Eden has been complaining about sore legs for weeks (Picture: Jam Press)
Eden Smith, six, from Holmfirth, West Yorkshire, had been suffering from sore legs for weeks at the start of the year.
Her parents Lee, 47, and Jen, 46, assumed the pain was the result of growth spurts, but the truth was they were a sign of a rare childhood cancer.
Now the family urgently needs £280,000 for revolutionary treatment.
The discovery of the true cause of Eden’s leg pain came when she was sent home from school after turning pale and beginning to tremble from the pain.
The issue was investigated, and after tests, Lee and Jen received news that parents never want to hear. Their daughter Eden was diagnosed with neuroblastoma, a rare cancer that develops from nerve cells left behind during a baby’s development in the womb.
Doctors discovered tumors throughout her body, and she was considered to have a high-risk form of the disease.
Eden underwent grueling chemotherapy sessions in hopes of shrinking the main tumor in her abdomen. Doctors wanted to reduce the size so that she could be operated on.
Her family now hopes that she will eventually go into remission, but the risks of relapse are high.
Eden Smith before her diagnosis (Picture: Jam Press)
That’s why Lee and Jen are trying to raise money to travel to the US for the bivalent vaccine, which is believed to significantly reduce the risk of relapse. The vaccine helps train the immune system to recognize and kill neuroblastoma cells in the body after chemotherapy.
“This is a rare form of childhood cancer that is diagnosed in fewer than 100 children a year,” explains Lee.
“Half of these are classified as high-risk neuroblastoma, like Eden’s. Survival rates for high risk neuroblastoma are about 50% and of those survivors, 60% of them will relapse.
‘This is due to the aggressive nature of the cancer. After a relapse, the survival rate is about 15%.
“That’s why we need money to raise enough money to send Eden to America for the bivalent vaccine to prevent a recurrence.
‘The bivalent vaccine improves overall survival to about 91% with an event-free survival of 86%. To access the bivalent vaccine, Eden would have to achieve remission or remission after the first relapse.
‘The cost of the bivalent vaccine is approximately £280,000. This includes flights, hotels and scans for the seven trips needed to get the vaccine.
Eden during her second round of chemotherapy (Picture: Jam Press)
Jen, a teacher, remembers that the nightmare started after Eden’s sixth birthday.
“For a few weeks, Eden complained of pain in her legs, which we had just attributed to growing pains,” she says.
‘We had a telephone consultation with the nurse specialist who also said growing pains. When she returned to school the Monday after the Easter break, she was sent home the first day because she complained of pain in her legs, dripping whites and shaking.
“The windows in the school were constantly open because of the clean airflow needed to reduce the risk of Covid, but this was more than just being cold, so I took her to the emergency room where she had her legs X-rayed.” made (nothing broken) and referred us to a pediatric orthopedic clinic later that week.’
The next day Eden went back to school, but was sent home again. Lee called the doctor and the six-year-old was prescribed pain medication.
Finally, Eden saw the pediatric orthopedic consultant, who was very concerned about her symptoms.
“He ordered an urgent blood test,” Jen explains. “Then he sent us to Calderdale where they took more blood and held us up for an MRI the next morning.
Eden after losing her hair (Picture: Jam Press)
“We were asked to go with the doctors to a room where we were told the news that crushed us.
“Eden, our beautiful six-year-old girl, had cancer.”
Eden and Jen were then taken to Leeds by ambulance, with Lee following in his car.
“Not only did she have a little bit of cancer – it was in her abdomen (which we later learned was the site of the main tumor), her back, her legs, her chest, the back of her head and above her eye. ‘ said Jen.
The chemotherapy treatment started right away. This meant that Eden and Jen had to stay in the hospital for a week at a time, before going home for a few days and then going back for more. This took 80 days.
Service manager Lee was unable to stay with Eden during treatment due to Covid restrictions and so stayed home with Eden’s older sister Tia, who is nine.
“When I heard the news, I was numb, confused and filled with fear,” Lee recalls. ‘I don’t think it started right away because we broke up after the news’
“I went home and only when I got home did I accept what I had just heard.
“It was then that I began to think how long we would have Eden in our lives; days, weeks, months or years?’
Eden with her mother, father and sister (Picture: Jam Press)
The treatment scans showed that the cancer had responded initially, but not enough to perform surgery on the main tumor in her abdomen. Eden is now undergoing five more chemotherapy treatments of five days each. Her team hopes to have surgery on December 15.
But even after surgery, Eden will have to undergo more severe treatment, including high-dose chemotherapy followed by radiotherapy and immunotherapy.
This will hopefully put her on the path of remission.
Because of the relapse risk, the family wants to get Eden’s bivalent vaccine as soon as possible. They also need money for more immunotherapy if the treatment stops working in the UK.
“The money raised will be used for this treatment as needed,” Jen noted. “Any money not needed will be split between other families going through the same struggle and Neuroblastoma UK.”
Lee added: “Our community has really jumped on board by helping to raise money.
“It’s as if the whole community has put their arms around us and given us a big hug.
‘We are daily overwhelmed by the kindness and generosity of people; not only with fundraising, but also with emotional support, positive thoughts and prayers.’
You can donate to Eden’s fundraiser here.
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