Here are my most recent ramblings...

Monday
William has been rather sick to start and finish the day poor little man but has been remarkably cheerful. I escaped for a very enjoyable lunch with Jo and Lisa, thanks SO much girls! Unfortunately when he was sick this evening (on Grandma) he brought up the end of his NG tube so they had to pull it out. He has had another one put in already for his overnight milk so at least he will get all the nutrients that he needs. He has only eaten yoghurt, 1 ½ cream crackers and 6 mini jaffa cakes all day. He was asleep before he was sick and all the excitement of the NG tube, the cleaning up and clothes changing meant that he was then wide awake and a rather overtired and hyperactive William has finally gone to sleep at 10.45. He also had his dressing on his Hickman line changed earlier which was rather a sticky, wriggly experience but the should last a week, phew. He had his penultimate dose of the Fludarabine without event and that was the only thing on the list for today apart from the numerous usual oral (well NG) meds.

Tuesday
William woke in the night with a very sore bottom but they gave him some pain relief and otherwise he slept through until 8 (not altogether surprising considering the antics of last night). He woke bright and breezy and even had a quarter of a piece of toast and some milk for breakfast. Unfortunately he was sick after his lunch nutritionally balanced lunch of jelly and peeled grapes (yes even the grapes need their skins off) will be having more anti sickness meds from now on. His NG tube came out again AAGGH! His platelets are back down to 10 so they won’t put another one in until he has had a transfusion (due an hour ago!) in case it scratches as it goes in and he bleeds. So we have a fun and late evening ahead of us. He is asleep now after being disturbed by a nurse at the crucial moment who woke him up entirely and it took us another hour to convince him to sleep. Fortunately Mum was here so we took turns so that at least I have eaten. He will have his platelets whilst he sleeps (fingers crossed). Apparently the affects of the chemo really kick in after about 10 days from the end (today!!) so that’s something we are really looking forward to. The consultants and entourage breezed in today but we are not particularly interesting on the BMT scale of things so they left quickly and to be honest lets hope we remain pretty uninteresting!! Had a lovely chat to Hannah (almost 6) and Ella (2 and a bit) and Nicky (even older than me!), Ella refuses to call me Auntie Cath preferring the more informal Cath which is really cute and makes me smile. Hannah is so curious and always full of imaginative questions. She was most impressed today that William has a new toothbrush EVERY day ((sore mouths are common and we use mouthwash on sponges and brush four times a day) fortunately W loves this bit at the moment). That’s all for the moment I shall go and get my pyjamas on and then you can be sure that the nurses will turn up!

Wednesday –1
And sure enough they did, can’t remember why but it was all a bit stressful and I started panicking that he was getting the wrong medicines or something. It is so hard to trust the nursing staff with William but I have to because that’s the way it is and even when they tell me what they are giving him I’m sometimes none the wiser. It was an awful nights sleep for me, the machines kept beeping one after the other and at midnight his platelets finished so I had to wake him up for the torture of having another NG tube put in. Fortunately it was over very quickly and he was so tired he settled almost straight back down. Today I was exhausted first thing but had a late morning sleep when William did and Mum did the provisions run! I thought today would be quieter medicine wise but as well as the usual suspects there are 2 new ones, one is a two hour infusion twice a day and the other a one hour infusion twice a day so that is 6 hours with tubing plus extra for the flushes! We have watched a significant amount of Tractor Ted and spent a happy 10 minutes teaching Grandma and 2 of the nurses the names of Williams cuddly collection (in no particular order, so as not to cause offence they are Lamby, Hamish, Cuddly Gillie, Jess, Tex, Woolly, Rosie, Minty, Smudge and Smoky for those of you who are interested). More meds due later so I’m doubtful how restful this night will be too. There has been ‘discussions’ about starting W on TPN, which is a way of feeding him IV, apparently the doctor thinks that we should but not the dietician or the nursing staff. I had provisionally agreed although when I asked the doctor is there were any negatives he omitted to tell me that it would mean that W is hooked up 24/7! There is probably a better way at this stage introducing daytime milk feeds through his NG tube as well as the night ones because this will keep his gut working. His weight is not really dropping and although he is not really eating he has been drinking and they poured a bit extra in today as well so we shall see what actually happens when the dietician has her say in the morning.
It’s easy to lose sight of the bigger picture and get caught up in the details of the treatment but I just want to take a moment to say that I have been thinking about and praying for the donor today as he plays his pivotal role in this whole business. He is giving William a chance that I cannot and from tomorrow, whatever happens in Williams’s life he will always be a part of it. Without him, none of this would be possible and to not be able to give William this chance would break my heart.

Thursday Day 0
Go stem cells GO GO GOOOOOO!
It’s done. All 318ml of stem cells are in his system, he got a bit of a temperature and a bit breathless pale and chilly too towards the end of the 3 hours so they gave him some paracetamol and the doctor came and said ‘I think he is probably going to be alright’ which we found very reassuring. The donor was very generous with his stem cells and they have frozen a similar quantity just in case?! We had a nurse with us for the whole infusion just in case the bag springs a leak and we sit there and watch them spill all over the floor so that she could do a little Dutch boy impression or something! We managed to convince William to watch a proper film rather than tractor Ted that we thought the nurse might enjoy more. He has been very tired today and really fighting it, I think he didn’t want to miss out on seeing Daddy, especially as he was laden down with new toys, DVD’s and books.
It is extraordinary to think about these magic cells and what we are hoping and praying that they will do in their new home (William). Williams white blood count was less that 0.1 this morning and the normal range is 4.5 – 13.5 so all those drugs have done their bit (the white blood cells are the ones that fight infection and give immunity for those of you either not paying attention in Biology or for whom it is so long ago (I fall broadly into both categories). I think it will be between 10 and 21 days before he starts to make new cells. It is a momentous day but difficult to know how to mark it. I think that later Rob and I will try and put together a thank you letter to the donor, which they will forward to him. We have to be vague about the details to protect the anonymity of it all but hope that will be able to convey somehow what his gift means to us all. Holly another patient on the ward had her transplant on her second birthday, which seems so fitting and full of promise. Lucy, next door is feeling a bit poorly as she is about 10 days post transplant so please say a prayer for her and all the children here if you are that way inclined. I think that the hardest times still lie ahead here.William went to bed about 5.15 so we will see how this evening plays out. Again he has not really eaten anything but they gave him a day milk feed and he is having more later and then the TPN overnight too.