Busy Day

Today was crazy busy trying to squeeze everything in. Sally and Jesse went up to the hospital for ultrasound of 'crooked thumbs up'. Standing joke, must have dislocated his thumb at some stage and parents have not got round to doing anything about it. Yes, we feel guilty! Should be fine. Back to Abingdon for HBOT trial at 10am - Skye a superstar and convinced them that it was really quite simple. Skye arrived back and said "Best one yet!" Nice - just need to get all the paperwork in place and a hood to fit! Lovely of the Swindon MS team to drive all the way across to assist in the trial run. Back home just before one, load Jesse into the car and off to Granny's and 'Carol Clock' for the afternoon, while Sally and Skye went to hospital for a blood re-test before starting Bevacizumab infusion. Daddy went off to say farewell to a friend and colleague who has just succumbed to Cancer. 

Sitting typing at 23.37 listening to Skye moaning on the monitor. Sally is with him but he is very uncomfortable. He awoke with headache this morning and complained of a stiff and sore neck, as well as nausea. Real concerns that he has dipped again. They won't start the Bavacizumab (Avastin) due to high BP, but no other form of treatment. So we sit and wait very anxiously to get cracking. Won't put him back on steroids! Too soon after the last high doses.