It's been a very tough 24 hours, our PANDA is in a bad flare. Aw man this illness is so intense and exhausting! - the tears, the sobs, the pain and confusion in his eyes at trying to deal with everyday life sometimes......he spent hours distressed & crying last night and is no better this morning.
Even nearly 2 years into it that's something that still gets me, because I can't take that pain away....
I've found it hard to keep my head above water lately. When he's in a flare like this EVERYTHING is so hard for him. His surgery date is confirmed and it's very imminent, however we haven't been able to tell him yet so we are keeping it off the blog in case he finds out as that would be disastrous, he's very very anxious & frightened about it all. Stay tuned for a full blog update next week.
My boys heading out to support 'Our Wee Country' at the match tonight. This time last year a trip out like this was completely impossible for Cameron. I have a smile on my face waving them off tonight. We have a long way to go, and he will need a couple of days to recover from his trip out tonight, but he's going, that's the thing! Small steps, but in the right direction. 💙 #myboys
Many Happy returns to the driving force behind the blog my darling wife Natasha who hits the big 4-0 today! As well as being an amazing wife and Mum to Cameron and Annie, Natasha has devoted her life to tirelessly seeking the answers to get our beloved son back to full health while doing her best to support other families on the same horrendous journey we are on to get their PANDAS children well again. I am sure you will join me in wishing her a wonderful day xoxo
You know what PANDAS, you can just go and FECK right off tonight. I'm so fecking fed up with you. I'm fed up with you crippling my son and making me feel so helpless. He has completely fallen apart in the last hour, to the point where he just lay on the ground curled up in a ball sobbing how much he hates his life and that he just wants to die........
I'm so angry I just want to scream & scream
It has been a long but positive day in Dublin. This was the beautiful view at the pier in Dun Laoghaire where we stopped to get a breath of air after being in the hospital all day. We are continuing to progress, we have from now to Christmas planned out. The main event will be his throat surgery and further testing immediately after to see if it's made any difference to the levels of antibodies in his brain. We are out in a restaurant at the minute getting a bite to eat before the drive home, but it's not going well! Eating out can be an ordeal for Cameron, it presents challenges that get him quite distressed and a lot of the time now as I'm sitting trying to talk him off the ledge, I think to myself "is it worth it!" I know it's been a long day and the journey down in the car is tough for him, he gets very sore sitting and his stress levels increase 10 fold. I know important to try and do normal family things but you do ask yourself is it right to do them when he has difficulty coping.......
Sadly some friends have terribly disappointed me over the last 2 years, others have supported us so well I will never be able to thank them enough or repay them.
My sanity! Ha, well, what can I say! Do I still have it? Who knows!!! Some days I think it's still there and other days I feel like I'm going completely mad!!! Money, well I've had to take a career break to look after Cameron, it's a big decision to go without a salary for a year. But it's thanks to all of you, our community both here & abroad that we have been provided with the means to get Cameron better.
My family, couldn't do it without them, they are there at every turn to support me. Thank you from the bottom of my heart Raymond Lemon & Grace McParland & Kerrie Lemon & Campbell Lemon.
My darlin, Jonny Lindsay, I thought losing a baby would be one of the biggest tests our marriage would ever undergo, I was wrong ........we have been tested to the EXTREME these last 2 years, but do you know what, we are stronger than ever and I love him with all my heart.
I do think that I have lost myself slightly, I'm so swept up in this crusade, sometimes I'm not sure who I am any more. I'm certainly not the person I was before PANDAS . Maybe someday, when things calm down, and we are out the other end of this journey I'll get a chance to get to know myself again.....
However, when all is said & done, I'm still taken aback by the fierce determination that comes from within me, that drives me forward to keep fighting for my boy. 💙
Back for another raft of tests!
We've had a full day of doctor consultations and now getting more blood taken. He was very good during it, and we're now waiting on the lab spinning it.
Because he's in a flare at the minute it's crucial to get his brain serum couriered to Copenhagen for an up to date picture. Throat surgery is scheduled for pre-Christmas :-)
Treatment plan progressing
Cameron has had a good morning :-) he went into school for 1 hour today with his helper (aka his home tutor). He just sat in class and observed for this morning but we're taking it in baby steps :-)) this is a huge achievement for him! Very proud, very emotional mummy today.