I need to buy shares in Sudocrem. Those evil nasty chemo drugs have taken the skin off my poor wee man's bottom, no wonder he cries when he poos. I am going to ask if i can get it on prescription. Still not having that gunky milk either. MA and Pa in-law came yesterday and to Madeleine's relief they left Rhea the doggy at home. Was nice to see them and the kids had a whale of a time,

Back to school today for Matthew. I hve just realised he left is wtaerproof jacket at his friends house. grr I hope they realise and return it as Matthew will get wet. Madeleine back tomorrow, except she has her booster jabs at 9.30 so don't know if she will want to go afterwards. She has no idea yet, I will tell her once we're in the room and will be prepared with her favourite sweeties for the immediate aftermath. When Matthew had his, they did 1-2-3 into both arms and he didnt even murmur. No doubt Madeleine the drama queen will yell non-stop probably for the best part of the week lol.

Day 2 after round 3 and Harry has already puked up almost a full dose of his anti sickness drugs. Obviously not doing what it says on the tin there then. He is so completely unimpressed by the supplement feed we have to try and get into him. He hasnt really had a bottle before, and is probably unlikely to after this. I resorted to squeezing it into his mouth and all he did was choke and scream some more and spat up all I'd got into him. The dietician rang to ask how were getting on, and wasnt surprised really. She is going to get the Health Visitor to come and weigh him early next week and see what he is and then decide what to do. Feeding tube is sounding more likely so we can just pour the stuff in, that way I can still feed him and he hasnt the trauma of being forced to drink something he doesnt want to. I had to laugh at him though as he clamped his mouth shut so tight it looked like he was doing a squeezy lemon.

I went to the hairdressers yesterday to get my hair tidied up, and one radical cut later, my long lanky curls have been replaced by a collar brushing thick looking bob. Fantastic. Well until I try to dry it like she did lol. Got Madeleine's cut into a bob too. She looks uber cute and mischeivous now. Can't bear to cut Williams so I left him with Rachel. She made him walk 20miles to feed the ducks, and he had a 2 hour nap and still went to bed on time. He is still chattering about the duck ducks. Think she was a little disappointed when I went to collect him as he'd just settled down to have a snuggy with her. Aw next time.

Have just eaten a tube of the new Dairy Milk Chocos. Heaven, They are like Rolos but without the caramel. Now wish I'd bought 2 as I am wanting more. Wisely, I waited till the angels were in bed and Dan at work till I opened them. Yummy yum yum. They are definitely grown up chocolates.. I must mail a tube to Eryn in America as it will blow their weird chocolate out of the water. Thats if I don't eat them first lol.

Ding Ding round 3

Well we got to Manchester without getting lost and went straight in at 9am to get some bloods done to check his blood count. 20mins of horrid waiting to see if those pesky white blood cells had finally grown. He was weighed and (due to the fact that weighing scales are probably different) looked a little heavier than when he was in Birmingham last week but was still lighter than last time he was weighed in Manchester 4 weeks ago.
We went in to see the consultant and yippee yay his count was up and chemo could go ahead. It was ordered from pharmacy there and then. Looked like we would be done and dusted by tea time and be home to see the other littlies before bed time as it takes 6 hours to transfuse in.
Doc requested a dietician look at Harry as he didnt want him losing any more weight.

Well an hour later Harry was hooked up and on his way, brilliant, fantastic. He was so good, just lay there nd chuckled and gurgled and chewed his hands. 1pm, when the 3rd and final drug was getting ready to be put up the nurse noticed it had gone out of date the day before. WHATTTTTT. How had this happened. Are the pharmacists not supposed to double check before dispensing. So it had to be reordered and out of the window went my early finish. A critical incident report had to be filled in. And yonks later at 3pm he was finally hooked up for his last transfusion, and this one takes 4 hours to drip in. GRRRR.

ANyway, the dietician came to see us. She gave us some high calorie feed supplement to try and get into him via a bottle whislt not disrupting the breastfeeding. She will speak on Thurs to see how its going, if he is okay with it, she will arrange with my GP to give it on prescription. If he won't drink it then it looks like we will have to get it in via a nasal gastric tube. Oh Harry, there's always a downside to everything. Get slurping that gooey stuff.

At 7'20pm we were finally on our way home, 70mph (not) on the motorway and 9pm I finally rolled up home. Looked at the lounge window, expecting to see Dan when up popped 3 little extra faces from the settee all going mad with mega smiles. They all legged it to the door as I walked in, what a super welcome home. Made up for the crap day

Well quelle surprise its bank holiday, half term and yes its raining. Matthew is climbing the walls as he's dying to try his new chalk darts but they are for outside use only. Am watching Tikabilla with William. He's so clever at reading numbers, he knows them all up to ten, so when the tikabilla clock comes on he gets really excited as he points at random and gets them all right. Who's a clever boy then. Just like his mummy. Tikabilla is a modern day version of Playschool, gosh that brings back memories of Floella Benjamin and those rastaplaits. Although my fave kiddy program (we only had a handful to choose from) was Chorlton and the Wheelies.

I am laughing that Utd Lost last night. Barcelona!!!! as Freddy Mercury used to sing. It puzzles me though, listening to the after match talks etc, why people say 'we were out played, we could have played better, we lost to a better team...'  whats with the 'we' its not as if they were on the pitch playing along. Get a life, its only a game. Its the taking part that counts not the winning. har har har  Its so annoying that a bunch of neanderthals who need no education get paid so much for playing games. Take Beckham for instance, as soon as he opens his mouth it shows straightaway what a thicko he is, still i suppose if it hadn't have been for football he would have been on benefits!!

2 days to round 3. Lets hope those bug fighting white blood cells have called in the troops and have amassed into a massive army, just waiting for those nasty chemo drugs to obliterate them all again.You can just imagine Harry's bone marrow saying wtf!! lets hope it doesnt go on strike and say what's the point. This has been known to happen, its got a scientific name .. neutropenic' and can last for weeks. Its as if the bone marrow needs a rest and also means chemo is put on a hold till its starts up again. I do not want any delay now whatsoever seeing as he is responding so well. I hope he hasnt lost anymore weight, just feels about the same to me. C'mon Harry you tough little cookie x

I did mean to post yesterday, but anyway Happy Birthday to my first baby. Matthew is now 7. He got up and remarked how much bigger he was this morning now that he is 7. He called me mum as 7 year olds don't say mummy anymore as they are too old for that now. LOL. He got all sorts of cool presents, star wars lego bed, clothes toys and games and a cool chalk dart set off Hanty Raychel. He was most disappointed that it was raining as I absolutely forbade him to chuck it in the house. He had a star wars cake, and Madeleine ran away when we lit it as she is scared of candles. Funny girl. She soon came back when a slice was offered. She was a little upset yesterday, no not because she had no presents to open, but she couldnt go to school. I opted for 4 mornings (and then one full day from sept) as I thought it may be a bit too much. But no, she wants to go. You watch, come the time she has to go to school for real she will cling and cry and not want to go.
On a down side Dan has to return to work, his doc said he could go back as long as they didnt put him on shifts when Harry's doc appts were. Grr, the kids will miss him, I will miss him and we will just wait and see if they keep their promises and you can bet your bottom dollar they will again say one thing to your face then do another thing. Its bad enough dealing with his own shit at home and now going and dealing with other peoples, only dial 999 for real emergencies cos you time wasting scroats and tossers who abuse the ambulance service will be given short change now.

WOOOOOOOHOOOOOO

Super, smashing, great, unbelievable, fantastic, brilliant, omg omg omg the good news just keeps pouring in.
We went down to Birmingham on Sunday, kissed my 3 older angels goodbye and left them with their granparents and into the taxi we went. 2 boring hours later and many head nodding moments we arrived in Birmingham. Harry slept all the way. He must have then had some foreboding as he grizzled all night. We snuck a KFC into the hotel room as a Fish Finger sandwich was £13, yes £13 and it was very yummy indeed. The pearly white towels had a greasy finger wiped look.
We went over to the hospital for 8am and Harry was in theatre by 8:45. I am used to the goings on, but danny was a nervous wreck cos despite being a paramedic cannot bear to be in a hospital when his loved ones are involved, and usually backs out, and then in steps my sister to take his place. But all the way down in Birmingham, and without the sanctity of the hotel he could either stand outside for the whole day or bite the bullet and come in. So the bullet was bitten and to be honest he was very good. Didnt come into the anaesthetic room but was there waiting outside to give me a hug.
45mins later we were met by the consultant on the ward. Harry was in recovery and ok. Cue held breath. I was dreading what he was going to say, I had cemented a thought in my mind that the chemo hadn't worked and the tumors were the same if not worse. But NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO. The tumors had responded unbelievably well. He had 3 on his right eye. 2 had been almost obliterated and he managed to do laser therapy to these. The larger one had gone down to a third of its size, but as it was over the macula area (this part gives you your sharp frontal vision) he wanted the chemo to shrink it more before he did some laser treatment. The left eye had a total retiunal detachment and one large tumour right in the middle of the eye. The tumour was drastically reduced, but even better was that his retina was almost back in place. It showed up some seedlings which could become active tumors but once the retina is completely back in place these will be lasered off to stop them ever growing.
What we didnt realise was that the tumors would leave behind a scar in the form of calcified bony deposits which will never go away. Some are little dots and some are bunched together, so Harry will never have brilliant vision, but they don't know what level he will have, I suppose that will come to light further down the treatment path. I know he can see more as he looks at his hands. We have to try and stimulate his eyes as much as possible now and will be contcted by a therapist to help.
I don't care, my precious baby boy is responding to his treatment and that is good news. I never thought I would want to put him through it, but can't wait for his next chemno session as I know its working.
Now a small downside, his white blood count still hasnt recovered, gone up a smidge to 0.4 so he can't have chemo today, we have to wait til next week. They expected this and are not concerned so a week of keeping bugs at bay and his temperature down. He has lost a little weight, he was 6.2kg 3 weeks ago in Manchester but now down to 5.8kg. He has slipped down to the second centile in his red book, hope it gets back up a little by next week as I don't want a feeding tube putting in. He should be like the others were at this age, chubbly and cuddly not skinny and bony (i'm just jealous as I'm still a little too chubby ha ha)

Hallelujah, some good news at last. Yes the eye drops were of the stinging kind, and they did grumble when they were put in, but they all sat as still and quiet as a rabbit in headlights (their eyes were as wide too lol) whilst every millimetre of their eyes were checked. I must have held my breath for about 10mins in total but was finally told that my 3 older sweethearts show no signs of BRB. Whoopeedoo.
BUT, due to protocol and as it can strike up to the age of 5 or 6, they have to be re-checked. Okay, not so bad, he wants to see Matthew in 12m then he will be discharged. Madeleine in 3m time (she is going to be so impressed) and William in 2m so I still have the awful task of forcing them nasty eye drops on them.
Matthew had a sight test too, he got all the way to the bottom line with each eye, I must admit I had a smug little smile. William has long jumped over a mega long waiting list to get his slightly lazy eye looked at and treatment as appropriate. This means it should be sorted before he goes to school. So I suppose I have to thank BRB for something.
So we needed just one more result from Friday's epic trip to the hospital. Harry's blood count results. Despite looking the picture of health, his haemoglobin levels had just scraped through although his platelet count was good. This means we can go to Birmingham on Monday. However, his neutrophil level was 0.3, and the ideal lowest value should be 1, so he is at an increased risk of getting an infection, as this is the infection fighting white blood cell. We have to keep a close eye on his temp, and we have been given direct access onto Birmingham oncology ward on Sunday whilst we are in the hotel in case it goes up, then he will need antibiotics. Lets hope it recovers enough for Tuesday, whilst i hate pumping his little body full of those nasty toxic drugs, I want it over and done with so any delays are not acceptable. Come on Harry you tough little cookie, get them blood cells made quickety quick.
The children easily chose their reward, lunch at McDonalds. Cue some nutritionally deficient junk which must be full of kiddy nicotine as they are addicted (although I only let mine go as a treat very occasionally) and the nasty eye drops were immediately forgiven and forgotton. Matthew complained that his eyes were blurry until the minute we walked through the door, then they were miraculously better as he asked to play his Little Big Planet game.
Little Big Planet, a kiddy game which has me boggled. I do not understand it and I cannot follow it but Matthew (and now Madeleine) whizz though with their Sackboys making up and playing other kids made up planets. One level is like the Total Wipeout game. Some kid genius made that one up. Whilst I do not condone gaming, it has completely stopped his love of shooting games and is slowly turning our little big boy into a graphic designer.