We have had a very difficult week. A routine visit to the hospital on Monday resulted in a flurry of activity brought on by Sally pushing for answers due to an increased weakness in Skye's lower and upper limbs, increased inability to control his bodily functions, tingling in his hands and feet, and increasingly slurred speech.
He was booked in for an emergency MRI scan on Tuesday, and that night we were called to get Skye back in as soon as we could. They started him on high dose steroids to deal with swelling of the spinal cord. The MRI scans were likened to someone who had suffered a stroke, with fuzzy areas around the spinal cord and brain.
Yesterday we were at the hospital all day, and have been allowed home, with a set course of drugs to administer over the next 48 hours. A reassessment of Skye's condition will take place on Friday and again on Monday. Skye has deteriorated rapidly, and despite eating better than he has done for months, his body is failing him.
If they are unable to halt the progression of what is being called chemotherapy/radiotherapy induced necrosis we are looking at a very bleak picture in the coming weeks. It is highly unlikely that this process of necrosis is reversible, so at best, Skye will continue in his current state of total dependency. Together with our Consultant who is seeking information from colleagues worldwide, we are doing our own research into what is being sold to us a very rare complication of treatment. We have been in contact with many specialists. Ironically, it is the disease which is stable, but the side effects of the treatment which are now the demon. His previous scan just 6 weeks ago, showed absolutely no sign of this and he has been doing so well. ADDITION 20th January 2015: There are other children who were treated using the Milan Protocol who have developed severe neurological side effects.
Definition of bleak: If things are not halted, we are facing a deterioration which will ultimately lead to complete failure of his vital functioning, ie Skye will lose his fight to survive this horrible episode. Considering how quickly he has deteriorated, this may be a rapid process. We have had a very brief conversation with our Consultant about making his final phase more comfortable/bearable.
To put it in perspective, Skye is currently sitting with his Nanna making a birthday card for Jesse, because he may not get an opportunity to do so in the coming weeks or months. Skye is of course oblivious of any fuss at this stage, and whilst we are still hoping and praying for a positive outcome, we have to steel ourselves against what may be a very difficult period of our lives. We are trying to remain positive for both Skye and Jesse.