A six-year-old’s “growing pains” were actually a sign of a rare childhood cancer - and now the desperate family need to raise £280,000 for her treatment.
Eden Smith, from Holmfirth, west Yorkshire, had been complaining of sore legs for a few weeks.
The youngster's parents, Lee, 47, and Jen, 46, put it down to their daughter just getting taller.
But when she returned to school after the Easter break, she was sent home as she was pale, shaking and in even more pain.
After further tests a few weeks later, Lee and Jen were given the heartbreaking news that she had neuroblastoma, a rare childhood cancer.
Doctors found tumours throughout her body and she was classed as having a ‘high risk’ version of the disease because of how aggressive it was.
After gruelling chemotherapy in a bid to shrink the main tumour in her abdomen enough for surgery, her family hope she will eventually reach remission - but the risks of relapse are high.
With that in mind, Lee and Jen are desperate to raise the money to travel to the US for the bivalent vaccine, which is thought to reduce this risk significantly by training the immune system to identify and destroy neuroblastoma cells lurking in the body after chemotherapy.
“This is a rare form of children’s cancer which is diagnosed in fewer than 100 children a year,” Lee told Jam Press.
“50% of these are classed as high risk neuroblastoma like Eden’s. Survival rates for high risk Neuroblastoma are around 50% and of those survivors 60% of them will suffer a relapse.
“This is due to the aggressive nature of the cancer. After relapse the survival chances are around 15%.
“This is why we need funding to raise enough money to send Eden to America for the bivalent vaccine to prevent it recurring. The bivalent vaccine improves overall survival to around 91% with an 86% event free survival.
“To access the bivalent vaccine Eden would need to achieve remission or remission after first relapse.
“The cost of the bivalent vaccine is approximately £280,000. This includes flights, hotels and scans for the seven trips required to have the vaccine.”
The nightmare began for the family shortly before Eden’s sixth birthday.
Teacher Jen said: “For a couple of weeks, Eden had been complaining of pains in her legs which we had just put down to growing pains.
“We had a telephone consultation with the nurse practitioner who also said growing pains.
“When she returned to school on the Monday following the Easter break, she was sent home on the first day because she was complaining of leg pain, drip-white and shaking.
“Windows in school were constantly open due to clean airflow needed to reduce risk of Covid, but this was more than her just being cold so I took her to A&E where they x-rayed her legs and referred us to a paediatric orthopaedic clinic later that week.”
The following day, she was sent home from school again and Lee called the doctor, who prescribed something to help with the pain.
A few days later, Eden saw the paediatric orthopaedic consultant, who was more concerned about her symptoms.
Jen said: “He ordered an ‘urgent’ blood test. Following that he sent us to Calderdale where they took more bloods and kept us in for an MRI the following morning.
“Eden, our beautiful six-year-old little girl, had cancer.”
Chemotherapy started immediately, with Eden and Jen staying in hospital for a week at a time, before going home for a few days and then heading back for more, for a full 80 days.
Service manager Lee said: “When I heard the news I was numb, confused and filled with fear. I don’t think it really kicked in straight away as we were separated after the news.
“I went home and only when I got home did I take on board what I had just heard. It was then that I started thinking how long we would have Eden in our lives, days, weeks, months or years.”
Sadly, after the treatment, scans showed the cancer had responded but not enough for them to carry out surgery on the main tumour in her abdomen.
Now, she is in the middle of five more rounds of chemotherapy, each lasting five days and her team hopes she will then be able to have surgery on 15 December.
Even after surgery, Eden will have to go through more gruelling treatment including high dose chemo followed by radiotherapy and immunotherapy, which will hopefully lead to remission.
Jen said: “The money raised will be used for this treatment if it is needed. Any money not needed will be distributed between other families going through the same battle and Neuroblastoma UK.”
Lee added: “Our community have really jumped on board with helping raise funds.
“We have over 35 already organised. We are organising a Gardens of Eden tour which is a 22 mile walk in February and we already have over 20 teams of five people registered. We are hoping to get between 30 and 40 teams meaning over 150 people taking part to date.
"We are overwhelmed on a daily basis by people’s kindness and generosity; not only with fundraising but with emotional support, positive thoughts and prayers."
To contribute to the family's fund, click here.
