Little Eden Smith is home for Christmas and that’s a present her mum, dad and big sister hardly dared dream for.
Eden, six, of Holmfirth, is eight months into a battle with neuroblastoma, a rare and aggressive childhood cancer.
Eden’s treatment is going well but to give her the best chance of beating the disease for good she needs a pioneering vaccine treatment only available in New York.
The Bivalent Vaccine treatment, with flights, travel and other expenses, will cost between £250,000 and £280,000 at the latest estimate, and a whole community has mobilised to help the family raise the money needed.
Bubbly Eden, diagnosed in April, has just undergone a gruelling round of chemotherapy and on December 15 had surgery to remove the remains of the tumour – which had split into six – from her stomach.
There were complications when Eden didn’t start eating as quickly as doctors hoped but medics at Leeds General Infirmary were able to get Eden well enough to be back at home for Christmas with mum Jen Ramsden, dad Lee Smith and sister Tia, aged nine.
Lee, 47, said: “To be honest we had written off Christmas two months ago. As long as Eden was ok Christmas didn’t matter but we do have a turkey and a tree!”
Eden was diagnosed with high-risk neuroblastoma in April, just a month after her sixth birthday.
A couple of weeks before her diagnosis she had been complaining of pain in her legs and was unsteady on her feet.
At first Eden’s problems were dismissed as growing pains but when Eden was twice sent home from school shivering and drip white, more tests were needed. An MRI scan found a tumour 14cm by 10cm by 12cm.
“The day we got the news our world fell apart,” said Lee. “Our happy, beautiful, polite little girl was being eaten from the inside by this aggressive form of cancer.”
The cancer had also spread to seven other parts of her body and 80 days of chemotherapy started which required several blood transfusions, bone marrow aspirates and stem-cell harvesting.
After the first eight rounds of chemotherapy, six more rounds of BIT chemotherapy were needed before Eden could move to the next stage of treatment, surgery to remove the main tumour in her stomach.
The tumour had shrunk and spilt into six but the surgeon is confident it was all removed. There’s still another six months of treatment, however, starting with high dose chemotherapy in January followed by radiotherapy and immunotherapy. Even then there are no guarantees.
Lee said: “If Eden goes into remission it’s such an aggressive cancer that 60% of children relapse and if it comes back the survival rate drops to about 15%.
“The vaccine in America boosts the overall survival rate to 91% and 86% event-free.”
Taking part in the clinical trial at the Memorial Sloan Kettering Cancer Center in New York will involve seven jabs and seven trips to the States.
The current total cost is estimated at £250,000 to £280,000 though the Memorial Sloan has a sister hospital in Barcelona and if it became possible to go there the costs would come down to £170,000 to £200,000, still a huge sum.
Six weeks ago the family launched a massive fundraising campaign called Eden’s Army to raise the money needed.
A Halloween weekend alone raised £7,000 and the fund now stands at over £37,000. The family have teamed up with the organisation Solving Kids’ Cancer, which helps families raise money for neuroblastoma treatment. Solving Kids’ Cancer has a 100% success rate in achieving its targets.
There are big events lined up for early 2022 including The Gardens of Eden Tour on February 12, a 22-mile walk from Holmfirth to Huddersfield and back. More than 200 walkers in teams of five are expected to take part and up to £30,000 could be raised on the day.
There will also be a Wear Pink for Eden Day to celebrate her seventh birthday on March 10 followed by Eden’s Pink Ball, a black tie event at the Sons of the North in Armitage Bridge on March 26. The target is £10,000 and 170 of the 200 tickets have already been sold.
“Everybody in Holmfirth and Huddersfield have jumped on board and we are getting support from all over the country,” said Lee.
“The response has been unbelievable and we still can’t get our heads round it. We get messages every day.
“A quarter of a million pounds sounds like a big figure but six weeks ago we had £7,000 and now we have £37,000. With the events we’ve got planned there’s a glimmer of hope we’ll get there.”
To find out more about Eden’s campaign search for Eden’s Fight against Cancer – Eden’s Army on Facebook or donate at www.solvingkidscancer.org.uk/Appeal/eden