Here is a quick update just now on how Rebekah got on at Sick Kids, Edinburgh at her recent consultation:

Jonathan & I met with our Neurologist Consultant, Dr Ailsa Mclelland and one of the Rheumatology Consultants. Rebekah had all her blood tests repeated. We were then informed that they were wanting to take her off the steroids completely by the end of this year. This would involve us reducing her steroids by 1mg every month. She is currently now on 5mg, which is 1 tablet dissolved in some juice. She remains on the other drugs. However in a couple of weeks time she will need to start taking 4 x 1mg tablets of steroids on top of her other medication.

Effectively the Dr's said to us both that they want to "peel back the sticky plaster and see what is lying underneath..." They are unsure if Rebekah's condition will remain stable as it has been for a wee while now or whether her condition will deteriorate. As many of you will know steroids mask a lot and so we are quite wary/scared as we enter this period of uncertainty. We have been here at this point before and so are looking for guidance, strength and courage as we face these next few months. The last time Rebekah came off steroids her condition deteriorated rapidly.

On the one hand we feel "happy" that the Dr's feel they can reduce the medication but equally they don;t know how she will react.

So far we are now about 3 weeks down the line of this reduction and just this am, Saturday 11th June, 2011, Rebekah came through to my bedroom with a very high temp, sore head and legs. These symptoms haven't been around for some time now and so Jonathan & I have been quite concerned about her today. She has been out of sorts today so we will continue to monitor this.

We thank you all once again for your continued interest, prayers and support. Jonathan has now completed 1 week in Afghanistan and returns home next Saturday. I have also been at work this past week and will be back in at the Edinburgh Cancer Centre this coming week. Every year I have to complete a 4 week block to keep up my registration. It has been a great support for me to have our friend Fiona Culley staying with me and helping get the children out to school etc in the am's. Also our friend, Jane has been helping to watch the kids after school and pick David up from nursery as I don;t get home till 6pm.

We will keep you posted on Rebekah's progress as we start this next phase of her treatment. All being well we are due back at Sick Kids in Nov time for more test, brain scans etc and then we will see the Cons's again in Dec to discuss things further. However should things change then will see them sooner.

Thanks again.

Jonathan, Jillian, Abigail, Rebekah and David

xxxxx