Ben had widespread disease which had affected his bone marrow, liver, spine and the skull surrounding his eye sockets. Like most neuroblastoma sufferers, Ben had widespread disease before it was discovered. The early symptoms were barely recognisable and could have been attributed to any childhood illness.
Ben Thomas Lee was born on 28th September, 2009. He weighed in at a healthy 9lb 7lb and immediately acquired the nickname Big Ben! He gave his first smile at 4 weeks old and people never failed to comment upon what an ‘easy’ baby he was to Helen, Ben’s mum. Helen and dad Steven felt their little family was complete. They had the two strapping boys they had always wanted.
Then, when Ben was 14 months old, neuroblastoma turned the Lee family’s world upside down. It was late November 2010 and Ben had been irritable for a few days, sleeping badly with a poor appetite. Helen and Steven had noticed that he appeared to have acquired two very faint black eyes. Like most toddlers, Ben was never on his feet for long and with a big brother to wrestle with, was always taking knocks. As most parents would, they put it down to teething, a bump on the nose and the fact that his big brother Max had tonsillitis. A quick trip to the doctors and a course of antibiotics were prescribed for what appeared to be an ear, nose and throat infection with a completely unrelated bang on the nose.
However, Ben’s condition deteriorated, and by Monday 6th December returned to see the GP. He had been running a temperature and was not happy at all. The GP immediately referred him to the Queen Elizabeth Hospital in Gateshead. Ben was tested and the general diagnosis was a viral infection. He was just about to be discharged on Wednesday 8th December when the consultant decided to examine Ben’s abdomen, discovering an enlarged liver. Ben returned the next morning for an ultrasound, and four hours later was on his way to ward 4, Paediatric Oncology at The Great North Children’s Hospital, RVI, Newcastle upon Tyne.
Ben was given the diagnosis of neuroblastoma and his parents told that he had a 50% chance of survival. Ben’s consultant explained how aggressive his cancer was and how the treatment he would receive had to be equally as aggressive. The consultant thought that Ben’s tumour to have grown over two weeks to 11cm. He immediately received a blood and platelet transfusion as well as extensive tests.
Brave Ben had surgery to insert a central line and underwent biopsy and bone marrow aspirates. He went through more than 15 blood and platelet transfusions, five hour surgery to remove the primary tumour, had another stay in Paediatric Intensive Care Unit, four days of stem cell harvesting and stem cell reinfusion. He was given 70 days of intensive chemotherapy, extensive and regular invasive tests—during one test, Ben’s lungs collapsed in theatre and he ended up in Paediatric Intensive Care Unit.
At this stage Ben’s mum Helen contacted the NCCA UK as she was ready to travel abroad to Germany to get treatment for her beautiful, brave son, and the charity was happy to what it could to help Ben and the Lee family.
However, during the first day of high dose chemotherapy, Ben began having some very high temperatures. After an ultrasound it was confirmed that Ben had relapsed. Ben left hospital on 26th June but went back every day in the following week for various tests. Ben’s bone marrow test seemed to show both solid and liquid samples were free of cancer. The tests suggested that there was no detectable disease other than tumour recurrence at the primary site. The family hoped that Ben could receive immunotherapy treatment following further radiotherapy.
However, Helen and Steven were then dealt the absolutely devastating news that Ben’s cancer had progressed to a terminal stage.
On 1st July 2011, Ben went home to be surrounded by love and to spend time with his brother Max and his mum and dad. His doctors did not think he would live for more than a day or two, but with the help of big brother Max, Big Ben battled on for 6 more weeks. During their time together, Ben, Max, Helen and Steven spent every minute that they could together as a family.
Helen said, “we went to the zoo to meet the elephants, to Center Parcs, to the beach, the park and we created some very special family memories. Our beautiful, brave little man lost his nine month battle with Neuroblastoma on 8th August, 2011 at the tender age of 22 months.
We miss Ben every second of every day.
We will continue to raise funds for the Neuroblastoma Alliance in memory of our precious son. We hope more than anything else in the world that Ben’s memory will live on in those who met him or were touched by his incredible spirit and light.”