The Worst News Possible

After a couple of shaky weeks with Scooby's seizure activity, and then some new and unsettling symptoms this week, such as struggling to speak and being unable to keep his eyes open for more than a few seconds, we decided to give him an EEG and an MRI. We've had so many of these before, often with inconclusive results, that we didn't really think about the outcome. We hoped all his symptoms could be explained as side-effects from the many medicines he was on.

But an hour later we were in the office with several consultants being told news that turned our world upside down. Scooby's brain is riddled with disease. Where in January's scans there had been a few white lines and grey patches, now they dominated the picture. The doctors were as shocked as we were.

Although his original brain disease had never been identified, it had been narrowed down to an immune system dysfunction because every other avenue had been explored and it was the only possibility left. Immuno-suppressants had been used to try and keep it under control, but then he developed the blood disease HLH, which meant we immediately had to go to chemo and bone marrow transplant because there was no choice - HLH is a terminal disease and that is the treatment for it. And we all presumed that destroying his immune system altogether and replacing it with a new one would solve the problem of the mysterious brain disease too.

Nobody expected that it would continue on its path of destruction, untouched by the biggest possible medical intervention we could have thrown at it.

The last physical hope we have is that some virus has entered his brain which looks like the original disease but is actually something else. If that were found and identified, it could be treated and hopefully leave little damage. But the chance of this is practically nil. We know this is a formality rather than a probability and will get those test results on Monday.

There are no other options. In the second meeting, after the news had sunk in and we'd asked about every possible medical option we could think of, the only thing left to talk about was palliative care. That at some point we will have to make a decision about whether to continue treating infections that arise and giving transfusions when he needs them, or whether we choose to let him be and shorten the process of what could be a long degenerative decline.

When I was in labour with my babies, I had to keep my mouth closed all the time because once I opened it I couldn't stop the noise that came out. That is what has happened today, back in the four walls of our hospital room. I have had to cry silently and with discipline because the feral groans that try and escape from deep within my gut would have shaken the whole hospital.

God, I want to keep him. Please. We need a miracle.