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The BLOG part3
<RETURN TO PART 2 OF THE BLOG>
Friday 27th April (Dad)
Sensational news: I am at home and Saskia is sleeping in her bedroom here in the house! I can't quite believe it. She's on a "trial night at home" and not officially discharged from hospital yet, but if hospital appointments and tests go well tomorrow and on Monday then she may be officially discharged then. This is unusually soon to be released from hospital in the extreme and indicates just how well Saskia has done so far. It's less than five weeks since Saskia went into her isolation room. Please, if you're reading this as a person with DBA or as a parent with a child with DBA then do not expect this kind of time frame to be the norm.
It's great to have Saskia home. It is particularly touching to see Saskia and Alice together. They were inseparable from the moment Saskia got home.
If we do get the official discharge on Monday we will still have hospital visits at least twice a week. These will be checking important things like whether Saskia's new bone morrow is actually working. Whilst we do have good indications that her new immune system is in its infancy, there is still no evidence (nor would we expect any yet) that the marrow is making platelets or red cells, the latter being the whole point of this process. Saskia is still extremely immuno-deficient and we need to be very careful with her diet and possible exposure to nasty bacteria, viruses and fungi. We have been told to not be surprised if we experience issues requiring Saskia to be readmitted to hospital. Saskia is on five drugs at the moment, all taken orally, some of which are taken multiple times a day. In total she is taking medicine eleven times a day. If everything goes well this quantity will reduce over time. We hope we don't have the drug-taking issues which have been a big problem for the past few weeks.
Saturday 28th April (Dad)
Saskia's back home again after a a trip to hospital this morning and test results were good enough for her to be allowed to stay at home tonight too (although her neutrophils are below yesterday's already somewhat disappointing level). She is understandably delighted to be home and has been prone to bouts of irrepressible energy (although she has slept for a good deal of the afternoon).
I've drawn up a quick medicine sticker chart for Saskia to try to act as an encouragement, although so far she's been very good at getting the yucky stuff down her.
Although Saskia has been allowed home visits and may be discharged from hospital on Monday and we are delighted and extremely excited with her unusually fast progress, I'd like to point out again that it is not possible to judge the process a success at this stage and that there is still the potential for dangers to arise for Saskia. So please . . .
. . . REMEMBER (and this will be true for quite some time). . .
. . . The Fat Lady's Not Singing Yet--->
<---We
Are
Still In The Woods
. . . Nat Not Making Any Effort To Determine
The Number Of Poultry--->
Bah! I've just realised it should have been eggs in that picture and not chickens. Oh well.
Maybe when we get through this I need to get back to work?
Sunday 29th April (Dad)
No news as such today. Great to be back together as a family, though hard work with 4 of the little 'uns. The kids spent a lot of the day playing outside which is lovely to see.
Hospital tomorrow - we hope to get some good test results so Saskia can get a proper discharge.
And it's my sister's birthday: Happy Birthday, sister!
Monday 30th April (Dad)
It was Alice's 4th birthday today. She's being really sweet at the moment, and she's delighted Saskia is at home.
Regarding Saskia, the champagne we bought today has stayed in the fridge. Yes, she was formally discharged today and is at home after some satisfactory neutrophil count test results came back that indicate her immune system is just starting to come back, though she will be SEVERELY immuno-deficient (the underlined, bold capitals is how this phrase appears in her discharge notes) for quite some time. However, the 2 hour battle to get her to take 5 medicines tonight has left me utterly without cheer. It took both Nat and I to get her to take them in the end and every trick in the book and enough compromises here and there that I fear it could get worse. It's weird that when she does eventually take the medicines she seems to do it with so little fuss. I can't understand why the enormous initial resistance. I do feel it's just her trying to gain some control. Somehow I have to get her to want to do it for herself. The medicine chart was a hit for a few days but has lost its sparkle already, despite the glitter paint.
30th April (Mum)
Just after George was born, I had a recurring nightmare that somehow I got pregnant and had twins. All I could say to Stuart was "six kids! SIX kids!". Right now I am thinking, "four kids, FOUR kids!". It is delightful to have Saskia back, but as she would say "oh my", it is hard work and that is why I haven't updated this page for some time.
To be honest, it's wonderful but weird having Saskia back. In many respects, the moment she came home it was like she'd never been away. She walked through the front door, gave Alice the biggest hug ever, and then filled the house with her bubbly personality. However, Saskia couldn't sleep for her first night. Part of it must have been excitement (she did wake me at 3am asking if she could wake Alice up to play), but Saskia complained of weird noises and having to get used to the bed and house again. As well as being woken up by Saskia, I did also have to go and check on her a couple of times in the night. Rather like you do with a new baby, I am going to learn to have to chill out about Saskia. She can catch bugs really easily and I need to get a feel for how protective I need to be with her. It's just knowing that one of these bugs could seriously affect her that makes me so worried, but I think I will calm down over time and find the right level. Our morning routine is busy, but also a little odd because we have the whole medicine thing hanging over us. This morning, Stuart didn't manage to sit down for breakfast for a good 15 minutes because he was getting the medicines ready. I took Alice to school, but apparently getting Saskia to take the drugs took a lot longer than 15 minutes. Our cosy night time routine is also disrupted by medicine time as well. Things may improve in a fortnight or so as with any luck we may not have to give Saskia two of the really nasty tasting ones within a couple of weeks. By then, if all goes smoothly and Saskia stays at home, I'm hoping to have the routine licked in any case.
What all this has made me realise is that although the chemotherapy/BMT part is really nasty and scary, we now face a far larger challenge. We have to get back to normality and reassimilate Saskia into life at home. But we also have to get on with our lives while keeping Saskia stimulated, educated and safe from bugs without turning into agoraphobics, or being obsessed with cleanliness and disinfecting everything. Not forgetting that we have four children, not just Saskia. Speaking of which, HAPPY BIRTHDAY ALICE!!!!!!!! She is four today and gorgeous with it. The best birthday present for her? Having Saskia back - oh and the purple sparkly shoes.
2nd May (Mum)
Things are going pretty well here. Very slowly we seem to be making progress on the the medicines front. All the same it will take us all a very long time to get back to normal. We've all been through so much, particularly Saskia, and not surprisingly we all feel pretty different. Our old routine has gone to pot - new things are included, old favourites are missing. What is more we are still in a period of uncertainty. We are feeling our way to know what we can do with Saskia while being sensitive to her position, both mental and physical. Certainly we will have to help Saskia learn how to deal with the boredom at home when everyone is at school. It's all about striking that balance about entertaining her and helping her to find her own entertainment (that is not just playing on the computer or Nintendo). It will help when Saskia gets some tuition at home, but nevertheless she faces a lot of free time away from her peers that she/we will have to fill. I'm quite looking forward to some of it, but having to readjust to Saskia being at home makes me aware that we will have to readjust to Saskia going back to school, so I want to do things now that will ease that transition in the future. Alice is being amazingly good about having to go to school and being the only person to leave the house in the morning. EVERYONE else is at home (my grocery bill is enormous!) Imogen is absolutely loving being at home. George seems to be growing up fast and is reacting a lot more to the people around him. Saskia, particularly, is doting on the baby, but everyone wants to cuddle or pat him (not sure about Imogen's motivation - some of her "pats" are quite firm). Despite the ups and downs that are bound to occur in the near future, I'm sure happy family life will be restored sooner rather than later, but the champagne is still on ice (see Dad's blog).
3rd May (Mum)
A good day today. Saskia started a little slowly, but by the end of the day I think we were all feeling pretty positive. In the morning we took a trip to the shops (quiet empty ones). We bumped in to one of her school friend's Mums and it was interesting to see how Saskia reacted. Her first reaction was to touch her head. This made me think that Saskia is self-conscious about her new look, despite playing happily in our back garden with no head gear. Lunch at her favourite Sushi restaurant didn't go all that brilliantly either, Saskia didn't eat much, said she was sad that she couldn't eat her favourites and asked to go home after very little time. So at midday I was thinking that reintegrating Saskia into home life would be slow and very tentative. However, later in the afternoon Saskia was pleased to go and help collect Alice from school and seemed genuinely keen to see people she knew through the car window. It felt wonderful for me to have the familiar feel of both Alice and Saskia in the car together. Later in the afternoon, a friend of Saskia's came over to play for an hour. I was out, but apparently she had a whale of a time. Her friend didn't want to leave and Saskia was sad to see her go. I think Saskia has really missed the company of her peers. I'm sure things will still be up and down and Saskia will have good days and bad, fluctuating between being outgoing and shy, but things seem to be going in the right direction. I foresee many play dates ahead.
In the evening we went to see Spamalot with my sister - very, very silly, and an awful lot of fun. It's not just good for Saskia to get out!
Thursday 4th May (Dad) (written in between two separate trips to hospital today for Saskia and I)
I am shocked by the progress since last week. It is less than a week since I even knew that Saskia might be allowed a home visit let alone a full discharge, but now it feels that she has been home for ages. She is extremely well in herself and is becoming more physically active. She has seen other children (she is permitted one-on-one contact but not with groups of kids) and is loving that, and she has been out and about a little, albeit within the rules set out at the time of her discharge which will be in place for the next few months.
It's probably time for a bit of a recap and to say some general things I have been meaning to for a while.
Thanks, sincerely, for the wonderful support we've had over the past couple of months. We've had so many kind messages, help and food thrown in our direction that I have been quite unable to thank people directly as I should have. The support we have received from family and friends has made a big difference. This aspect of recent times I've actually found quite moving and given me food for thought. Thank you.
Saskia and the telephone just don't jive most of the time, so apologies from an embarrassed father who has had to explain to many of you that, despite her being well, Saskia just doesn't feel like speaking on the phone. Telephones seem to trigger a shy side Saskia. Please realise that she rarely agrees to speak even to even mum or dad unless we're face to face.
What now? For those of you who found my picture messages below either undecipherable nonsense or just thought them too crass and embarrassing to look at, it's important to point out that Saskia is not through this yet. Yes, she is out of hospital in double-quick time and is at home playing happily most of the time (or at least most of the time when her father isn't trying to persuade her to take her medicine). Yes, this is right at the top end of the expectations we had at the beginning of the process. However, although most of the risks and unpleasantness for Saskia might be behind us (no counting chickens, etc) we're actually quite early in the process in terms of time. So, I've written a new page which gives an overview of the entire process and where we are. The overview is extremely simplified but I hope it gives an idea of what is, was and is going to be going on.
Tuesday 8th May (Dad)
It been a great week for Saskia. She has seen a few friends for play-days and she's full of energy.
The medicine taking has been an absolute nightmare, but we've been keeping on track with taking them. We're hopeful that the drug which Saskia really hates may finish soon, though others will go for around 6 months (and penicillin much longer than this even). I am bearing the load of persuading, cajoling, encouraging and threatening Saskia to take these drugs and even from my perspective it's getting very tiring and I am completely fed up with it. I reckon it's taking about 3 hours per day at the moment! It's also distressing at times, especially when Saskia vomits or starts screaming. However, she does seem to be finding it slightly less of a chore in the last couple of days, so I am hopeful that Nat can take on the role of medicine giver as I prepare to get back to work.
Saskia has been back in hospital regularly for blood tests, general observations, dressing changes and blood transfusions. I'm in hospital right now with Saskia (I took the laptop and 3G datacard in - they don't mind) for a routine blood transfusion. When speaking to a doctor I mentioned that occasionally Saskia has been getting strong shivers and complaining of being very cold. I feel this may well be when she is actually cold (she has no hair after all) although she shivers are severe. The doctors have decided to keep Saskia in for observation overnight. This is a real pain for the family and not at all fun for Saskia. A friend who was coming to dinner tonight will have to come some other time. However, I'm telling myself that it's a good thing the doctors are being highly cautious. During this period immediately following the transplant there really is a high risk of infection and those possible infections can become dangerous very quickly. I know it's going to be be a long afternoon and evening, though . . .
Friday 11th May (Dad)
Last
night Saskia came home having been discharged for the second time. She was only
in hospital for 2 nights but it was utterly miserable, at least for me. We had
been told to expect readmission, but to be back in that room again so soon was
quite a shock and very demoralising following our quick-blast through the
process so far. The doctors are clearly concerned that the shivers Saskia was
having might indicate an infection, although nothing was detected during her
stay. She was given some intravenous antibiotic for 48 hours. I think the
discharge decision was a very close one, and may not have been made if we didn't
live 10 minutes walk from the hospital (this has been a wonderful coincidence).
We are watching Saskia very closely for shivers, high temperature or any odd
behaviour. It's wonderful to have her home again even though she did walk in the
door and throw up all over the kitchen after taking that nasty little white
medicine. Saskia and I really hope that one stops soon.
We're hoping to get the results of the chimerism test back soon. This test will tell us how much of Saskia's old bone marrow is working (none, we hope) and how much her new marrow is kicking in. Obviously this is an absolutely crucial test since getting the new bone marrow installed in sole operation was the whole point of the process.
Saturday 12th May (Dad)
Phew. We got through 2 weeks of medicine at home. What an effort it's been. I am totally fed up with it, and of course Saskia must be feeling much worse about it. The great news is that of the 5 original drugs (total of 11 times a day) we are now down to 3 (total of 7 times a day), and one of the drugs we have dropped was Saskia's least favourite. It sometimes made her throw up, which isn't ideal when you know you have to persuade her to take it again immediately. Anyhow we're onto a new medicine chart now. Saskia's still very unhappy taking the medicines, but I am hopeful she'll start to deal with it better with the reduced number.
12th May (Mum)
Gosh what a long time since I updated this page. I keep meaning to do so, but frankly, I'm knackered and for quite a few days was just too miserable to write anything. Having Saskia at home and trying to get her into our normal routine together with getting her to take her medicines had really taken it out of me. Control freak that I am, I like things neat, tidy and done in a timely fashion - I find not being in control exhausting, and we'd had a couple of episodes of visitors coming at our busiest times (supper/bath/bed). It may have only meant bedtime being an hour late, but that makes my precious hour or hour and a half of adult time evaporate. It's the only time I get to regroup during the day and without it I will eventually go to pieces. Then just when I thought I would get a clean run at knocking the family into shape and I could recover a little, Saskia goes back into hospital! Bizarrely that was actually great in one way. Everything at home immediately ran like clockwork. Alice and Imogen are brilliant at going to bed on time and settling really fast, as is George. However, it was very bad in another, more fundamental way - first it's an unsettling shock to have Saskia back in so fast, especially when she seemed so well. Also suddenly I'm running to and from hospital and not knowing for how long Saskia will be in or when she will be allowed home for a few hours. Once again, I was not really in control and having to organise simple things like changes of clothes and food for her and her Dad in hospital suddenly seemed like enormous tasks. Luckily there was an end in sight - Saskia was going to be in for just 48 hours. So when I went in on Thursday morning, expecting to hear at what time Saskia could come home again and the doctors said she might have to stay for another two or three days I just dissolved. I know it makes sense to be overcautious with Saskia and I am very happy that the doctors treat her so seriously, but boy I was upset. I just really feel a need to get our life underway for the next few months until, if things go well, Saskia is back at school and life is sort of back to normal.
Sunday 13th May (Dad)
Not much to report on the Saskia-front today. We still battling with those medicines.
Worth a mention, though, is Alice's birthday party which went well. Special mention goes to the fantastic cake which Nat made for the occasion. Hence all Nat's other wonderful cakes spring to mind.
13th May (Mum)
Now what a coincidence - did you see Eurovision song contest last night? I was watching as I made my latest creation for Alice's birthday party and just as I sat down to watch the fabulous Moldovan entry, I spotted the singer. I quite rate my cake making abilities, I didn't know I could sing too (some may say that's debatable. Terry Wogan's comment after seeing the Moldovan entry was something like "You can only hope her mother wasn't watching that". Still Moldova got a lot more points than the UK.............
Saskia's behaviour is still very challenging. It's really not surprising after all she/we have been through. I'm just not used to it - Saskia was, until now, the absolute angel of the family. I know how to approach the others when they are playing up, but this is something new in Saskia and knowing how to handle it given her circumstances is tricky. What do you do when suddenly Saskia complains of a really sore tummy - oh but it coincides exactly with teeth cleaning time? I did get cross, and made her clean her teeth (well Dad did) but I also had to check out her tummy. It's just hard to know just how hard to be on her. I've tried reading her Hilaire Belloc's "Matilda", I will dig out "The Boy who Cried Wolf", but I think the message is a little lost on her. I hope we're handling things right..... I guess if things don't improve, we'll know to explore other approaches.
Wednesday 16th May (Dad)
Saskia is still doing very well. I've been in to the hospital with her three times over the last two days but that was just for a routine check-up and to sort out a blockage in her Hickman Line. That worked out fine, and some of the test results we got back were great. Her neutrophil count is still showing a general increase which indicates her immune system is improving, though still at a low level. Her platelet count is also still showing a general increase. Both these test results indicate that there is bone marrow in there doing something, which is encouraging. Still no news on the chimerism test result (see below), although we hope these might come soon.
Chances are I'll be back at work in less that three weeks if Saskia continues on her current path of improvement. I am understandably apprehensive about this having been out for so long, but I've got to be honest that I'm actually looking forward to it. With me gone Nat's going to have a tough time at home despite the help we have. What's going to be tough for me is balancing home and work. This is as ever, but it's hardly a unique problem.
Thursday 17th May (Dad)
Nat and I are off to a wedding tomorrow, taking only little George with us. It will be great to get away, even just for one night. I need some space from what's been going on, and this is just the thing. My parents are looking after the three girls at our place. My folks have been fantastic throughout.
17th May (Mum)
I feel like we've made the first step towards rebuilding our lives this week. Saskia has been well at home and has managed to have her home lessons. All this despite a lot of visits to the hospital to unblock her line. There are still quite a few behavioural problems, but Saskia has been through so much, I'm trying to go easy on her without spoiling her. I think having some sense of routine will really help both Saskia and us. The medicine taking is definitely improving. Imogen is becoming scarily independent and insists on walking without holding my hand. Suddenly quick journeys now take five times as long if I let Imogen out of the pram. That's all very well now, but may not be so good once Stuart is back at work and I am having to rush around a bit more with Saskia's medical appointments.
Tuesday 22nd May (Dad)
97%. WOOT ! !
(see Nat's blog . . .)
22nd May (Mum)
It's just when he puts his thumb up at the end that it's so moving. Didn't you cry too? You know the film, that really, really moving film, a real weepy if ever you saw one. I'm talking about Terminator 2. How could you not shed a tear when Arnie dies? Just me then? Oh dear.
It's true, I really did cry when Arnie got melted down in that vat of boiling metal. Pathetic isn't it. So many people have had to endure my tears over the past months. I do apologise, not least of all to all those people who had to put up with me snivelling through a wedding reading this weekend. I really did try not to cry, but sometimes it just all gets too much for me. Well today, once again I was suppressing tears, but at last these were tears of joy. Those test results finally came back. If I understand things correctly the transplant has taken and although we can't say it's all been a success for a year really, we can at least say that the chances of it all being a success are pretty high. Nothing in the immediate future will change, Saskia still has to take her medicines and avoid crowds - any bug for Saskia is a really dangerous one - but slowly things should now start improving. For example, we can now hope that Saskia has had her last ever blood transfusion. If that is the case, it is the most amazing thing that has happened to us in the last five and three quarter years. For the first time really since Saskia was about 6 weeks old, I am not afraid to think of the future and make plans. Real plans, not just where will we go on holiday this year, but life plans. We still have a few difficult months ahead of us, and long term there will most likely be some really tricky times ahead but now the future seems a more welcoming place. I'm afraid to say though that even if Arnie never makes another film, I will still cry, but let's hope it'll be mostly at the movies.........
Thursday 24th May (Dad)
So where are we now? The first chimerism test result came back telling us that in all likelihood there is none of Saskia's old bone marrow in operation and the new stuff is probably doing fine so far. Saskia will now stop getting blood transfusions and we hope to see her making her own red cells, white cells and platelets. Great, but we're not there yet. There is another chimerism test in a couple of weeks time which I hope will confirm the result of the first. Also, it's still quite possible that Saskia will start to get graft-v-host disease. The onset of this can reasonable be expected any time up to 100 days after transplant in a case like hers where she received both bone marrow and cord blood from the donor. We're only half way through this period so far. Saskia does seem fantastically well, so to get GVHD now would be quite a blow. Saskia seems to have more energy now than she has ever had. She's always trying to race me down the street and she seems more physical in every way, despite still having the Hickman Line in.
I will be returning back to work at the end of next week.
25th May (Mum)
"Oh My" as Saskia would say. Saskia was really naughty today. She refused to do anything at all during her lesson and we ended up having to send the teacher away early. Saskia said she was too tired to write a sentence but had the energy to play on her DS (different finger movements apparently, judging from Saskia's miming). Consequently she was sent to bed for a rest (which she said she didn't need the second the teacher left) and told to stay there for 20 minutes. Then Dad and I had serious words with Saskia. I'm not sure who was angrier, but I even gave her lines to write: "I am sorry I did not work today", "I will always do my best for my teacher", "I will be very good for Mum and Dad". In hindsight it seems quite funny - the last sentence came back from Saskia with an extra "very" in it. However, it is worrying. Saskia quite often claims illness or similar symptoms to avoid doing things and it is really hard sometimes to know if she is playing up or not. So far she has been playing up almost every time she has claimed illness, but what if..........? She is still really at risk of falling pretty ill and we need to keep on our toes to be aware of that. Otherwise, we are just playing a waiting game, all we can do at the moment is wait: for results, for Saskia to stay well for 100 days, for the Doctors to let her come off her medicines and send her back to school. All we can do is try our best to keep Saskia well. It's all incredibly frustratingly slow. Still, I keep telling myself that for once although life is boring when it's easy, the boredom is actually desirable. Not a natural state of affairs for me, but perhaps one of the many things this whole ordeal will teach me is to have a bit of patience and to take pleasure from a slower pace of life. Hmmm, I like things busy. I think that is a big PERHAPS.
Monday 28th May (Dad)
The number of posts will drop as new news of Saskia gets more sporadic. I'll now tend to keep the overview page up to date rather than just droning on with details of what I had for breakfast. I had Shreddies this morning, by the way. I may blog occasionally. Perhaps when I have an Full English Breakfast, for example. I've also pared down the site a little.
I'm still going to keep the site up and running, probably until Saskia goes back to school. Then I'll mothball it for posterity and post to that effect so those of you who have kindly shown so much interest can get on with surfing other stuff instead.
2nd June (Mum)
Anyone who has been pregnant knows just how long a time 40 weeks is and would probably agree with me that after 40 weeks a strange time warp thing happens that makes each additional day more like an additional month. For me the last few weeks of pregnancy are just no fun. I know I eat too many pies and there is no one to blame but myself, but I have been huge every time and exhausted running around with the kids. My pet hate was taking them swimming where bending over to help them get changed is a nightmare and the icing on the cake is that I then parade my whale-like features to whoever else has to share the pool with us on that day (I did leave some water in the pool, I promise). Back to the point in hand - occasionally you can forget about it, like when you go to the cinema for a good old dose of escapism, only to be rudely awoken to reality when you turn sideways to squeeze through a gap and realise that you are slimmer front on than sideways. So it is with Saskia at the moment. I find I can forget about the medicines, that Saskia is incredibly vulnerable at the moment, that I have precious little time to myself (hence fewer blog entries) and that we have to nervously wait, wait, wait for that good old day 100 and beyond but then I catch a glimpse of Saskia's bald head, or the medicine chart, or her line hanging out from the bottom of her t-shirt and I am reminded that we still have such a long way to go. Still, so far things are going smoothly. Saskia is more and more her old self although I have realised that she won't really get back to complete normality until she is back at school. I think now that for those weeks preceding hospital and during the process that Saskia was constantly singled out as someone special with lots and lots of one on one attention. Now she has a good deal less of that and I think she misses it. When (ooh look, I said when - there's confidence for you) Saskia goes back to school she will no longer be the amazing girl who copes so well with her illness, she will just have to be amazing for herself. We all know she is, but we have to help her realise this also.
Tuesday 5th June (Dad)
I have returned to work. It's good to be back doing something again to take me away from the intensity of the whole BMT process and home life. I miss Nat and the kids a lot when I am at work. I'll be happier when I get back into the swing of working properly and when Saskia has returned to school. I really hope she can go back in October.
Saskia's red cell count is still showing no signs that she's making her own red blood cells. The doctors will talk about giving her another transfusion. This is probably nothing, but I am keen to see the results of their discussions and also the results of next week's blood count.
5th June (Mum)
A bit of a downer today, Saskia's red blood cell count is still dropping since her last transfusion. She is showing some of her old signs of tiredness and I fear we may have to give her another transfusion. She is certainly dropping at the same speed as she did before the transplant. Test results due tomorrow or the day after should tell us if she has any reticulocytes (pre-cursors to red blood cells) knocking about in her blood stream. Previously her counts were consistently less than 20. I hope the results we get this week will show a higher number. However, although I am not happy with the current state of affairs I am not enormously worried (yet). We have been warned that:
1. In any BMT the red blood cell count is the last thing to come up.
2. In a transplant involving cord blood, things happen slower than they would if Saskia had received only bone marrow.
Additionally those test results did say that it was Imogen's bone marrow at work and last time I looked at Imogen she was looking fine and rosy. All we can do is hope that her big sister follows suit.
6th June (Mum)
So it's kind of good news. Saskia's reticulocyte count is 158. First of all that's a number higher than she has ever achieved before in her life. Second it means she is definitely making red blood cells. So Saskia's low haemoglobin count is probably just the level that she will be at while she is on the immunosuppressive medicine. Just to be on the safe side, we will screen for a few viruses that cause blood counts to fall when we are in next week. Otherwise Saskia has had a great day she worked really hard for her teacher and has been bouncing all around the garden on her bouncy-hopper as well as negotiating a few home made obstacle courses that we made involving hoops, skipping ropes and balls of various sizes. Really, even with her low blood count she is more full of energy than I would have expected. We're still not quite on top of keeping the cyclosporin levels right for Saskia, gradually we keep increasing the dose. We'll just have to hope we keep on top of this well enough to keep the Graft vs Host disease at bay.
13th June (Mum)
Much as it is hard work to have Saskia at home all day, sometimes it can be an absolute joy. Just now Saskia logged on to her own website (I assumed to play with her penguin or CBeebies), but then she called out - come and look, it's my cheese. We duly went to the computer to see that Saskia had magnified the front page picture of her and zoomed in on: her cheese. I have no idea what goes through her mind sometimes, but she certainly does make me laugh. Medically, we have not much to report. Saskia's red blood cell count is still dropping, but at a slower rate than last week. We will still not give her a transfusion and will just sit things out to see where things level out. Several of the drugs Saskia has to take do suppress the blood manufacture, so we are expecting a lower level than you would see in a normal healthy child. Just to be on the safe side, we will stop taking this drug and revert to the rather unpleasant inhalant drug Saskia took before (only once every three weeks, but it is REALLY nasty) Provided things level out for us, we can expect Saskia to reach normal levels once she is off some of the medication. Despite her low levels, she is still full of energy and is often the first one awake in the household every morning. Next week we will get the second chimerism test result which will confirm how much of the donor marrow is working and if there is any more of Saskia's marrow at work (which we hope is not the case). Given the first result, we hope to receive a pretty similar result next week. We'll also be asking about timescales - our next milestone really is to talk about taking out Saskia's line. This will probably not be imminent, but it will be nice to have a rough date to work towards assuming we continue along the same recovery curve. Back at home 2007 continues on the same curve, our boiler broke and in doing so flooded Saskia's bedroom, soaking her bed and badly staining the wall and ceiling. Saskia's biggest concern was that her signed Blue Peter photo was not damaged and she is delighted to be sharing a room with her sisters tonight! I am of course not delighted to have the additional tasks of getting the boiler and decoration fixed. That'll teach me to ever complain of being bored at home!
24th June (Mum)
Just tonight as Saskia said she didn't want to take her last medicine I got cross with her for putting it off and making me so fed up with her all the time. She said she felt sick, and I knew that on this occasion it was true. What can I do? I can't ever say - don't worry we'll have a night off. If I do that, Saskia will always be angling to not take one medication or the other. Bless her, Saskia said that "for you Mummy" she would take the medicine. She gagged as she put the medicine to her lips, forced it down and within 20 seconds vomited it up. Poor little thing. All I could do was offer her a glass of water and then tell her to clean her teeth and go to bed (I did read her a bedtime story). What sort of a person forces their child to do something that they know will make them vomit and in such a mean way? It makes me feel like such a horrible, horrible person.
Meanwhile, I am a mother of four and I have to look after all the children and be as fair handed with them as I possibly can. I feel I have to balance all the one on one time I give to Saskia with one on one time with each of the others. This is partly because I want to have quality time with all the children, but also because I don't want Saskia to be too spoilt. You may say, ah but she's been through so much, and this is true. But every time I give Saskia a concession she capitalises on it and it makes her behaviour worse, our battles more frequent and the knock on effects for the other children are only negative.
Aaaaaaaarggh, I just want this bit over, it is SO slow, it is SO painful, it is just SO exhausting. When people talk to me, I try to be positive and (realistically) optimistic. I don't complain. I believe this well help us through. But in reality, let there be no doubt in anyone's mind. No matter how good things are for us in absolute or relative terms this whole experience is absolutely crap.
25th June (Mum)
Day 82 post transplant and we are really suffering with the addition of a new medication that Saskia must take. She has no new symptoms, but an unfortunate encounter with some unsupervised building works at the hospital means that Saskia must take a dreaded anti-fungal drug for a month! The first anti-fungal drug was so bad that Saskia preferred to have a tube stuck down her nose into her stomach to be able to take it - and it still made her throw up. The second, which is marginally less effective, but apparently extremely expensive, made Saskia throw up too, but slightly less. It was the medicine that made her home coming so hard because we would have to plead with Saskia for half an hour to an hour to take it. The doctors took pity on us and allowed us to stop the drug slightly earlier than we should have done. Now we are back on the same drug again. It's probably what made Saskia throw up yesterday and it is taking nearly all my child negotiating skills to get Saskia to take the medicine. I can't believe she is back on it for a whole month. I hope again that the doctors take pity on us and allow us to finish a little earlier than they originally suggested.
Saskia, horrid medicines apart, has had a great day. She had play date with her friend Tom, and tonight as she cleaned her teeth, she told me she wanted to go to Tom's house again tomorrow. Then as she tucked herself into bed she asked for another "great play date" really soon. I am so glad she is enjoying playing with her friends. She even doesn't seem to be too perturbed by a couple of comments we heard at school today about her hair (or lack of it) as we waited to meet Tom. Let's see how much Saskia asks for hats in the next few days and also if she is willing to hang around outside the school while waiting to take Alice home.
I am on my own for three days without any help at home. Today went okay - thank heavens my children are so sweet and well behaved. In some ways it is better not to have the temptation of being able to go out without the kids knowing that I will feel guilty for leaving them. By Wednesday though I know I will be itching to have some free time after 6 am and before 8.15 at night.
27th/28th June (Mum)
AAAAAAAAAAAAAAAAAAAAAAAAAAAAAARGHHHHHHHHHHHHHHHH. We are in hospital again through no fault of our own. I'm not going to point the finger (yet) until I have full details and understand exactly what is going on. Sorry to keep anyone who is reading this on tenterhooks. I will not know how serious things are, or what the outlook for the next week/months is until I have spoken at length with the doctors on their ward rounds this morning........
28th June (Mum)
So here is the story. Actually let's start with the most important thing. Saskia is fine, she is being closely monitored, but we expect her to be discharged tomorrow morning. Now, how did she get to hospital? Well, it all began with being put back on the anti-fungal drug because building works being done in the hospital were not being done carefully enough and Saskia had potentially been exposed to an aspergillus fungus that would prove very bad for her health if left untreated. The building error was not down to our doctors - they have no control over the builders' contracts at the hospital. Needless to say we were super super upset to be put through having to give Saskia an extra medicine. It is really hard work for both her and us. HOWEVER, it is not just the building works in isolation that have put Saskia back in hospital. It turns out that taking this particular anti-fungal drug (voriconazole) can, and often does, affect how the body absorbs cyclosporin (the drug that prevents rejection) and that it is recommended that if a patient is on cyclosporin and then is put on voriconazole, the cyclosporin dose should be lowered, or at very least monitored. Otherwise there is the danger the cyclosporin levels will shoot up, potentially damaging kidney function. This is what happened to Saskia and the problem was particularly acute because Saskia went almost a whole week before her cyclosporin levels were checked. There's no point in ranting on the web about what happened and who is responsible, but needless to say Stuart and I are beside ourselves with anger and disappointment that Saskia is needlessly in hospital through no fault of our own, but certainly through the fault of others. In the interests of this not happening again to us, or others, or in a situation where the damage is not reversible (Saskia's kidneys will be fine) we are talking to the hospital in detail about the episode.
The curious thing for me is that, although the situation is different, this has reflected for me a recent work incident involving a phone line and Blue Peter, again a chain of errors where several of us should have known better. It's just odd being on the receiving end of it all. It's certainly made me look at the work thing in a new light and has given me an interesting insight into our current medical situation and what I feel about the doctors involved. But, just as I keep telling myself to stop fretting about work (with not huge amounts of success), I will tell myself not to dwell forever on this situation beyond ensuring that we can keep Saskia well and out of hospital. I fully intend for her next stay to be for something that we all want - taking out her line.
Friday 29th June (Dad)
Well, it's been pretty real recently. The clear highlight for me was on Wednesday. I left work meeting at 6pm urgently after Nat called that Saskia had been taken into hospital with some blood test results that indicated she had compromised kidney function (she has small kidneys anyway so this is not good). Saskia and I were sent home from hospital around 9pm and I put her to bed. I was on a work conference call with some pretty big clients in New York at midnight when the phone rang telling us to go to the hospital urgently / can not wait / must put phone down. Got to hospital 20min later after embarrassing end to conversation and then the "urgent" blood tests took 1hr 30min to be taken. Got back on conference call to New York till 3am. Could not sleep with all the machines beeping beeping beeping....Nat relieves me early in morning....just get car out of space before traffic wardens swoop...take Alice to school....back to work. Not good. And I won't go into why Saskia was in hospital - check out Nat's blog for that. It's beyond me to bitch about the staggeringness of it all with my remaining energy levels. She was in for 2 days, back home today. Looks like there's no damage done. She's fine. She's great. Still freakish looking, makes more of an impact to us than her I guess. Getting a hairy face with the drugs which also still impede the hair growth on our head. She's amazing. So strong and lovely, but Nat and I ..... you try treading the tightrope of parental guidance and discipline with the shit that's gone on and....whatever....hopeful this might be over some day soon and all will dim in my mind but it's grinding grinding us and I so want to get out of this. When it's all gone I wonder if there will be a hole. Nat's amazing. Of course everyone knows that. She's great. It's been real but I do have high hopes for the future - there's nobody I know with a family as great as I've got. And I know that's down to me. And her. Where are we?
29th June (Mum)
Saskia is back home. Her cyclosporin levels are dropping and her kidney function is approaching normality. We are now having to go in to hospital very regularly to establish the right doses of her medications (this is where we should have been a week ago when we were first prescribed voriconazole). It's been a crappy old week, but at least Saskia is well, we are not in hospital and the long term picture remains the same. Our consultant appointment is on Wednesday so I hope to have a bit of a better idea of our action plan post day 100 assuming we get there with no further setbacks. It is two weeks until day 100........
3rd July (Mum)
Alice's class did a show for school assembly today. She and her class told us all their phonic sounds and then sang each song associated with the sound - ants on my arms a a a, snake is in the grass s s s and so on. It's hardly inspiring stuff as the songs are all to the same three tunes, but Alice did really well and was delighted to see me watching her. I had to watch from outside as Saskia also wanted to watch and she was looking through the Assembly hall window from the pavement. Three of her teachers came out to see her. At first Saskia was a little shy, but then I think she enjoyed the attention from her favourites - Mrs O' D. and Sister Angela. As we drove on to the hospital, she was full of smiles and said that the whole experience had been "fabulous". George is well once again, all through the weekend he had a temperature around 39 which was no fun and I got precious little rest during the night (being a boy, he showed no drop at all in his appetite). Now he's his usual wonderful smiley self which is great - I really missed the normal George when the sick one came to stay.
4th July (Mum)
What a lot of time I've spent in hospital this week. We've been in every day since Sunday for tests. I've also had an additional appointment with the Consultant and the General Manager for Paediatrics to discuss the events of last week and a clinic appointment with the consultant. So that makes a total of 6 visits to hospital since Sunday. I think I am way over 100 visits to hospital this year (and that's only 6 months in beating my previous record of around 85 visits in the year preceding Imogen's birth), especially if you include my knee injury and the birth of George. Anyway, for closure on last week, there will be two reviews at the hospital. One into how Saskia got exposed to building works at the hospital. The second into why Saskia was hospitalised through errors on the part of her doctors. They are taking both errors really seriously and will, we are told, take appropriate actions following their findings to ensure that this does not happen again and, if necessary, to discipline the staff involved. I can't ask for more than that at this stage. Meanwhile, we are slowly getting there with Saskia. This whole voriconazole thing has been a real setback in terms of getting Saskia's line out. Without the hiccup we would be taking her line out in one or two weeks' time. Now, because Saskia needs so many tests in the next few days and so many tests again when she comes off the voriconazole, we can't take the line out until mid-August (with the usual provisos). Date wise, here are the milestones to look out for. Day 100 - third chimerism test result. If this is as good as the first two sets of results we can be confident that the transplant has worked and that we will not see Saskia's old marrow coming back. It's also around day 100 that Saskia's risk of developing a virus that was present in Imogen's blood (and that many of us have floating around) decreases and we can be less worried about it flaring up and taking us in to hospital again. Day 120 - if Saskia has not developed Graft vs. Host Disease, she is fairly unlikely to do so. We're fairly hopeful that she won't as she has shown no signs of it to date, but because her transplant was mostly stem cells between days 90 - 120 is the time to really watch out for signs of rejection. Day 136 (4.5 months post transplant) all being well, Saskia's line will come out and we will wean her off the cyclosporin. Once she is off that drug, if she is well, she can go back to school and it's kind of all over (except it never will be, with lots of check-ups, etc. but the main-haul is over). Please note that we still have to be cautious at this stage, but we are definitely cautiously optimistic.
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