So here, albeit a little late, is the promised update. I didn’t intend it to be quite this belated, and on Tuesday night after a Maths Lesson sat myself down to catch up on some emails. Managed one post to BA network, and had just begun a long overdue email to Danielle (sorry Danielle, have got no further with it :-() when I heard the front door shut. Andy was not in the room, and I assumed he had gone out to put something in the bin. In fact, he was upstairs, and some ******* ****** (insert expletives of choice) had brazenly walked into our house, when we were here, at 9:30 pm, and swiped my handbag and Andy’s mobile from the kitchen.
The next four hours saw frantic cancelling of credit cards, deactivation of phones, Andy stomping round the neighbourhood, and a visit from the police (the woman who took the call seemed quite excited when she realised it was a BURGLARY!). They had tried to use one of the cards within 10 minutes of stealing it; unsuccessfully because they didn’t know the PIN. Scenes of crime came round the next morning, but didn’t find any prints. Not surprising really as they didn’t have to touch anything apart from what they actually took. It’s possible there may be CCTV from the cash machine where they tried to use the card, but that is the only possible lead.
The bastard even answered my phone, as if it was his!!! :- Obviously this was before I deactivated it. GRRRRRRRR
Why can’t these people do honest work for a living, like the rest of us do? Probably because it was drug related. Now there’s a topic for another post…..
In many ways this unpleasant event is actually a good thing. We have lost our sense of complacency regarding our security both when in and out of the home. Andy has spent £200 today on security devices for our home, and we haven’t finished yet. I have realised that there is not really any need to keep all my credit cards in my purse, when I rarely use them. They should be kept safely at home unless I need them.
This has also been achieved with the minimum of harm done. Really, it has just been a matter of inconvenience. We received most of the replacement cards within 48 hours, and the replacement sim cards to enable us to keep our mobile numbers within 3 days. We are also very relieved that Andy (or indeed me) did not come face to face with him/them, as they may have been high on drugs and/or armed. It was only that he had gone to the bathroom which prevented him from bumping into them……scary….
So I guess, shit happens, and it could be much worse. A lesson has been learnt. The worst inconvenience is losing our numbers stored in our phones – everything else is replaceable. And it is nice to have an excuse to update our phones…… ;-)
I had so much news before that I wanted to post but half of it has gone out of my head, so I will try and get through a few of the major events, in the 10 minutes I have before the Strictly Come Dancing result.
Firstly I wanted to say that I am so happy for Andy that he has been given a project at work that he is enjoying, for the first time in a couple of years. Of course, this means I have become a ‘java widow’ again, but I can live with that for a few weeks ;-)
Next, Hannah has had bloods (31st Oct) and a clinic visit (4th Nov). Bloods excellent, first ever normal across the board. Hurrah!
For those who care, they were
Total Bilirubin 4 (remember we’re in the UK!)
Albumin 41
ALT 39
Alk Phos 355
Total Protein 63
The clinic visit was OK, although her liver was palpable again, about an inch (it shouldn’t be felt below the ribs). It always used to be, but then in the two clinic visits in early summer it wasn’t. There seem to be three possibilities. 1) This is because she is growing 2) This is because the enlargement was missed in the summer 3) This is because her liver is getting bigger. Hope it’s the first. Time will tell.
Aaah, running out of time. Hannah was also part of a Diploma in Child Health exam at our local hospital. This was kind of a ‘Guess the diagnosis’ scenario. Both candidates who examined Hannah correctly gave BA as the most likely diagnosis, which I was fairly impressed with, given that there are only 50 new cases per year in this country. I was relieved that I have done so much research, as the first guy (who knew what a Kasai was – well done) described it as “a palliative procedure to keep the child alive for the first year until a transplant can be done”! That could have sent me into a panic! In some cases, he was right of course – I can well believe that is what he has read about it.
Right, time for SCD. My fix. Who will be out? Don’t want any of them to go. Sob. (Get a life, Sharon!)
My Girls
Saturday, November 19, 2005
Tuesday, November 08, 2005
Where have I been?
The computer has taken a back seat in the last month, hence my lack of blog posts and email contact – both of which in general require a lengthy session – although I have managed to pop up on the odd forum here and there.
That time of year has arrived again. Yes, it is time to resume my strange addiction to Strictly Come Dancing. I LOVE this programme. This is not normally my kind of show; I’ve never watched Pop Idol or X Factor or anything like that. I am not the sort of person who plans my time around the TV (good job as with only the five network channels there is often little to bother with), so tend to watch programmes that can be seen in isolation, like documentaries or things like Grand Designs (How cool? To design and build your own house? But how stressful!).
What do I love about SCD? Of course, there is the connection with Dirty Dancing, all-time favourite girlie movie, reminiscent of teenage years and one-time crush on Patrick Swayze. The fact that I can’t dance and am usually too shy to try makes me in absolute awe of the celebrities who put themselves under that pressure and scrutiny in the name of charity, and even greater awe of the professionals who make it look so perfect and effortless, just like I was blown away by Cynthia Rhodes’ dancing in DD. I avidly watch both the show itself and the fanzine It Takes Two, having to video them as they coincide with the girls’ bedtime..
Last year, I felt the winners of Strictly, Jill and Darren, were head and shoulders above the others. This year, there are a lot of good couples. I think my current favourites are Patsy and Anton, as I like their dancing and also think they both come across as humorous, down to earth people. I wish people didn’t have to get voted out (although this is how they make the money for charity) so you could see how everyone progressed over the time period. I also feel sorry for them when they have put in so much time and effort.
I think there are still five weeks to go, so still plenty for me to look forward to. My increased TV viewing (as well as a return by the amusing Mitchell brothers) has brought my nine month abstinence from Eastenders to an end. Arghhhhhhhhh! Have also got back into Holby City, after trying to break that cycle.
To make things worse, 31st October saw the release on DVD of Star Wars Episode III, Revenge of the Sith. We tried to fit in a viewing of the other five beforehand but only got through Episodes IV and V. Despite our best intentions, we missed out on seeing Episode III at the cinema so this had been eagerly awaited. I think Star Wars is like Marmite, you either love it or hate it, and being firmly in the former category (part of my assimilation into Sci-Fi by Andy), I really enjoyed it, and thought it a good completion of the saga. Personally, I am incredibly impressed by this whole, detailed, concept that George Lucas has created, and I disagree with critics who say that this or that should have been done some other way. It is the way it is, and I love it!
I have also been taking on some more work in the evenings the last couple of weeks, so, excuses over, I solemnly promise to deliver in the next week:
1) A blog post with news!
2) Emails to people who may be wondering why they haven’t heard from me.
Off now to put all the blasted links in this post, and to watch video from earlier of SCD It Takes Two, Eastenders and Holby City. I think my life may lack excitement…..
That time of year has arrived again. Yes, it is time to resume my strange addiction to Strictly Come Dancing. I LOVE this programme. This is not normally my kind of show; I’ve never watched Pop Idol or X Factor or anything like that. I am not the sort of person who plans my time around the TV (good job as with only the five network channels there is often little to bother with), so tend to watch programmes that can be seen in isolation, like documentaries or things like Grand Designs (How cool? To design and build your own house? But how stressful!).
What do I love about SCD? Of course, there is the connection with Dirty Dancing, all-time favourite girlie movie, reminiscent of teenage years and one-time crush on Patrick Swayze. The fact that I can’t dance and am usually too shy to try makes me in absolute awe of the celebrities who put themselves under that pressure and scrutiny in the name of charity, and even greater awe of the professionals who make it look so perfect and effortless, just like I was blown away by Cynthia Rhodes’ dancing in DD. I avidly watch both the show itself and the fanzine It Takes Two, having to video them as they coincide with the girls’ bedtime..
Last year, I felt the winners of Strictly, Jill and Darren, were head and shoulders above the others. This year, there are a lot of good couples. I think my current favourites are Patsy and Anton, as I like their dancing and also think they both come across as humorous, down to earth people. I wish people didn’t have to get voted out (although this is how they make the money for charity) so you could see how everyone progressed over the time period. I also feel sorry for them when they have put in so much time and effort.
I think there are still five weeks to go, so still plenty for me to look forward to. My increased TV viewing (as well as a return by the amusing Mitchell brothers) has brought my nine month abstinence from Eastenders to an end. Arghhhhhhhhh! Have also got back into Holby City, after trying to break that cycle.
To make things worse, 31st October saw the release on DVD of Star Wars Episode III, Revenge of the Sith. We tried to fit in a viewing of the other five beforehand but only got through Episodes IV and V. Despite our best intentions, we missed out on seeing Episode III at the cinema so this had been eagerly awaited. I think Star Wars is like Marmite, you either love it or hate it, and being firmly in the former category (part of my assimilation into Sci-Fi by Andy), I really enjoyed it, and thought it a good completion of the saga. Personally, I am incredibly impressed by this whole, detailed, concept that George Lucas has created, and I disagree with critics who say that this or that should have been done some other way. It is the way it is, and I love it!
I have also been taking on some more work in the evenings the last couple of weeks, so, excuses over, I solemnly promise to deliver in the next week:
1) A blog post with news!
2) Emails to people who may be wondering why they haven’t heard from me.
Off now to put all the blasted links in this post, and to watch video from earlier of SCD It Takes Two, Eastenders and Holby City. I think my life may lack excitement…..
Sunday, October 09, 2005
The Longest Post
Mostly Caitlin
Caitlin is settling into nursery, and I am getting to grips with the new routine. She runs in there eagerly every day, with me usually following behind at Hannah’s pace (Hannah will WALK, Mummy will not argue!). The formalities of hanging up coats and bags and putting her name apple on the tree are an irritation to her; she just wants to get in there and play!
I was worried that she might wish she had stayed at pre-school, but nursery has definitely won her over! I have heard about all manner of delights such as the water trough, the cars and roads, the fishing game (she catched boots, and Olivia shared her rod with her, and she catched boots!), chalks, cutting and gluing,……..can I go please? Today she was thrilled to bring home a star shaped “cake biscuit” which was “made from flour and butter, and I had a bit of help from Mrs Linton”.
One of Caitlin’s recent games is ‘Guess What Animal I Am Being’. The other day the clue was “leap, leap, leap”. A rabbit? A kangaroo? A grasshopper? No, none of the above. I gave up. “It’s a leper, mummy! A leper!” ?????? The bible? A leopard? Do lepers, or leopards, leap? Sometimes parenthood makes your head hurt, but more importantly your sides ache.
Caitlin has recently developed the irritating habit of yelling “Nooooooo, Hannaaaaaaaah” every time Hannah so much as looks in her direction. I do have considerable sympathy for Caitlin; Hannah just doesn’t play by the rules. However, it has recently got to the point where Caitlin was doing this constantly, even when Hannah was toddling about minding her own business. I seem to have cured this problem, at least temporarily; this having been achieved by a couple of well-timed “Noooooooo, Caitliiiiiiiiiiin”s from me, which left her somewhat less than impressed. Three cheers for creative parenting! Although I was informed, after she had said sorry to Hannah, that it was my turn to say sorry to her. I can see the logic…
CLDF Conference
Last Saturday saw us at the CLDF conference. I had my customary stress about getting out of the house in the morning, but fortunately a shorter than anticipated journey somewhat alleviated this. This was an excellent event, and I am still trying to take everything in that I heard and learned. First of all, it was great to see Danielle and Ethan again, and Danielle brought some lovely presents for the girls (belated birthday). Caitlin had some Crayola Wonder Paints which are a mess free thing (hurrah) and Hannah had a lovely fluffy pink jumper from Next (buy my girls clothes from Next, be my friend for life). Danielle, if you are reading this, you helped me so much to get through Hannah’s kasai, and you were always there for a chat or a cup of tea or with a stack of magazines to read. Thank you, and I am so glad we have remained friends. And Ethan is a superstar!
It was also lovely to meet both Elly and Jane for the first time, and their beautiful families. After about 7 months corresponding with Elly, and about 5 with Jane, and discovering we have more in common than just babies with liver disease, it was great to meet them both in person. Their friendships are both really important to me, not least because Max and Arthur are a similar age to Hannah, but also because both are intelligent and forthright women. I am just sorry I did not get more time to chat with my friends, as the day proved to be very busy. I would have also liked to have had time to browse around the displays and buy from the shop. A two day conference would have suited me! I think this was mostly due in part to Andy and I having two small and exuberant children to look after at the times when we weren’t in the talks, having to pick them up from and drop them off at the crèche, and lack of organisation and planning on our part. For a start we were silly enough not to bring a buggy for Hannah (she who does NOT like to be carried).
The event as a whole was superb. The talk in the morning, which was the annual report, I foresaw to be fairly tedious, like Andy’s MD’s speech at the annual Christmas party. How wrong I was. Catherine Arkley is an impressive and commanding speaker. She spoke movingly of the early days of the organisation, and the struggles faced by parents in the early 1980’s, and she spoke passionately about the CLDF’s vision for the future. We then heard from two wonderfully inspiring mums who have worked tirelessly to raise money for CLDF – I felt very humble – and saw some incredibly touching video footage of their children playing together.
In the afternoon there was a choice of sessions. Although we had initially thought we would go to the ‘Living with liver disease’ discussion, we decided in the end to go to the main conference, which consisted of two talks, the first about liver biopsy, the second about issues on the transplant list. The liver biopsy talk was very interesting. It firstly dealt with biopsy methods, where the focus was on percutaneous needle biopsy. This was new to me, as Hannah has only had a surgical biopsy at the time of her Kasai. This was followed by information about different stains and what they show up, accompanied with slides. Fascinating stuff!
The second talk, about transplant list issues, was undertaken by a transplant surgeon and a clinical psychologist. In fact, a lot of what was said by the psychologist applied to dealing with liver disease in general so was extremely useful. Such as your feelings towards people who are anti organ donation. I have to admit I already take this somewhat personally. And how the different coping strategies used by different members of the family can cause conflict and misunderstanding. And how friends and family don’t always get it, and think that your child is better or has been cured, but part of you doesn’t really want them to get it, because then they would feel the pain too.
The more practical information was also good. After all, we will be there one day. As Andy described it the other day, “We were woken up in the middle of a routine operation to find out she had some major disease that we knew nothing about. We don’t want to be that badly prepared again.”
The highlight of the day was the Question Time session at the end. It was really interesting to hear the panel’s diverse opinions on topics such as: Whether alcohol is allowed in liver disease/transplant patients (OK apparently, to my surprise, although obviously in strict moderation), what is the prognosis for biliary atresia patients (transplant, though after many years for some), is milk thistle of any benefit (not proven but doesn’t do any harm*), should George Best have received a liver transplant (IMO yes, ethically, although he has done huge harm to organ donation on this country), the list goes on.
The best question was saved for last. If each member of the panel had £150 000 to spend on research, where would it go? I thought the most interesting three were
Treatment for portal hypertension – when is the best time to intervene – before or after a bleed
Study into father’s reactions to their child’s liver disease
Hepatocyte transplant
So it was an excellent day and I can’t believe I have to wait another year for the next one. A big thanks to the CLDF and all the speakers and volunteers. Oh, and the girls enjoyed the crèche (although Hannah was a bit tired of it all by the third session and I left her screaming on the floor, refusing to allow anyone to pick her up). Rounded off the day with takeaway pizza. Splendid.
*I remember reading somewhere that milk thistle could worsen portal hypertension – where the hell was that??? I wish all this sort of information could be collected together in an easily searchable database ;-)
In Memory of Haley
The world has lost another child to liver disease. This time it is Haley. Haley died suddenly on Saturday 1st October aged 11. This amazing little girl, who I would have loved to have had the privilege to meet, fought a long and hard battle against a rare combination of illnesses. She was amazingly talented and wrote and performed songs about her liver disease. I prefer to believe that Haley could not be healed here on earth, so the Lord brought her home to heal her. I didn’t know Haley, but I cried for her and her family. I cannot imagine their pain.
More anniversaries
On Monday it is a year since the beginning of our darkest few days so far, the admission to hospital for surgery, of course at the time we thought this was for choledochal cyst. The day after that was just horrid, starving her for the ultrasound and very distressing blood tests and cannula insertion. The next day was the day of the Kasai, again having to starve her was very upsetting. Remember these babies with no bile flow have to feed every hour or two as they are absorbing very little of their milk. There was a bit of a delay getting her to theatre and she eventually went at 10:45 having been NBM since 4 am. Yuck. The very worst bit was that when the operation was due to be over, Chris came to fetch us. I expected that we would be taken to Hannah in the recovery room, but, no, Prof Millar wanted to speak to us. Andy tells me that Chris made it clear that Hannah was still in surgery, but I didn’t take that in. I thought she was dead, from then until Prof Millar said he would speak to us in HDU rather than in a private room. Instead, of course, it was a change in diagnosis, to biliary atresia. At the time that was a relief. It took several months to take in the consequences. I didn’t really have time to worry, and Hannah did so well from the word go. I have to admit I never worried about a failed Kasai. We were told the surgery might not work, but Hannah showed signs of good bile flow from the very early stages, when I was more worried about when the tubes might come off her and when she might feed again than any long term prognosis. At that time I took a day at a time, and every day Hannah improved and gave me hope. By the time I learned about the true consequences of a failed Kasai, it was obvious that Hannah’s was working. Of course it is also very much a positive anniversary, in that the last year has seen her do so well, and that we have stayed out of the hospital. I very much hope I can say the same thing this time next year.
I have been trying to get down in words my current understanding of and feelings about what the future might hold for us, and the following is the result.
Biliary Atresia
I think that sometimes people wonder why I can’t just get on with things. (Or perhaps I don’t give other people enough credit, and this is in fact a self-criticism.) After all, Hannah has had her surgery, almost a year ago, and has come through with flying colours. She is feisty, growing well and developing normally. She is full of life and energy. What more could I ask for? Why do I keep dwelling on this biliary atresia thing? Why do I have so much fear for the future?
In truth, I don’t dwell on it all the time. Most of the time when I look at Hannah I see a beautiful daughter, not an illness. She is my little ray of sunshine and brings me enormous happiness. I try my hardest to treat her as any other child and to make the absolute most of this relatively normal time which we have been blessed with.
However, I cannot deny the facts and nor do I think it would be healthy for me to do so. Biliary atresia is a very scary disease. You will find this out very quickly if you search for it on Google. I am not worrying about rare complications (although there are plenty of those, most of them pretty nasty), but about very common problems which are life-threatening. Hannah is beating the odds, and I pray and hope every day that she can continue to do so.
To be brutally honest, the miracle that we would hope for is that Hannah has been misdiagnosed. There are some doctors who believe that this is indeed the case for BA patients who don’t need to be transplanted. Unfortunately, this seems unlikely taking into account the experience of the surgical team who made the diagnosis, which was also confirmed by pathology.
What we can also hope for is that alternative treatments for BA become available, before the need for transplantation arises, and that the disease progresses slowly enough in Hannah that she will not reach that stage for many years. She may be one of the lucky few.
I can’t just forget about it and I will not apologise for that. There are a dozen reminders every day, and I cope with this the best I can. To me this means dealing with it, not denying it. We are already among the lucky minority, in that Hannah has had no hospitalisations in almost a year since the Kasai. I thank God for that every day.
I can’t help but be scared about the future, as the likelihood is that things will get worse. I feel frightened about the girls having to grow to understand all this – it gives me shivers to think of it. Best not to go there for now.
There aren’t many people that I can tell how completely shit this whole thing makes me feel sometimes, although I am lucky that there are one or two. I even find it hard to voice concerns on CLASS, BA Network and Liver Families. Almost everyone else’s child seems to have had it worse than Hannah. Sometimes I feel like a bit of a fraud in the world of liver disease. I know that’s not really the case, and that everyone has something valuable to contribute, whether they are going through it now, have in the past, or like us are experiencing an extended period of plain sailing. I know that at the least our story so far can give a little hope to parents of newly diagnosed babies, and that people want to hear good news as well as bad, but a lot of the time I still feel like a bit of an outsider. Not of course that I would want Hannah to get sicker so as to have more common experiences with other parents.
So why is this Biliary Atresia such a scary disease? How can a little girl who looks so well be so poorly inside? Why is this diagnosis so devastating and life changing for us? Why do we feel the need to prepare ourselves for the future?
Biliary atresia causes progressive, irreversible liver damage, called cirrhosis.
No-one knows what causes Biliary Atresia. Until they do, there will be no cure.
There is no cure for cirrhosis. It can be treated by liver transplant.
The liver can continue to function normally until it is 75% damaged. This is known as compensated chronic liver disease. When decompensation occurs, in other words, when symptoms start to appear, transplant is usually both inevitable and imminent.
In the vast majority of biliary atresia patients, decompensation occurs before adulthood. The opinion of the medical profession seems to be that it will eventually occur in every patient.
In one study of 271 BA patients in France, only two individuals had reached the age of 20 or over without showing signs of cirrhosis.
Liver transplant is inevitable in biliary atresia, at some stage, based on current medical knowledge.
It may be that BA patients are better off being transplanted as children, as in the UK 1 in 5 adults on the liver transplant list dies while waiting. The proportion is much smaller for children. Success rates are similar.
My best guess, from all the figures I have read, is that one in five children born with biliary atresia will not live to adulthood.
When liver failure occurs, it is accompanied by a whole host of unpleasant and potentially fatal side effects, including multi organ failure.
Liver disease tries to cover all the bases for you, so there are also a whole lot more unpleasant and potentially fatal side effects that can occur before the liver decompensates, such as portal hypertension which causes internal haemorrhaging.
So it scares the shit out of me. Liver disease is nasty, and unpredictable, and it won’t go away, and Hannah won’t get better. And this is my blog, and my life, and if I want to be bloody miserable and self pitying sometimes I shall be. I am blessed that Hannah has done so well thus far, and I know it. This doesn’t mean I am ever going to like the fact that my beautiful baby girl who I love with all my heart has this shitty disease that could turn everything upside down at any time.
Blogging is such good therapy....
Caitlin is settling into nursery, and I am getting to grips with the new routine. She runs in there eagerly every day, with me usually following behind at Hannah’s pace (Hannah will WALK, Mummy will not argue!). The formalities of hanging up coats and bags and putting her name apple on the tree are an irritation to her; she just wants to get in there and play!
I was worried that she might wish she had stayed at pre-school, but nursery has definitely won her over! I have heard about all manner of delights such as the water trough, the cars and roads, the fishing game (she catched boots, and Olivia shared her rod with her, and she catched boots!), chalks, cutting and gluing,……..can I go please? Today she was thrilled to bring home a star shaped “cake biscuit” which was “made from flour and butter, and I had a bit of help from Mrs Linton”.
One of Caitlin’s recent games is ‘Guess What Animal I Am Being’. The other day the clue was “leap, leap, leap”. A rabbit? A kangaroo? A grasshopper? No, none of the above. I gave up. “It’s a leper, mummy! A leper!” ?????? The bible? A leopard? Do lepers, or leopards, leap? Sometimes parenthood makes your head hurt, but more importantly your sides ache.
Caitlin has recently developed the irritating habit of yelling “Nooooooo, Hannaaaaaaaah” every time Hannah so much as looks in her direction. I do have considerable sympathy for Caitlin; Hannah just doesn’t play by the rules. However, it has recently got to the point where Caitlin was doing this constantly, even when Hannah was toddling about minding her own business. I seem to have cured this problem, at least temporarily; this having been achieved by a couple of well-timed “Noooooooo, Caitliiiiiiiiiiin”s from me, which left her somewhat less than impressed. Three cheers for creative parenting! Although I was informed, after she had said sorry to Hannah, that it was my turn to say sorry to her. I can see the logic…
CLDF Conference
Last Saturday saw us at the CLDF conference. I had my customary stress about getting out of the house in the morning, but fortunately a shorter than anticipated journey somewhat alleviated this. This was an excellent event, and I am still trying to take everything in that I heard and learned. First of all, it was great to see Danielle and Ethan again, and Danielle brought some lovely presents for the girls (belated birthday). Caitlin had some Crayola Wonder Paints which are a mess free thing (hurrah) and Hannah had a lovely fluffy pink jumper from Next (buy my girls clothes from Next, be my friend for life). Danielle, if you are reading this, you helped me so much to get through Hannah’s kasai, and you were always there for a chat or a cup of tea or with a stack of magazines to read. Thank you, and I am so glad we have remained friends. And Ethan is a superstar!
It was also lovely to meet both Elly and Jane for the first time, and their beautiful families. After about 7 months corresponding with Elly, and about 5 with Jane, and discovering we have more in common than just babies with liver disease, it was great to meet them both in person. Their friendships are both really important to me, not least because Max and Arthur are a similar age to Hannah, but also because both are intelligent and forthright women. I am just sorry I did not get more time to chat with my friends, as the day proved to be very busy. I would have also liked to have had time to browse around the displays and buy from the shop. A two day conference would have suited me! I think this was mostly due in part to Andy and I having two small and exuberant children to look after at the times when we weren’t in the talks, having to pick them up from and drop them off at the crèche, and lack of organisation and planning on our part. For a start we were silly enough not to bring a buggy for Hannah (she who does NOT like to be carried).
The event as a whole was superb. The talk in the morning, which was the annual report, I foresaw to be fairly tedious, like Andy’s MD’s speech at the annual Christmas party. How wrong I was. Catherine Arkley is an impressive and commanding speaker. She spoke movingly of the early days of the organisation, and the struggles faced by parents in the early 1980’s, and she spoke passionately about the CLDF’s vision for the future. We then heard from two wonderfully inspiring mums who have worked tirelessly to raise money for CLDF – I felt very humble – and saw some incredibly touching video footage of their children playing together.
In the afternoon there was a choice of sessions. Although we had initially thought we would go to the ‘Living with liver disease’ discussion, we decided in the end to go to the main conference, which consisted of two talks, the first about liver biopsy, the second about issues on the transplant list. The liver biopsy talk was very interesting. It firstly dealt with biopsy methods, where the focus was on percutaneous needle biopsy. This was new to me, as Hannah has only had a surgical biopsy at the time of her Kasai. This was followed by information about different stains and what they show up, accompanied with slides. Fascinating stuff!
The second talk, about transplant list issues, was undertaken by a transplant surgeon and a clinical psychologist. In fact, a lot of what was said by the psychologist applied to dealing with liver disease in general so was extremely useful. Such as your feelings towards people who are anti organ donation. I have to admit I already take this somewhat personally. And how the different coping strategies used by different members of the family can cause conflict and misunderstanding. And how friends and family don’t always get it, and think that your child is better or has been cured, but part of you doesn’t really want them to get it, because then they would feel the pain too.
The more practical information was also good. After all, we will be there one day. As Andy described it the other day, “We were woken up in the middle of a routine operation to find out she had some major disease that we knew nothing about. We don’t want to be that badly prepared again.”
The highlight of the day was the Question Time session at the end. It was really interesting to hear the panel’s diverse opinions on topics such as: Whether alcohol is allowed in liver disease/transplant patients (OK apparently, to my surprise, although obviously in strict moderation), what is the prognosis for biliary atresia patients (transplant, though after many years for some), is milk thistle of any benefit (not proven but doesn’t do any harm*), should George Best have received a liver transplant (IMO yes, ethically, although he has done huge harm to organ donation on this country), the list goes on.
The best question was saved for last. If each member of the panel had £150 000 to spend on research, where would it go? I thought the most interesting three were
Treatment for portal hypertension – when is the best time to intervene – before or after a bleed
Study into father’s reactions to their child’s liver disease
Hepatocyte transplant
So it was an excellent day and I can’t believe I have to wait another year for the next one. A big thanks to the CLDF and all the speakers and volunteers. Oh, and the girls enjoyed the crèche (although Hannah was a bit tired of it all by the third session and I left her screaming on the floor, refusing to allow anyone to pick her up). Rounded off the day with takeaway pizza. Splendid.
*I remember reading somewhere that milk thistle could worsen portal hypertension – where the hell was that??? I wish all this sort of information could be collected together in an easily searchable database ;-)
In Memory of Haley
The world has lost another child to liver disease. This time it is Haley. Haley died suddenly on Saturday 1st October aged 11. This amazing little girl, who I would have loved to have had the privilege to meet, fought a long and hard battle against a rare combination of illnesses. She was amazingly talented and wrote and performed songs about her liver disease. I prefer to believe that Haley could not be healed here on earth, so the Lord brought her home to heal her. I didn’t know Haley, but I cried for her and her family. I cannot imagine their pain.
More anniversaries
On Monday it is a year since the beginning of our darkest few days so far, the admission to hospital for surgery, of course at the time we thought this was for choledochal cyst. The day after that was just horrid, starving her for the ultrasound and very distressing blood tests and cannula insertion. The next day was the day of the Kasai, again having to starve her was very upsetting. Remember these babies with no bile flow have to feed every hour or two as they are absorbing very little of their milk. There was a bit of a delay getting her to theatre and she eventually went at 10:45 having been NBM since 4 am. Yuck. The very worst bit was that when the operation was due to be over, Chris came to fetch us. I expected that we would be taken to Hannah in the recovery room, but, no, Prof Millar wanted to speak to us. Andy tells me that Chris made it clear that Hannah was still in surgery, but I didn’t take that in. I thought she was dead, from then until Prof Millar said he would speak to us in HDU rather than in a private room. Instead, of course, it was a change in diagnosis, to biliary atresia. At the time that was a relief. It took several months to take in the consequences. I didn’t really have time to worry, and Hannah did so well from the word go. I have to admit I never worried about a failed Kasai. We were told the surgery might not work, but Hannah showed signs of good bile flow from the very early stages, when I was more worried about when the tubes might come off her and when she might feed again than any long term prognosis. At that time I took a day at a time, and every day Hannah improved and gave me hope. By the time I learned about the true consequences of a failed Kasai, it was obvious that Hannah’s was working. Of course it is also very much a positive anniversary, in that the last year has seen her do so well, and that we have stayed out of the hospital. I very much hope I can say the same thing this time next year.
I have been trying to get down in words my current understanding of and feelings about what the future might hold for us, and the following is the result.
Biliary Atresia
I think that sometimes people wonder why I can’t just get on with things. (Or perhaps I don’t give other people enough credit, and this is in fact a self-criticism.) After all, Hannah has had her surgery, almost a year ago, and has come through with flying colours. She is feisty, growing well and developing normally. She is full of life and energy. What more could I ask for? Why do I keep dwelling on this biliary atresia thing? Why do I have so much fear for the future?
In truth, I don’t dwell on it all the time. Most of the time when I look at Hannah I see a beautiful daughter, not an illness. She is my little ray of sunshine and brings me enormous happiness. I try my hardest to treat her as any other child and to make the absolute most of this relatively normal time which we have been blessed with.
However, I cannot deny the facts and nor do I think it would be healthy for me to do so. Biliary atresia is a very scary disease. You will find this out very quickly if you search for it on Google. I am not worrying about rare complications (although there are plenty of those, most of them pretty nasty), but about very common problems which are life-threatening. Hannah is beating the odds, and I pray and hope every day that she can continue to do so.
To be brutally honest, the miracle that we would hope for is that Hannah has been misdiagnosed. There are some doctors who believe that this is indeed the case for BA patients who don’t need to be transplanted. Unfortunately, this seems unlikely taking into account the experience of the surgical team who made the diagnosis, which was also confirmed by pathology.
What we can also hope for is that alternative treatments for BA become available, before the need for transplantation arises, and that the disease progresses slowly enough in Hannah that she will not reach that stage for many years. She may be one of the lucky few.
I can’t just forget about it and I will not apologise for that. There are a dozen reminders every day, and I cope with this the best I can. To me this means dealing with it, not denying it. We are already among the lucky minority, in that Hannah has had no hospitalisations in almost a year since the Kasai. I thank God for that every day.
I can’t help but be scared about the future, as the likelihood is that things will get worse. I feel frightened about the girls having to grow to understand all this – it gives me shivers to think of it. Best not to go there for now.
There aren’t many people that I can tell how completely shit this whole thing makes me feel sometimes, although I am lucky that there are one or two. I even find it hard to voice concerns on CLASS, BA Network and Liver Families. Almost everyone else’s child seems to have had it worse than Hannah. Sometimes I feel like a bit of a fraud in the world of liver disease. I know that’s not really the case, and that everyone has something valuable to contribute, whether they are going through it now, have in the past, or like us are experiencing an extended period of plain sailing. I know that at the least our story so far can give a little hope to parents of newly diagnosed babies, and that people want to hear good news as well as bad, but a lot of the time I still feel like a bit of an outsider. Not of course that I would want Hannah to get sicker so as to have more common experiences with other parents.
So why is this Biliary Atresia such a scary disease? How can a little girl who looks so well be so poorly inside? Why is this diagnosis so devastating and life changing for us? Why do we feel the need to prepare ourselves for the future?
Biliary atresia causes progressive, irreversible liver damage, called cirrhosis.
No-one knows what causes Biliary Atresia. Until they do, there will be no cure.
There is no cure for cirrhosis. It can be treated by liver transplant.
The liver can continue to function normally until it is 75% damaged. This is known as compensated chronic liver disease. When decompensation occurs, in other words, when symptoms start to appear, transplant is usually both inevitable and imminent.
In the vast majority of biliary atresia patients, decompensation occurs before adulthood. The opinion of the medical profession seems to be that it will eventually occur in every patient.
In one study of 271 BA patients in France, only two individuals had reached the age of 20 or over without showing signs of cirrhosis.
Liver transplant is inevitable in biliary atresia, at some stage, based on current medical knowledge.
It may be that BA patients are better off being transplanted as children, as in the UK 1 in 5 adults on the liver transplant list dies while waiting. The proportion is much smaller for children. Success rates are similar.
My best guess, from all the figures I have read, is that one in five children born with biliary atresia will not live to adulthood.
When liver failure occurs, it is accompanied by a whole host of unpleasant and potentially fatal side effects, including multi organ failure.
Liver disease tries to cover all the bases for you, so there are also a whole lot more unpleasant and potentially fatal side effects that can occur before the liver decompensates, such as portal hypertension which causes internal haemorrhaging.
So it scares the shit out of me. Liver disease is nasty, and unpredictable, and it won’t go away, and Hannah won’t get better. And this is my blog, and my life, and if I want to be bloody miserable and self pitying sometimes I shall be. I am blessed that Hannah has done so well thus far, and I know it. This doesn’t mean I am ever going to like the fact that my beautiful baby girl who I love with all my heart has this shitty disease that could turn everything upside down at any time.
Blogging is such good therapy....
Wednesday, September 28, 2005
Caitlin's first day at nursery
Actually it was only an hour, with Mummy in tow, but she had lots of fun. She squeezed in playing with the kitchen, the castle, skipping (her description!), painting, digging, water, and playdough, as well as a bit of general exploration. Actually I felt like a bit of a spare part - she has never asked for me to stay with her at pre-school.
She looked such a big grown up girl in her uniform. This is my baby girl! Here are some pics of her modelling her uniform just before we set off.
She looked such a big grown up girl in her uniform. This is my baby girl! Here are some pics of her modelling her uniform just before we set off.
Friday, September 23, 2005
A Wet Day in England
When I got up this morning (6 am, thank you Hannah – although this is my target time for my new ‘domestic goddess schedule’) it was a bit autumnal and misty but the sun looked as if it would soon be breaking through. Wrong, of course. It does rain as much in Britain as legend would claim. I am sure that I was personally responsible for this, as in my false optimism had put a load of ‘do not tumble dry’ clothes in the washing machine.
By mid-morning it was grey, overcast, and the rain was falling steadily. Off to the library and Sainsbury’s (have I mentioned before that I hate supermarket shopping and am currently devising strategies to minimise it?) Hair of course looked like 70’s rocker within 5 minutes of leaving the house (should have worn coat with hood but it was warm).
Caitlin, I think, takes after her mother. How many three year olds quiver with excitement at a trip to the library? Hannah preferred to make straight for the adult fiction and toss the books onto the floor. We shall have to make more of an event of it next time and stay to read a few books (maybe with Hannah strapped in the buggy). I renewed two of my three books for the second time, but at least this time I managed to give one back.
At Sainsbury’s I was berating Caitlin for removing some thing (looked like a draught excluder) that was mopping up a leak from the freezer, and a succession of other minor misdemeanours of which further occurrence would result in “Putting Back The Dinosaur Meat”, when we were approached by a somewhat strange old lady. (This is not unusual.) Poor Caitlin was subjected to a five minute lecture on how if she wasn’t a good girl for her mummy then Father Christmas wouldn’t bring her any presents. Have to say it does not seem to have made a lasting impression!
The rain cleared up this afternoon (washing on line, hurrah!) and it was pleasant and sunny for a while.
The day didn’t get any dryer, however, as both girls seemed determined to get me as wet as possible at bathtime. Hannah’s technique of bashing the watering can on the surface of the water was the most effective.
PS For anyone concerned that we may have T-rex steaks for dinner here, (or indeed that they may stock them at Sainsbury’s), the dinosaur meat is a sandwich meat with a different colour dinosaur shape in the centre.
Today is another reflective day for me. A year ago tomorrow Hannah went for her first blood test, and we were told that further investigation was necessary. I don’t really want to dwell on these anniversaries, but it is very difficult. It seems to me a natural way that you measure the progress and development of your child, to reflect back on ‘this time last year’. When you do that with Hannah at the moment, there is an addendum in brackets. “This time last year she was just a tiny little newborn, (who was bright yellow.)” You can’t separate the memories.
I like to read Moreena’s blog (not sure it's polite to add a link without her permission, in fact or if it's polite to quote either....unsure regarding blogging etiquette) Her daughter has been through so much with her BA, including two transplants, and is having further complications now. Although I haven’t experienced all the crap that they have, I really empathised with this paragraph from one of her posts.
“The funny thing about liver problems in kids is that it is rather unpredictable. Well, not funny, exactly. It's one of the hardest aspects of life for the liver parents. When times are bad, well, they're crap. But even when times are good, there's always the fear that the crap is just around the corner. It's hard to get comfortable, mentally speaking. And you end up feeling like the crazy person that no one wants to talk to because you can't just smile and accept the sunshine of relative good health without worrying about the next storm that may or may not appear any damn minute.”
Thanks, Moreena, that just about sums it up.
Not raining now, and my clothes have now dried, so my wet day is a little less damp. Goodnight.
By mid-morning it was grey, overcast, and the rain was falling steadily. Off to the library and Sainsbury’s (have I mentioned before that I hate supermarket shopping and am currently devising strategies to minimise it?) Hair of course looked like 70’s rocker within 5 minutes of leaving the house (should have worn coat with hood but it was warm).
Caitlin, I think, takes after her mother. How many three year olds quiver with excitement at a trip to the library? Hannah preferred to make straight for the adult fiction and toss the books onto the floor. We shall have to make more of an event of it next time and stay to read a few books (maybe with Hannah strapped in the buggy). I renewed two of my three books for the second time, but at least this time I managed to give one back.
At Sainsbury’s I was berating Caitlin for removing some thing (looked like a draught excluder) that was mopping up a leak from the freezer, and a succession of other minor misdemeanours of which further occurrence would result in “Putting Back The Dinosaur Meat”, when we were approached by a somewhat strange old lady. (This is not unusual.) Poor Caitlin was subjected to a five minute lecture on how if she wasn’t a good girl for her mummy then Father Christmas wouldn’t bring her any presents. Have to say it does not seem to have made a lasting impression!
The rain cleared up this afternoon (washing on line, hurrah!) and it was pleasant and sunny for a while.
The day didn’t get any dryer, however, as both girls seemed determined to get me as wet as possible at bathtime. Hannah’s technique of bashing the watering can on the surface of the water was the most effective.
PS For anyone concerned that we may have T-rex steaks for dinner here, (or indeed that they may stock them at Sainsbury’s), the dinosaur meat is a sandwich meat with a different colour dinosaur shape in the centre.
Today is another reflective day for me. A year ago tomorrow Hannah went for her first blood test, and we were told that further investigation was necessary. I don’t really want to dwell on these anniversaries, but it is very difficult. It seems to me a natural way that you measure the progress and development of your child, to reflect back on ‘this time last year’. When you do that with Hannah at the moment, there is an addendum in brackets. “This time last year she was just a tiny little newborn, (who was bright yellow.)” You can’t separate the memories.
I like to read Moreena’s blog (not sure it's polite to add a link without her permission, in fact or if it's polite to quote either....unsure regarding blogging etiquette) Her daughter has been through so much with her BA, including two transplants, and is having further complications now. Although I haven’t experienced all the crap that they have, I really empathised with this paragraph from one of her posts.
“The funny thing about liver problems in kids is that it is rather unpredictable. Well, not funny, exactly. It's one of the hardest aspects of life for the liver parents. When times are bad, well, they're crap. But even when times are good, there's always the fear that the crap is just around the corner. It's hard to get comfortable, mentally speaking. And you end up feeling like the crazy person that no one wants to talk to because you can't just smile and accept the sunshine of relative good health without worrying about the next storm that may or may not appear any damn minute.”
Thanks, Moreena, that just about sums it up.
Not raining now, and my clothes have now dried, so my wet day is a little less damp. Goodnight.
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