Sunday, April 29, 2007

A big week ahead

The excitement of the London Marathon has not yet died down on this house hold. I have it on DVD and am still working my way through, remembering how fantastic a day it was. It feels a bit like a dream now and I have to look at my medal to remind myself I really did it! I was rubbish at sport at school and have grown up with very severe asthma so running really wasn't for me. I have now found that distance running seems to work very well for me. I still can't sprint and running for a bus makes me cough and wheeze. I think it is because asthma is caused by reactive airways and, once you have coped with the inial couple of miles, coughing and wheezing a bit, you settle into a rhythmn that is no longer something new for your lungs to react to. I just hope the summer and its heat and hayfever don't muck up this equilibrium because I have found now that I really need this way of burning up the stress and adrenaline associated with our journey with William. I need to keep this up so have entered another marathon, Loch Ness in October. I won't be able to raise anything like the amount I raised for CHASE at London but will try to raise a little bit more with a competition, together with a suitably Scottish prize, to guess my time at Loch Ness. More about that later in the year so watch this space.

I am really going to need my running this week as we have a huge one ahead of us. William is having his MRI scan of his brain on Thursday. This has been cancelled 3 times because he has been too poorly so we hope he keeps well over the next few days. This scan is to see if there are any obvious abnormalities in his brain to be causing his neurological problems. He is also having his veins scanned to see how many can still be used for future Hickman Lines. The surgeons are concerned because his chest veins are dilated and may not be suitable for further line access. Running out of places for his lines would be very serious indeed. As I have mentioned before, it is likely that William's only hope to lose his dependence on TPN is a small bowel transplant. We don't know if he is suitable for this and have been waiting to explore his suitability with the transplant team at Birmingham Children's Hospital. The idea of a transplant was first mentioned to us just before Christmas 2005. The team were made aware of him at that point. William has had a tough year this year and it was decided to formally refer him for transplant assessment in February, before going forward with the surgical intervention he needs to make him more comfortable. Wills has struggled with pain and discomfort and waiting for this opinion has seemed like an eternity. The news came last week that we are due to meet the team and discuss William on Friday this week - not much notice! The transplant team have had a meeting about him and this is the first stage of assessment. Paul and I will go alone this time and discuss William, meet the liason nurse and other members of the team and have a look round "ward 8" where the assessments and transplants take place. We don't know what they will say on Friday. To me, all this sounds a lot to just be told they can't do anything but it may just be a standard letter. Friday is the day we have been waiting for for so long and will be the beginning of the next phase in William's treatment, whatever that may be.

Tuesday, April 24, 2007

Some pictures to go with the post below

The London Marathon

This was an amazing day so this is a very long post.
In short, I finished it - YAY!! My time was 4:46:59. Pretty good considering the heat. I came 873 out of 1881 women in my class (vet 35) and 4551 out of 10854 in the whole of the women's race. To come in the top half, you would usually need a time of about 4:20 so that goes to show the impact the heat was having on everyone.

Here goes, I advise you have a cuppa in your hand if you want to read it all. Pictures will follow when I get them.

(Oh and if any Fetchies are here - this is the same as on the Fetch blog)

Before the Race

Wow, where to start? What a day! I have been so busy, getting myself and the family ready for the big day that I didn't get around to blogging about the Expo and my last preparations so I will blog today about the day itself and then go back in time and fill in the missing bits. I'm sure I will think of more things to say about this weekend over the next few days in any case as the surreal "marathon lag" begins to clear.

My marathon day started at 5:45 with breakfast of porridge and coffee. On Friday evening, I was asked to do a BBC interview with Jonathon Edwards before the start, so I decided not to take a kit bag as I was worried about getting everything done before the race. As it happened, the interview ran very well to time and I would have had plenty of time. It was one less thing to think about though.

On Saturday, I had felt incredibly nervous, a bit like the feeling when you have reached the top of a rollercoaster and are just about to go. The training had almost been like that slow and steady journey up to the top and then there is that sick butterfly wibbly feeling that it is now too late to get off and you are wondering if you will be OK, at the same time knowing that you will but that, with the exciting moments, will come some sheer terror. On Sunday morning, this fear had given way to excitement.

On arrival at the red start for my interview, I was immediately hit by the scale of event. I have watched it on TV for many years but there is nothing like seeing it for yourself. I was there at 8.00 and there were no loo queues so I popped in before looking for the BBC gantry. As I approached the scaffolding, I could see Jonathon Edwards who was to be interviewing me. With the enormity of the entire day filling me with excitement, I found that I wasn’t at all nervous about the interview – not until the first question anyway! Jonathon was so lovely and seemed to genuinely care about the story he was being told during our chat before we started. We did the interview and then I was called back as it had “broken up”. This was great as it meant I got a rehearsal! I haven’t seen the program yet but, from reading Fetch threads, it looks like the interview was seen only by the editors but our club photographer was there to show that it really did happen. In any case, it was great to start my marathon with a chat with a sporting hero I really admire and to be wished well by him.

After the interview, I made my way to the green start and, between queuing several times for the loo, had plenty of time for a little celebrity spotting. I must confess, I didn’t recognize everyone with the red stripes through their numbers but did see Evan Davis, Nel ? – the model, the two blondes from Eastenders and Adam Hollioakes who was running with his Dad and members of the Surrey Cricket Club in full cricket whites for a special Fund set up for CHASE in memory of his brother. I saw them a few times through the course and, with the CHASE connection, was able to start a conversation.

I met up with some of the GFA runners from out club and, before long, it was time to line up.

The First Five Miles

I have to confess, I started too fast and have learned my lesson! The green start gets off pretty well and you can hit race pace (or above) within minutes. I did notice my Garmin reading 8 minute miles at one point and kept trying to slow down but was running at 9-9:30 a lot of the time at the start. I was under my targets at each mile marker for quite some time and did get some hopeful notions that, perhaps, the heat was good for me and this was going to be a great run.

The atmosphere was fantastic. The start took us along residential streets where families stood on the pavements eating toast and sipping coffee. Then we passed churches and other religious buildings where congregations were singing and playing. It was such a fantastic window into the Sunday morning lives of residential London. Further along, we passed the first of many pubs offering a party atmosphere with music and dancing. I think I heard 100 miles by The Proclaimers about 4 times along the course. As we approached the 3 mile mark and merge with the blue start, we played Oggy Oggy Oggy. Everyone was in great spirits.

The merge was fun with much friendly ribbing and booing. I think I crossed over at the right time! I had my first water at 3 miles and my nutrition/hydration plan came into action. Water every 2 miles, gels at 8, 12, 16 and 20 and an ample bag of jelly babies in my pack. The mile markers came fast at first but, oh, how far away they felt later on.

5-15 Miles

Coming into Greenwich was exciting as it is the first of the views that seemed familiar from watching it on TV. It is a shame that we didn’t see The Cutty Sark but the BBC cameras were there up on the crane so everyone was excited and waving up at it.

From about 8 miles, I began to look forward to seeing my family, somewhere near London Bridge Station between 12 and 13 miles.

Tower Bridge was amazing, what an atmosphere! I work part-time (though at home most of the time) for BLISS, the premature baby charity. Some of my colleagues were on the bridge under a big yellow balloon arch. I spotted them and waved and heard a huge cheer. I felt great, until I saw two BLISS runners just behind me and everyone looking at them, no-one at me! Oh well, it is hard to spot a runner in the pack. Unfortunately, this proved only too true. My family were also on the bridge and I didn’t see them and they didn’t see me either. I thought they may have gone on a little further so kept on looking. I was encouraged by the strangers calling out my name and offering goodies. Those orange quarters were amazing and will be top of my list for supporters in future marathon (yes, I am saying future and I knew I’d do this again as soon as I finished)

I was still feeling good and still on target, although no longer with minutes to spare.


By 15 miles, it was clear that I had missed my family. I felt really down about this and sad when I say banners for “Mummy” that I hadn’t seen those my own children had made. At this point, the race began to get harder and I began to feel the heat. Every St Johns Ambulance point seemed to have an unconscious runner on oxygen and I passed a guy on the road, surrounded by about 5 first aiders, begging them to help him. This began to frighten me a bit, especially as I did feel the odd wave of nausea and, at one time, even began to feel a bit cold and shivery. I made sure I was drinking enough and poured the end of bottles on my head. It took a couple of times for me to realize my cap was water resistant and to remove it before doing this and running through the showers. The showers were heaven and these, and throwing water on myself, made me think of water fights in the summer. That refreshment that follows the initial shock you get when the cold water hits you. Fantastic! I was beginning to fall behind my 4:30 schedule but, with so many people collapsing and stopping for other treatments, I decided to focus on just getting back in one piece.

By mile 18, I began to feel a little disorientated and loose track of when I had last had water and what my race plan was. I was also worrying about my family and wondering if they had made it to London. I began to focus on getting Fetch Central and mile 22 and counted down the miles before I would be there. It was at this point that I decided to walk through water stations to cool down and take a short break. Miles 19-21 were really hard and I did have to take a couple of short walking breaks, just for a couple of hundred yards or so. I saw more and more casualties and was beginning to feel very emotional. My worries about my family got bigger and, eventually, I decided to call them. Paul was struggling with reception due to the crowds and so the phone seemed switched off. I left a message but, after a while, had convinced myself that they had had to take William to hospital and I was stuck miles from the finish, not knowing what was going on. I even considered leaving the race to find them. I lost it then and had tears streaming down my face. I thought about all the people who were behind me and had sponsored me and I had to finish. At mile 21, I started looking out for Fetch Central. I was convinced I had missed it before seeing the countdown banners. They were a fantastic sight, not much less so than the countdown to the finish line. A had always told myself that, from there, it was my short training loop home. Knowing I was now approaching so many people that had encouraged me so much on the Fetch website added to my emotions. I felt so invigorated as I approached and had regained my stride. I waved, but didn’t stop. I think if I had stopped for some hugs, or even a high five or two, I would have been totally overcome by emotion and blubbed about my fears that Wills may not be OK. I got a glimpse of everyone and can still remember the faces I saw. I really needed that cheer and the sound of it, together with such happy faces, carried me to the end. Thanks SO much guys!!! You may have felt I didn’t need you too much as I ran straight past but, oh boy, I did and I ran away from you with more tears in my eyes.

The Blackfriars underpass followed soon after and I felt very weird in there. I think it was the lighting, but I felt sick and dizzy and almost a bit panicky. I didn’t know whether to run fast to get out of it or walk. I opted for a combination of the two. I soon felt better when I got out and soon saw mile 25. I completely forgot to look out for my running club here as I was so focused on getting to the end. The atmosphere was great and people called my name whenever I took the odd walk break. This so encouraged me and, in the end, I found the strength to run to the end. The last stretch was fantastic. I felt strong again and the sites and emotions were amazing. Suddenly, the countdown banners were there and then the finish line. I was amazed to hear the tannoy congratulate us and announce that we were in the top half. I had taken so many walk breaks, albeit very short ones, and couldn’t believe that over half the field were behind me.

My chip was taken off and I was given my medal. I am used to taking it at races so I tried to take it off the lovely lady who was trying to present it to me. I was still worried about William as I still could not get hold of Paul. I tried to put this to the back of my mind as I posed for my photo. The time it took to walk to Horse Guards was awful as I just wanted to see if they were there. My legs were really hurting too. Eventually, I got there and felt almost claustrophobic in the huge crowd. I could see the CHASE banners among the mass of people, balloons and flags and made my way over. Then I hear Paul calling me and physically felt a wave of relief come over me. The tears came back and the whole family had a hug as we walked to the stand. They took my photo and I wanted everyone on it, much to William’s disgruntlement. I was presented with a glass of champagne which I sipped along side my recovery drink. I was in the first half back for CHASE out of 40 and this, together with the announcement at the finish line, made me realize that, in the conditions, I had done better than I thought. I wondered about all those I had seen in trouble and hoped they were OK. We chatted to people at the stand for a while and headed to the pub where I said a quick hello before leaving to go home.

Thursday, April 19, 2007

Difficult discussions

Today was a real down to earth with a bump day from the excitment of the FLM. I took William to see his local paediatrician this afternoon. These appointments are more about me telling him what I am concerned about and asking him of his ideas about William in general. The specialist consultants sort out the specifics of his treatment. I was hoping to get to the bottom of what is causing abnormal patches on William's chest x-ray but got the usual, no-one really knows, kind of response. I told him I am concerned about the fact that William has less energy than usual these days. It may just be that he has had so many infections lately or it may be that there is some chronic infection that we have not yet identified. The difficult thing is that it may be that the degenerative aspect of William's syndrome progresses more quickly when he is unwell. Unfortunately, this is most likely as his examination showed that his reflexes are less brisk and his foot deformities and associated high tone in his tendons have worsened.

Everyone is waiting on his bowel transplant assessment. He can't go on getting poorly with infections if this is causing general deterioration. There is also a very real danger of running out of sites for his hickman line if he carries on getting so many line infections. I hope that they will accept him for transplant and that, perhaps, he may even go on the list straight away as, although his liver is OK at the moment, his lungs are being damaged by the bugs in his gut and there is a very real threat to his long term feeding if we run out of line sites. After the appointment, I had a meeting with William's community nurse and a nurse from the hospice to discuss what we want for his end of life care, should this be needed. We all hope this won't be for a very long time but plans need to be made while we are thinking straight. It all needs to be right and it is the last thing we would be able to do for him. In many ways, we are lucky because we know that there is a chance William will die in childhood. We can make plans to ensure, if this happens, it happens in the best possible way for William and the family. We now have a plan about getting William to the hospice if we reach an end of life situation. Once there, they would help and guide us through everything and we can stay there as a family until it is time to say a final goodbye. I know Hope and Ellie read this blog so will stress again, there is no reason to think this plan is needed in the near future. It is just in case. William is on good form at the moment and has just finished his latest course of IV antibiotics. Fingers crossed, he will stay well for a good long time now.

Thursday, April 12, 2007

School holiday fun

I am happy to start this blog entry with lots of happy photos of family days out in the Easter holidays. We went to Godstone farm on Monday where all 3 children had a lovely time. We had a picnic there and William joined in with his wooden food. He won't touch real food but loves to join in and pretend. William still loves the sheep best of all the farm animals. On the way home, we popped up to the view point at the top od Addington Hill. This is on my favourite running route but, as you can imagine, it is a tough run getting to the top. The views are well worth it though. It didn't feel as rewarding getting there by car but that is the only way Paul will see it in the foreseeable future!

Unfortunately, Paul did not enjoy the day quite so much as he managed to break his hand karate chopping the sofa in a moment of rage on Monday morning! This is a bit of a nightmare as he can not do any TPN or IV drugs because a hand in bandages and plaster is not really condusive to sterile procedures! This is particularly difficult with the London Marathon fast approaching. We were relying on Paul flushing William off his TPN - I may have to run a little faster! Luckily, the head of clinical services for the Hospice will be on the CHASE stand at the end so, with a bit of alteration of the timings William goes up and down from his TPN, she will be able to flush him.

Today, we went to the London Aquarium with our CHASE community nursery nurse. We had a great time and William enjoyed the fish, epecially "Nemo". All 3 children had a lovely day, although Wills was somewhat tired following another exciting day yesterday when he re-discovered the rolater we have been tying to get him to use. He has had it a few months but never really wanted to use it for long. Suddenly, he has found how much steady he feels using it and loves it. He took it all around our local park with Joldin, our respite nurse, yesterday. No wonder he spent all day cuddling into "magic blankie" and wanting to be either in "Charlie Chair" or being carried. It is a feature of William at the moment that we get good days and bad days. it would be nice to see a longer string of good days.

Yesterday was an exciting day for Hope and Ellie as well. We joined the ques of hundreds of young girls and teenagers snaking around the Whitgift Centre in Croydon to have their books signed by Jacqueline Wilson. It was well worth the wait. The crowds meant that each child only had a few seconds while their book was signed but it was so exciting for them. Hope told her how she is writing her own autobiographical book about growing up with William and Mum in and out of hospital. She had a special message written in her copy of Jacqueline Wilson's childhood autobiography, Jackie Daydream, wishing Hope well with her book.

Sunday, April 08, 2007

Happy Easter (and a fortnight to go...)

Happy Easter everyone!!!

It has been a busy few days. We have had teething problems with the new TPN pump and some hitches with the bloods we have been taking for William's IV antibiotic levels. Things go wrong with equipment and procedures all the time, take my computer and recent death of my mobile phone for example. These things cause us huge problems, we loose people's phone numbers and, until my computer is fixed, I have no access to all my photos and most of my music collection. Medical equipment is a different thing alltogether and causes us HUGE amounts of stress when it goes wrong. It always seems to at holiday times too. It was Christmas when William's hickman line split. The pump teething problems are difficult, not least because those who would normally be our support system in such matters are not yet fully used to the pump so are none the wiser about the problems we are having than we are. The pump is fine, it is the giving sets that tend to leak or occlude... Yesterday we had to start again with the old (and now illicit) one but today, so far so good. It took us 3 attempts to get William's blood test right though. First we used the wrong bottle, next time the sample clotted and the ward told me to throw it away. We were later told by the doctor that the blood cells were meant to clot, leaving the serum in which the drug levels are tested. It was a special bottle and a special test. I think people can assume we know everything because we do so much for William at home. We are still on a steep learning curve though and this antibiotic (amikacin) is not one we have used at home before. Well, we know now so that is one further step up the curve.

Despite all this, we managed to have a lovely family Easter. The girls enjoyed the Easter egg hunt after church. The Sunday School leader had thoughtfully bought William a magnetic scripture verse for his wheelchair as he can't eat the chocolate. In place of eggs at home,among other gifts, William was pleased as punch to get Thomas, Percy and James T-shirts and a Henry to add to his engine collection. He is OK at the moment but very pale and tired. He is really lacking energy to play for more than short periods before needing a cuddle with his "blankie" to re-charge. We plan a day at the farm tomorrow so hope the fresh air will give him a boost.

Today is 2 weeks exactly until the London Marathon. The scary thing is that there is now nothing I can do to get any fitter for the day. I missed a lot of training last week with a bug and, rather annoyingly, the sunny weather has bought hayfever with it for me so my asthmatic lungs are beginnng to ask me what on earth I think I'm doing! Not in a big way though (so Mum, don't worry!!!) more with some irritating little coughs and sratchyness and the need to puff on the inhaler a bit more regularly. It is easy at this stage to find every run, no matter how short, harder than the 20 mile runs done over the last few weeks and, therefore, panic about finishing the marathon. This is normal and termed by some "taper madness". Training tapers down now as there is nothing that can be done to improve fitness and rest and relaxation to muster strength for the day is the priority. I guess, it is like stuffing up your lines on a dress rehearsal and forgetting that you know them like the back of your hand. I have been looking over my training schedules and seeing how far I've come (literally as well as metaphorically!!!) and am confident that, as long as I don't catch any more bugs in the next few weeks) all will go well on April 22nd. I am really looking forward to it. Including some more money raised offline, I have now reached my target of raising £2 000 for CHASE Hospice Care for Children. If you have been following this blog, you will already know how much they do for our family. I hope to raise a bit more over the next few weeks, not least because Paul hasn't sent the plea to his friends yet as he is saving it for the last minute when the marathon is on people's minds. It would be wonderful if I could reach £2 600 and make it £100 per mile - that would be such a good motivator in those last, painful miles.

Thursday, April 05, 2007

Home, but stressed

We are home again - only just. After a complicated day of plans and changes to plans, one person happy for us to go and another not... William is sleeping in his own bed, Hope and Ellie are arguing in their bedroom and I am on the sofa with a cup of tea in hand. The house is in rack and ruin around me with bags and piles of stuff bought backwards and forwards from hospitals over the last few months. It seems we are never quite sorted from the previous admission before back in again. I must admit, it is starting to get hard for all of us as we just can't get a decent run of relaxing and enjoying being a family without another panic as William is spiking a temperature again. I am finding our current fragmented existence very difficult and tiring.

William is well in himself but still has resistent pseudomonas bacteria in his intestines and lungs and still some floating about in his line. This is why we nearly didn't make it out of the hospital door. William's IV antibiotics had to be changed and, ideally, he should have a couple of doses to make sure he is not going to react and blood levels done before coming home on them. Luckily, after much discussion and compromise, it was agreed that we can come home with William on a monitor (he will remain on a monitor overnight now as an alarm to indicate increase in heart rate is the only way we would know if he was spiking a new temperature and could be indanger of septic shock ) and us being extra vigilent and his bed being kept open for 24 hours just in case. Sometimes, I can just live with the fact we are staying one more night but, this time, William is fine in himself and we want to be home together for the Easter weekend. Wherease, in the Chelsea and Westminster, we can at least relax and make a drink and some food in a microwave, our local hospital have declared it against health and safety for parents to use a kettle so you can't even make a cup of tea. That makes such a difference and I think my mental health and safety is much more compromised by being denied this basic thing than my physical health and safety could ever be by the tiny risk that I may scald myself.

A further complication to the day has been William's TPN pump. Our pump has been withdrawn and we were given a new one a few weeks ago. Rather worryingly, given the huge infection risks with TPN, the new giving sets leaked so we were told to go back to the old one. The old one was finally withdrawn at the end of March so, since then, would not have been replaced if there was a problem. I must add, its withdrawal has nothing to do with any problems in it's function to deliver TPN. Our TPN company found out we are still using the pump today, even though we were waiting for them to tell us when the problems with the new one were ironed out. We were told to stop using it immediately and that new giving sets with the initial problems resolved would be delivered to us today. These came too late for William's hooking up time so I used the old pump. Our nurse rep from the company phoned with a sigh and silence, followed by, "I just hope nothing goes wrong with it tonight" - why on earth should it when it has been fine for the best part of a year!! I am certainly not in the mood for spending half the night making sure there are no leaks. The rep is coming out at TPN time tomorrow to talk us through the new pump again so, all being well, we will start using it again then.

The reason the new giving sets did not arrive is the same as why poop Paul spent 11 hours on the roads today collecting the girls from Mum and Dad in Stoke. The poor things were stuck in horrendous holiday traffic! Paul had to go straight out again to collect all William's IVs and is only just arriving home now.

Well, I have babbled on enough. I'm sure the mood of Chez Milne and Hopwood is ringing out from the screen. We are all pretty tightly wound right now (well, actually, the children are pretty chilled as Hope and Ellie had a lovely time Mum and Dad's and William gave a content little wiggle when being put into his own bed) Paul and I are pretty tightly wound though but a glass of wine and cuddle on the sofa will soon solve that!!!

Sunday, April 01, 2007

Not a good start to the Easter hols

On Wednesday, I was hoping we would just be in the hospital for 24 hours before William was declared fit and well and we were sent home again. Unfortunately, this was not to be and we are, once again, in the only too familiar world of separation. Wills in the hospital and me splitting myself between home and hospital. At least we are still in our local hospital and, up until Friday, I was able to split my time between William and the girls as Paul is home on Easter Vacation. However, this latest stay in the hospital has con-incided with Paul's return to some resemblance of his singing career and he has had 2 gigs this weekend, one taking up a whole day in Nottingham. So, the girls are back with Grandma and Grandad. It is heart breaking to be spending the start of yet another school holiday apart. They will come home later in the week, whatever happens, as with Paul home, we can at least share our time between the girls and William at the hospital and we hope to have him home later in the week. We had hoped he would be home tomorrow but, Wills being Wills, has had his good days and bad days and the consultant informing us that, if cultures are clear and Wills has no more temperature spikes, we could go home on Monday. Needless to say, William did spike today and has had to have a third IV antibiotic added in so we will be in hospital for at least 48 hours longer. He is still "neutrapenic, meaning his neutrophil levels are still very low and he has little immunity to infection. This means strict isolation and he is not allowed out of his room. One upsetting thing is that William's chest is very bad at the moment and, after looking at his X-ray, a doctor came in happily to inform me that it is fine, at the first look she thought it was looking rough but on comparison to an X-ray taken in January, it is the same and the "three patches" are "chronic changes" rather than acute pneumonia. I wasn't really sure this was good news!!!

I am so fed up with our "stop start" family life. With William and Paul's leg it does get too much. I have a lot more to say about this and other things but Paul is waiting to take me out for a meal to chew the cud and cheer me up! So, I will be off now and will blog more when I get the chance.