When we arrived in hospital on Thursday 20/3/15 we were told that treatment had been cancelled, there had been a change of plan, they were waiting to hear back rom Oxford regarding if IVIG would actually be the best plan. Devastated was an understatement! After being promised the sun the moon and the stars last Friday now they'd pulled the rug out from underneath is again and renaged on everything.......After the EEG they asked us to stay in overnight anyhow, so we were hopeful that maybe there was a chance for treatment on Friday. However it was not to be, this is my blog activity from that Thursday & Friday 19th & 20th March........ Best laid plans........... Received a phone call an hour ago to say our consultant had changed the plan now & was not going to go ahead with treatment today now, it's unclear if this is a funding refusal/red tape issue or not............ Yet again the NHS has built us up to knock us down again. I'm so relieved we went ahead with our fundraising because now more than ever I know that our path to getting Cameron fully well again lies in private care sourced outside of the NHS and this country. It simply cannot deliver, I'm sad to say, red tape & money/resources are stopping us at every port of call. We are going on in this afternoon for his EEG & we'll get to speak to the consultant in the morning. I'll keep you posted. Natasha xx Friday night 20th March We are home from hospital, without treatment and with a complete reversal on all promises to help that were made last week. Feel like I've been kicked in the ribs, feel like we've been marched right back to the start line...... Before we even got home from hospital he had gone into a full blown crisis, one of the worst ones we've had from last year. It took Mum, Dad & I to protect him from hurting himself, I had to sedate him in the end. His symptoms are continuing to return. Too full of emotion at the minute to process everything. So angry, so sad, so dismayed ....... But each time we are knocked back my fierce determination is fuelled, this disease picked the mum when it picked me - IT WILL NOT WIN. I will continue to fight for you Cameron, my beauty boy. 💙 xx
1 Comment
Lynn Smith
3/26/2015 02:46:13 pm
Just noticed this website today.. glad you got it up and running.. Please keep in touch and give all our love to Cameron.. my favourite saying 'one day at a time..' xx
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