David Lee Robinson

Update

30 May, 2011

Since our last update in February, when David's tumours had unfortunately progressed, David has been undergoing experimental treatment as part of a clinical trial, which by an incredible twist of fate, became available, right here in Leicester, earlier this year...

As you will have read, previously, Almina had spent the past two years searching the internet, making phonecalls and sending hundreds of e-mails across the world to find any experimental treatment which may help David as he was fast exhausting all the available standard medical treatments available for Medulloblastoma - which cannot be cured, once it has spread. Finding the experimental trial, for this very type of brain tumour, in the USA, after months of sending out e-mails into the early hours, was a glimmer of hope for David and Almina.

With the help of so many incredible people, the campaign began straight away to get David enrolled onto the trial and great progress was being made to get David there but the tumours were progressing faster and making David so unwell that it was a race against time to ensure he qualified for the clinical trial in the USA and remained well enough to travel.

Despite new combinations of chemotherapy and further operations, the existing tumours grew rapidly and spread and David deteriorated very quickly. Following an e-mail from Almina for help with documentation to send to the USA, David's incredible surgeon at the Queen's Medical Centre, in Nottingham, took the decision, with David, to perform two further surgeries at the end of 2010 to shrink the tumours and give David the best chance of being well enough to travel, for the experimental treatment, in the USA. Having now undergone five brain surgeries, it was utterly devastating to find that shortly after the last operation, the tumours has progressed and spread, even further. Things were looking very bleak and it was tough to come to terms with yet more shattering news.

So, when a meeting was scheduled for David to discuss a clinical trial, for Medulloblastoma, right here is Leicester, it took a few telephone calls from David and Almina to clarify that a mistake had not been made. It was nothing short of a miracle for the couple that after all the effort to try and enrol on an experimental trial in the USA and David's worsening condition making travel less and less likely, an almost identical trial had now become available right here at home, in Leicester. After an intense month of tests to ensure David was eligible to take part and despite some heart-stopping glitches threatening his eligibility as David experienced seizures due to the growth of the tumours and needed further medication to control these, he was finally accepted for enrolment onto the clinical trial.

Despite some uncomfortable side-effects, David has been coping very well with the experimental drugs and has noticed a steady improvement in his symptoms. Having been very active in the past, running half marathons, playing football, cycling to work, he has not been able to enjoy these things for a couple of years due to pain, unsteadiness and weakness but he has, this month, finally cycled for the first time in over two years. David and Almina are both mindful of how quickly things can, and have in the past changed but they are enjoying having some good news and, for now, being able to do .normal' things.

Both David and his baby daughter have just celebrated milestone birthdays . David, his 30th and his daughter, her first. Whilst both received lovely gifts, Amelia's birthday brought the best one . David's latest scan result, which indicated that the tumours in his brain and spine were shrinking at this time. This is the first time in over two years that a scan had revealed some much longed-for positive results for David, his wife Almina and their little daughter Amelia. To say the family and all their friends and colleagues are happy is quite an understatement!

The positive news is welcome relief after two incredibly tough years which would test the courage and faith of anyone but the brave couple have found incredible strength to draw on any small positive in the face of such adversity and had gone on to get married and have a beautiful daughter who is now giving them both more strength than ever.

The results show shrinkage of the tumours but they are by no means gone. Medulloblastoma is a very aggressive cancer and it has long spread beyond a single site . David is battling at least 4 tumours in his brain and two in his spine but he has so far defied this awful disease beyond the expectations of anyone. David is happy to be well enough to enjoy spending time with his wife and daughter who is a happy, bright and active one year-old.

David is set to continue on the clinical trial, which involves many hospital visits, tests and scans, for as long as the treatment is benefitting him. Whilst it is an intense trial involving many regular checks, the incredible work of the consultants and nurses at the Leicester Royal Infirmary, who are involved in the trial, make it as stress-free and comfortable as possible, for David.

The fund raised by so many family members, friends, colleagues and all the generous people who have been touched by David's 13 year fight with brain tumours, for a clinical trial in the USA, is still held in trust for David by trustees at the Leicestershire Constabulary. The fund will continue to be held in this way until the time a decision needs to be made whether David can continue to receive treatment, here, or in the USA, depending on the progression of the disease. For now, everyone hopes that David continues to benefit from his current treatment and that he is well for as long as possible.

David and Almina would like to thank everyone out there for the unrelenting support and well wishes in this toughest of journeys. Please keep visiting David's website for further news and feel free to leave a message.