On the 15 November 2012 at 6pm while having dinner Alexander complained of feeling unwell. As he stood up he lost the power in his left arm and leg and collapsed. Alexander was rushed to Stoke Mandeville hospital where they performed an MRI scan which showed lesions in the cerebellum.
Alexander was immediately transferred by ambulance to the John Radcliffe Hospital (JR) in Oxford. After a number of surgical interventions on the 21 November 2012 we were given the devastating news that Alexander had a stage 4 brain tumour. Diagnosed with medulloblastoma, a type of malignant brain tumour and life limiting condition, we were also told that the tumour had broken up and travelled down his spine. The outlook was very bleak. The plan was to start an aggressive chemotherapeutic approach followed by radiotherapy and then more chemotherapy. He would also need to have his stem cells harvested at some point.
On the 10 December 2012 Alexander was due another operation at the JR to fit a Hickman line into his chest. But in the early hours of the morning he suddenly developed a severe debilitating headache with further symptoms of raised intracranial pressure. A CT scan revealed a rapid progression of the tumour since the 28th November. Whereas before he may only have months or weeks to live, it was now only days. To alleviate Alexander’s symptoms and save his life, his neurosurgeon would have to remove as much of the tumour as possible but due to its position could leave him with severe complications and disability. Remarkably Alexander recovered from that operation with minimum fallout. Thank you Mr Jayamohan and team.
On the 27 December 2012 Alexander began his treatment of high dose chemotherapy which was completed on the 5 March 2012. Amidst this he also successfully completed a 2 day stem cell harvest.
On the 13 March 2013 Alexander had an MRI scan to see how well the cancer had responded to the induction chemotherapy. The results of which would decide whether or not there was anything further that could be done.
The good news is Alexander has responded well to the induction chemotherapy. (A huge thankyou to family, friends, neighbours and our local community for all their positive thoughts and prayers). But he still requires radiotherapy to the brain and spine to give him the best possible chance of a cure.
Before the positive results of the MRI scan were known, Alexander’s oncologist at the John Radcliffe explored the option of proton radiotherapy abroad. Proton treatment is a much kinder and less harmful to the body especially that of a young child. It creates little to no collateral damage to other organs, good tissue and bone structure compared to traditional radiotherapy. He contacted a number of facilities, but due to the treatment time frame, and the waiting list for the machines, extensive spread of the cancer we were told that they would not accept him for treatment and we would have to undergo traditional radiotherapy here in the UK.
Not to be deterred, we contacted The Massachusetts General Hospital in Boston, USA and quickly arranged for his case history and latest scans to be reviewed, hoping that in their opinion Alexander would be a good candidate for proton and whether they could treat him in the very near future.
On Friday 29th March 2013 we got the fantastic news that The Massachusetts General Hospital in Boston would be happy to accept Alexander for proton radiotherapy treatment due to his response to the chemotherapy -with every chance of a cure. Even though time was of the essence he could undergo further chemotherapy to bridge the gap at the John Radcliffe while we organise the funding and logistics. Boston miraculously has an opening at the end of April beginning of May for Alexander.
Reply With Quote