Facing the Future

Back in February, we started on the next chapter of Scooby's treatment, with a drug that would subdue his immune system. There was still little evidence that it was the immune system at fault, but as Manchester and Great Ormond Street between them had ruled out so many other conditions, we were left with few options. Two treatments were suggested and so we began on the least invasive and safest option of Azathioprine (generally used for transplant patients to stop their body rejecting the new organ). If it has been white blood cells going haywire in his brain, this would stop them in their tracks with relatively few side effects. Once he had been on this treatment for a few weeks, the idea was to reduce his steroid intake and see if he still manage. He hasn't been without steroids for the last 14 months so this would be a major breakthrough if he could.

He has been on the Azathioprine for a few weeks now, and unfortunately it doesn't seem to be working so far. Even before we reduced the steroid dose, Scooby was having seizures about once a week, but when we slightly reduced the dose these became worse, as did the shakiness in his arms and hands. We have put his steroid intake back up but it doesn’t seem to have solved the problem. It’s like the muscles in his arms are not quite under his control and he is having to use his whole arm, from the top of his shoulder downwards, to do simple things (like grasping a cup or a sandwich) that he only used to use his fingers for before. His left arm is much worse than the right so he is using it very little, and we are having to help him do every day things like getting dressed and putting his seatbelt on.

We still have a couple of weeks left of the initial trial of this drug but if it hasn’t started working yet, it looks unlikely that it will, which will take us to the second suggestion of a treatment, which is a type of chemotherapy.

Obviously we have been hoping that we will not have to go down that route. We are praying fervently that something else will happen to prevent it, but we are also preparing ourselves that it may be a necessary step. We cannot let his condition carry on unrestrained, especially as the steroids only seem to be slowing it but not stopping it fully.

Psalm 33:20

Because He lives, I can face tomorrow
Because He lives, all fear is gone
Because I know He holds the future
Life is worth the living, just because He lives


  1. Sending you love and prayers my darling girl.

  2. Love you all so much....remembering Scooby and whole family in my prayers. Helen xxx

  3. Darling Esther, you all remain in our prayers. SO much love to you all xxxxxxx

  4. Esther we're thinking of you all and sending positive vibes your way. You guys are an inspiration hun. You know where I am if you need anything (Clare) x x x

  5. "I lift my eyes to the hills. From where does my help come? My help comes from the Lord who made heaven and earth" Psalm 121:1-2.....will keep praying Esther.


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