Josie's Interview for The Mail on Sunday 9th Dec 2007 Posted on 4 Apr 13:29 , 0 comments
In December 2006 Josie won a bravery award for her courage as she knowingly faced the end of her life. The picture taken of Josie made the front page of the Journal and this sparked a reaction in the media which bought her story to the attention of the whole nation.
A few days later Josie decided to give an open and honest interview to Jo Knowsley for The Mail on Sunday in the hope that it would raise more awareness of childhood terminal cancer.
You can read the story below.................
By JO KNOWSLEY and ANDREW CHAPMAN for The Mail on Sunday 9th December 2006
Each of the vivid baubles marks a stage in her relentless and gruelling treatment for acute myeloid leukaemia. "Green is a bad day, yellow a good one", she says, matter of factly.
"Orange is when the doctor visited. The blue beads show the days I had chemotherapy, and the pink ones signify the injections. The clear hearts are radiotherapy."
The one gold star in the necklace marks the day of her first bone marrow transplant. Most notable after that are the dozen or so red beads that indicate her blood transfusions.
It is a memento that Josie's family will treasure long after their eldest daughter has gone. It is also, most poignantly, the favorite toy of her eight-month-old baby brother Charlie, born on Josie's 16th birthday on April 5 - and who at one point seemed the greatest hope of curing his sister's disease.
But despite this unplanned addition to the family being a perfect match for Josie's bone marrow, Charlie's placenta did not provide enough stem cells for a transplant. Two transplants from anonymous donors have failed to cure the disease, as have repeated courses of chemotherapy and radiotherapy.
Last week, Josie - a talented artist and champion swimmer - announced that she had refused further cancer treatment because she wanted to spend a last Christmas at home with her family - parents Cliff, 46, and Jacqui, 44, brother Freddie, 13, sister Libby, 11, and little Charlie.
"I have had enough of hospitals", she says calmly. "I have had two years of extensive treatment. Now I just want to be at home with the people I love."
Josie refuses to accept she is being brave. But she wants to tell her story to raise awareness of the silent courage of so many of Britain's child cancer victims and to raise money for cancer research. Her family have set up a fund and promoting it, Josie knows, will be her final and most important mission.
Speaking at the family's terrace home in Corbridge, Northumberland, she says: "If I have given courage to others suffering from leukaemia, then my life has been as full as if I had lived to be 100. The main thing in life is to help other people. And I don't need to live to be 100 to do that.
"Many children have gone through the same treatment as me - some have had far worse than mine. In hospital I see a lot of children looking very ill and poorly. I don't think I have ever looked as poorly as some of them."
Josie doesn't know how much time she has left. "When I was told by the doctors in September that they could do no more for me, we thought it would be a couple of months or even just weeks.
"I had no idea I would make it to Christmas. I think that being positive and just having fun has kept me well. Good vibes give you a boost.
"I want to give my family a lot of good memories by having a great Christmas with everyone. I'd also love to give lots of toys to kids in the cancer ward.
"My decision, in the end, was simple. I have spent so much of the past two years in hospitals having treatment, and missed so much of family life and my brother and sister growing up.
"When I realised the drugs weren't helping - that there was little that could be done - I just wanted to be at home doing all the things I love doing with Mum, Dad and the family."
Josie, who endures a blood transfusion every fortnight, sits like a little buddha in the ball chair she was given by the Brave Hearts charity last week - one of 11 children to be rewarded for their courage in battling cancer.
In a corner of the living room lie the red and white striped stockings she wore at a Christmas party for teenage cancer sufferers last week. Dressed as an elf and with the help of morphine, she danced - for the first time in months - into the early hours.
On a table is the Christmas card she designed for the Children's Cancer Fund - a drawing of a red-nosed reindeer with a bell around its neck, clutching a branch of mistletoe. It has raised £1,500 for the charity. On a wall hangs one of Josie's many paintings - a flower in black and gold acrylic. Her parents treasure piles upon piles of her artwork.
But it is Josie's decision to refuse further treatment that has deeply touched the nation. Letters have flooded into the house from people moved by her story. One of them was addressed simply to "the bravest little girl in Corbridge".
"Can you believe that it reached us?" asks her mother Jacqui. "Josie seems to have touched a nerve with so many people. The support has been quite amazing."
It is Josie's unremitting humour, energy and courage that so endear her to all who meet her.
Even when doctors gave her the dreadful news that there would be no cure, she quipped, as her parents sat in stunned silence: "Oh dear - what a kerfuffle." Then she announced that she simply wanted to go home.
The ordeal for Josie and her family began just over two years ago when she was diagnosed with the rare condition in Bangkok. The family, from Crowborough, East Sussex, had moved there in 1997 when Josie was just seven after her father, a jeweller, was approached to design commemorative coins by the King of Thailand. Then Cliff and Jacqui, a jewellery designer, decided to sell their home in Britain and launch their own business there.
For Josie and her siblings, it meant idyllic warm days spent swimming and playing beside lakes and rivers with friends they met at their international school. Indeed Josie became a champion swimmer, though as a talented artist she had set her sights on a future in design and textiles.
Then, at 14, she was struck by a mysterious lethargy that caused her to give up sport. She was diagnosed with acute myeloid leukaemia (AML).
The most common leukaemia, which accounts for more than 80 per cent of childhood cases, is more easily treatable. But Josie's condition was the more difficult - and was further complicated by being a substrain of that.
Still, the family points out, some children with AML do fully recover. At first they were confident that Josie would do so, even though when she was diagnosed the doctors said that, without treatment, she had less than a week to live. A telltale symptom - pale lips - had been disguised by her suntan.
Josie received immediate chemotherapy and was flown back to Britain for her first bone marrow transplant at the Royal Marsden Hospital in Surrey. The family then moved to Corbridge to be near Jacqui's sister and Josie's godmother, Carolyn.
Josie was unaware that her condition was so life-threatening. "I thought of cancer as tumours", she says. "And I didn't have those so I thought I would get better."
There were early signs of hope. The first transplant seemed to work, but then Josie suffered a crippling relapse. Jacqui's unexpected pregnancy raised their spirits when the baby was found to be a perfect match for Josie's bone marrow, but doctors failed to gather enough stem cells from the placenta.
A second transplant was made possible by another anonymous donor. But by late summer last year, doctors were running out of options. Josie's cancer determinedly returned after each treatment, seemingly with more vigour.
She agreed to a trial of a new drug "because I wanted to do it for my parents". But in her heart she had already decided that she wanted no further treatment.
Jacqui says: "Josie has been so brave. She has endured very painful treatments, losing her hair and a number of things no one should ever expect a teenager to go through. She has hardly ever complained."
Instead, she has ploughed her energy into raising awareness of the disease. She has stayed in touch with many of the children she has met at the Royal Victoria Infirmary in Newcastle, where she has been treated, giving them hope that their treatment can be successful.
"I want people to know that you should have treatment to help fight cancer", Josie says. "But it is also important, when nothing else can be done, to enjoy those last critical days and weeks of your life."
Dr Rod Skinner, consultant in paediatric oncology at the Royal Victoria, says: "Josie is a remarkable young lady. She's really brave. Her case is very special and unusual, but it is important to make the point that most children who have leukaemia are cured."
Her father Cliff admits: "Josie,s illness has made us think differently about things. If she had not been diagnosed with leukaemia and we had not returned to Britain, we would have been in Krabi for Christmas 2004 with Jacqui's parents - at the time of the tsunami.
"The hotel we had booked was demolished and many people died. We would have been among them.
"These have been difficult times for us, but this family is not frightened to talk about death. We are not religious, but we are spiritual."
Over the past few months, Josie has had trips to London with her family, has been Christmas shopping and had a helicopter ride over Newcastle provided by the Willow Trust, a charity for children with terminal diseases.
Now, secure with her family and being cared for by Macmillan nurses who visit her regularly, she has her own wish list for Christmas. "I want a Scalextric set - a boy's toy, I guess", she says.
"And I'd really like an iguana lizard, though I've been told that's not possible. But what I want most is a low-key, traditional family Christmas."
The living room is adorned with an enormous and prettily decorated tree. Underneath it lie a dozen presents - "most of them for Charlie", Josie giggles.
Jacqui adds: "Josie wants the biggest turkey - she wanted the biggest real tree. She wants everything to be perfect. A lot of family will be visiting us. It will be the special Christmas Josie wants."
Josie confides: "I believe that when I go, it will be sudden, like a click. I believe I will see a lot of people - friends who have died - and be reunited with them. I believe I will see my family again, that we won't really be separated.
"I don't feel scared. I want to enjoy my last days. I still want to have fun. And I guess that's my message. That people shouldn't focus on the negative, but on things that make them and others feel good inside.
"If anyone remembers me, I'd like it to be just as a girl who has enjoyed her life, as someone who always found a way to do things a little differently."