We hope that through this fund, Daniel’s memory can live on. We hope that research which we can help to fund will make a difference to children in Daniel’s situation in the future.
We hope that one day, through ongoing research, all cancer can be cured.
When we see a rainbow it reminds us of everything we hope for.
Daniel was diagnosed in May 2017 at the age of four and a half, with Wilms' tumour, a type of childhood kidney cancer. Daniel then faced treatment through the children’s hospital in Belfast. He had intense chemotherapy, radiotherapy, two major surgeries in England, countless procedures, blood transfusions, scans, tests, hospital visits and stays.
Throughout this, Daniel inspired so many with his boundless energy, twinkling eyes, broad smile and his trademark thumbs up. Daniel simply was a typical little boy.
After his first surgery in July 2017 to remove his right kidney, Daniel’s treatment plan was altered to the ‘high risk’ protocol, which started in August. He coped well with this, dealing with the many side effects of chemo and radiotherapy, but he managed to stay on track.
He had clear scans in October 2017, which was encouraging, so we plodded on.
It was at his next routine scans in February 2018, and only half way through his treatment plan, that we were given the devastating news that his cancer had relapsed, this time a tumour could be seen in his liver. As he had been on the high risk protocol to this point, Daniel had already received a lot of the drugs used to treat childhood cancers. The options already felt limited, but he started a relapse protocol plan, which as usual, he coped remarkably well with.
In April 2018 we returned to Leeds and underwent another major surgery to remove the liver tumour. Daniel bounced back from this, he was amazing!
Disappointingly, the tumour showed little response to the relapse chemo plan Daniel had been on.
There were no other conventional drugs to try. But Daniel continued to amaze us as he recovered from surgery and we had a wonderful two month period while we waited to hear about any other possible options which included drug trials using targeted therapy and genome sequencing.
We made some precious memories, living day to day, trips here and there, all the time hoping and praying that the doctors were wrong, that the happy, apparently ‘well’, energetic child in front of us could possibly be cancer free? We were praying for a miracle.
Because Daniel had not had any treatment since before surgery in April, his immune system was stronger and he was able to enjoy outings, some little holidays, integrating with other children, taking part in some school activities. He even joined his primary one class for Sports Day on 12 June, winning a gold and silver medal.
Less than a week after Sports Day, Daniel very quickly became symptomatic. It became clear that his cancer had returned, and was progressing at a rapid rate. He did have emergency radiotherapy, several surgical procedures and a chemo combination including a newer targeted drug. But the aggressive cancer was out of our reach.
Daniel passed away at home on 13 August 2018, aged 5, just a few weeks before his sixth birthday.
We miss Daniel more than words could express, but we hold onto hope. Hope that one day we will be reunited with Daniel in heaven. Hope that this fund may help with research into treatment and the way these cancers can be diagnosed in order to target treatment at an earlier stage. Hope that one day there will be a cure and no more children will have to die from cancer.
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Text CCLGDANIEL to 70085 to donate £5.
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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 Daniel's Rainbow Fund so that your donation is allocated to the correct fund.
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