Not the news we wanted!

On Friday, Skye was once again his plucky resilient self as he received a blood infusion, followed by a platelet infusion, followed by a GCSF injection, which was not adopted so readily as the first two, but is a necessary evil. Sally and I were also called in for the results of Skye's latest MRI scan. We hoped for the best and unfortunately received the worst. Skye's disease, is at best 'Stable', but there are elements where the disease has 'Progressed', notably in the spinal cord and around the outer edge of the brain. There is also an 'area of concern' around the resection site, where there is evidence of regrowth. The surgery went better than expected and total resection was achieved (by definition, this means more than 90% of the tumour), but chemotherapy has not had the desired effect. We applaud the surgeons and all the clinicians and support staff who have been involved in Skye's treatment thus far. The implications of this are, that the Radiotherapy will be adjusted to deliver higher dose during his treatment than originally planned in the hope that this will have an impact on the rogue cells. The impact of course is that this will take a tougher toll on Skye. This will be followed by High Dose Chemotherapy, which is myeloablative and will therefore destroy his bone marrow and leave him in a very vulnerable state. This will be followed by stem cell rescue and at the end of the first 6 week cycle they will perform another MRI scan. If there is no obvious response to this first cycle, they will discontinue treatment. Skye's surgeon was in attendance at the meeting, and we discussed the potential benefits of further surgery and the risks involved. It does not appear that this is a safe or viable option at this stage. This is by no means the end of our fight. Despite the fact that statistics are against us, there is still a chance that Skye, despite his apparent lack of response to the chemotherapy, will respond to the Radiotherapy, and there are cases to prove that this is possible. He will undergo another GA on Wednesday to perform a Lumbar Puncture to assess CSF and examine exactly what response has taken place during chemotherapy. Unfortunately, the human body has clever defences in place to protect the brain and spinal cord in the form of the blood-brain barrier, and in Skye's case this appears to have been ultra efficient and prevented the chemo drugs being effective, which seems a horrible thing to have put him through. Some children respond really well, some don't. We are now hoping that Skye is a super responder to Radiotherapy starting in London on the 2nd December. I have attached a photo of him in his mask, which immobilises him to the table for his treatment and has now been adorned with Spiderman transfers.