Joel's mum Mel says: "One day a child will recover from this awful disease, sadly for us, that was not our Joel. We have decided to try to bring some hope to those children and families who find themselves going through the same ordeal. The money we raise will be going to support research and clinical trials for Spinal AT/RTs as there are currently none to support this rare type of childhood cancer." Here, she tells his story...
Joel. The bravest little boy with the most incredible smile. We will never forget his loving nature and his inspiring strength.
Just after Joel's second birthday in late June 2014, he began showing signs of discomfort when standing and walking, so we took him to the GP who suggested he had developed irritable hip syndrome, a common occurrence in two year olds. Joel's pain and discomfort steady worsened over the next few weeks and, despite numerous return visits to the GP and maximum allowed dosages of paracetamol and ibuprofen, finally resulted in a referral to the Royal United Hospital, in Bath, to see a paediatrician.
Unfortunately, for Joel, too little too late. Nobody could have imagined what the cause of his immense pain could have been.
The pain for Joel was intense and on 9th July we insisted he was referred back to the hospital and Joel was observed overnight. At 10pm on 9th July, I lifted Joel from the pushchair, where he had been sleeping, into bed and noticed that his legs were floppy and that he did not respond when I tickled his feet. He was examined immediately and had an urgent MRI under general anaesthetic at 12.30am, which showed a spinal cord tumour which caused cord compression resulting in paraplegia. Joel had to be transferred urgently to the Bristol Children's hospital for an emergency spinal operation. By 4am Joel and I were in an ambulance on our way to Bristol and arrived just before sunrise.
I had no idea what to expect and no idea whether Joel would even survive the spinal operation. He was so weak and still in so much pain. I was unable to even hold him and comfort him. I was informed of the details of the MRI scan and the seriousness of the operation and told to contact Dad and advised for him and big brother, Ethan, to come to see Joel as soon as possible. They wanted to do the operation at 8am. Dad and Ethan arrived with moments to spare. Kisses and cuddles given, I went with Joel down to the operating theatre. After a nine hour operation to remove the tumour, Joel was admitted to HDU (High Dependency Unit) for two days before being transferred to the Neurology ward. He was kept flat on his back, unable to move, for two weeks.
Our gorgeous 2 year old son was diagnosed with an Atypical Teratoid/ Rhabdoid Tumour, AT/RT, on 17th July 2014.
The Rhabdoid tumour is a very rare, fast-growing, aggressive, malignant tumour and so treatment needed to be started straight away. Joel needed to have intensive chemotherapy, and radiotherapy under general anaesthetic, Monday to Friday. Joel was moved to the Oncology ward and chemotherapy began on 25th July.
Following the eighth cycle of chemotherapy on 10th November, Joel was admitted to PICU (Paediatric Intensive Care Unit) as he had developed a serious lung condition. Joel was intubated and was put onto an oscillator (a noisy ventilator) and required high pressures to oxygenate him.
During this time, Joel was given an array of drugs to keep him paralysed and sedated, as well as large amounts of pain killers. A couple of days later, Joel was weaned off the oscillator but needed to go back on it less than twenty-four hours later due to an acute deterioration and further pulmonary haemorrhage. He was extremely unstable at this time, and we nearly lost him. He was again stabilised on the oscillator following this episode and again weaned off on 17th November and onto a conventional ventilator. He was finally taken off the ventilator and extubated on 22nd November and, to our great relief, finally discharged from PICU on 25th November.
Once Joel was discharged from PICU, the decision was made by the Oncology team not to commence the ninth cycle as this was not thought to be in Joel’s best interests. On 13th December, Joel was discharged from hospital. We all had a wonderful Christmas and Joel was doing really well. He had worked so hard to regain some of the movement in his lower body and had started to crawl again, as well as standing and taking a few aided steps.
Then, in mid-January, Joel started to deteriorate rapidly and on January 23rd had to have an emergency MRI scan which revealed two more tumours had grown on his spine.
Sadly, Joel had lost his battle and passed away on Sunday 25th January at home in his bed.
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You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Joel Prince Starlight Fund so that your donation is allocated to the correct fund.