Tuesday, 28 June 2011

Going to Manchester for more chemo today. Will update later, but they better not delay or send up out of date drugs today. Am being collected by hospital transport, they said be ready from 7.30am, which means it will rpob be 9am before they turn up.

Thought we had a huge bang of thunder last night, but it was only Madeleine falling out of bed. Picked her up and poor thing was trying to cry whilst falling asleep, Couldnt see any bumps in the darkness, will soon see when she gets up..Her bed is huge compared to her, it buts up against the wall but no she has to sleep as close to the edge on the open side as she can. Its a wonder she doesnt fall out every night. We never fell out of bed when we were little. Duvets were new expensive things so we had sheets and blankets and mum made the beds so tightly you couldnt actually breathe. Those pink fleecy flanelette sheets were very snuggy.

Will update later with Harry's day.

Sunday, 26 June 2011

A glimmer of sunshine ....

Well despite Harry's through the floor blood count last week, we had it re-checked to see if he was well enough to go to Birmingham for his Gen Anaesthetic and laser treatment and unbelievably it was back up to normal levels. Back to the level where I know he will be okay to have chemo number for on Tuesday.

Anyway down to birmingham we went and I took my little starving babba into theatre and cradled him as they put him to sleep. It doesnt get any easier seeing him surrounded by tubes and machines, he looks even tiner than he is. 40mins later and the consultant came to see us. Great fantastic news, his tumours have shrunk even more and his left retina is now re-attached. They did laser therapy on each eye and were pleased how Harry is doing. He still has millions of visits to Birmingham long after chemo has stopped but hey, the tumours are not resisting the chemo and no new ones seem to have grown.

Second bit of good news. Harry had a vision test before they put the nasty stinging eye drops in and he can deffo see. Not sure to what extent but he can deffo see. I knew this, he is looking and smiling at me without me needing to make a sound to let him know I was near. He is grabbing his toys and marvelling at his little hands, but having it in black and white makes it more brilliant.

Knowing how shit Harry will feel after Tuesday, I still cannot wait for Tuesday to come, It will be one less chemo for him to have, but more importantly it will continue to zap those horrid lumps of awfulness from his eyes. AM hoping he will have gained some more weight but not expecting they will take his feeding tube out yet.

Anyway, as I've mentioned life still goes on around us, and I have to wish my older sister a very happy birthday. She has reached 40, and said if felt no different to being 39 years, 51 weeks and 6 days old. She is so gonna have to change her blog name as yes Rachel, you have finally run out of your thirties. I still have a few years to go and am still taller.

Wednesday, 15 June 2011

2 steps back down the ladder

I mentioned Harry's Haemoglobin level was 7.8, this it was is making him look paler than normal and anaemic. Well the community nurse came to do a line flush and commented that he looked pale, so she rang Manchester and they said ' bob along to Lancaster and have a blood count test done'. So along I bobbed wi William and Madeleine in tow for our usual heel prick test and dutifully reported to the desk in childrens ward. We were shown to a side room and then they proceded to go through the q&a they usually do pre-admission. A little puzzled I answered the questions and awaited the doc to do the blood test. 4 effing hours later I had had enough of waiting for the results so proceded to go home. The staff all looked horrified and no you can't go till we get results in case he needs treatment. Excuse me but I had only come for the usual heel prick test. Reluctantly they said ok, we will ring you when the results are back.

I got back and we had barbecue for tea. Yummy yum yum. Got kids ready for bed, and as I'd had no phonecall I assumed all was okay. God Lisa, you should know by now that that is never the case.

The consultant in Lancaster rang at 8pm, they had the results and had reported them back to Manchester and his Hb level had actually fallen to 7.6, and that bloody neutrophil count (the one that delayed round 3) was only 0.1, but his platelets werent too bad at 81. Something to cheer about, not. Anyway the long and short was that he needs a blood transfusion. The lovely doc (and I will give her a hug when I see her) argued wi Manchester and got them to send his blood to Lancaster as 'she has other small children and can do without trekking back to Manchester'. We have to be in for 9-10am the next day and will be done by tea time.

I look at him, and he is so tiny and little. My friends on facebook (we have a page for our babies born in Jan and have made loads of friends) keep putting pics of their babies on and tales of them rolling and sitting up and they all look deliciously chubby and cuddly, just like my 3 older ones were. Harry seems like a newborn in comparison. This awful nasty condition is robbing him of his right to be a baby, and yet he still smiles and laughs despite of what he is going through. I havent cried in a long while but I think tears are justified now.

Saturday, 11 June 2011

Well the inevitable happened and Harry is now '2 tubes Harry'. Having failed to gain weight and now a whole kilo lighter the docs decided enough is enough and of we went to Manchester for a feeding tube to be stuffed up his nose. He was soooooooooo good and only murmured a little when they put it in. I am wondering how before Harry pulls it out. He's already had a tug on it and had the end in his mouth. hmm, they did say they could train me to put it in, and I am imagining the community nurses will get narked coming every other day to replace it if he does.

They also checked his blood count, and the results came just as we were on the brink of going home. His HB levels are way too low at 7.8, it has to be a minimum 10 for chemo and 8 is the cut off where they give transfusions. The doc must have seen the look on my face (I don'tbeleiveitwearegoingtohavetostayffsffs look) and said maybe its because he's at day 10 after chemo and it may come back up of its own accord but if he gets paler (he's already an albino) and more tired and less willing to feed then ring and back in we go. Excuse me but he is deathly white very sleepy and not feeding hence the tube anyway so how could he possibly get worse.

So he officially looks like a sick child now, people will now peer in at him and know there is something wrong wheras before only those that knew about his condition knew.

I was greeted with 3 uber excited children. William had spent all day looking for me, and calling 'wheres mummy gon' in his uber cute little voice. Madeleine has been trodden on umpteen times as she trails behind me wherever I go. I think they are getting a little pissed off now. Its not their fault, bloody BRB, eff off back to where you came from and leave us alone.

Tuesday, 7 June 2011

Today was weigh-in day for Harry and Madeleine's pre-school jabs. I refrained from tellin her that until we were sitting in the waiting room at the surgery. She just looked a little wide eyed but took it in her stride. So in we walked, both health visitors armed with needles and 1-2-3 in they went, no warning or nothing. Madeleine cried a little but soon stopped as she emptied the sheet of bravery stickers onto her teeshirt. I then asked her to put her cardi on when she stopped, looked alarmed and said ' no, I don't want to move my arms' and so for the next hour or so she walked round like a robot with her elbows seemingly stapled to her ribcage. It was so funny, I am still chuckling at it now, and its 9pm. She then declared she couldnt possibly go to school with hurty arms.

Well, I then had Harry weighed. Praying he was still above 6kg as he had just scraped through in Manchester 7 days ago, I popped him on the scales. And no, I was to be disappointed. He was back to 5.8kg again under 13lb in old money. They dutifully rang the weight through to Manchester, so I now await their thoughts. The dreaded tube looking a little more likely. I desperately tried pouring that goo down him, only to be rewarded with a t-shirt covered back with it. As they say you can lead a horse to water but you can't make it drink. Grr come on Harry, havent I got enough to deal with.

Dan back on his first night shift since Harry's diagnosis. He wasnt looking forward to it, I must admit the thought of having the bed to myself fills me with absolute delight har har. Poor Dan. We had a laugh at William, Singing the theme music to Star Wars note perfect. He is deliciously funny.

Monday, 6 June 2011

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.

Thursday, 2 June 2011

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.

Wednesday, 1 June 2011

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