Saskia Journal

We at last have a little more clarity on the roadmap ahead. Nat has described it in detail in her blog. The summary is that we are hopeful we'll have the Hickman line out by mid-August and just after than spend 6 weeks weaning off the Ciclosporin. Then back to school. Now, we are again in a danger period, we are told, with respect to the possibility of graft-v-host disease. But if we get through as I've outlined it will have been a remarkable journey and a quicker return to school, the benchmark we're really using for this thing being "over", than we ever hoped. Wishing time away is never a positive feature in life, but I really can't wait to get back to more normality.

Here we are on the eve of day 100. We've waited - well - a hundred days for this and now it's here it's all a bit of an anti-climax. Because of our dust exposure we are still visiting the hospital pretty often, we are on 9 doses of medicine a day and Saskia still has no hair to speak of. Still it does feel good to have got this far relatively hiccup free. We are now waiting for yet more landmark dates - day 120 to feel fairly clear of Graft vs Host Disease and day 135 to get the line out. So much patience is still required, but knowing we have made it through 100 days makes me sure we can battle on through the next important stage and on to Saskia's return to school.

Saskia is brilliantly well, although she does have a snotty nose right now. She does actually have fuzz growing all over her head and I know this is a good thing for her. Just yesterday she was talking with great excitement about needing clips again and then bunches and then a ponytail and then a hair cut! We went to Legoland ahead of the holiday rush on Tuesday which Saskia greatly enjoyed. She's not one for big rollercoasters though. Imogen is even less of a white knuckle ride freak. We went on a hot air balloon mini ferris wheel together and within seconds of moving off Imogen was saying "no, no, not this, no, up and down, up and down, hossey hossey" which translated means, "I hate this, I want to get down and ride on the horses on the carousel". However, no sooner had the horses set off than Imogen told us just what she thought of that ride too. "No, no, not this, up and down, up and down, no, no, no". I don't think that needs a translation. The park was thankfully pretty empty and we had a good day. I imagine on a hot busy day it would be worse that a day in an isolation ward undergoing a BMT. Well, maybe not quite that bad, but close.

It's now the holidays and I am wildly jealous of all my friends who are off to sunnier climes for the summer break. As I see the holidays stretch away ahead of us, I am desperately thinking of fun outdoors things to do away from crowded tourist attractions. Indoor touristy places are completely out of the question too. All this means that we will have to be super structured at home to have plenty of fun activities and stop the girls from wanting to kill each other. Curiously, our trip to hospital tomorrow seems almost like a pleasant diversion. Anyway, if you see us in a few weeks' time, expect our house to be full of beautiful artistic creations, and if we seem fatter, it's because we have had a baking session or twenty to pass the time.

The lack of recent posts is simply because we have not much to tell. We are still waiting for those third chimerism test results and generally keeping our fingers crossed that Saskia stays well. Excitingly, Saskia does appear to be growing some hair, but it is patchy and I rather suspect that when we stop the voriconazole and increase the cyclosporin dose again the hair growth will once again be stunted. We are making the most of the good weather when it lasts, playing a lot in the back garden. Sadly one of our best friends in the garden, Anna, is off to Italy for a few weeks tomorrow, and the girls will really miss her - they play with her at least every other day. However, we will have Anna's fish to look after (please, please, let me manage to keep the gold fish alive*) and feed and Saskia and Alice have also befriended another boy, John in the back garden who is a matter of weeks older than Saskia. I don't think the girls' social life will suffer too much over the holidays and I am organising as many play dates as I can with our friends before/after their exotic holidays. Actually, I am quite excited as I also booked a holiday today. Nothing flash, just a week's self-catering near Oxford at the end of August. We chose Oxford for two reasons: 1. We can get back to the hospital in an hour or so. 2. Should we ever leave London, Oxford is one of the places we would strongly consider moving to. So look at that, we are able not only to make short term plans, but also long term plans too which must be a good thing.

*Confessions of an undergraduate: when I was 21, I looked after two gold fish for my flatmate, Barbara, and they met a really untimely death. One was eaten whole by a next door neighbour (a long story, we took our revenge by drawing lipstick goldfish all over his car). The other fish died from shock after it had flapped all over the floor when I dropped and smashed the fish tank. Needless to say, I cycled across town to buy replacements. The only trouble was that, post replacement , the bigger one was the shape of the previously smaller one and vice versa. Barbara never even noticed!

And what do you know? We are back in hospital again for the weekend at least. Saskia had a high temperature this afternoon and was very tired, so I took her in. There's nothing obviously wrong with her, but clearly she has some sort of bug. Consequently, we have sent samples off to all and sundry to try and identify what is going on with Sas and meanwhile we are giving her a wide range of antibiotics and anti-viral drugs. Saskia's temperature was even in the 39s late this afternoon and of course it is a worry, but as much as they can be, things are in hand and Saskia is being carefully watched by the medical staff. It's funny, I knew Saskia would get infections and have to go back in to hospital, I just didn't realise that she'd seem so well on them. Each time she has had to be re-admitted she has seemed pretty much okay, but with something ever so slightly not-quite-right about her. I had that feeling this morning when Saskia said she was tired and didn't want much breakfast. Still it took me until this afternoon to be sure something was amiss. I think I'll be even more aware for next time, although I hope there won't be one. On the positive side of being re-admitted to hospital, if the source of the infection turns out to be something in Saskia's Hickman line, there is a chance it will be taken sooner rather than later. I'm not telling Saskia that as she is desperate to have the line out, but what a birthday present it would be for her to be finally tubeless!

Saskia was readmitted to hospital yesterday with a high temperature and general symptoms of an infection. She's off her food and very tired. She'll be in for at least three days whilst she receives some powerful anti-biotics intravenously and the doctors run lots of tests. I've found this quite a blow since we had started to feel we were out of the woods. But overall I suppose I'm still quite upbeat. In fact there is a small chance that if the doctors decide it may be a line infection we may get the Hickman Line out early. My Dad dropped everything and came up immediately to look after Saskia in hospital. He and my mother have been just wonderful in during the whole time, and they have made life considerably less unpleasant for Nat and I. So it's not going to be much of a fun weekend for me, which is nasty since I'm working pretty hard at the moment. My main concern though, of course, is Saskia.

10 days feels like a lot more than just twice 5 when you are faced with having to spend most of that time in a tiny, cramped, stuffy and dull ward cubicle. I have to say that we are all pretty grumpy about having to have Saskia stay in hospital again. To make things worse this morning we were told it was until Friday at least, this evening after a chance meeting with our consultant it transpires that it is more likely to be 10 days. Saskia has an infection in her line - in fact in all three of the lines that go to make up the main line. This is not great news. We are still waiting for the microbiology report to tell us exactly what the bug is and what antibiotic is best to treat it. We have to get rid of it before Saskia can go home as her immune system is not capable of fighting the bug by itself so the infection is potentially quite dangerous for Saskia. On the plus side, the doctors may decide that the best way to get rid of a bug in the line is to get rid of the line itself. That would be great and would probably sweeten the stay for Saskia if she knew the line was coming out. It is horrible to see your child with a tube sticking out of her body, and freaky, not to mention pretty terrifying, thinking that that tube connects straight to their jugular vein. We are very restricted in what we can do while Saskia has the line in: bath time in particular is a real pain as we have to keep the line dry and when it dangles down at around belly button height, that's pretty hard (if you actually want to clean any part of your body with water - the whole point of bath time, or is it playing with rubber ducks?). Where was I before bath time? Oh yes, the line. The trouble is Saskia also needs a lot of blood tests over the next few days - to establish the right cyclosporin level (see Blog 4th July), to check for infections, and we need to access Saskia's veins to deliver her antibiotics intravenously. So, if the line comes out, Saskia's time in hospital will be less comfortable as she will have to have a cannula in one of her veins and there will most definitely be some needle action going on.

Luckily, as Saskia has been so well, she was allowed home this afternoon which greatly improved the day. She spent the afternoon wearing a friend's pair of rollerblades and skating on the grass in the back garden. Tomorrow if she's allowed out I will take her coasting down the pavement. She desperately wants a pair of rollerblades for her birthday but I am reluctant to buy any for her unless I can be sure that she will actually skate on them, not be terrified, and not keep falling over. We shall see. 10 days until Saskia's birthday - let's hope she's out of hospital for that.

Things rather took a turn for the worse, not least emotionally, this past week. Saskia being readmitted, with what turned out to be a line infection, was a blow. I rushed out of work at lunchtime today to go to the hospital where Saskia had just gone into the operating theatre to have her Hickman line removed. This is three weeks earlier than planned but since it was infected in all three lines it had to come out. It was the third time this year that I've joined Saskia in the recovery room after an operation in which she received general anaesthetic. She seemed to recover even better this time. By this evening she was cheerful and chatty and nearly beating me at our "Sardines" memory game. Nearly. There's life in the old block yet.

It's a delight to have the line out. It's possible that Saskia might be home on Friday after some more antibiotics, though I won't be surprised if she has to stay in hospital after that. She'll have a cannula in for the rest of her stay in hospital. Subsequent visits for blood tests will be longer and more hassle since without the Hickman Line the doctors and nurses will have stick needles into Saskia. She's had loads and loads of these over the years in her numerous trips to hospital, but it's certainly more work than just taking blood from the Hickman Line. However, having this line out feels like a real step forward to me, and this feeling almost more than offsets the negative feelings I have with her being in hospital again for a whole week.

There's nothing more to say at the moment other than to mention that some none-too-impressive red blood cell counts came back and we're worried about that too, but it might just be the extra drugs or the infection which knocked the counts. Who knows, eh? It's the uncertainty which is the worst.

25th July (Mum)

Well here's the plan. Saskia's line was taken out today. We hope that two days of further antibiotics will be enough to clear the infection now that its source has been removed. That means Saskia would be home by Friday HOORAY!!! But as the light at the end of our current tunnel appears in the distance, so another problem is here. Saskia's haemoglobin level is really quite low and, for someone who is technically anaemic, her red blood cell production to make up for this seems a bit slow as well. We HOPE that this is down to the infection and the antibiotics, but we are concerned. Unfortunately, it is all we can do to keep our fingers crossed and hope. This is the first time I have been really concerned about Saskia's red blood cell production. After all, this is what the whole awful procedure has been about. Just writing about my worries now makes me feel sick. No one at the hospital is panicking yet, but no one has said really, it's not a worry, don't be concerned. I can't write about how I'd feel if we went back to Saskia being back at square one again, it's all too upsetting. All this is a stark reminder that we are a long way from being in the clear. The infection is not definitely gone, just because Saskia's line is out, and although Saskia's Bone Marrow Transplant has only gone well to date, we cannot yet say "it's a success, it's all over". Of course, I am more prone to pessimism at the moment following the stresses of the last week. I am finding it very hard though that, because nothing here changes instantly, we are forced to wait and wait for results, and more results and while we wait all we can do is brew. As always....more news as we get it.

Saskia's blood production is doing better, although the alleged 24 hour jump from 8.1 to 9.8 is unlikely. No one, not even a Tour de France cyclist, makes that much blood in a day. The doctors really are not concerned about Saskia's counts, especially as Saskia's third chimerism test result came back again saying that the bone marrow at work was all Imogen's. So long term, we can be pretty sure that Saskia's bone marrow will not return. In a week or so, provided nothing crops up between now and then, we can be almost as sure that Saskia is unlikely to get Graft vs Host disease. Short term, we will confirm tomorrow if Saskia can go home tomorrow night. There is an outside chance she may have to stay for two or three days longer. Then next week we will be in fairly often to confirm Saskia's cyclosporin and haemoglobin levels are looking good. If that goes ok, we are virtually on the home straight. We could be weaning Saskia off the cyclosporin in as little as three weeks.

So how do I feel? This whole thing has really taken its toll on Stuart and me. Day to day we have masses of support, in that we have a cleaner and a nanny and the most amazing grandparents four little children could hope for. Emotionally though, I've had it. I feel that I as an individual have dropped off the radar while I have been working harder than ever to keep everything together and everyone happy. In many ways the hardest time is after we came home from hospital. We have had to deal with having children cooped up at home, unable to do many activities because either they, or their sister is immuno-suppressed. The family is often split with us taking one set or the other somewhere because of this. The children have found it really hard to gel as they might have were things otherwise.

Saskia has had to deal with being at home, being educated at home, being bald, not seeing her friends, not being normal, taking a plethora of revolting tasting medicines, being severely restricted in so many activities because of the drugs, or her line, and then she's had to deal with the emotional seesaw of getting masses of parental attention on tap when she is in hospital and an awful lot less when she is at home. Alice has had to deal with being the oldest in the family sometimes and then having to be second to Saskia. Alice also has to deal with how she feels when I am away in hospital visiting Saskia (and therefore not spending time with her). Imogen has to deal with me just being away a lot running around after Saskia and her hospital appointments, me running around after Alice and her school run and after school activities and me trying to breastfeed George every three to four hours. It doesn't leave Imogen much of a look in, especially when I still need to keep the house running and get food on the table for everyone.

In amongst all of this I feel Stuart and I are lost. We are dealing with all this while constantly having the nagging, dragging worry about Saskia and her health. Sorry if I seem self-pitying and please don't take offence those of you who are still finding time to read this blog (that's just one of my gripes, I know many people barely check in these days, my siblings included), but when we were in hospital we were so buoyed by the emails of support we got. Once we were home most of these messages just vanished. The messages and calls we get these days are even more precious to us because although we are not watching poor Saskia feeling absolutely terrible on a daily basis, things feel even harder. Stuart and I have been struggling on, trying to keep life normal, Stuart going back to work while always being worried about things at home, trying to keep the positive momentum. It's very, very hard to keep going when you feel you are in a vacuum and when you are just so emotionally drained. So please, please, please let us hit the home straight without further mishaps because I feel the only thing that will drag us over the finish line at the moment is the fact that it is in sight.

Saskia did not make it out of hospital on Friday night as hoped but although she is still officially an in-patient she stayed at home last night. She had 8 nights in hospital. Saskia has visits to hospital this morning and again this evening to get more intravenous antibiotics and then the cannula will come out and Saskia will be properly at home. The cannula goes in the inside of her elbow and her arm is on a splint to make sure she does not bend it, so having this out will be a relief too.

And then? Certainly I'll be somewhat happier than I have been for the past week. Saskia will still be on 4 drugs, one of which is only on Mondays, Wednesdays and Fridays. We hope to start weaning off these from mid-August. We have a consultant appointment on 8th August which will, I hope, really herald the start of the end. If all goes to plan Saskia will be on only a couple of drugs by the end of September, one of which she will be on indefinitely, and hence be allowed back to school. I'd love to get her back a week or two before the October half-term break just to ease her back into it. Saskia's hair is starting to grow. She's still clearly bald to any observer, but there's a fuzziness which is just starting. Go hair, go!

We are cake-tastic in the house, Saskia's birthday was last Thursday, her uncle's today and Imogen's is tomorrow. There is a real air of celebration and happiness in the house (except when I conviscated a number of Saskia's birthday presents for bad behaviour - I'm SO mean). It's been great to enjoy the good weather, especially with Saskia's line out, we have been splashing around in the paddling pool and generally having a great time in the back garden. We're still knackered, it's still hard work, but all in all things feel good. Long may this continue.

It's Imogen's second birthday today. Saskia was 6 a few days ago. Hooray! Any reader wanting to see the world's best ever blog post should see Nat's home front blog for Saskia's birthday day.

It really feels like we might be getting onto a whole different stage of life now. Nat and I have become fixated with Saskia's return to school as the big symbolic date. I'm exhausted. Work's really pressing on me and demanding my full attention. Did I mention that I got promoted to Managing Director of a major US investment bank in the middle of all this?

Hopefully we'll meet with the consultant this Wednesday to discuss the immediate future, though we got a call tonight that the appointment scheduling had got screwed up. Unbelievably this happens every time and is symptomatic of a general theme, and illustrates well just why I am desperate to get out of the need to involve Saskia in ongoing medical care.

Interestingly, I am becoming aware that the challenges of this current stage are in some ways more insidious that before. As life moves to a stage where Diamond Blackfan Anaemia is perhaps no longer the dominating factor, there is a need to refocus, redirect and remotivate one's actions. I am aware of this, and I know that is the first part of the battle. Fingers crossed that this is indeed the next battle to be fought.

"Happy birthday to you, happy birthday to you, happy birthday dear Imogen, happy birthday to you."

I am not joking. Imogen completely associates birthday with cake. She even cried yesterday morning when I stopped her playing with a toy cake she was sharing with Special Bow Wow so Imogen would come upstairs for breakfast. I think she thought I had stopped her birthday party. When it actually came to eating the cake though, all Imogen managed was the head of the panda and a smartie. Her sisters managed a small bite of cake, demanded an arm and a leg EACH (of the panda of course) and left most of them sticking out of the remainder of their slice so it looked as though the panda was drowning in a pool of chocolate cake quicksand. Even so, when Dad got home yesterday, the first thing Imi said as she dragged Dad into the kitchen to where the cake had been was (with finger pointed at her mouth) "Panda, cake, yum yum".

Cake asides, Imogen also enjoys pretending to be a dog or a cat, crawling on all fours and coming up to us saying woof, woof or miaow and picking up things with her mouth and generally behaving like a pet for long periods of time. Also, dancing is a big activity for Imogen: she finds one of her many, many musical toys and spins around in circles until she gets dizzy, falls over, and then stands up grinning broadly with the words "ooh, dizzy".

Back in the world of things medical, we are chasing up the hospital about our famous appointment on 8th August. When I rang to check the time of the appointment apparently "computer says, no". If I picked up the fag ends of Stuart's telephone conversation with the hospital correctly, the computer says "October" which is not enormously helpful. Of course we will see the doctor long before then, but I thought I would mention this to all who are reading this to show how frustrating it can be to keep the logistics of Saskia's treatment on track sometimes. Still, if it all gets too much, I can always comfort eat. There is still panda torso and cake to be had!

I hope I have not put too much stock in our appointment with the hospital tomorrow afternoon. Somehow I have convinced myself that we will hear about the beginning of the end of all this. There are two problems with this. The first is, that the consultant may not tell us we can start weaning Saskia off the cyclosporin. The second is that the weaning process may be a difficult process in itself with its own stresses and strains. I simply do not know. I am therefore going to bed tonight telling myself to be prepared for not good news. That way, at very least, I will not be disappointed...... (however, because I can't quite hide all my optimism, I do also have a bottle of bubbly on ice just in case).

I feel like a toddler on a long and winding car journey. Every time I say, "are we nearly there yet?" the doctors say, "yes, yes just one more corner". Actually, I drove my parents mad asking if we were nearly there and became quite inventive (or so I thought) with my questions. "Would you say that we've been driving for about half the journey?" was one I was particularly proud of as I believed that, whatever the answer, I could roughly calculate how long it would take us to reach our destination. The trouble was that any fraction of an eternity was an eternity. So it is with our BMT journey. I have asked in as many different ways that I can think of whether we are nearly there (and even threatened to vomit out of the window - figuratively speaking). Today we were told that the final bend on this journey is one last test result (the fourth chimerism test result) which will again confirm that it is all Imi's bone marrow at work. Given our first three results were excellent, we can be fairly confident to receive a similar result fourth time around. Once that result is through (in a maximum of three weeks) we can begin weaning Saskia off the cyclosporin. The weaning takes six weeks. True to long journeys though, there is just one last corner after the last bend on the trip. Weaning Saskia off the cyclosporin may trigger either Graft vs Host Disease or her body to reject the new bone marrow. We have been told that the chances of this happening are "rare". However, I like to keep it real and will be watching out for any nasty signs of this happening just in case. Then, curiously, as soon as Saskia is off the cyclosporin that's pretty much it. With any luck Saskia will make it back to school in October just before half term. If she catches a bug we leave her body to deal with the infection. We will only need to go to hospital once every three months instead of our current three times a week (just about to go down to twice). Saskia will only have to take just one medicine. We will probably have hospital withdrawal symptoms. Bring on those fourth chimerism results! The cold turkey of no medical appointments is way more appealing than Christmas leftovers.

The doctors drove us round the bend today (see blog 8/8/07) We are allowed to begin weaning!

In fact weaning is the watchword of the day. The doctors rang as I was just warming up some milk to mix with George's first taste of baby rice. All I can say is that I hope Saskia's weaning goes as well as George's. The boy LOVED his first solids (well, slightly runny baby rice). He was grabbing the spoon, sticking it in his mouth, sucking voraciously and cried when the food stopped. All this is in stark contrast to Saskia's first taste of solids:

Yes, Saskia's mouth is remaining firmly shut. Yes, Saskia ended up wearing most of her food rather than eating it. Yes, that is a medicine spoon we are using. I am sure there was a legitimate reason for bringing it out - probably that Saskia had indignantly knocked all the other spoons out of our hands and onto the floor because she hated the solids so much. Luckily for Saskia this weaning process means working towards no medicine spoons at all.

Although the chances are that we are on the home straight, this period is potentially a difficult one. Taking Saskia off the drugs that stop her body rejecting the new marrow means that she may start rejecting the marrow. Such an occurrence, we have been told, is "rare". However, in the name of touching wood and superstition and all that we will be keeping the champagne on ice. After all, we may now only have to wait 6 weeks to drink it!

Does it feel good that Saskia's fourth chimerism test came back within two days? That the test result was the best possible result? That we're now already beginning the process of weaning Saskia off the Ciclosporin? Oh boy, it certainly does. This means we're in the home stretch. There are dangers, but if things go well Saskia could be back to school before the end of September. Fantastic. That would exceed our best prior expectation.

Without boring you with any further waffle, I'll commend to you Nat's excellent blog for further details, or better still just sit back and enjoy the new photo gallery I just put together. What a great family I have!

14th August (Mum)

First words:

Saskia: Tissue (I have high hopes for the cleanliness of her cupboards)

Alice: Shoes (I will be keeping a close eye on the contents of Alice's cupboards)

Imogen: Yum Yum (I will shortly be putting locks on the kitchen cupboards)

That's about it for firsts. I never wrote down when first teeth grew, when the children first sat unaided, when they first spoke. I only know exactly when Imogen started walking and Saskia lost her first tooth because both landmarks are buried at the bottom of this blog. Ask me, however, about Saskia's haemoglobin, her neutrophils, her urea, creatinine, ALT, ALP and numerous other medical numbers and more often than not I know them all. I almost need to know them. When we were going in to hospital three times a week, I felt slightly uneasy on the days we did not go in because I would not find out about Saskia's levels. Yesterday though a weird thing happened. I missed the doctor's call and the message they left was that Saskia's blood results were all fine. On any day previous to this I would have rung back to get the exact numbers, but I stopped myself. Why? Because I am going to have to get used to not knowing all these things about Saskia and just taking for granted that if she seems fine, she probably is fine. I am going to have to get used to being normal. It's all Stuart and I have wanted for the past 6 years but it's been so long coming (and not quite here yet I have to remind myself) that it's something I will have to get used to. We all will.

August 22nd (Mum)

(To be read in a Geordie accent)
Day 140
9:19pm
Most of the children are asleep downstairs, Natalie is in the living room. She is watching the football (2-1 to Germany).

Boring, I know, but no less boring than Big Brother, or say watching paint dry, or as we are currently doing: watching hair grow.

(you can drop the accent now, if you ever put one on and apologies to anyone out there who has not watched Big Brother and hasn't a clue what I'm talking about)

Saskia is no longer completely bald. Her hair has started growing back "properly". It is so short that day to day we can see the growth. Soon we will not have to put sun tan lotion on Saskia's head when we go out. Stuart and I have both washed her hair. There are just two small patches (the last places where the hair fell out) that are still pretty bald. It makes a huge difference to us to see Saskia with even a tiny bit of hair, but that's nothing compared with how Saskia herself feels. When I showed Saskia the back of her head using the two mirror trick, she jumped up and down with excitement to see the dark shadow that was there. While Saskia has undergone this treatment, she has definitely moved towards girly things, pink stuff, skirts and dresses, sparkly outfits, that sort of thing. Her best birthday present (apart from the rollerblades) was some pink nail varnish. I believe all this has been a reaction to having no hair. Although Saskia has not really complained once about how she looks, her reaction at seeing even a tiny bit of fuzz made it clear to me that she has really hated being bald. It's not surprising really, all round the house we have beautiful pictures of Saskia with her thick long brown hair in various styles. Still it won't be long before she can sport an "Audrey Hepburn".

We have spent the past three days at my Mum's house. The weather has been miserable and so we could not take full advantage of her amazing garden.

Nevertheless we did swim in her pool (no, not the pond pictured above, a real pool) until our lips had turned blue. Again, it was a joy to take all the children swimming. Pretty much all Imogen has said for the past three days is "Nemo" "Dimming". Nemo for the fish that is on the front of her swimming nappies, dimming because I have not yet started her elocution lessons. As North London parent I may feel a need to look into them soon. Saskia has not been able to swim for about five months now since her line was put in and also because of the infection risk at public pools. She absolutely adored being in the water again and was always the last one out, giving me cause for concern when she shivered for about 10 minutes after being dry and dressed, but competitive corridor running with Alice soon warmed her up. George did not go in, but did get very excited watching us splashing around.

Tomorrow is our first day in hospital for 10 days. Amazing. It feels weird to have gone so long without some blood test or the other. If the doctors think Saskia is well enough (and she seems amazingly well to me) we will be able to take another step down in the cyclosporin dose. Here's hoping that as of tomorrow we have just five more weeks of immunosuppressant drugs to go. I feel like we are a hair's breadth away.

School has started and life is a lot easier at home. It's not only having one less child at home that makes it easier to cope: Saskia is only in hospital for about an hour a week at the moment, George is sitting up and eating solids (and therefore I am breastfeeding less) and Imogen is much better at talking and expressing herself (and so tends to get to do what she wants a little quicker). Saskia and Alice are getting much more independent and can play for ages without adult intervention and both of them are really good at getting dressed/cleaning teeth/tidying up etc. All these little things generally make life easier. I still feel pretty busy though as I am trying very hard to keep Saskia up to speed with her schoolwork. It's hard. I had completely underestimated how much working in a group keeps you motivated. I shouldn't be surprised really, I find it much easier to work in the office than when I am alone at home. It's so easy to distract yourself with other "tasks" before knuckling down. When I was revising at university I even managed to convince myself that polishing the doorknobs with brasso was a pressing issue! I do, however, like to claim that my Desmond was not down to excessive cleaning, but rather because I was making the most of the rich opportunities that University had to offer. So with Saskia, I am learning to be pleased with as much as Saskia does and trying not to be too stressed when she doesn't knuckle down straight away and gets distracted. I am sure she will catch up where she is behind, and seeing her friends working at school will keep her going too. It's only three weeks away (fingers crossed, touch wood, etc.) that Saskia will be back in the classroom, so she is not going to miss masses. Well she is going to miss 3 masses given she is at a Catholic school, but I'm talking quantities, not religious ceremonies. I think actually that the social aspect of things will be harder for Saskia than any academic challenges that are thrown her way. She has been really relatively secluded and molly coddled and, frankly, spoiled for the past few months. It's unavoidable, she has been very ill, she has had to be alone a lot and she has been to hell and back and I wouldn't change a thing about the way she has been treated. Still, I think that going back to school will not be the end of this story and we will have a few weeks more of challenges ahead until Saskia is fully reintegrated into normal life.

Two weeks of weaning left to go now. There have been no signs of the dreaded graft-v-host disease in the past month and I'm now feeling that we're nearly out of the danger zone. So close. So close. And yet rather than feeling that elation is only just a few moments away I simply feel fed up and exhausted by the whole thing. If we do get through there's no big fanfare, just the return to what others see as the norm. Combined with that is a rather different feeling of being so very happy and proud of Nat and the kids. Confused. Perhaps things will seem more resolved once I feel we're more home and dry. Perhaps I've been denying myself hope for so long in case things go wrong that accepting that we might just have sailed through the whole thing at the top end of expectations is just going to be tough. I wish I could take the time out and get some perspective and celebrate. This is far from possible with work being quite tough at the moment, and I suffer from the typical work/life balance tightrope that I guess is common to most of us these days. The basic point for the time being is, as ever, to focus on where I am, i.e. where she is: Saskia might be back to school in a 2 weeks from now, and that is the metric by which I had always imagined judging the success of this whole thing, to get Saskia into normality.

I can smell the end now, and my optimism is now rising to a level where I've nearly completely discounted the danger of Saskia now showing signs of the dreaded graft-v-host disease. The chances are high that she will be going back to school this Thursday. Nat and I are really marking this day as the "end". In reality there is a slow transition from an incredibly sick, frail girl lying in bed in an isolation room and a child whose energy, enthusiasm and sheer charisma any parent would be jealous of. I'll sign off now - no sense in running a victory lap before crossing the final tape, even if this tape is somewhat arbitrarily drawn. Now put that mouse down and join me in the crossing of fingers.

And my mummy wrote a note for me it said to tooth fairy my Grandad lives near Brighton please go and visit him love Saskia.

And in the morning I saw some money not just money it had stickers star ones and on both sides.

It's 8am and I am at home. Today, I shall not be going into work. Today, I shall we taking my little Saskia and my little Alice into school, and I shall be striding through those doors like a king.

Today's all about having a special day off, drinking a champagne brunch and establishing some emotional closure. First day of the rest of my life and all that. I am SOOOOO happy.

Today's return to school is 6 months after Saskia was first admitted into the isolation room on 25th March. This date set us into motion.

A further 10 days after that was the "transplant" itself, the infusion of bone marrow.

Hospital protocol dictated that ciclosporin (to suppress the immune system hence reducing the chances of graft versus host disease) was given for a minimum of 4 and a half months post-transplant.

As everything went perfectly, protocol dictated a minimum of 6 further weeks weaning off the ciclosporin. Coming completely off the ciclosporin yesterday marked the end of time when Saskia was prohibited from being in enclosed spaces with large groups, i.e. she can go back to school. Today is that day. Saskia has come through this in minimum possible time. Though there have been ups and downs, for example being readmitted to hospital as an in-patient 3 times since her initial discharge, the process could not have "ended" a single day sooner relative to her start date. Basically, she aced it.

Really worth checking out is the great photo gallery Nat has put together which briefly shows Saskia's birth -> now.

It's been quite a experience this past 6 months. In fact the past 6 years since my little 11 week old daughter was described as having "a haemoglobin level nearly incompatible with life" has been quite a trip. This website has been a great trip too, or at least I mean it has played an important part for me. It's clearly been a highly efficient medium for information dissemination and helped everyone feel they were still in touch without having to bug us through the difficult times. Just as crucial for Nat and I has actually been the cathartic value of just dumping emotions and situations in writing and putting it all out there like we were screaming it. It's over now. Maybe one day the woman Saskia will find it a curious read. It's a strange heirloom, I guess, of much more value to the givers than the receiver, but I hope what's written here will in some way help us to respect the fading memories of what has happened.

The only thing which remains is to try to fulfil my urge to write something of a thank you list. In my mind I'm thinking of it more as a Hall Of Fame. Heroes from the past 6 years without which this whole thing would have been much tougher of maybe even impossible.

It's strange that the doctor who initially diagnosed Saskia in A&E all those years ago turned out to be running the Bone Marrow Transplant Unit at St Mary's Hospital by the time we were ready for it. Josu De La Fuente's impressive rise in his field is hardly a surprise to me having seen him in action. An incredibly diligent and professional consultant, he's been the person in whom we have always relied and trusted to take us through the transplant and prior work-up. The care he takes in his role is astounding. Also, we really found we were able to make a connection with him to understand what was going on. He offered us just the right level of information throughout and consistently kept us appraised of information and risks. Very impressive, and I would thoroughly recommend him to anyone. Josu has now taken over as the UK's top DBA doctor, since Dr Sarah Ball has decided to step down. Sarah has also been very good to us through the whole process, and Nat and I became very fond of her warm and intelligent style. The time Sarah took to see us in extra clinics and her frequent appearances at DBA conferences are very much appreciated and we will miss her.

Another doctor to warmly thank is Mohammed Taranissi, one of Britain's leading fertility doctors. He not only took us under his wing in sending us off to Chicago for two rounds of IVF and PGD (which unfortunately failed) but was the battering ram in eventually getting some ill-informed laws changed in the UK which mean that our third (and successful) round of IVF legally took place in our own city.

I've got to mention Michelle and Jayson Whittaker too. Jayson was the man who put DBA and the "saviour sibling" issue in the press with loads of newspaper articles and even a 2-part series on BBC1. It was he who showed us the way to Mr T and to Chicago. His son had a successful bone marrow transplant a few years before Saskia and it was Jayson's model we copied and Jayson's enthusiasm and energy which helped carry us through. He'd set about to do anything possible to get his son cured and nothing was going to stop him. I also really appreciated his many years as chairman of DBA UK. Jayson, I must buy you a beer some time.

On a very personal level I've got to say that my mum and dad have been amazing throughout. This has been most notable during this year when they have spent a huge amount of time supporting my family, both in hospital and at home. Guys, I love you and thank you so much for being fantastic. My dad has made a perfect recovery from his heart bypass operation in January. Now if he could only get serious about dieting. . .

But the person who for me has been the most outstanding of them all is Nat. I don't know how I managed it, but I ended up marrying the most wonderful person I've ever met. Her strength, resilience and persistence throughout has carried us through. She is the only person in the whole process without who we might not have made it. Words fail me.

Please don't be offended if you haven't been named. Nancy, the world's hardest working nurse, suddenly springs to mind - she's been a real rock to us so many times. And of course all the other nurses in St Mary's hospital who've helped us through as outpatients and during the transplant itself (you know who you are!) Oh! And all the crew at Johns and Lizzies too. And of course all the teachers at St Christina's, not to mention so so many of the pupils and their parents. And everyone else. We've had so much support from family and friends over the past 6 years, and we so appreciate how fortunate we have been after that small bit of misfortune 6 years ago. Thank you, thank you all so much.

4th November 2007 (Mum)

Just over one month in to "normal" life and it's time for me to sign off too for the time being. Things are great. Really, really good. Saskia breezed back into school life as if though she had never been away. For all my fears about how things would go academically, Saskia is easily level with her peers. She has rebuilt her old friendships and forged new ones. She has been elected by her classmates to be the school council rep. If that's not a golden return to school, I don't know what is. Healthwise, apart from a snotty nose, Saskia has been full of energy and really well. From being the most tired in the family, she is often the first of the children to wake up and is full of beans when we put her to bed. All the rest of the family are really well too. George is crawling, albeit only a tiny bit, but he is definitely on the move. Amazing to think that somewhere at the bottom of this blog, we were waiting for Imogen to get up and go! George is also enormous, he is wearing clothes that Imogen wore only five months ago.

Since we stopped cyclosporin, we have been making the most of our newfound ability to mix with groups and travel. We have been on holiday to Spain and last night we had a fireworks party. With Saskia only on a simple syringe of medicine once in the morning and once in the evening, I feel more able to go out in the evening instead of staying to plug Saskia into her machine or give her five medicines a night. I'm making the most of what little is left of my maternity leave. I may even start "gyming it" a bit more regularly.

All this goes to show that we are thinking of the future in positive terms. We are making plans. We are making the most of the present. We will never forget this little parcel of the past. How could we? It's been super tough, but we are so grateful that we can say without a shadow of a doubt, "we made the right decision". Stuart has managed a long list of thank yous with which I concur, but I will also add a thank you to Stuart and again everyone who followed our story so closely and let us know how much you cared. We might have done all this without you, but I'm not sure we would have made it through in such good shape.

I have really enjoyed writing this blog, but for now, I will not publish the minutiae of my daily life on the www. I have bought a paper diary (how very retro) and shall enjoy writing about our wonderful life in there.

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I've returned to this website to tidy it up and put it in a good state for us and others to see in posterity. I started with the blogs above which used to be separate threads. By putting them all together I think it gives a much better impression of how we felt at the time. It's still pretty moving for me to read through what we wrote back then. I've found myself with a lot more time on my hand, having been made redundant from my City job. I am not alone - it's a bloodbath out there, and the chance of getting similar employment in the short term is vanishingly small. More importantly, Saskia is extremely well. She looks great. She's very healthy and happy. She's doing well at school. The family unit is functioning well. Nat's great too. We'll never be rid of DBA or its past or possible future effects on our family. All we can do is our best, and so far so good on that front.

To get some perspective on this rather long blog (and well done for making it to the end!) it's good to check out the Overview page.