Saskia Journal

Saskia is having a big year. Saskia’s BMT journal describes the experiences from March 2007 as she und

erwent the process of having a bone marrow transplant. Other big events happened this year too. On 1st March Saskia and her little sisters Alice and Imogen were joined by George. And at the end of January Saskia’s grandfather, Charles, had open heart surgery. Saskia hopes to be back at school late in 2007.

Exciting news! Saskia’s first tooth fell out yesterday. Or rather Saskia pulled it out. Saskia left the tooth beside her bed over night. The tooth fairy came, took the tooth and left one pound in its place. And she’d only been to the dentist yesterday for a pre-BMT check up.

Today Saskia went back to hospital for some more tests on her kidneys. Dad went with her. She spent most of the day in there playing and having blood tests every 40 minutes. Nikki and Jane showed Saskia and Dad around the hospital school and told us what teaching to expect when Saskia goes in. On days when Saskia feels well enough, we hope to have two sessions of 40 minutes teaching. I'm impressed how well resourced the hospital school seems to be. The school is joined to that in four other London hospitals and they share a computer network, giving internet access and video access from isolation rooms to the school room. Each patient who goes into an isolation room is given a laptop with which they can access both school resources and the internet, so Saskia will be online when she is in there. The bad news is that webcams will not work since the hospital network is protected by a firewall against file transfers. This is not great news since I had hoped to keep Saskia in touch with her friends via webcam. I will investigate getting a 3G datacard for my own laptop (mobile telephone calls are permitted from the room).

We played in Grandma and Grandad’s house. We drew on a special mat with water. We walked down to the park with Grandad and we played in the playground in the park. We went to the plant place to see some fish and we saw frogspawn.

Nat gave birth to a baby boy today: George Wolf Graham. He was born at 12.45pm and weighed 4kg. He was born in a birthing pool at St John’s and St Elizabeth’s hospital, the same place where the other 3 were born. Again, our time there has been great. OK, so Wolf's an unusual middle name, but it was the name of George's maternal grandfather (actually Wolfgang, but he was known as Wolf to his friends).

We had a tour of Saskia’s room today. As hospital rooms go, it’s much nicer than your average one. It even has an en suite bath room, although the bath is one of those sit up ones. No long soaks for Stuart while he is in with Saskia! We are allowed to personalise the room though, so I will be printing loads of pictures out and it would be great to have loads of cards and messages for Saskia to put on the walls. That way we can help Saskia feel this is a “home” and less of a solitary confinement ward.

I’m taking a couple of weeks off work for paternity leave, and in fact will only have a couple of days back at work before I take 2-3 months off for parental leave to help care for Saskia and the family whilst the she’s in hospital. It’s quite a scary thought thinking that I’m going to be off work for so long.

Another of Saskia's teeth fell out today. She is, as the cliché says, growing up quickly.

Thank you Dad – Stuart took Saskia, Alice and Imogen to play with their cousins today and I got a restful day with young George. The midwife came today to give him a final check over. He’s regained his birth weight today (4kg now). Judging from his nappies over the past 10 days, I am not entirely surprised he’s put on weight so fast!

Just two weeks to go now before Saskia moves in. I’m busy drawing up lists – what to pack for Saskia, what to prepare to help make her room more homely, what books and toys to get for her. Then there’s sending out notes with this website on to all our friends and family.

I also need to book her a hair cut, so must buy lots of magazines filled with pictures of “beautiful people” so that Saskia can choose a short hairstyle – hopefully one that she will not mind having before all her hair falls out and something she will be happy with when her hair starts growing back too. Meanwhile I will have to suffer the hardship of reading Hello, Grazia and Heat Magazines. That should keep me occupied while feeding George. I shall be a mine of knowledge of celebrity gossip – marvellous.

We're all sick. Bit of a scare yesterday when Nat suddenly came down with something. Within an hour she had gone from having lunch in a restaurant to being at home, shivering under a duvet and unable to move. We were able to get some antibiotics very quickly (well done GP) - we're pretty sure it's mastitis since Nat has associated breast pains. She seems a little better today. She's simply very tired too. George has been feeding and sleeping relatively well, though this actually means he's been waking between 1 and 3 times a night, even after midnight+ bedtimes every night. I'm pretty run down too - Saskia and I both have sore throats and are probably coming down with something. Not great news since I have to get back to work briefly this week before my parental leave starts officially next week.

Generally things are a bit shabby right now. Imogen's sick too, literally several times. No idea why. I've certainly picked up something too, and I've got some light flu symptoms with a bad cough and I'm not sleeping too well with it. I've elected not to go back to work for the end of this week. Several things there remain undone, but there's little I can do in my position. Not sure I feel great about his, to be honest.

George is extremely well, though. Nat and I are delighted to have a son at last. So far the girls seem to like him too, and I'm really happy how they're getting on with each other. George is sleeping OKish (Nat's doing the night shifts since she's breastfeeding) and he's feeding well. He's filled out nicely, and is starting to spend more time awake; not crying much. He stares around in that blank way young babies do: no comprehension; no frame of reference; unfathomable. He's looking cute enough though, but I guess I'm not the best judge of that.

My big brother Simon came to visit, bringing his youngest son, Christopher with him.

My sister Jenny rang me and we had a really good long chat – I don’t think we’ve had the chance to catch up with each other’s news since before Christmas.

Roger called too, and although I see more of Rog than my other two siblings, it’s always nice to get a call.

Zoe, my niece, was due to come to England today, but a fire in Wandsworth meant that all Eurostar trains have been cancelled until tomorrow evening, so Zoe can’t come. Boo – we’re all very disappointed not to see her.

(edited - suffice to say that it's often required a great deal of patience in dealing with the logistics of all the medical treatment - this has been a challenge for the family and the organisation of medical professionals alike)

My cousin Christopher came to visit me this weekend. He lives in Paris. Christopher is really lovely and when he plays with me we have loads of fun. On Friday, Christopher stayed the night and slept in my room on a mattress on the floor.

His Dad, Simon, took us out to a special place on Saturday – the Tower of London. It’s a dungeon and an old castle. They keep diamonds there. We saw diamonds and crowns and the movie when Queen Elizabeth was given her crown. I thought the crowns were really beautiful, but I wouldn’t like to wear them – they’re too girly! Well, some were the Kings’. They weren’t girly: they’d be much better to wear. We saw the Beefeaters too – they are the people who look after the ravens at the castle. I bought a candy stick in the shop – one for me and one for my sister, Alice.

On Sunday we went to a Chinese restaurant and ate dumplings. I liked the prawn dumplings most of all. Mum says we ate “Dim Sum”. After the restaurant, I went to my other cousin’s house. My other cousins are called, Ayesha, Mikhail and Iman. I played with Iman – she is eight. We played with her puppy DS.

St Patrick’s Day – top of the morning to you all. Saskia is in seventh heaven to be with her cousin Christopher. She is having a brilliant time and has been to the Tower of London today. I don’t know how much she got out of her visit culturally speaking, but she was very very chuffed to get her free entry with her Blue Peter badge! Alice had a good day too. Although she was initially very disappointed not to go with Saskia, she had some fantastic one on one time with me (plenty more of that to come once Saskia goes in to hospital) and has been a joy to be with. Imogen kept Dad company and still resolutely refuses to walk. She just doesn’t know what she’s missing (something of which we aching armed and backed parents are painfully aware!) just think how she can walk around the garden and get around the house when she becomes mobile on two feet rather than two buttocks.

Today started very early. George was up three times between midnight and 7am and Imogen woke up at 4:30am. Poor thing, she has a terrible cough and a bit of a temperature. We need to get that cleared up before Saskia goes in on Sunday: one thing we don’t want is Saskia starting chemotherapy with a chest infection in incubation…… Our new nanny, Kendall, started today. She’s going to be with us for three months to look after George in the mornings when I go in to look after Saskia and then to help out with the general afternoon mayhem. Kendall is from a small town called Boort in Australia. So far so good – the children managed not to scare her off after her first day.

I saw the first inkling of jealousy for George from Imogen today – she tried very hard to stop him feeding so that I would put him down and hug her instead. However, a cuddle from Daddy seemed to sort Imogen out and she did give George lots of kisses and cuddles before bed.

I'm actually getting somewhat concerned with all the colds various family members have, and the implications this may have for the start of the BMT process. I'm still(!) very congested and Imogen now has the same. Saskia's constantly snivelling too. For sure it's just a bunch of colds, but can we really set about nuking Saskia's immune system on Sunday with her family (including me who'll actually be with her) feeling under the weather? When we're in for the hickman line operation tomorrow, which is now being combined with a blood transfusion, we have a meeting with our Consultant so we can ask him. Maybe he'll put the whole family on a course of antibiotics? Or maybe he'll advise postponing the procedure by a week? That would be quite a blow after all the build up. Let's see.

Tomorrow is our first big day in the treatment cycle as Saskia goes in for her operation. Imogen will have her last blood test and we have our final appointment with Josu, the consultant, about the weeks ahead.

I am quite concerned that when they see our rather snotty family, they may delay the treatment. Stuart is still poorly and coughing a lot, Saskia is snotty and Imogen has a truly horrible cough and temperature. I don’t think they will be able to start if they can’t guarantee that the family will be well over the key first two weeks of treatment. We shall find out tomorrow.

We’ve had some really lovely emails from all the people we’ve let know about Saskia and this website. It really is so touching. I’m finding these last few days quite hard, I wish we could just get started. I think I’d even be happy if tomorrow the hospital said actually we’ll just keep Saskia in from now. For everything we do at the moment I find myself thinking, “ this is the last time for ages that Saskia will be able to…….” You can fill in the gaps, but it ranges from everything like having a bath or go swimming to visiting friends, seeing family, and eating certain foods.

As everything builds up to the big deadline I feel the pressure building up inside me and unfortunately this feeling just makes me blub every time anyone is even vaguely kind or sympathetic towards us about what is about to happen. It’s all very embarrassing – lots of tears in public and all that. However, I’m not really sad, Steve summed it up best of all in his email to us saying that we must be filled with both trepidation and hope. He’s absolutely right and what I must keep focusing on is the hope.

Saskia's now back at home after her operation today. I was at the hospital with her all day from 7.30am. The primary purpose of the operation was to put in a hickman line. This will probably stay in for around 4 months. The line will facilitate much easier administration of drugs and removal of blood samples of which there will be very many in the near future. The line can become infected if not treated carefully, so we have some skills to learn in handling it. Bathing for Saskia, for instance, is now not the trivial exercise it once was. The contraption is slightly bulky with it's three heads and valves, but Saskia seems mobile enough with it - I'm sure she'll come through like the trooper she always seems to be.

I found today's experience emotionally draining, and this evening I am exhausted. I felt fine taking Saskia down to the operating theatre at around lunchtime. They took us into an ante-room where Saskia was put in front of Shrek2 on TV prior to the administration of the anaesthetic. I joked that she's so undistractable whilst goggling that they should have just cracked on with the operation then and there and not bothered with the anaesthetic. Initially she seemed oblivious to what was going on, but when they tried to put a needle into one of her hands she certainly had a shaky moment. Of course this is totally OK, and might seem normal for a small child, but it's barely stretching the old adage to say that Saskia has been stuck with more needles than the average 5 year old has had hot dinners, and doctors and nurses constantly comment how unusually cool she is. She always insists on watching needles go in or blood coming out and usually chats throughout. So today, despite being cool in the chats before the operation, she was certainly nervous. From my own point of view I found it tough to watch her slip under from the gas they gave her. It happened more quickly than I had expected. I'm not sure what I had expected to say to her at the moment she drifted off. Leaving her in the room was tough: I wasn't quite choking back the tears, but anyway there're a long way down somewhere inside me after all that we've been through.

Despite also having had a blood transfusion in the afternoon, the great news is that Saskia is already back from hospital and acting as normal. We had expected Saskia to spend the night in hospital, but late in the afternoon we agreed with the doctors and nurses to take her home since she seemed to have come through the operation so well. We're going back tomorrow (after school! - hope that goes well, and the teachers are being very supportive) for the nurses to check the dressings.

Whilst we were in the hospital we met another family who were there for their daughter's bone marrow aspiration and liver biopsy. They're a couple of months behind us in the BMT process. Their daughter has Thalassaemia rather than DBA though the symptoms and treatment are very similar (blood transfusion, iron chelation and so on). It was lovely to chat to another family in a similar position to ourselves. Nat and I really took to them and they seemed to have a similar outlook to us on the whole process. It's really good not to feel so alone in experiencing what we're going through.

The other news of today regards George's feeding. Not only is Nat now expressing a little milk successfully, but George is drinking this milk and also some formula milk. This is good news for freeing up Nat slightly from feeding duties so she can visit Saskia in hospital more easily and also so she can get more sleep. Perhaps not so good for my sleep, though . . ?

We went to Serena’s Cowboy party today, Saskia and Alice had a fantastic time. Imogen ate the food and party animal George slept through the whole thing. I don’t think Saskia’s line is too sore any more, you should have seen that cowgirl limbo!

Later in the day Saskia had a lot of hair cut off today in preparation for losing it all. It looks so good I think I may book myself in for the same haircut later this week!

Saskia went in today. The room is not at all bad. It's not huge, but there is space for Saskia's hospital bed and another (pretty hard one) for a carer. There's a low table and a couple of chairs and a wardrobe for all our stuff. We've got our own en-suite bathroom too which is fine. The most striking feature once inside the room is the view. Being on the 7th floor the views are substantial. Immediately below the window is the recently rejuvenated canal, the whole area around which has been subject to development for some time. The 24 hour car wash and the flyover aren't the most appealing to look at, but the new high-rise buildings and the general view make the outlook feel positive and this aspect adds enormously to the room. The room is accessed through a double door / small ante-chamber setup which allows entrants to don aprons and scrub up prior to going into the room itself.

With a combination of tablets and liquid medicines, Saskia got through 13 different drugs today: this is the sign of things to come.

There's still some concern over her general health since she has a cold, although she seems happy enough. She will be assessed tomorrow to see if we are to proceed with the transplant on the original schedule.

Hey, before we talk about the rather depressing BMT thing again/some more, let’s talk about me. I stood on the scales today for the first time since George was born. Since being 38 weeks pregnant and today I have lost around 22 lbs. Pretty neat, except I’d still like to lose another 22 (realistically, I’ll lose 18). If only I could do that again in just five weeks. Ah well, my target for what it’s worth is to be back at slim pre-pregnancy weight by my birthday.

Back on the hospital front it has finally has all started. I had a manic morning cleaning and packing up Saskia’s things. Poor Stuart feels dreadful – no not man flu - he really is ill, so I felt very much like the driving force behind everything. Still I got everything done and we took Saskia in at 2pm – all her stuff wiped down and packed in a gazillion plastic bags (also wiped down). Alice played with her in her room and not much else happened before I left at around 5pm. Nice for the girls to have a final play together. I don’t think Alice gets that Saskia just won’t be home for several weeks. I managed not to cry, but only just.

Still it gets sort of easier now. Before Saskia was in I was thinking about everything all the stress, missing Saskia, seeing her feeling miserable and ill – the whole lot. Now I can focus on the task in hand and getting through this day by day instead.

Anyway, took advantage of the clock change and not feeling tired too early so tidied the house from top to bottom once I got home and put the kids to bed. Finally went to bed around midnight – the lesson for the day: keeping busy helps, but going to bed late means you wake up tired! (Especially when your baby wakes three times between 12 and 6 am!)

Saskia and I both slept pretty well, though I'm still not feeling 100%. I woke up with sore eyes and a dry throat. It's difficult to know whether this is a cold, or the vicious air conditioning in the room. The room is designed to operate as a positive pressure environment. It's not entirely air tight, but nearly. Purified air from a special circuit is pumped into the room to give it a pressure slightly above normal. It's possible to stand outside the door of the room and feel the constant outflow of air. This ensures that no airborne bugs enter the room. It does mean that the room itself is quite a dry environment, and we need to make sure that Saskia and others staying in the room are kept topped up with fluids. It's also slightly noisy due to the constant rush of air. It's not too intrusive; it's like the sound in a aeroplane, though quieter than this. I was reminded of this similarity by another: the call alarms for the nurses have the same 3-tone bing-bong-bung as a typical airport tannoy. These can be frequent though seem to be concentrated very much at certain times of day, most notably in the early morning.

Saskia has been very well entertained so far. The promised 2-times-a-day visits from the hospital school have already started. The teacher assessed Saskia today to best identify what to go through with her during her stay. Further visits from the play specialist, the dietitian, doctors and nurses seemed to make it quite a busy day, and Saskia was far from being bored at any stage. In a quieter moment, we did squeeze in a couple of episodes of the Blue Planet, which I'm pleased to say Saskia is really enjoying since it's decent adult entertainment too. We took delivery of the laptop from the school too. It has internet access, though I'm not yet able to update the website from there since I don't have the right software or FTP access. I'll chat with the school IT specialist later in the week, though if it's too tricky to set this up safely then I'll just update the website every couple of days from home. It's seriously handy to have internet access in the room though. We have not resorted to using it as an entertainment / educational tool in our short stay so far, but it could fill many weeks whilst in that small room.

In the early afternoon, I saw the error of my ways today and called dad in as a substitute for my bit of the rota until I start feeling a bit better. I'm really feeling pretty unwell, and I should not be near the isolation room when I'm like this. I'll hopefully get back into hospital on Wednesday, but we'll have to see. I'm so thankful for my parents being able to support me and my family like this. I'm quite upset about being ill right now - I can hardly think of more unfortunate timing. With Nat breastfeeding and juggling the many balls of home-life as only a domestic goddess like she can, it's a real time for me to step up and take charge of the hospital side of things.

Apologies that Saskia has not yet replied to many of the large number of supportive eMails which you've sent. Hopefully if I get back into hospital on Wednesday we can crack on with some replies - Saskia has genuinely appreciated the messages of support.

Ah - perhaps a final comment on the BMT side of things since this is what's important! Saskia had many more drugs during the day whilst I was there and after I left she was due to start taking her first dose of the main chemo drug. Having being given the go-ahead from the various tests (and one x-ray), we've now started in earnest. As predicted, Saskia feels absolutely fine so far. There will be darker days to come.

Woke up this morning with the alarm going off and Alice asking, “Mummy, where’s Saskia?” This really will take some time to sink in for Alice, and Imogen too is probably missing Saskia, but can’t articulate it. Imogen’s vocabulary is largely limited to “this”, and “yum yum”. However, this morning she progressed from saying “bo” for bowl to “bowl” and “o” for off is now “off”. If you ask Imogen to walk though, she says “no” or rather shakes her head. March is fast passing and she still won’t take any steps although I suspect she is more than capable of balancing.

I’ll let Stuart tell you about the hospital as he has spent the most time there. I went in this morning straight after the school run and Saskia seemed really chipper. Stuart, sadly, did not. He’s still not better. I jogged home – phew. I am unfit, overweight and recovering from a knee injury. If I’m ever to pick up my hockey stick again I have a very long way to go. Still, as George manages to go longer between feeds I should be able to lengthen my jog home and get a little fitter.

It’s good to see Saskia so happy, so far. I feel fine. My overwhelming feeling though is guilt. Like most mothers, I am convinced (wrongly) that I am the only one who can really care for my little girl the best. After all, up until now I have felt in charge of running her medical care. I feel incredibly guilty not to be in there with her more. I must remember that I am doing a very important job by staying home and keeping the children together and having everything sorted for the rest of the family.

I managed two visits to hospital today. Saskia is still very perky and there’s plenty to entertain her. From 10 – 11 she has lessons, then the play specialist comes in for an hour, then Saskia has lunch, then she has more lessons and then, if she’s lucky she has more time with Flora the play specialist. Things don’t start winding down ‘til about 4pm for her. All this is interspersed with the odd medical check here and there. Apart from the usual plethora of medication not much happened today, Saskia had a chest x-ray and a blood transfusion to keep her topped up. Saskia is therefore coping well – long may things continue like this.

Thanks for all your lovely emails. We’re still not able to access them at the hospital (Stuart is on the case) but I will print them all out and take them to Saskia tomorrow as she really wants to hear from everyone and all the messages and cards make her face light up.

Alice spoke to Saskia on the phone today – that made Alice’s face light up. She really misses her sister. We all miss her.

I am in a hospital room. It is quite big. I am not allowed out of the room. I miss my friends and my family. Please reply. I have to take lots of medicines every day, but I feel fine. The food is almost as good as mummy's. I have decorated my room with all my get well messages. It looks colourful.

It makes me happy to read all the words. I'm going to make a ladybird with Flora, the play specialist, now to decorate the room some more. There is still plenty of space on the walls.

I feel that my day today qualifies me for the title of “Martyr to the Cause”. I shall lay out my activities and would draw your attention to the timings – not only did I start early in the day, but my efforts have been regular and constant throughout the past 22.5 hours. I know on occasion I did draw on the resources of my husband, but I believe it will further his application which I believe he is also justified to make under separate cover.

5:30 am woken by Imogen, played with Imogen in bed once Stuart had gone to get her

8:00 am prepared stuff to take in to hospital for Saskia, briefed Nanny on the day

12:15 fed the baby and expressed milk ready for tomorrow fed the baby some more when he said he was still hungry

13:15 out for lunch with Stuart, lent sympathetic ear to his illness (he REALLY is ill and no I’m not being sarcastic) worked out a plan B (or maybe actually plan Q things have changed so many times) as Stuart is unlikely to be able to go to hospital until Monday at the earliest

14:00 went back to hospital via Sainsbury’s to find clean plastic tubs in which to put “clean” food for Saskia (no tubs in shop)

16:40 WAKE UP baby (amazing- the two feeds at lunchtime did the trick), feed baby

17:30 give Alice and Imogen supper (expertly cooked by Kendall, but with ingredients bought be me)

20:00 – 22:00 cook fish pie and chicken casserole to put in the freezer in individual portions for Saskia

This is getting silly. I still can't get back in to the hospital since I am not well enough. I was prescribed some antibiotics yesterday and I am going to have some blood tests this morning. I feel extremely tired despite lots of sleep, have a horrid cough, have a funny taste in my mouth, and am very thirsty. Hope it's just some virus. The worst thing about it is the nasty hole I feel in my stomach when I think about not being able to be with Saskia. My illness is putting Nat and my parents under quite a bit of extra strain - I am useless at home too as I am finding it very difficult to concentrate on anything. After building up to the BMT for years now, I am upset not to be there. Am trying to focus on getting better, but nothing seems to be working so far.

No blog yesterday, I went to bed at 8:30pm and a good thing that I did, Alice and Imogen were inexplicably awake from 2am until 4am! So much for me catching up on some sleep last night.

Things have stepped up a gear at the hospital and the doctor warned me this morning that the next 36 hours will be pretty intensive. Saskia has started a new chemotherapy drug which needs loads of other medicines to combat its side effects. One of these is that Saskia must go to the loo at least once every two hours. It is therefore bedpan-tastic at the moment. The stuff we are handling is potentially really nasty and we now have to wear gloves when dealing with it for our own safety!

Saskia is, as you would expect, being remarkably stoic and although I think she is really tired (they wake her at midnight to take medicines) she is still lovely to be with. She did have a bit of a wobble earlier today when I got a bit cross with her for not concentrating in her lesson. I think it showed that although she is her usual bubbly self she is feeling the strain of all the treatment. Although we do explain a fair bit to her, it must be incredibly bewildering for her. It’s pretty bewildering for us to be honest. The protocol for Saskia’s treatment is pages and pages in length and it seems that no medication is less than four syllables long. For me it is like my recurring nightmare that I have to sit my chemistry finals again as so many of the words sound like chemicals that I once had to draw, or synthesise in the labs.

I am feeling really tired. Until Stuart is able to go in to the hospital though I really want Saskia to see me twice a day. When Stuart is back on duty I can do mornings and he can cover any afternoon visits when his marvellous parents are in. Anyway, for those of you who have phoned me, that is why I am not answering the phone, I’m just incredibly busy and in this tired state, any kindness is likely to be met by tears. This is not only not very conducive to a good conversation, it is also quite misleading as so far things are going as well as we could hope.

I am getting lots more medicines today, they go in through my Hickman line which I call my "wiggly". I get to choose which colour end of my wiggly the medicine goes in. The nurses are coming and going a lot. I am fine, but still really tired. This morning I made shiny stickers with Grandma and window stickers with Mummy. The window stickers are of spiders, flowers and a big ladybird. I have ladybirds all over my trousers today - no, not really ones! That would be too tickly.
I found a puppet show kit today. I will send you the film of the show I am making up with me moving the puppets soon (when Mummy brings in her camera)

31st March (Mum)

Saskia is in Horsepital today. Well not exactly, but the drug she gets today is the big one that will knock out what's left of her immune system. It derives from a horse and, if wikipedia is to be believed, it may come from just one horse from South America called "Volcano". Apparently there is a rabbit version of the drug too, but I'm glad she doesn't get that one as I can't think of a single bunny pun to go with it whereas I could say that today Saskia is under the "horsepices" of the isolation ward or that things are trotting along. But neigh that would be all too painful! (None of this is an April fool by the way although I know Stuart sometimes wishes my sense of humour wasn't for real).

[ED: I am concerned the strain is beginning to get to the wife!]

Okay, moving on. I am writing this in hospital. For the first time since I have been coming and going, Saskia is asleep during the day. She has received loads of drugs in preparation for the horse ALG and they have knocked her out. She looks so peaceful as she sleeps, I'm sure that over the next few days as the drugs she receives are pretty nasty this is the best way for her to be.

Back at home Alice is party girl. She is off to parties this afternoon, tomorrow afternoon and next Saturday as well. She is very excited and I have had to stop her putting on her party clothes since about 7am this morning. George is going from strength to strength although he still has sticky eyes. Even though we are washing them regularly with sterile water we just can't seem to shift the gunk permanently. Imogen STILL isn't walking. Stuart jokes that we will get 5 years' use out of the double pram at this rate! Stuart seems sort of better in that he isn't coughing quite so much, but he still looks pasty and is not really himself. I'm hoping he'll be better by Monday, but I'm not holding my breath.

Today I finally persuaded Saskia to reply to some of the messages she has been receiving - they all mean so much to her. You should see her face light up when I tell her that she has another new message waiting for her. She's been quite distracted this first week though and now I think she will feel too rough to do any writing for a few days. Perhaps after Easter I might get her back to the keyboard. Right now all I am concerned about for Saskia is making sure she is as comfortable as possible.

1st April (Mum)

The peaceful look on Saskia's sleeping face that I saw this morning did nothing to give away the terrible night that she has just had. She was sick four times and up for most of the night with a high temperature. Poor Grandad had to even change his own sheets twice she vomited so violently. My poor brave Saskia. So much for all the horse jokes - looks like we fell at the fence.

Apparently the reaction to the drug lessens with each day. Saskia is so ill because the drug kills off her immune system. As there is less of the immune system to kill off so the nasty side effects will weaken. In fact by Tuesday again Saskia may feel fine. The next downturn will be towards the end of the week when she might get bleeding gums and mouth ulcers as well as stomach cramps and diarrhoea.

Now also is the time that we need to be mega-ultra careful about any exposure to bugs for Saskia which means that until Stuart really is 100% better he can't come in. I'm sure he and Saskia are missing each other terribly.

Still, I read an article http://news.bbc.co.uk/1/hi/health/6455191.stm about the first BMT patient from Great Ormond Street Hospital who had his transplant 25 years ago. He says he can't remember a thing about the treatment, that's a bit of a morale booster for me especially when he says that he now is absolutely fine.

At home, we visited the new gorilla enclosure at London Zoo today http://news.bbc.co.uk/1/hi/sci/tech/6499593.stm. We liked it very much, but I'm not so sure the gorillas are big fans, we saw one charge quite aggressively at the viewing windows. Alice had a great time, we saw the keepers hiding food for the tigers and then watched the tigers sniffing around their enclosure for their meat. Imogen was sort of interested in the animals, but, hooray, she asked to get out of her pram and walk around for a large chunk of the visit. Don't get too excited, she did need to hold my hand all the way round, but it is a step in the right direction.

2^nd April (Mum)

Another tough night for Saskia. As predicted, it wasn't quite as bad as the night before. She was sick again and in the morning she vomited up all her medications, so she has to take them twice. If she is sick again she will have to have a tube in her nose and they will feed the medicines down through that. At some point in the treatment it is inevitable that Saskia will have to have the tube, but I hope she keeps her medications down today. Just as seeing the Hickman line made it all feel so real, so looking at Saskia with a tube across her face will again reinforce the fact that she is ill and receiving some intensive treatment. I kind of like living in denial. So many times I have been grateful that Saskia's condition is not one that is immediately visible and we can often behave as if though nothing is wrong.

Alice had a real tizzy this morning. So far she has been really, really good and seems to be enjoying being the oldest child at home. However, this morning she stayed downstairs screaming at Stuart and I for a good 15 minutes because we wouldn't turn on a third light downstairs. From memory I would say that I never even thought to behave like that when I was a kid. (I think once I stamped my foot and asked to go to school and I also remember an episode about wanting red dungarees - two events which set out my future - a girly swot with no fashion sense). Being such a goody two shoes means that I can't even begin to imagine what's going through Alice's head and that makes her behaviour that little bit harder to deal with.

George seems going for the world record of "how much can I eat in one day?". Stuart is again slightly better today but still congested and coughing. Imogen is still cute and is currently trying to master the art of winking. We are bound to get into her bad books this afternoon when we take her in for blood tests ahead of her operation on Wednesday.

Wednesday promises to be quite a full on day as Imogen will be in from 7:30 am and will have to stay overnight, so we need to co-ordinate hospital care for Saskia and Imogen while still looking after Alice and George at home. Thank heavens we have Stuart's parents and a nanny to rely on on days like these. I will be glad when the operation is over and I know my little blondie is okay and we will be waiting for good stuff to grow in Saskia rather than spending our time trying to kill off something inside her. Of course things will still be rough for Saskia for a few weeks yet, but this next stage will bring a change in mentality for me.

3^rd April (Mum)

Saskia seems better today. She is a bit perkier, but still has difficulty keeping down her medicines and is hardly eating. Oh yes and she has diarrhoea. Amazing that all this can be going on and I am saying this is a better day. Most of concern to me today though is to learn that her high temperature is related to an infection in her line. We have to hope that the antibiotics work on it otherwise I believe we have to take the line out and put in another. No one at the hospital seems unduly concerned yet - we were warned that things like this were bound to happen and if things got serious they would let us know. I am therefore pretty sanguine so far.

As for me, I'm tired. I think the effects of waking up several times in the night to feed George are setting in. Charles looks tired too. Saskia has been up several times in the night for the past three nights and it's no fun to watch a little child throwing up or pleading with you not to have to take her medicines because they make her sick. Saskia doesn't plead with the doctors though, she negotiates: "I think what it would be best to do is to stop giving me medicines and see how I go just in case I don't need to take them any more". I guess that shows that Saskia only thinks of medicines as something that would make her feel better.

It's a big day tomorrow. One of my concerns is the time of Imogen's operation - she is an absolute monster when she is hungry (like her Mum) and isn't allowed to eat or drink on the day of the operation. We could have quite a hard time with her until she goes under the anaesthetic. Stuart has kindly volunteered to look after Imogen (who may be in until Thursday morning); Margaret will be with Saskia. I will be all over the place, but do plan to capitalise on having a relatively quiet house and get some sleep during the day.

By the way, I found a great website that explains in general terms the steps of a bone marrow transplant. Have a look if you have the time.

http://www.ucsfhealth.org/childrens/medical_services/cancer/bmt/process.html

Tomorrow for us is day 0 the day of the transplant.