony Nolan Trust came up with a partial match donor and within days a large bag of stem cells was flown in from an anonymous donor in Holland.....and so Josie began the whole BMT process again... spending 8 weeks in isolation this time, unable to see her siblings except through a window and her precious baby Charlie not even allowed anywhere near the hospital.

 

Josie struggled through her second BMT. She had more complications which eventually required her to be transferred to the Freeman, a specialist heart hospital, for an operation to relieve a build up of fluid causing pressure on her heart and lungs.

Eventually after a long two months Josie's immunity was back, it was over and Josie was well enough to be allowed home. She was so happy to be part of the family again and most importantly, to be reunited with Charlie who she had not seen for such a long time.
All she wanted was to do was stay at home, cuddle Charlie and enjoy the very simple everyday things that she had missed so much and which we so often take for granted.

 
Josie & Charlie Grove 

Weeks passed and Josie seemed to be getting stronger ….but as time went by she started needing more and more platelet transfusions. Eventually it was clear that things were not going well and after some tests her consultant gave her the dreadful news that sadly and hopelessly the Leukaemia was back.

While Josie and her parents were told that chemotherapy might give her more time, ultimately the Leukaemia could not be stopped. A trial drug was an option but in her fragile state after the BMT there was a high chance it would damage her vital organs. Josie asked if she coud have a small dose of the drug to see if it reduced any of the leukaemia cells - if it did, she would consider a full course of the treatment. The new drug was flown in from the US but very soon after it was administered it affected Josie very badly causing her to vomit and fit. 

While waiting for the results, Josie & her family decided to go on a last minute Canal-boat holiday for a tranquil break away from everything. It was then that Josie made the brave decision to stop all her treatment.

Talking about the trial drug, she told her parents that she was hoping that the drug hadn't worked because she just wanted to spend what time she had left being  normal and making some happier memories for her family.


Josie Charlie barge holiday

Josie was nominated by her nurses for a Brave Heart Award, with her prize being some money towards a ball chair. When a photographer came to take Josie's photo for the local paper, the photographer's very surprising picture made it onto the front page. Here was a young girl who knew she was dying but her beautiful smile and sense of fun shone out through the picture.

From that day her story became national news with every newspaper and magazine wanting her story. It was all very surreal, one magazine offered Josie a monthly column and was then astonished to be told by Josie that she would probably be gone by the date they wanted to start the collumn. Josie was such a bright light and so positive that no-one could really believe she was actually dying.


The Journal Dec. 8th 2006

The attention made Josie realize that she had an opportunity to help raise awareness of childhood cancer, so she allowed the Mail on Sunday to interview her. She sat in her ball chair like a little Buddha and told her story straight from the heart. For Josie it was an emotional off-loading of her cancer story and the article had a huge response. 
Read Josie's story as told JO KNOWSLEY and ANDREW CHAPMAN 
" If I have given courage to others then my life has been as full as if I lived to be 100...Life is about helping people and you don't need to live to 100 to do that "
Above: Josie with Charlie and her beads (mentioned in the article)
Each bead telling the story of her first 6-week Bone Marrow Transplant.
Below: Josie relaying her story and her thoughts to journalist, Jo Knowsley.

With additional support from the Journal Newspaper, who set up the 'Josie Grove Appeal' labelling her 'The inspirational Josie Grove', people started donating money to Josie's Leukaemia Fund. It was this money that empowered Josie, enabling her to make a real difference in supporting other children with cancer. It gave her a huge sense of achievement.
Josie spent thousands of pounds on arts and crafts activities, videos, CD's for children & teenagers on her cancer ward - along with new furniture from Ikea ''to brighten up the family room''. Everything was carefully chosen by Josie who knew first hand what a huge difference this would make to children going through long and difficult cancer treatment.

On Christmas Eve Josie achieved one of the wishes she mentioned in the article when she personally chose individual gifts for every child on the cancer ward and handed them over to the nurses to secretly distribute.

While Josie was kept busy helping others she had so much support herself.
Josie wanted to give her family the best Christmas ever. With support from both charities and the public, Josie had an absolutely wonderful Christmas.
It included a trip to London, where she stayed in the penthouse suite of a top hotel, saw The Lion King, went on the London Eye, shopped for presents at Hamley's, had lunch at the Ritz and was generally treated like a superstar.

 

Josie was invited to take Charlie to visit Santa (at his Kielder Forest base) to help make memories for her family and cousins and just before Christmas day a charity rang up Josie's mum and said, "we're sending you a Chef to cook your Christmas Dinner so that you can relax and enjoy the whole day as a family....plus a snow machine to make it feel more Christmassy! "

Another charity organized for Josie to have a helicopter ride over the Northumberland coastline followed by a Thai meal to remind her of pre-cancer days in Bangkok.

Everyone was so generous in supporting Josie. It made a huge difference to her moral and more than anything, she loved the fact that it was all helping her create some much happier memories for her family who had been through so much because of her illness.

After her perfect Christmas Josie's health deteriorated very quickly but Josie never lost her sense of humour, even telling her mum that she was trying to out-live the tube of toothpaste.

The only thing that upset Josie was thinking about her family being upset - so she told them..."you are allowed to miss me but you are not allowed to be sad"

 

 

While Josie's Leukaemia fund went on to donate over £100,000 to help support children with cancer, Josie's last public act was to donate £10,000  to children's cancer research.

A very poorly young lady stood up out of her wheelchair as she handed over a cheque on Thursday 22nd February just 4 days before she passed away. At her request another £10,000 was donated the following week to the Anthony Nolan Trust to help give other people more precious time as she had been given.

 

It was Josie's courageous smile and her positive nature that gained her so much support and happily Josie was able to personally make a very big difference to others during her last precious weeks. 

*********************

And it was during her last days that Josie decided to create something to leave behind as a more personal legacy. She set about designing a dragonfly pendant which would be something meaningful and lasting for the wearer. She was finally being the designer she had always dreamed of becoming and giving a gift to the world that her family could carry forward on her behalf, binding them together even after she was gone.

Josie was a very talented artist and her dream had always been to be a fashion designer. But with her parents working in the jewellery trade she realized that while she would never have the chance to be a clothes designer, she could create a meaningful piece of jewellery that might pass on a little of her strength, courage and happiness to those who needed it most.

Josie had taken comfort from an old fable that used the transformation of a water bug into a dragonfly, as a way to explain dying - (in that they need to leave their pond and their old body in order to be reborn and start a new life in a new beautiful place where they can fly free.)  Josie loved that dragonflies represented a fee spirit, that they symbolize strength, courage & happiness and spend their short lives dancing!...so she chose a dragonfly as her motif.

Time was of the essence and Josie's beautiful design was rushed off to be made as quickly as quickly as possible. The first two pendants arrived within  a matter of days for her approval. Josie was absolutely delighted with them... one pendant in silver and one in gold with a tiny diamond in the body....and as Josie had wanted, they both had the words 'Strength, Courage & Happiness' inscribed on the back.

Josie passed away just three days after seeing her pendant design become a reality. She died content in the knowledge that she had created something lasting and precious that might give comfort to others..... Like a dragonfly she left the pond and headed off to a beautiful new life in the sky one quiet Monday afternoon. Josie died at her home in Corbridge on February 26th 2007 in peace, with dignity, grace and with a rare acceptance.

Josie was just 16 yrs and 11 months old when she died but she was recognized for a maturity and wisdom beyond her years (even being nominated by as one of the most inspirational people of 2007 in Saga magazine) and her story continues to be an inspiration to many people, young and old alike.

Since her death in 2007 Josie has passed a little piece of her shining light to many thousands of people. Josie's family keep her last wish alive by gifting her beautiful silver dragonfly pendant to young patients going through bone marrow transplants to pass on a little of her strength courage & happiness as she had wished.

Josie Grove Designs exists in order to preserve the last wishes of Josie Madeline Grove. It is not affiliated with or connected to any Charitable organisation or Trust 

You can find more information on the About Us page

Josie Madeline Grove April 5th 1990- February 26th 2007

The girl who was always smiling!