Been a pretty non-eventful couple of days really. Harry of course had pulled his tube out so a quick visit to hospital today to have it put back in was made. He doesnt like having it put back in, you think he would have learnt to STOP PULLING IT OUT THEN. He's going to be weighed again tomorrow, hopefully he hould have gained a little.

My niece and nephews girlfriend are organising a sponsered triathlon to raise money for Macmillan Nurses mainly for Harry. What a lovely thoughtful thing to do. I set up a 'just giving' page for them so they can collect on-line donations, and we have had £160 donated already. The triathlon isn't til October. The lovely messages that have been left by complete strangers is touching, it brings tears to my eyes xx

On a down note, despite having a op to put a stent in to start draining the shit out of her blood, Rachel remains as yellow and as itchy as ever. A few days she was told then she should see some effect. She is going to ring them tomorrow for advice. Its getting her down.

Well after a very long day, we were collected at 7am and home at 9pm, Harry now has his platelets. They did a fresh blood count in case his body and made so many in the 2 days he didnt need his transfusion, alas no. His count had actually dropped to 2. Scarily low. Lets hope in the 10day life span of these transfused ones his little body starts to make their own. Of course he had the nurses falling at his feet too.

My niece and nephew's girlfriend are organising a sponsered triathlon to raise money for Macmillan, mainly because of Harry. What a lovely thing to do and I hope they get loads of backing.

Harry had his bloods done, and as I thought his platelets are low, but lower than I thought. They should be 150, and his are 13 so he needs a transfusion. His Hb level is also low which explains why he's so pale.
So yes, we're off to Manchester in the morning. Hopefully they'll be prepared so we won't have too much waiting to do, but not holding my breath.

I managed to steal away the kiddies comforters to wash, they were extremely yukky and stank. Probably the source of Harry's infection lol. Out they came lovely and clean and fresh smelling. Madeleine looked most unimpressed and didnt really look at hers for the rest of the day. She did ask 'when is all the clean going to come off'

Rachel still feeling crap despite her op, but they told her it could be a few days for the jaundice and itchin to start subsiding. Matthew was dead impressed with her colour especially her teeth which she'd painted white. She found it funny thank god. He was also disappointed that he'd missed seeing Madeleine tumble down some of the stairs at my mums, knocking william over as she fell. He asked if anyone had video'ed it on their phone so he could watch it. I chastised him, everyone else thought he was funny.

I took him to get some new trainers from Clarks shoe shop. I knew he needed some new ones as he'd just been fitted for new boots, the shop assistant (also a childhood friend) asked casually if Madeleine and william wanted a shoe check, imagine my shock when they had both grown a full shoe size, never mind just a half. So £100 quid later they were all kitted out in new footwear, all with flashing lights in. I am still recovering from the the fastest goodbye to £100 in history, and from the fact I'd been jamming my kids feet into shoes that were a size too small. Just cause clarks say feet grow every 12mths kids doesnt mean you have to oblige. God help me when Harry needs them aaargggh.

Harry has stopped being sick hooray, but he was weighed yesterday and has lost roughly half a pound boo.
Hopefully we can start building him back up. Going to get a blood count check today, have a funny feeling his platelet count will be very low (despite him being at day 12) as he has a few bruises. They may want to give him a transfusion, maybe check again next week and see if his little body can do its magic by itself I don't know.

He must be feeling a bit better as he kept rolling off his changing mat last night, and yes it was on the floor lol.

Still being sick.

We want our happy Harry back x

William is 2 today x

wow, where did those 2 years go. It doesnt seem 2 minutes since he was born, well actually thats a lie cause of everything thats happened since it also seems like a lifetime.

2 years ago today my darling William made his appearance. Rachel was my birthing partner, and after several false alarms (even more than with Harry) she became anxious as she was going on holiday at 6am on the 6th August. So 10pm on the 5th I rang her and said 'its the real thing this time' so off we went to hospital. Despite the midwife saying he would be here by midnight, naughty William decided to hang on a couple more hours and arrived at 2am. It was to make sure I went through the motions of 'I can't do it and 'I want an epidural' but Rachel was a fantastic partner and was the first person to see William and hold him. I am sure the black top was prop not the best colour to be wearing and she jolly well made sure she was wearing an apron with Harry! and at 3am she rang Darren to bepicked up. She must have been knackered as they dutifully went on holiday at 6am.

I wish I could wave a wand and keep William as he is. He is the most loving cute cheeky cuddly little boy ever. Hope you have a lovely Birthday xxx

Harry is at day 10 and is looking pale, I am a little concerned as he is being sick quite a lot and not really wanting to feed. I have started him back on his anti sick meds to see if it helps, really don't want to ring the hosp as I can imagine they may want to see him if it doesnt improve. Come on Harry, all that extra weight you put on will be falling off, I know I can give him his top up Milk down his tube, but thats only ok if it stays down. Am sick of washing sicky sheets and babygros, makes a change from pooey ones I suppose.

Where has my Harry gone??

This latest round of chemo really has disagreed with Harry. Probably a combination of being ill, then chemo then laser all together but my happy gurgly baby has been replaced by with a sad crying hurty baby.

Its as if he is in pain, especially when you pick him up, maybe he is achy and his skin hurting, the nurse said this could be his chemo and maybe give him calpol to see if it helps. His temp is okay thank god.

I am also FED UP of washing pooey clothes so I am thanking god he has stopped his anti biotics and maybe this will stop his poo being uber runny and coming out constantly.

That aside, he seems to be seeing more, I dangled a toy over his head and he moved his head and eyes following it. Something taken for granted by most people, but to me it was a wonderful thing. They have been able to start lasering the larger tumors in his eyes along with all the smaller ones. We have pictures of the before and after to date and the difference is amazing although the blackened calcified deposits look horrendous  but who cares as long as the tumors are dead. I have a feeling his chemo will be extended, as they still hve a long way to go and he only has one dose left and they did say it would be increased if need be.

I must say good luck to my sis who has an op today to remove the offending gall stone which is causing her anguish and yellowness. I know she is scared and who wouldnt be, but I hope the relief will be instant and she can get back to her normal self. Good luck Rachel xxx