Saskia Journal

DAY ZERO. Transplant day. Still being congested and with the remnants of a cough, I have still not been in to see Saskia. This has been enormously frustrating since I have both missed Saskia and felt somewhat inadequate in not being able to help out at this time. Today was a great opportunity to get more involved with other things though since I took Imogen into hospital at the crack of dawn for her bone marrow harvest. It was essentially very similar to 2 operations Saskia had already had (one a harvest, one a test) so I knew the score, though whilst Saskia is remarkably cool with the whole hospital/doctor/needle thing, Imogen is the exact opposite and dissolves into a screaming mess at the first sign of a stethoscope. I was somewhat anxious as to when Imogen would actually be seen since she had been nil-by-mouth since the previous evening and the little tubster often struggles to be civil in the morning till she's had her morning milk, but mercifully she was the first one in the operating theatre. They knocked her out with gas as I held her tight in my arms. It didn't feel as weird as I had feared as she slowly stopped kicking and slid under, and having left Saskia in that same room only recently it also did not upset me as much this time leaving Imogen in the hands of the doctors.

The operation went well and we actually made it home today. Imogen had been expected to have an overnight stay, but her good recovery and the agreement of the doctors that she would get the best rest at home got us a discharge. Imogen really has come through it well - demonstrated by the way she demolished her supper in typical fashion. If only she'd learn to walk some of it off . . .

I managed to speak directly with Saskia today, which was a real high point. The chat was through a door with a small window, but I was touched that she seemed very happy to see me. She seemed on great form. Having not seen her for a week, and having heard of how sick she had been at the weekend, I had not expected to see her looking so perky and energetic. We could not talk too freely through the door, but my mind was put to rest a little for not having seen her for so long. I only hope I can get in there soon.

As for the transplant itself, all went well. The bone marrow harvested from Imogen today, together with the stem cells collected from the umbilical cord when she was born which had been in storage since then, were sent directly to another hospital to be processed. This was necessary since although Saskia and Imogen are matches in their "tissue type", they actually have different blood groups.

The processing of the blood attempts to remove many of the red cells (possibly other stuff too, I'm not sure) so Saskia will not have an overly severe reaction against Imogen's cells. The cells then came back from the other hospital, and by the time I left the hospital with Imogen this evening, Saskia was already well into the transplant itself. This is simply an introduction of the bone marrow harvest and the stem cells separately though the hickman line in precisely the kind of procedure Saskia has gone through nearly 50 times in previous blood transfusions.

Saskia is likely to feel OK for a few more days until the effects of the previous chemotherapy really start to kick in. That's when her hair will start to fall out, she'll get a sore mouth and throat and bad diarrhoea. Hopefully by then I can be on hand to work through it with her.

I got some sleep today! Consequently I feel like a different person. It was only a 25 minute nap, but boy did I need it.

Imogen was fine today and we have persuaded the doctors to let her come home tonight which is great. I know Imogen will be happier to sleep at home (as will Stuart) and Alice will be delighted to have Imogen home tonight too. This morning once Imogen had left for the hospital, Alice started talking about when she would have to go to hospital when she was 4. I had to tell her that she and George wouldn't have to go to hospital and that Saskia really was quite poorly which was why she was spending so long there.

Saskia has now had her new bone marrow, we just have to wait now and see if it engrafts, if Saskia's body accepts the new tissue and if Saskia gets any nasty infections while she is still lacking her own immune system. We still have a long way to go. Saskia knows this, she is already asking when she can go home, but realises she has several weeks more to stay in hospital.

So much for the next few days being quiet. Saskia has perhaps had her worst night of all and by this morning had been sick pretty much every time she has had to take her medicines. Within seconds of arriving this morning I had the nurse telling me that I had to persuade Saskia to take them. I've already been pleading with her every day to take them, luckily with some success, I don't know what stops I can pull out to get them down today. It's especially hard because once again I am so incredibly tired. Luckily after I had left Saskia perked up a lot, took all her medicines and by this evening had even eaten a boiled egg and slice of bread. I so hope she enjoys a few more days of feeling good now. It is heart breaking to see her lying so helpless in bed.

All is well at home. Imogen is completely recovered from the operation but we need to supplement her diet with iron for at least six weeks to make up for the blood she lost during the procedure. Alice, Imogen, Stuart and I had a lovely hour or so in the garden playing together enjoying the gorgeous sunshine. I had a good bonding session with George at bath time (or should I say sink time, since we wash him in the sink still) when he was wide awake and happily kicking around on the bed. No proper baby smiles yet, but I feel they are just around the corner.

We got a lovely signed photo from my colleagues at work today. I've framed it and am looking forward to seeing Saskia's reaction on receiving it tomorrow. All the things my friends and colleagues are doing for us - even the smallest things - make such a difference to me and to Saskia. Really, even a one line email can make my day so thank you all so much for keeping in touch with us and letting us know you are thinking of us.

Today was one of two halves the first half – or even three quarters were good. The last bit terrible.

Saskia seemed well this morning. We did some crafty stuff together and then listened to a book on CD. It hadn’t finished by the time I left the hospital but Saskia apparently listened to the whole thing. This afternoon when I got to the hospital Saskia had just taken her medicine (hooray) and was fine, but a little tired so we listened to another book on CD and just held hands as we listened.

The weather is gorgeous today and I have managed to grab a few minutes of sunshine in the garden rather than trekking to and from hospital. Alice and Imogen have played in the garden almost all afternoon. I managed a couple of phone calls to friends and even went to the pub for a drink. Stuart and I were quite upbeat about Saskia (realistic, but upbeat) and it was great to talk about something other than bone marrow treatments, hospitals, rotas and who will be feeding the baby.

When we got home though, we were brought back to reality with a bump. Margaret called to say that Saskia was sick again and that she expected an enormous battle trying to get her medicines down her. We had a deadline and if we went beyond that Saskia would have to have a tube fitted that leads from her nose to her stomach and would stay in permanently until the medical regime eases a bit. I rushed in and spent the next two hours coaxing and cajoling my crying pleading child to take a medicine that would not make her feel any better, but that is essential for the treatment. It was horrible. At first Saskia just wanted to sleep, but then you could see her mind working at ten to the dozen to work out how she could avoid taking the medicine. Eventually she agreed to try tablets instead of syrup, but within seconds of taking the tablets (which took a lot of persuasion and a tad of bullying on my part) she vomited them straight up. Then Saskia said she’d have the tube, but then got scared and said she’d drink the medicine. Then the slightest whiff of medicine made her feel sick again and so while choking back the tears she agreed to have the tube.

Saskia being the stoic and wonderful child she is took the tube really quickly and easily and I think this will be an improvement for her. Although it is not nice to see her with a tube going down her nose, she can now sleep through all her medicines because they either go through the tube in her chest or her nose. The only battle we have now is to make sure she cleans her mouth and teeth well – not that easy as she hates the mouthwash. Still we have now gone down from 12 battles a day to just four. That’s got to be less draining for all of us hasn’t it?

Got home at midnight, expressed the volume of milk that George had drunk since I’d been out, watched 15 minutes of golf, went to bed. Phew. That Easter Bunny better bring me a pretty big egg!

A quiet day today. Poor Saskia was exhausted after her late night yesterday. She’s also just not eating or drinking. Believe me we have tried but not even a Kinder Egg tempted Saskia to eat today. The nurses and doctors say that the next few days should be the worst Saskia feels and things should improve from then. I sincerely hope so. It is heart breaking to see her like this and makes me think “what are we doing to our little girl?”. I hope the improvement starts soon and some of the side effects we anticipate around now, like the sore tummy and bleeding gums, do not materialise. All we can do is look after Saskia and make her as comfortable as possible.

Back at home Lois, Simon, Nathan and Emily came to visit this afternoon. The children all played together really well. I went back to the hospital to be with Saskia. I’m not sure how useful my visit was as Saskia was asleep for most of the time I was there. Even worse, Stuart and Simon managed to make Imogen walk! Allegedly (as I have seen no evidence of this whatsoever) Imogen walked 12 paces across the room several times. What can I say? Stuart goes in to hospital tomorrow, so I will be able to stay home more and perhaps will see Imogen walking independently. If not I feel fully justified in bribing her with Easter Eggs and if she piles on the pounds from receiving kilos of chocolate, I can make her walk off the extra calories!

22.30pm. At last I have made it into the hospital. What a relief. I really have been so frustrated not being here, and I feel much more at peace just to be with Saskia again that it's taken the edge off what actually may have otherwise been quite a tough day. I had expected at this stage to blog away about the ins and outs of Saskia's experiences but, having got though the day to sit here now in the corner of a partially lit isolation room with Saskia sleeping peacefully just across from me, it's now clear to me that it would not be appropriate to air the full details of her trials in here. Quite how the mind of a 5 year old copes with it I am not sure, though perhaps a child can deal with the situation better than us older folk who might otherwise protest more about the arrest of normal freedoms and bodily functions, and the total invasion of personal space.

Suffice to say that the several changes of bed clothes were unfortunate and sad for a little girl and her dad, but we dealt with it well. Less immediately manageable was when after trying to administer some essential oral hygiene, Saskia ended up with the end of her nasal tube not in her stomach as it had been for the last couple of days, but instead protruding from her mouth into the bedpan I had just juggled to her mouth as she vomited. Unsurprisingly I could not see any funny side to this at the time, and I can confirm that laughter was nowhere near Saskia's mind. Saskia's stoicism is now being tested to the limits, though I am proud to say she is still the "trooper" some of you have referred to her as, though I prefer to say her star still shines brightly in dark times. In fact today was full of laughter for both of us. For most of the afternoon she was her normal chatty self as we played some games and talked. I can already see that one of toughest challenges for Saskia will be the sheer length of time she is in here. The variety of visitors (teachers, play specialists, me, mum, grandad and grandma) and the wide variety of entertainments she has by no means compensate for her lack of freedom both geographically and in her predicament.
Her room looks fantastic. It's not huge, but the view is great and there's space enough, especially given Saskia's current preference for lying in bed. The walls are covered with photos and some paintings which Saskia has worked on. Most space is taken up with cards and letters of good will from family and friends, each of which has been wiped down carefully by mum and inserted into clear plastic before being wall-mounted. There are many books and puzzles on the shelf, a couple of crates of craft and colouring materials on the floor, and the wardrobe has bags of further goodies we have yet to re-open since coming here two weeks ago. There's always the fallbacks of DVD and TV too, not to mention the new Nintendo game console which she's just taken delivery of, though I expect Saskia might not be the main beneficiary of this during the long evenings in hospital.
Speaking of which, that's enough from me for now. I am so happy to be in here at last. I've taken most of the day to get my head round what goes on in here. It's likely that the next week or two will be the toughest (similar in fact to last week) for Saskia, but at least I can be involved in trying to help her and the family through it.

Well, Stuart is in - finally. When I saw Saskia this morning she was fine, but subdued and clearly not feeling great. I wouldn't say she was feeling awful either. She seemed more tired than anything. Anyway, I am hoping that Dad will update his blog in the near future to say how Saskia is. Back at home Imogen resolutely refused to show me any walking action. George has been lovely (still no smiles yet) and Alice is also being very sweet. I suspect Alice being sweet is mostly down to her nature but also in some way down to the fact that she has about 300 Easter Eggs which she will only be allowed to eat if she is good. We had fun painting in the afternoon (very, very messy painting) and just hanging out. So far looking after the kids on my own seems fine, but let's see how it goes. I'm certainly less tired for not having gone in to hospital twice.

It's the betting event of the year and I'm not talking about the Grand National. The question is: will Imogen walk or George smile first? You can get decent odds on that one - I'm beginning to think of offering not bad odds on George walking first too. That sweet, sweet smile of Imogen's belies her stubborn, monstrous character. No matter what I try she just isn't planning on walking unaided when I am around. Imogen goes back to nursery tomorrow. Perhaps a bit of peer pressure will get her off her bottom. Alice is also off, to "play school", the activity camp at St. Christina's, so I expect the house to feel very empty tomorrow. That should give me time to make a double visit to Saskia tomorrow. I am amazed by Saskia, even after yesterday, which she said was not too bad a day. I'm glad she feels that way because I made the mistake of reading on the internet about the potential side effects of the latest chemo- drug she is taking together with the details of a side effect that we were warned would happen and I think things may well get quite a lot worse before they get better. The hair loss is definitely imminent. Every time I looked at Saskia this morning there was more hair on her clothes and on the bed. She has a lot of hair to lose, but I think it will go quite quickly now. I have got out her hats in preparation. To me she will still look beautiful, but I hope she does not find losing her hair too traumatic. It won't really start growing again until after she has stopped the anti-rejection drugs so we will have several months of hat wearing ahead of us. Stuart is talking of shaving off his hair in solidarity! I don't think I'll join the club.

I left the hospital this afternoon, handing over to my dad, feeling pretty positive about how it's going. Saskia has had a good day today. Not only did she eat a small amount of breakfast and a little more lunch, she played very well with me and we had some great chats. It was particularly good to see her eating since she's hardly taken anything for the past four days and in fact has been fed a special milk through her nose for two days. Whilst she could survive on this for quite some time, the partial return of her appetite, or possibly the slight repression of her fear of nausea, was a clear sign that she was genuinely feeling better. Saskia interacted enthusiastically with the play specialist as they made an egg holder for Saskia's Easter Eggs, and she was out of bed and changed for the whole day. It's clear that Saskia may have some tougher times ahead, though. Although Saskia still seems to have a full head of hair, the pile of hair on her pillow this morning and the increasing amount falling to the floor during the day shows that we're well on the way to baldness, probably within the week we're told. Also, Saskia did complain of a sore throat when she swallowed her lunch, and this may well be the beginning of the sore mouth/throat of which we were warned: we are told Saskia will probably have to take an anaesthetic spray or at least some painkillers, though we're still trying to be optimistic on this one. Tomorrow Saskia gets the second and final dose of the last chemo drug. It seems odd that she is still getting some chemo after she has had the new bone marrow, but it's to try to dampen the effects of graft v host disease which is one of the main concerns from here for many months to come (or possibly years if things go badly).

I'm now "off" for a couple of days according to the rota, and I'll make sure I enjoy my time out of the very intense experience in hospital before throwing myself fully into it again on Thursday. One thing which has really stuck me in the past couple of days is that standard of care Saskia is getting in the hospital. The nurses are great. They are extremely friendly and professional and the amount of contact Saskia has with them and their attention to detail is impressive. We see the doctors less, of course, but they have been great too, and we feel in good hands in general. This is a good thing since the complexity of the treatment is extreme. Saskia is on some drug or other for virtually the whole day (and night), every day. In fact most of the time she is on more than one drug at a time, either in her Hickman Line or through her nose tube. No wonder she was so fed up with taking some of the drugs orally - I am actually glad she is being given medication through the nasal tube just to reduce the whole apparent scale of the procedure for Saskia.

Please don't be put off the lack of "Saskia-blog". She's pretty well today, for example, and is actually very well entertained in her room with lots to do. Today she's been: doing arts-crafts stuff with the play specialist (Saskia made an impressive looking holder for her Easter Eggs out of paper plates, chick designs, sticks and silver paper); chit-chatting a lot with the dad, mum, grandad, nurses and the play specialist; playing on her Nintendo; playing on the internet (mainly ClubPenguin which she loves); and actually eating a little today too. I'll try to get her to blog a little in the following few days, but am not going to push her too much. Mum and I will keep info on our blogs up to date.]

Just as I have no independent witnesses to George's very sweet smile, I came very close to not seeing Imogen charge down the corridor unaided ON HER FEET!!!!!!! Once again I came home to tales of Imogen walking up and down and up and down the corridor with Stuart and Kendall. When we tried to repeat the performance for me, strangely enough Imogen refused to perform. However, one should never underestimate the power of "Special Bow Wow".

Once he was balanced on my head Imogen took no less that 15 paces down the corridor to me and back to Dad at least three times. Hooray! That, coupled with Saskia being so cheerful today has put me in a good mood. As ever though I am circumspect. Stuart's reports of Saskia's sore throat augur potentially bad times to come over the next 10 days at least. However, Saskia's amazing strength of will, Alice's and Imogen's sweet nature and George's floppy cuddles are keeping me going. Not to mention wonderful Stuart. Thanks also for all the messages we are getting. They are helping ALL of us through this.

Given the events of Friday night, I tend to dread an unprompted call home from the ward. So today when Grandad rang me at 2pm from Saskia’s ward I was concerned. After all, I’d only left her two hours ago. Had she deteriorated so fast in such a small space of time? Absolutely not. This, was a different kettle of fish. Saskia wanted boiled eggs with toasted soldiers. WOO HOO!! Saskia was interested in food. Of course, there were no eggs or pans in the hospital, so I leapt on my bike with a saucepan and eggs in my handbag and cycled (very carefully – I had all my eggs in one basket) off to the hospital. Saskia managed two soldiers and about 4 mouthfuls of egg before she’d had enough. Not a huge success, you may think, but that’s a big improvement from where she has been for the past week or so. I only hope today’s dose of chemo drug (her last dose of chemotherapy – again -Woo Hoo!) doesn’t set her back.

Saskia is most definitely balding. There is hair everywhere over her clothes, bed and ward floor. She has got to the stage now where I think she will look better if we take it all (what is left of it) off. Right now she bears a striking resemblance to Rog (my younger, older brother), only Rog has a better haircut and looks more distinguished.

I only saw Saskia for a few hours today. Whilst she's not quite as chirpy as she was the other day, I am still encouraged by how she looks and the general impression she gives. Having said that, she's not eating very well again and I think her nausea is back. This may well be due to the last chemo drug she had yesterday. The most obvious symptom, though, is the hair loss which is now really starting. Whilst we've been expecting this for ages, seeing Saskia like this will be upsetting nonetheless. Her skin underneath is pale since it's been hidden under her thick hair for so long. I really hope she likes wearing the hats we've bought her. I'm guessing in a few days all the hair will be gone: I'm not sure yet whether I'll post detailed photos or not.

I am feeling fine today. I played draughts with Mum and tried to make ice with a penguin ice crusher. It didn't work very well. The ice just melted and it looked like the penguin had done a big wee. Later Nicky the nurse had to check my throat by touching it with a cotton bud. That was not so good.

I really miss my sisters and brother, but I am having fund with my DS. I am playing Dogz and my puppy is called Zak.

My walls are getting full of lovely pictures and cards. I don't know what my favourite is yet, so please send more if you can. They make me happy.

Saskiaxxxxxxxxxxxxxxxxxxxx (20 kisses)

Not much to report today. Saskia was well in the morning and we chatted a lot and played together. Saskia even seemed more energetic than I had seen her for a while, climbing up and down and up and down from her bed. We had a bit of resistance from her when we had to take a throat swab from her. You can see that she really hates all the prodding and swabbing and tubing that goes on with her every day. It took a long time to persuade her to let the nurse touch the back of her throat with a long cotton bud. Instantly Saskia had a really sore throat and her mind was working at ten to the dozen to see how she could get out of the whole thing. We got there eventually though. The swab will tell us if her current sniffly nose and cough is a bug to worry about. I would be speaking too soon to say things are going brilliantly, but in relative terms to other patients receiving a BMT things are not too bad. Many of them need to be dosed up on morphine by this time. However, the side-effects of the chemo are still looming over us and will do until at least the end of next week.

In the afternoon I thought I'd catch up on some sleep, but George was having none of it. Although he normally sleeps like a baby all afternoon, today he decided that he would whinge for just as long as I tried to nap, stopping only when it was time to collect Alice from her activity camp! Ah the joys of newborn babies, I do wish they'd read the text books (not that I have this time round unlike for Saskia when I think I had no less than 6 books to refer to). Watched "V for Vendetta" in the evening with Stuart. It was nice to have a cosy night in. What an odd film. It can't be all bad though because I managed to stay awake until the end.

After I left Saskia yesterday she had a turn for the worse. She spent much of the afternoon after I left being sick, and my Dad tells me she was very out of sorts in general all night. I went in this morning with some trepidation, but it was not long before Saskia turned this around by rather unusually asking for some food. She stuffed her face. She has not eaten so well in over a week, and I take this as a real sign of how she feels. She chatted away to me happily during my time with her, though by the time my mum turned up Saskia was asleep. She has been sleeping for a while during most afternoons, and I am not concerned by this. My folks seem to be coping well now that we're on the agreed rota properly. The carer I'm concerned about at the moment is Nat, who at the time of writing has had to dash for an emergency appointment at the dentist to try to resolve some acute pain she is having in her jaw. It never rains, eh, or is it just the date? Fingers crossed.

Sho can you undershtand me when I shpeak? Sho much for Shupershtition. Today was a real Friday the thirteenth. I have just had to have root canal work and have had so many pain killing injections that the dentist warned me I will not be able to feel my tongue for another four hours! Here's what I wrote earlier:

I am not too well today. I have just the hint of a sore throat and a headache, oh and tooth ache too. These things have a habit of happening all at once. I slept for most of the morning and did not go in to see Saskia so that I do not pass on whatever bug it is that I have to her. I plan to take things easy for today in the hope that I get better quicker that way. Meanwhile, it turned out that Saskia had a terrible afternoon yesterday, being sick 4 times. Poor little thing. By lunchtime today reports are that she is feeling a bit better and has asked for breakfast.

Talking of breakfast, Imogen decided she was a bit peckish before supper and decided to help herself to some Cheerios. Here's what she did: shuffle (not walk) over to the cupboard, take a bowl, open the cereal cupboard and put a couple of handfuls in the bowl. Then she ate her starter! This is so typically Imogen, she's neat and tidy and doesn't like doing anything unless she does it properly. Perhaps she could be a dentist in years to come, I can see her having no problem with giving a patient enough local anaesthetic to last for several hours!

I can confirm that shaving your daughter’s head with a “number 1” length shaver can indeed be a positive bonding experience between father and daughter. Saskia once again outdid herself. She accepted that the widening bald stripe and the almost entirely bald back of her head were best joined in style by the sides. It didn’t take long to do, and it’s no exaggeration that Saskia was positively excited about the experience. The result is much better than I could have hoped. There’s still some of the very short stuff to fall out, but I think she looks rather like this, in other words quite pretty and certainly much better than I had expected. At the moment she thinks she looks quite cool too although all evening she’s been touching her occasionally head and then looking round with an “Ooooh!” One of the baseball caps has been out. It’s the one I hate, but there you go. Think I’ll buy her a hoodie.

She’s been on toppest-Saskia-type-form since I’ve been in today. She’s now asleep having eaten a great lunch and supper. I saw the head consultant today who popped in to see us. He reiterated that Saskia is doing well so far, and that we should take encouragement from this. Though her performance has not been freakishly good, it’s not at all uncommon for children to be in worse states that her at this point in the process. He did make clear though that we’re in a wait-and-see position for the next fortnight at least as we observe the neutrophil count which we hope will go from 0 somethings to 1 something. This would indicate that her new immune system was back up and running. We got to 0.1 somethings today for the first time. That could be just measurement noise, and even if it is a move towards a good count the journey there can be a slow one, but nevertheless I like to feel optimistic on this one.

Another encouraging day from Saskia, although it faded somewhat at the end. A late lie-in was followed by a large breakfast and some game I can’t name but which involved lots of throwing and catching of an elongated balloon, racing each other round and over the bed and laughing loads. I think the nurses are well impressed at how Saskia is doing. The afternoon developed less positively when Saskia decided to eat not much else, throw up a couple of times, develop a rash, have high blood pressure and have an odd lumpy bruise thing on her side. We’ll be in here for a long while yet.

On the no-hair subject, Nat and I were agreeing that Saskia’s good looks almost shine through more without her hair, even though it was thick, shiny and all the rest. I still think Saskia looks most like Sinead, or possibly Ms Portman. Nat things she also looks a little like Sigourney or Demi, but I’m not so sure. Either way, I’ll reiterate what I said yesterday that for parents and child the no-hair situation is far from the challenge we had expected. Saskia is still almost excited by it. I’m not sure whether to post any photos of her looking like this. I probably will, but until then please settle for the truth that my lovely eldest daughter looks like a film star.

I've had a bit of a life this weekend - I have not only been to a hen do on Saturday evening, but for the hen brunch on Sunday morning too. It's funny how easy it is to forget just why you shouldn't stay out late when you have a new baby. As I'm breast feeding, my boobs gradually expanded over the course of the evening. I was very relieved when it was time to go home but I honestly couldn't say whether it was tiredness from sleep deprivation, or the fact that I thought I would burst if I didn't get home pretty damn quick to feed the baby that made me feel so glad to get in the cab. Proof of just how much milk I had produced over the evening came by the fact that George gorged himself so much when I got home that he then vomited straight down my cleavage. Nice. Anyway, don't forget the sleep deprivation. After getting to bed some time after midnight George woke me again at 3.30am for a feed (really I thought he'd had enough at midnight to last for three days!) and again at 6.55 am. By the time I got to the hen brunch, George had also managed to poo on me twice through his clothes! I think I probably felt worse than those hens who had been up to the wee hours, drinking liberally.

It's relatively good news then that when I saw Saskia today Dad had worn her out with the two great hospital sports of speed bed climbing and balloon catch. She was feeling tired and just wanted to watch tv. I may have sneakily stolen a quick 40 winks during Fireman Sam which may account for the slightly surreal dream I had (set in Wales of course). If you've read Dad's blog, then you'll know Saskia is now hairless (well almost, she has two dark patches of stubbly hair left). Now, no one would wish baldness on a five year old girl, but I have to say she does look strangely beautiful. Her huge dark eyes are just so striking. We are lucky to have such a gorgeous looking girl. (I am slightly biased, but not so much, ask me some time to be honest with you about George's looks).

Her neutrophil count is again 0.1 today. I am prepared to be told at any point though that the count is back down to zero. I may have been at a hen do, but I'm not counting my chickens just yet.

Saskia continues to make excellent progress. We’re told she’s up to 0.2 somethings on the neutrophil count, but not to count our chickens. Or somethings. Today Saskia was again generally in good spirits, though it’s easy to see that these four walls are grinding at her. They’re certainly niggling me, and I get out at least once every 24 hours. It’s a shame that I’m missing the splendid weather, but at least I get to view out of the window. Saskia does not talk much about getting out, but I know she is more than keen. Saskia is back taking one of the drugs orally rather than into her Hickman line. This is the first time she has taken a drug orally since she had real vomiting issues nearly two weeks ago and the nurses had to put the line into her nose (this is still used for many other drugs). This particular drug is better orally they say, but although it comes in small amounts it is the one Saskia hates the taste of. Saskia decided to share the love on this one and gave me a real struggle in my attempts to persuade her to take it. Eventually she took the syringe and squirted it into her own mouth. She will have to take this drug every day for a long time, even after we come out of hospital. I hope it gets easier and Saskia stops her violent protests about the taste. She was so good at taking medicines before she came in here. I can understand why her patience has been worn through.

Saskia was lovely and bright this morning. We made badges to decorate her hats all morning. The doctors are trying to wean her off as many medicines as possible which we take as a positive sign. For Saskia less medicines can only be a good thing leaving her free to roam her room rather than being hooked up to a machine for large parts of the day. We are still playing the numbers game. I am very used to this. When we tried steroids with Saskia several years ago, our life seemed to be governed by dosages, blood counts and reticulocyte numbers. When we tried metoclopramide again we looked at blood counts and reticulocytes. When we tried for a sibling match, our life was governed by numbers of follicles/eggs/embryos/matches (plenty/fewer/not so many/zero twice). Now it's neutrophils. 0.2 today which is as good as we could hope for, but experience tells me not to get too excited until we see a really healthy constant growth and the doctors actually say "the bone marrow has engrafted" or even better "Saskia can go home now".

Another good day today. Saskia's blood pressure is bothering the doctors less, and she's at 0.4 somethings, but no chickens.

Actually I'm all blogged out and understandably, I think, would rather think of something else for a while. See you on Thursday. Bye.

I took Imogen swimming today. I had to really. Yesterday, I made the fundamental error of discussing with a 20 month child what we would do tomorrow. i.e. "shall we go swimming tomorrow?" (I had just got back from the pool with Alice). For the past 24 hours Imogen has been trying to get changed for a swim, taking off her top, trying to take off my top and presenting me with her swimming nappies. She is like a dog with a bone, has the memory of an elephant and swims like a sabre tooth tiger (have you seen Ice Age 2?) - enough animals for you? You'd think that with four children I would know the basics - only discuss the immediate, never ask anything that should be issued as an instruction (don't say "shall we" unless their opinion really will affect the future). I swam properly yesterday for the first time in ages. The good news - I managed 36 lengths in 15 minutes; the bad news, my knee injury from January (it's been a good year) needs attention, I can't even begin to do a breaststroke leg kick without experiencing serious pain. Oh joy, more medical appointments. Speaking of things medical, Saskia is well today, count 0.4. Even I allowed myself a little flutter of excitement at that one but am still ready to hear a lower number at any point.

After the car was towed this morning, I trudged off to the pound with the righteous rage that only a valid residents permit holder can have. I felt it wasn't going to be my day. I was wrong. They released the car without charge (it had been "an error" and life's too short for me to start a letter-writing competition with Westminster Council) and whilst I was there I received a text saying that Saskia's neutrophils are getting reasonably perky (0.8). Not quite perky enough for her to be able to make a brief foray out of the room, but actually not too far off. This is great news, the neutrophils now being at a level where we feel increasingly confident that the new bone marrow might actually be starting to work, albeit weakly at present.

When I went in to see Saskia today I was brought down abruptly when I saw through the window that she was being restrained by a couple of nurses and screaming in protest whilst they inserted another nasal tube since she has again vomited the previous one and was refusing to take any medicines orally. I can understand her protests. Apparently some of the medicines taste foul and others make her feel nauseous (or actually make her sick) and having someone stick a tube up your nose and down into your stomach is not very pleasant, especially if you can't fully understand why all this nonsense is going on. When I got in to see Saskia, however, she seemed on good form again. The hospital school is back in action after the Easter break which means twice daily visits from a teacher. Saskia really enjoys this since it's a stimulating diversion.

I am focussing on the truth that really nothing has gone wrong since Saskia went into the room nearly four weeks ago. We're certainly on the more positive end of our prior expectations and we've had no setback to the schedule. Our visibility is still low, but at the moment I am feeling increasingly optimistic that Saskia might make it home in the next month or so. After that we will still have challenges. There will be multiple drugs to take daily, even in the best case, and unfortunately this includes the two Saskia really hates. There will be loads of hospital visits. There will be the need to keep Saskia away from areas where she might be more prone to picking up infections (we'll be going out only to large, open outside spaces for a while). It would be unusual for Saskia not to develop some kind of complication even after she leaves the room. But we knew this was going to be tough. And so far, so good.

Saskia is on good form at the moment. I began my day with a shopping list of foods for her. Considering that she is still being sick from time to time, it's great to see that she does have her appetite. The problem is (for food obsessive me) that she loves hospital food - bland soft white bread, soggy chicken burgers, soggy chips - she thinks they're fantastic! Whereas I cringe at her menu choices. Still, it'll have to be hospital food mostly for as long as Saskia is restricted in what she can eat. She is on a "clean" diet. Imagine feeding a pregnant woman, under the age of one and you're just about there. With my short visits, I don't have enough time to prepare her much that meets the mark. I don't think Saskia will miss the hospital food too much though, because she's been asking for salami and sushi recently (posh bird!) neither of which she is allowed, but if things progress as they have been, I am hoping it may not be too long 'til we have a nice long outdoor stroll and have a picnic of sushi and salami while we're out. All this is said while my crossed-fingers are knocking on wood. Saskia still has no immune system to speak of and we still have to be very careful to make sure she avoids bugs.

Great news. Tests on Saskia's new immune system came in above a decent level for the first time (neutrophils now at 1.1 somethings) and she was allowed out! Not only out of her room, but out of the hospital to briefly walk along the canal right next to the hospital! This is the first time Saskia has been out of that room for nearly four weeks. It was such a good feeling to be with Nat and Saskia walking along the canal. Saskia, sporting a very lovely hat her godmother sent her, loved it too. She laughed a lot and hid from me. Little tyke. We only stayed out for 20 minutes before going back to the room, but this is a truly momentous step. This is not necessarily a sign that Saskia can return home imminently, but it can't be bad, eh? There are many possible (likely) future complications, but I think this is a great indication. It is unusual for someone to be allowed out after less than 4 weeks. Saskia is doing relatively well. She is exceeding expectations. So far.

When we were back in the room, Saskia was again on good form. She again impressing her teacher with whom she was doing maths this morning, and she seems so much more lively than she did a week or so ago. The medicines are still a challenge, but I am seriously delighted with how things are going. I feel we're possibly moving to the next stage.

Saskia's room is pressurised at a slightly higher air pressure than the outside parts of the ward. This keeps the bugs out because air pushes out of the room hatch and door rather than in. I discovered this morning that the extra pressure has had an effect on Saskia. No sooner did she step outside the door than words kept flying out and she seemed to grow about an inch. I honestly do not know who was happier to be walking out of the door of the isolation ward this morning - me or her. The Drs must be quite happy with her too as the first thing they told us this morning was Saskia's neutrophil count. The school teacher who was in at the time also said that this was really fast progress. We are delighted (remembering that neutrophils do not a full blood count make and we need Saskia's platelets, white blood cells and, of course, red blood cells to come up too). I was amazed by Saskia too. Even though her muscles are quite wasted from all that time spent in a small room with virtually no exercise, she still wanted to race us up the steps and then run further. When we said it was time to go in, Saskia said she had plenty of energy. Long may this progress continue. I expect to be weepy for the next few days, but finally these are happy tears!

Back at home cousin Zoe dropped in to say hello, all the way from Paris. It was lovely to see her. Imogen got her first ever pair of proper shoes. However, measuring her feet was about as hard as listening to her chest with a stethoscope or putting in a cannula! She screamed and wriggled and squirmed as much at the shoe shop as she did at hospital the other week. We did manage, finally, to get a measurement and she is now delighted with her pink, size three and a half G shoes. She keeps looking down at her feet and pressing her toes with a big smile on her face. Seems like we are all smiling today.

No change really today. Neutrophils still at 1.1, no real sign of anything else picking up. Saskia continues to be very jolly, but we still struggle to get her to take her medicines. Still, it's better to start battling with her now than leave things until later. Until Saskia will reliably take many of these medicines, we can't bring her home no matter how good her blood counts are.

Tests on Saskia’s immune system didn’t quite yield the results required for her to be allowed out for a walk today. This is very disappointing, not least for Saskia who had really enjoyed her walks beside the canal of the past two days. I’m obviously worried that this might be some larger problem starting to emerge, but the doctors had warned that setbacks were possible and I’m trying to remain circumspect.

In herself, Saskia is still very well although the monotony is starting to bite. For most of today she was upbeat and animated, and on occasion prone to her special brand of raucous laughter. However, during a tired and listless phase this afternoon when she refused to try to sleep, she cried that “everything was boring, even my toys, it’s so boring”. It’s 9pm and she’s lying in bed across the room from me, staring at the ceiling. She’s moaning softly in my direction occasionally in an attempt to be allowed up for a bit longer. It’s tricky as a parent in this situation to know what to do. Experience says that she’ll drop off and be thankful even as I am forced to rouse her tomorrow, but my experiences prior to this are becoming increasingly invalid in helping me judge just what might be going on in Saskia’s head as the weeks in here stretch on and on. I’m desperate for some more good news tomorrow which might herald a clearer idea of when we can get out.

The challenges of Saskia taking oral medicines are being overcome slowly. This evening’s combination of three oral medicines and a mouthwash was over after ten minutes, though still a struggle. Since we’ll be taking some of these drugs home with us, whenever that may be, I’m hopeful Saskia can overcome the clear mental association she has build up between any medicines and nausea.

I had to chuckle today when I asked Saskia “What’s a Ferrari?” and received the reply “it’s a place where you can’t get out of the car and there are lots of wild animals”. Great.

I failed as a dedicated mother this morning. Picture this. 5.15 am, Imogen is screaming. I try turning over and ignoring it, but something in the tone of the scream tells me that this is not just a small "I'm awake, come play with me" whinge. When I get to the room Imogen is sitting up and sounding pretty distressed, so I pick her up for a cuddle. Within nanoseconds she gets put straight back down. Instead of the nice warm comforting snuggle that I envisaged, I am instead hit by a blob of vomit that was on Imogen's face and is now on my chin and in my hair. Sorry, but I was running for the sink to wash myself off while Imogen continued to scream. There are limits to even my maternal nature.

After a quick after-quake vomit, Imogen got a bath and she and I were joined by Alice, wide awake, at about 5:30. George joined the fun at 6am. I am knackered! This is probably why I am a little down about Saskia's latest neutrophil count - 0.9. I told you this numbers game is cruel and no matter how experienced I am at playing it, I still get sucked in to thinking this is all that matters and take each drop as a serious blow. Actually a drop is not unexpected. I was told the counts can climb 0.1, 0.2, 0.3 and then go straight back to zero. It just feels so crappy when it happens to you. Nevertheless, Saskia is in fine fettle. Imogen is also fine, having eaten breakfast and lunch and is now sleeping off the effects of her early morning. Alice is playing in the back garden with a friend. George is kicking around on his mat and I am enjoying the quiet. Or is that the lull before the storm............

We made it out of the hospital today again. Saskia and Dad did a monster 2 hour / 2 mile walk from Paddington to the Serpentine in Hyde Park and back again. Both of us are knackered, but we did it. Well done Saskia.

Saskia continues to make good progress. The medical staff here say she has made exceptional progress so far. The doctors have discontinued many of the drugs over the past few days. Saskia will be on only four of them tomorrow (some multiple times, though) and if things go well these will be joined by only 2 more over time. It feels like we are being geared up to start thinking about leaving over the next few weeks.

Saskia and I had a major fight about taking medicines tonight. Despite drawing a trench in the sand, I backed down after 40 minutes. The medicines were taken a while later as Saskia had promised, but I have been left feeling unsure and uncomfortable over the incident. It is extremely important that we get good medicine taking in place before we can go home. As of today there are no more medicines going intravenously via her Hickman Line, three going orally and one going into the tube through her nose which goes straight to the stomach. If she took this one orally Saskia could even have that tube removed. I have explained this to her and am pushing hard with the thought that with this barrier down we could be going home sooner.

It looks like there might be a little graft v host disease making itself apparent on her hands. This is to be expected, and we’re told it is even a “good” thing. The major danger from here, providing that the bone marrow graft is really working as we believe it is, is this graft v host disease becoming more serious. Only time will tell.

Saskia's neutrophils are at 2.8 today, we have been told to be patient in waiting for the other counts to come up, so I'll stop publishing the numbers for a while. We're fairly sure that the neutrophils are there now. For our outing today, Saskia and I took a walk along the canal to Starbucks. It took us ages to get there, not because Saskia was tired or weak, but because she was just so thoroughly enjoying being out. we had to play football with a pebble, avoid the lines, step on the coloured stones and clear a special path in the gravel to get there and back. It was lovely to be out with Saskia. Back in the ward though, medicines are still a big challenge. The nurses are planning to train Stuart and I up on giving Saskia her medicines for when we are home. The fact that they mention this must mean that Saskia will be home soon, but not imminently. We may be allowed a home overnight visit relatively soon, but the limiting factor on when that will be are Imogen and George's snotty noses. To that end, we are taking Imogen out of nursery until Saskia is well enough to go to school herself. We'll just have to find some play groups for Imogen to make sure that she stays as sociable as she has been to date. School for Alice tomorrow. I am glad that when I see all of Saskia's classmates I can tell them positive news.

In all her five and a half years of her life, I have never seen Saskia run as much as she did today. She was allowed out for a longer outing this afternoon and again she went to the canal with Dad and Grandad, stopping at the "boat café". When I came to meet the three of them, Saskia challenged me to a race. We raced up and down at least 10 times, then she raced Dad, then Grandad, then me again! What a picture: a girl only two weeks post BMT racing a man only 9 weeks post quadruple bypass surgery! Clearly Saskia feels well - especially when she is out of that room. Medicines are still a challenge, but I feel we will get there. It'll just mean a few battles of will but eventually I think Saskia will understand that no amount of sulking and struggling will make us change our minds. When that happens, we will be even closer to bringing our little girl home at last.

We got out of the hospital for a while again yesterday and, whilst we sat outside at a barge-cafe down by the canal, Saskia challenged each of us in turn to sprint races. This is not typical Saskia-type

behaviour. Whether this was the result of being shut in a room for 4 and a half weeks or a result of her high red blood count I'm not sure. The high red cell count is not due to her new bone marrow making it (that will hopefully happen after her immune system comes back up) but is due to the doctors keeping her "hyper-transfused" to aid recovery. I do hope this kind of activity level is a sign of things to come. Though Saskia's activity levels to date have been perfectly normal, I'd be delighted if after we're through all this she becomes more active than before.

It was supposed to be my day off today but I found myself in hospital for quite a while moving Saskia and all her stuff to another room. There are three air-filtered BMT rooms in the hospital: two large and one small. With the other large one occupied, another patient coming in on Sunday, and Saskia making good progress we've unfortunately been evicted and put into the small room. I'm very sad to leave the larger room. It wasn't huge but it was really very comfortable and it felt very bright with the windows down the long wall. I took lots of photos today and I'll post them soon. The new room isn't terrible and still has views of the canal, but we've been spoilt till now. I'm trying to reconcile myself to the move by thinking that it should be seen as positive since it shows we're making progress. However, together with some disappointing news about a lower neutrophil count this morning, I've been feeling somewhat grumpy all day. The low count meant Saskia was not allowed to get out of her room (except for the quick sprint along the corridor to the new room) and she was clearly disappointed about this. It's a very uncertain time, and I'm still desperate for some more prolonged proof of progress.

REALITY CHECK!!! Saskia's neutrophil count was low today - 0.4 - and that means she can't go out today. It is of course really disappointing to hear this, especially for Saskia. But it's a good reminder that we are just in the middle of the woods with a view of the outside light through the trees, rather than just about to leave the forest. Touch wood (ha ha) things will improve again tomorrow. The doctors are unphased by this. They told us that fluctuation in levels is very normal at this stage in the proceedings. This is because on some days Saskia receives a drug that encourages neutrophil growth and on other days she is left with her bone marrow alone to do the job. We just have to hope that the next time they take Saskia off the drug, the level drops less. Otherwise Saskia is on relatively few drugs now - probably the least number we can hope for for a few months yet - and that is a very good thing.

Well, if today's brief discussion around a potential discharge date is correct, the family may all be back home together even sooner than we hoped. There are still further conditions to meet before Saskia can be sent home but test results, medicine taking and Saskia's general health are all encouraging. We have a meeting with one of the senior nurses tomorrow about what happens post-discharge, so I will be able to post more detail then. We're certainly not out of the woods after discharge. When I recently spoke to the mother of a recent BMT patient who had got out in a ward-record 5 weeks I was shocked to hear he was on 20 drugs a day. I didn't believe this number to be literal at the time, but I do think it possible now. Saskia may still develop graft-v-host disease, and there are other potential dangers too complex to detail here. However, the consultant did mutter the words "perfect transplant" to me today, although it's clear that we need to be circumspect in that there are some possible post-transplant setbacks which we wouldn't expect to have even presented by now.

Saskia did not make it outside today; the slight novelty of the new room and the inclement weather combining to make a day in hospital less unappealing.

I've uploaded the photos (there's a link from the navigation bar on the main page too) from inside the hospital so please take a look at them. They include shots of Saskia with her new "look" which may last a while so please don't be shocked when you see her.

ALL CHANGE!!! I spent this morning sticking up all the pictures on the walls of Saskia's new ward. What a huge effort that took. I was again touched by how many of our friends and family had sent us their best wishes over the past few weeks. These messages really helped. Not only to let Saskia know that everyone was thinking of her, but to make her ward a more cheerful and homely place. Dad spent some time taking pictures of the old ward, which are well worth looking at in the BMT photo gallery. Nearly everyone who went in there (the ward, not the photo gallery!) marvelled at what a great job we had done to personalise the ward. I'm glad to have those pictures to remind us all of the time we spent in there. I am hoping we will not have the chance to forge such memories in our new ward. The ward has changed for the smaller, but the neutrophil count has changed for the larger - it was 5 today. When I thanked the medicine, the doctor reassured me that this was not just the medicine working, but also Saskia's bone marrow. We have our discharge meeting tomorrow. and will discuss then when Saskia can come home. There can be no doubt that having Saskia back with all the family will be wonderful, but it will also be very demanding and will present its own challenges. To give you an idea of how much we have to deal with even when she is home, the meeting is scheduled to last an hour even before we have bombarded the poor nurse with all our questions.

Despite the fact that Imogen now walks everywhere and we have not seen a bottom shuffle for days she has somehow managed to completely blacken her trousers outside in the garden - she has helpfully been watering the plants in the rain. Well, it wasn't that heavy a downpour. Meanwhile back at home, George got weighed and measured today - he is a whopping 6kg (13lbs 4oz) which puts him on the 91st centile, his length is around 60cm. Saskia will marvel at the size of the boy who was her tiny baby brother when she last saw him! Better get her home quick before he overtakes her!