Hi everyone!

We’re here!
We arrived in good time under the safe care of Di Gibb who relieved the pressure by driving us into the city. We find ourselves in room 3, which is very reasonably sized (will I still think that in a few weeks?) with a bathroom, window to the outside world a bed for me and a cot for William and a chair for Daddy (or Grandma in due course).
William had a Canula (a little valve that goes into a vein) fitted so that they can take some bloods and give him a platelet transfusion prior to the surgery tomorrow. So we put him down for a snooze, minutes later we spotted an alarming pool of blood on the sheet to find that his canula (having not been terribly well secured had fallen out). No damage done, just the trauma of having to find a vein again. The doctor (somewhat reluctantly, I fear) returned and was unable to find a vein despite some stabbing so Rob, William and I abandoned ship to head for Waitrose (conveniently just a 5 minute walk away, ready meals galore!) to get some lunch (btw it was about 5 by then!!) So we had a picnic lunch/tea in Brunswick Place and with dragging feet took ourselves back up to Fox Ward.
Another Doctor came, there were tears and she fled having been unsuccessful talking of the need for a special vein hunting light…3 hours (I exaggerate a little, but not a lot) later, her shift presumably over another Doctor pitches up with a small torch (?!) which he doesn’t use and successfully finds a vein!! So all fitted up the platelets are transfused some considerable time later and fortunately William manages to sleep for the most part and we finally finish around 12.30am.

Tuesday, Tubes and Lines
Awoke at 6 for Williams pre op breakfast. There was much deliberation and speculation about our position on the theatre list but nothing to eat after brekkies and then water until 10, then nothing! Aahh! However his platelet have risen spectacularly to over 250 from the 16 of yesterday due to the transfusion, which is great. The Consultant breezed through with his entourage who all thought William looked great (in so many ways!). IV fluids worked marvellously to prevent hungry and grumpy toddler and W sat contentedly watching Tractor Ted on my laptop (thanks HPPC!) which (Hoorah) I am allowed in the room but have no internet access (boo) so am just talking to myself until I venture into the world of internet cafes and the like! (No video in the room, no way of fitting our new super cheap DVD player to the TV and bad reception! Next door has a flat screen TV, no really, someone donated them to the ward but the rooms aren’t usually empty for long enough to get anyone to fit them) We do have phone, (hoorah) but have to whisper in the evening so that I don’t wake W. The number is 020 7762 6251 if anyone wants a chat! William went to Theatre at 2 and fell asleep in my arms. We went back to the room for a meeting with ward supreme Nikki, who only managed to get to us about 5 minutes before we went back to collect W, so meeting postponed. From previous experience I was expecting to be greeted by a distraught William but he was contentedly asleep and we returned to our room. He has had a Hickman/Central line fitted and a Nasal Gastric (NG) tube fitted). The line gives semi permanent access to his veins for blood tests and certain medicines. He is likely to have it for about 6 months. The NG tubs goes down his nose and into his tummy and he can have certain medicines through it and if he goes off his food can get special fortifying milk feeds through it, he may go home with it. William slept on so Nikki returned and went through the procedures and protocol with us again and I signed the consents. We were able to clarify lots of details with her and she did make BMT sound quite easy (!?!) and she should know because she has been here since the first bone marrow transplant.
W had IV fluids overnight and now they weigh and examine his nappies (nice job!) and we have to record everything that he eats and drinks. His sleep was a bit disturbed by the frequent ‘obs’ (((observations – blood pressure (the cuff always wakes him up and in the day he won’t keep still and then it doesn’t work so we are trying to bribe him with chocolate!) pulse, saturation (not sure what that is!?) and temperature))) (have I overdone the brackets?) It has been a very hard day and at times it seemed that nothing was going quite right but all’s well that ends well and I am left feeling hopeful.

Wednesday
W was sick after his rice crispies this morning when I tried to give him his (already numerous) medicines orally. One of them seems to be more than a bit yucky so we will just do one orally to keep the habit up and put the others through the tube. W had his pre Campath meds this morning, which involved paracetamol and piriton in preparation for the Campath, which he received over several hours today. The Campath will break down the T and B cells but at the moment can’t really explain why that’s a good thing. This is such a complicated procedure. We really want and need to understand it because W can’t, but there is just so much going on and it’s all so alien. The Campath isn’t chemo as I had originally thought, the chemo drugs are the Treosulfan and the Fludarabine, which start on Friday and really do the business. They were expecting a reaction from the Campath (hence the pre meds) today but W managed to sail through with only a mild temperature, well done W! There is more Campath to come but a reaction is increasingly less likely. We were able to go outside briefly between meds for the last time this morning and met Granma, Pappa and Daddy in the park, there were even some sheep, BAA! We spent a lovely hour or so with Granma and Pappa in the family room playing tractors and getting tangled up in our IV lines.
Unfortunately William managed to pull his NG tube out this evening and I only managed to get most of his now numerous medicines into him, they was much spitting and wriggling and the will put a new tube in tomorrow (no anaesthetic, but some wriggling and holding down, boo) it happens a lot with the toddlers. We saw Ivanlyo and his Mum, Danielo and his Dad, George today. He also has, or should I say had WAS! We met them in clinic here in January and Ivanlyo was very well, we met them again at the PIA Fun Day and found that he had suffered a brain haemorrhage from which fortunately there seem to be no lasting effects and he had a splenectomy in an attempt to help his platelet levels and was moved forward for transplant. He had his transplant on the 9th August and had been home over a week and looks SO well. His parents are so kind, honest and encouraging. He also had a stem cell transplant from a male unrelated donor and had the same drug conditioning as W will so that is encouraging. I really am so happy for them all that his has done so well. I was hoping to see them here or at least find out how they were and we hope to see them again when they come to clinic. I also had a chat with our next door neighbour Clare whose daughter, Lucy has relapsed Leukaemia and is having her transplant on Friday. She is a week older than William and they have moved down from the oncology ward and have been in hospital over 5 months. She is also kind and very interesting to talk to. All the children’s stories that we hear are so amazing, frightening, inspiring and humbling. Sometimes it feels hard to be brave enough but all the time we know we are lucky in so many ways.

Thursday already
It is just so busy here, there is so much going on. William had his NG tube replaced this morning and it wasn’t really too bad, the nurse was v quick and it only took a few seconds. W was up bright and early and dressed, breakfasted and was in the playroom by 7.00am! He had his second dose of Campath with a pre med today over several hours again. Grandma and Grandpa came to visit today. Mummy and Grandpa went out for lunch and had yummy pies whilst Grandma entertained William and had to settle for a sarnie. Grandma and I had our ‘Green Talk’ today. William will go into Green precautions on Sunday night and will then not be allowed to leave the room until his blood counts reach certain levels. The green precautions include aprons, lots of sterilising and mouth care and his food will come from a special kitchen and be cooked to order. His range of foods will also be slightly limited. We were given a lot of info but at least they gave us some notes to refer to and we can ask each other. We are introducing some of the measures over the next couple of days and the first thing was gloves when changing nappies which I promptly forgot! Unfortunately he had a bit of a rash and a temperature just after the Campath infusion had finished, a doctor checked him over and the piriton seems to have helped and he is much less rashy now! This also mostly happened whilst the Tracey our lovely healthcare assistant and the play assistant were looking after him and I felt bad that I wasn’t there for him but they were really good with him. Anyway, he took to his new mouthcare regime and seems to like the mouthwash, which we put on spongy swabs, he also gets a new toothbrush each day and we have to brush and swab four times a day!! He likes his (rather small) baby bath which is shaped like a boat and at least it stops him getting his Hickman line too wet, we pop the ports in a rubber glove and tape it on to keep them dry so he looks very funny, naked with a rubber glove swinging from the tubes!
I am sorry not to have been able to post this sooner, as I said there is no internet in the rooms, there are 3 computers in the canteen but the blog sites are blocked by the security software when I finally found them yesterday. My battery was flat from too much tractor ted watching when I could have popped to Starbucks down the road today. I am planning to go tomorrow so hope that you will all know a bit more of our adventures soon. I was able to pick up our e mails (we get the comments from the blog emailed to us) and we have been so touched by all your texts, comments and cards, we really appreciate all your good wishes and I had to beat a hasty retreat from the canteen before I started blubbing too much!! I think in future I am going to e mail text to my brother who will post it on the blog for me so that I don’t always have to leave the hospital and can just pop down a few floors at odd times. We are still trying to find our feet in this crazy new scary alien world of handwashing, toxic drugs and miracles.

It's friday and I have negotiated my way to Starbucks (Mum is with W and he was sleeping when I left) but is currently having even more Campath and the chemo drugs start this afternoon. At the moment William is well but he has a localised reaction to the campath in that he has one very red and swollen ear. I am quite tense sitting here with half a gallon of coffee desperate to get back to him. Every little change is so frightening but I know that certainly at this stage they are all minor oddities and that it is important to keep it in perspective. Sorry to just dump all this info, hope it makes sense. Love to you all. Catherine xxxxxxxxxxxx