Monday, 31 May 2010

Another Update...

I’m afraid that The Weekend (Part Two) has been canceled. I did intend to do another blog entry, but alas I got to caught up doing ‘normal’ things like work, playing with the kids, watching television and then to top it all off (and this is the real clincher) I had a stint of going to bed at a reasonable hour. Apologies to anybody who has been particularly looking forward to the details of what we did the Sunday before last. All I can offer are these brief highlights.
If you can remember back that far it was hot and sunny and Adam very much wanted to have the paddling pool out. Swimming, paddling pools, and playing with water generally, present two problems. First Adam’s Hickman line needs to stay dry, and second it doesn’t matter what activity Adam engages in we always worry about the risk of infection.

But it was really hot, and Adam really wanted to have the paddling pool out. So after a bit of ‘shall-we, shan't-we?’ we decided to let Adam have some well-deserved fun. We wrapped him in a good helping of cling-film and sealed everything up as best we could with a number of surgical dressings. Not their intended use, but we didn’t really care. And for the next few hours Adam played and splashed and laughed and shouted. When the paddling pool started to lose its attraction I got the sprinkler out. Almost one year since he last played outside with it on Adam was running around like a little boy without a care in the world. It was such a lovely day. As the sun began to fade we all sat outside and ate tea. And just for a little while we stopped worrying or wondering and just enjoyed the day for what it was.
During the week that followed Adam spent longer at school than he had at any time in the previous 10 months. Monday through Friday he went for first playtime after 10am and then stayed through until 1pm, having his packed lunch alongside the other children. The last time Adam had lunch at school was early July 2009. He expressed a desire to stay for the whole of the afternoon too, but when his Mum went to pick him up it was clear he was ready for home. He simply didn’t have the stamina for a longer stay. However, after a couple of quiet hours at home resting up he was more than ready to start playing again when Jake and Jessica returned home from school.
Since Adam's last session of chemotherapy things have been different at home. The side-effects of these drugs have been less severe. Adam has been well in himself both during and after, and hasn’t required any supporting medication other than the normal pills and supplements. No transfusion, no hospital visits other than this morning for a full blood count. His counts had been holding up extremely well until the end of last week. They then dipped a bit so that his Neutrophils (the infection fighting component in white blood cells) fell to 0.8. His platelets are now 163, having been over 200 for most of the last two weeks. So we don’t yet know if he’ll be starting chemo again tomorrow, or have to wait until next Monday. The magic numbers are 1.0 (Neuts) and 100 (Platelets) so it’s borderline at the moment. Unlike several other occasions I’m less concerned that chemotherapy starts this week rather than next. I’m not entirely sure why to be honest.
Some of the changes we’ve made to support Adam - organic diet, supplementation, fresh juicing, goat's milk, apricot kernels, cutting out sugar, Life Mel honey, Traumeel S, and others are progressing quite well. The major challenge is Alison’s - trying to fit everything into some sort of daily routine. One of the supplements, for example, requires no other intake for an hour or two either side of it. We’ve made a start but there is still more to do. Nuts and seeds, in particular, haven't met with a very positive response.
This weekend has been another fun one, this time despite the weather. On Saturday Adam attended the Cancer Research UK Little Star Awards Party at London Zoo. Of the 301 children who received a Little Star Award in 2010 for their bravery in battling Cancer, 21 were invited to the party to represent the larger group. The party itself was held in one of the function rooms and both Adam and Jessica enjoyed themselves. Then afterwards we spent 2+ hours wandering around London Zoo looking at the animals. The Lions, of course, were sleeping as usual.

Thursday, 27 May 2010


I have come to realise there is a major downside to blogging that I hadn't foreseen when I started out down this road. I must be rather boring to talk to these days (I know, I know, I can hear you in your droves telling your computer screens that I was always boring to talk to. Ha ha ha.)
Anyway, my reasoning is this; almost exclusively the only things I have to talk about are Adam's Appeal and Adam's health, and a lot of people seem to read what I write either on here or elsewhere in the social networking universe. Consequently, more often than not, I end up repeating stuff people already know. Without really realising it at the time because it's not like I have actually told them before. Not face-to-face. And anyway how do I know who's read it and who hasn't until it's too late.
On a related topic, kind of the opposite of the above (and just in case this happens to you in the future, I am really extremely very sorry in advance.) I have developed the ability to hold a perfectly lucid conversation and then a few days later have absolutely no recollection that it ever happened. I may even deny it to your face. Whilst Alison is the major victim of my affliction it has already caused me wider embarrassment. What started off as me losing my train of thought and not being able to remember the end of sentences has developed into me losing my mind and not being able to remember entire conversations.
Anyway consider yourself warned. Yours ignorantly.

Wednesday, 26 May 2010

The weekend (Part One)...

(This is another one of those bloody posts that are becoming rather a habit with me. Upbeat and full of good news, good times and good spirits. And then spoilt by a priority interrupt that comes in mid-flow and goes straight on the blog without pause for reflection. Inconsiderate, downbeat, downcast, ‘I don’t care what other posts I ruin’ entries that come from nowhere and afflict my blog from time to time. So now I find myself having to go back through the first half of the original draft of this post and edit it because otherwise it’s obvious it was written before the last one and then posted afterwards, and to be frank looks a bit rubbish as a result...)
Stop the presses. Hold the front page. Breaking news - we had a fun weekend. A real bona-fide, hardly any worrying, very little fretting, fun weekend.
(See what I mean? I can’t use that verbatim now. Would have been fine had there not been another post of any kind since last weekend. Because there was it doesn’t really read very well any more. Probably need to get rid of it.)
Friday had been a good day. One week after the end of chemotherapy and Adam’s blood counts were way higher than they’d been for longer than I could remember. HB over 11, platelet’s over 200 (normally hovering around 10), Neutrophils at 1.8 (normally at or near 0). No wonder he had remained in good spirits. In the evening on Friday there was a shopping event to raise money for the appeal, organised by the teaching staff that looked after Adam when he was in reception at Downsend. Not only was it a huge success, but Alison even managed to get out and enjoy herself too. The last time she’d been out anywhere Adam had cried for her to come home before he would go to sleep. No such problems this time. Whilst I’ve devoted a lot of time to the appeal, Alison has been doing far more important work – looking after Adam. However, I know she sometimes feels that shFFe would like to be able to be more involved given how much amazing support we are being given. So being able to attend on Friday and staying behind to help clear up afterwards was a definite positive in that regard.
We woke up Saturday in glorious sunshine and wondered what to do with the day. No nurses required, no hospital appointments planned, we were free to do what we wanted. London Fire Brigade Clerkenwell and Islington had teamed up to hold a collection day for Adam’s Appeal at the Fire Station on Islington High Street. Like many other events that have been organised it was one that would be nice to go along to show support, say thank you in person, and meet those who were responsible. In many cases, as in this, people to whom we are complete strangers, but who have stepped forward to help our little boy in any way they can. However, I hadn’t really thought I would go, and even less chance that Adam would be there. Eight days after Adam finished chemo, the journey from Epsom to Islington, competing demands from Jake and Jessica - highly unlikely.
We seldom plan very far ahead these days – it generally doesn’t work out if we do. You make plans, something happens and you have to break them. So Saturday morning we got to talking about what was on the agenda for the day – party for Jessica the only real plan, and possibly visit to friends in the evening. Maybe Islington was a possibility after all, I mentioned it to Adam and he seemed okay with the idea. All he wanted to do was to have lunch at Wagamama. I figured there must be one there, but we packed up lunch just in case it didn’t work out and off we went.
We arrived at Islington Fire Station shortly after midday, and the fundraising was in full flow. I still find it odd to witness scenes such as this. A giant Adam’s Appeal banner strung across the front of the fire station with a picture of my little boy on it for all to see. The fire crews were out tin rattling, the sun was blazing hot and the street was full of people. We met Mandy, who had organised the collection, and other members of the Islington and Clerkenwell crews who were collecting too.
Since we started the appeal, there have been some amazing stories about how people have become involved. None more so I think than the London Fire Brigade. Around the time the appeal was launched a fireman cleans the windows of one of the assistants in Adam’s nursery class at Downsend. He is shown details of the appeal and donates his window cleaning fee. Not content he goes back to his station and gathers support to start fundraising on a bigger scale. Ilford fire station pick up the gauntlet and an email gets sent out across LFB. From this Mandy at Clerkenwell decides to get involved. But the location of the station at Clerkenwell is no good for holding a collection, so she gets Islington involved - and hey presto here we are. The London Fire Brigade at Chiswick, Ilford, Clerkenwell and Islington, all supporting and fundraising for Adam’s Appeal.
Adam enjoyed himself. He got to sit in various fire engines and then took himself off and set up camp in the command unit. I watched the fire crews collect donations from passing shoppers and walkers, and even from taxis, a bus driver, and other passing motorists. I’ve got to be honest, I can’t do it. I couldn’t stand on the street and rattle the tin and ask for donations for Adam. Not like Mandy in particular did. I tried it and I was rubbish. Which is both odd and a bit wrong. I ought to have more incentive to do it than anybody. I think I’ll have to work on it. It’s not right.
We stayed until about 4pm and then drove home. What impressed (should that be surprised?) me most was that during the entire time we were out - in the car going, at the fire station, and in the car coming back, Adam did not moan or whinge once. Oh, and in case you were wondering he did get his lunch at Wagamama. Had to walk from one end of Islington main street to the other for it though. Chicken with noodles. I wasn’t very impressed, however, when Adam asked for more chicken. ‘We don’t do portions of just chicken, you have to order another complete meal, sir’. ‘But that’s just a waste’. ‘Yes it is, but you have to order a complete meal, you cannot just have more chicken’. ‘And you have to be slightly more helpful if you want a tip, thanks’.

Tuesday, 25 May 2010

Welcome to my world...

One minute I'm happily typing away about what a great weekend we had, and how much fun little Adam had visiting the fire station and playing around in the garden with his sister. And the next I am tumbling into the depths of despair ending with me sobbing into the keyboard. Who am I kidding? There isn't going to be a happy ending. No miraculous recovery. Look on the internet. Read the stories. It's incurable.

And then I pull myself together again. This may all end up being true, but does it make any difference? No it does not. Because while there is life there must be hope. I'm forever drumming into the children these three words - 'Never Give Up'. This is not the time for me to start changing my mind now. Practise what you preach.

Lunchtime. Then back to the weekend's events.

Welcome to my world.

Thursday, 20 May 2010


Adam completed his first week of the new drug combination on Friday without major incident. Five capsules of temozolomide taken orally one hour after lunch, a one hour break, and then a one hour infusion of irinotecan administered at the hospital. The biggest problem, compounded by the fact that until Friday he was still on IV antibiotics, was the late finish which meant we needed arrangements for Jake & Jessica coming out of school. Even that wasn’t a major issue, we know help is never far away.

Adam stayed quite well in himself throughout the whole week of treatment, and that has continued into this week too. There’s no clearer indication of this than the fact that we’ve hardly taken his temperature. The only time I can recall was on Sunday when Alison took it ‘just because we hadn’t for so long.’ My contribution was to inquire why on earth he had a tempadot in his mouth. He’s not currently being given GCSF as this chemotherapy is (supposedly) not as severe on his blood counts as the others he’s had. Consequently we are not seeing as much of the community nurses, and we didn’t need to travel up to Epsom over the weekend either. So far his counts have held up okay, but 5-7 days is the time that they reach their lowest point, so we will have a complete picture by the coming weekend.

The most obvious side-effect (or what we assume is a side-effect, as we’d been warned it would be) is Adam’s frequent toilet trips and bouts of diarrhea. Tummy ache, diarrhea, sore bottom. Over the months we’ve become accustomed to trying to get him going to the toilet again after chemotherapy - fast and loose is a novelty. I went up to the hospital today to get some special anesthetic so hopefully that will help ease the soreness.

When school was shut for polling day Alison took Jess and Adam to Chessington for the day, and Adam was back there again on Monday with his Mum. This time, however, he didn’t manage to stay on the runaway train for five turns in succession as he had on the previous occasion.

When we were at the Charlton - Leeds match at the start of May it was mentioned to Adam that he should come back one day as mascot. With Charlton in the play-offs he was invited to fulfill that role on Monday in the return leg of their semi-final against Swindon. What an amazing night he had. Adam is definitely no longer phased by being around footballers, or television cameras, that’s all I can say. He went round the Charlton dressing room and collected signatures from everyone. He went round the Swindon dressing room and shook each player by the hand. He stared the Sky cameraman down in the tunnel. He was just so full of life, and so happy. He was doing what a little boy should do - I even had to tell him to stop jumping around so much when we were waiting for the Swindon players to arrive! Poor little fella can’t win!

I’d decided in advance that we wouldn’t stay for the game itself, Adam’s health comes first. It didn’t take long for that to be proved the correct decision, he was asleep before we’d got halfway home.

Yesterday I went to give blood at a session being held locally. Much to my shame this was the first time I’d ever donated. I can’t do anything about the past, but I know I’ll never be the same person I was before Adam became ill, living in my own little cocoon world. I’ve seen too much, and been affected by too much. When I arrived home Adam came running up and gave me a cuddle. I asked him why and he told me it was because I’d had to have a needle in my arm whilst they took my blood. At least he didn’t tell me I’d been a very brave boy and offer me one of his stickers as a reward....

Sunday, 16 May 2010

A little message...

I could easily pick out hundreds of messages like this one. It just caught my eye as I was scrolling down the page, and brought a tear to my eye when I stopped and read it. People should know that there isn't a day goes by that we are not overwhelmed by the depth of feeling that Adam has aroused in people. There have been a few times when people have described us as amazing. Really we are not. We are just trying to do the best for our son. What is truly amazing is the collective spirit of giving that people have shown towards us and towards our baldy little boy.

Saturday, 15 May 2010

What could I say?

Jessica had forgotten to take a towel to swimming, so en route to Jake’s football Adam and I stopped off at the leisure centre. We deposited the towel and stood at the windows, looking in at Jessica and the other children enjoying their swimming lessons. After a couple of minutes Adam began to speak. Not angrily or upset, but softly with a tinge sadness.

“I miss going swimming”


“Why do I have Cancer?”


“Why can’t they just take it out of me?”


Adam starting to get upset “Why do I have to have Cancer?”


And more upset “I don’t like it”


“I really miss going swimming”


The silences were because I didn’t know what to say. I didn’t have any answers. I didn’t even have any words.

Sunday, 9 May 2010

At The Valley...

The second amazing experience was our trip to The Valley as guests of Charlton Athletic for the visit of Leeds United. The game was massive, a victory for Leeds would secure automatic promotion to the Championship, whilst a win for Charlton would maintain their own hopes of finishing second.

We arrived at the ground in plenty of time and went as instructed to the players entrance. Steve Allen, the head physio and Wallace Fields parent who had arranged everything, welcomed us to the ground and took Adam for a quick tour of the dressing room. We also met Daniel Davenport, who along with his brother and a mate had been out round the pubs collecting for Adam’s Appeal before the game. He’s also planned a collection on May 15th, FA Cup Final day, culminating in a public leg waxing and head shaving in his local town centre. Crazy man! We’d never met Daniel before, he’s simply somebody who was moved by Adam’s story and wanted to help. I find people like him - and there are several - inspirational. One day, when all this has passed, I want to do for others what they are doing for us.

Around 2:30 we made our way out on to the pitch, and 15 minutes later we were presented with a cheque from Charlton for £1,000 by their Managing Director Stephen Kavanagh. Adam was introduced to the crowd and invited to do a lap round the pitch, accompanied by Steve Allen and the rest of us. As we set off the crowd on the tunnel-side of the pitch began to applaud and I tried to persuade Adam to clap them back or at least wave. He was having none of it. I can’t remember what he said to me, but it was clear he wasn’t going to be clapping or waving. I thought to myself ‘this is going to be very long, and very dull’. I also can’t remember what prompted him to start running towards the Leeds end, but run he did. The Leeds fans responded by giving Adam a standing ovation. The video I posted on you tube doesn’t really do it justice, but the noise of all the fans behind the goal clapping was unbelievable. I took over where Adam had let me down and started clapping them back. My god, what a surreal experience.

As we turned the corner and headed back down towards the Charlton end the Leeds fans broke into song ‘We Are Leeds, We Are Leeds, We Are Leeds...’. The niceties had ended!

We were all wearing Adam’s Appeal t-shirts but beneath his Adam had a Charlton polo shirt that he’d been given when we first arrived. I thought it would be a good idea when we got to the fans behind the goal at the Charlton end for Adam to remove his t-shirt. I don’t think it made any difference really. The Charlton fans were fantastic, some were even leaning over the barriers and handing us money. When Adam got back to the tunnel he had a pocket full of notes and coins. The cheeky little toad even asked if he could go to the club shop to spend it. ‘We’ve got enough already, haven’t we?’ he said.

We took our seats to watch the match and I can honestly say it was a game of two halves. The kids watched the first half but had much less interest in the second. Something else quite amazing happened though. Alison, who is allergic to all forms or sport and can’t even bring herself to watch football on television, found herself enjoying it! When Charlton scored what proved to be the winner very late in the second half the crowd erupted. ‘Adam’ I shouted ‘Charlton’ have scored. ‘Good’ Adam replied ‘Now can you tell everybody to hush.’

We really did have a fantastic day, and I have nothing but admiration for Charlton for what they have done for us. The response in the days after the game, both from Charlton and Leeds supporters, was amazing too. With Leeds now having secured automatic promotion and Charlton going into the play-offs it would be fantastic to go back next year and do it again. All we need is for Charlton to do their bit and win the play-offs. Go on The Addicks!

Saturday, 8 May 2010

Glad All Over...

I'm going to write something nice on here, something upbeat. I know it’s been a while. There may have been lots of stress and strain in the Bird household over the past couple of weeks, but that hasn't stopped Adam enjoying two absolutely amazing experiences. Experiences to treasure for many years to come.

First he was the West Brom mascot at their Monday night match away to Crystal Palace. We arrived at Selhurst Park around 5.30pm not knowing what to expect, but from the moment we stepped inside the ground we could not have been looked after better. I can't claim that Adam is a football fan, we're not fanatical about the game in our house, but his Grandad used to play for the Albion in the early 60s, and every night he sleeps with a little cuddly Baggie Bird they bought him when he was first diagnosed.

We were welcomed in by some members of the Palace staff, and met by Simon and Lee who had travelled down on behalf of West Brom to look after Adam. Sort of like his personal bodyguards I guess. The two lads were a credit to the club, at least until they joined the throng for the match itself... can't vouch for them after that. We started off on the pitch down by the dugout area with Susan from Palace looking after us. What a thoroughly nice lady. And what a lovely smile on Adam's face as Baggie Bird - the 'real' Baggie Bird - came striding down to meet us. Baggie was great, a really friendly bird who kindly donated us the boots and goalkeeping gloves that he's worn all season! Who wants to start the bidding?

We got handed over to Jo who looks after all the mascots on match day. He was a lovely guy too (are you detecting a theme here?) He'd obviously handled a ton of kids over the years, and he really put Adam at ease. We went down to the dressing room area and Adam met and had his photo taken with some of the players. He would have met and had his photo taken with more but after a while he turned and said 'that's enough now, I don't want any more photos'. Clearly not starstruck then! The players were great, in particular Stephen Reid who welcomed Adam into the dressing room and Scott Carson who took care of him when he led the team out for the match itself. Before we left the dressing room Adam said to me 'Dad, I like that blue drink'. I had no idea what he was talking about. 'You know that blue drink you have sometimes when you go running'. Then it dawned on me, he was referring to a tray of powerade sports drinks that were in the middle of the dressing room. I can’t remember who it was that said he could have one, but next thing I knew he was drinking it. He drank the whole bottle, and I can tell you for the next 15 or 20 minutes he was buzzing!

We went out on to the pitch and all the mascots, Jo, and the two Alice the Eagles played a few kick-about games. Adam was hopping, skipping and jumping around having as much fun as I'd seen him have for ages. Ten minutes or so before kick-off the mascots had to go off and back to the dressing room area to get ready to lead out the teams. All parents had to remain outside so I was a little worried how Adam would react to being on his own and having me out of sight. I took him to one side and explained to him what would happen and then watched him trot off the pitch. I’d been prepping him for our trip to Charlton all week, and had told him that when we did our lap of the pitch the fans would (hopefully) all clap us, and he should wave back at them. As he came off the pitch at Palace some of the players came running off behind him. The crowd behind the goal started clapping and cheering and little Adam, unaware of what was going on behind him, looked up and started waving nervously back to them! Bless his little heart, not a chance of me explaining to him what really happened.

I waited just outside the tunnel area as all the final pre-match preparations went on. The teams come out when the Sky production team say it’s time, so we had a bit of hanging around until the big moment. For those of you that have never been to a live football match, one of the loudest moments is when the teams first come out on to the field. Watching on television never does justice to the true extent of the crowd noise. And so it proved on this occasion. Little Adam came out on cue leading the West Brom team, followed immediately by Scott Carson, the West Brom goalkeeper and captain. As the huge cheers went up round the ground I sensed for one second that Adam was going to do an about turn and run back over to me. But Scott Carson gave him a gentle nudge forward and out they ran together on to the pitch. Adam took part in all the pre-match formalities - the ceremonial handshakes (although he told me after that the first player on the other team missed him out.. ‘Maybe he didn’t see me, Dad’, he said) and the official photograph. And he got to have a little kick-about with Scott Carson too with a football that he was then given to take home and keep. Another nice touch I thought. Adam later told me that the ball was ‘a little bit too big and bit too hard’ for him to play with, and he’d hurt his foot when he kicked it! I hadn’t noticed watching from the sidelines, all I saw was the sublime skill and artistry of my middle-size footballing superstar.

We didn’t stay to watch the game itself, it would have been far too much for him. Because his chemotherapy had only finished the week before I didn’t really think he’d be up for going, but clearly I was totally wrong about that. As we drove back and approached home he said to me ‘When we get home I don’t want you to tell Mum anything. Don’t tell her anything. I am going to tell her it all myself’. If any further proof were needed that he’d had a thoroughly good time it was right there in that statement.

The week that was...

It's been just over a week now since we received Adam's test results and found out that he did not respond at all to the last 2 cycles of TVD. It wasn't the news we had hoped for, but at the same time we drew some immediate comfort in the fact that there was no progression either. In the week leading up to the tests Adam had complained of more aches and pains than at any time during the previous 6 months of chemotherapy, and that had ratcheted up my fear until is was almost unbearable.

Having had time now to reflect on the results they are obviously not good. His particular type of Neuroblastoma (one name many diseases) has become resistant to the most effective frontline drugs that are available to treat it. And nobody knows why. And nobody knows what it means. Has the treatment kept the cancer at bay? Or has it done nothing and the cancer has stabilized regardless? And what happens next? How much time do we have before it starts to spread again?

Personally my view has always been that I would rather have Adam in treatment than not. It's lovely when he has some time when his blood counts are up and he can get out and enjoy doing things, and we don't have to worry quite as much about hospital visits and transfusions and germs and infections. But at the same time he's got this time-bomb inside him and I feel that every day he is without treatment is a day for those cancer cells to go forth and multiply. I've said it before but I can’t imagine Adam not being 'under treatment'. Even when he gets to remission and completes traditional therapy we will always be doing things that (we believe) may improve his chances of staying cancer-free.

It came as a total shock to be told that the drug combination the doctors want to start Adam on next is classified as 'high cost' and can only be given after various approvals including that of his Primary Care Trust, to whom Adam is nothing more than a name and a bundle of papers. Adam's blood counts were good, very good in fact when compared to the same period in earlier cycles. With the Bank Holiday and the need for the drugs to be prepared the earliest he could have started treatment was Wednesday, so that's when I wanted him to start. There have been a number of instances when Adam's chemotherapy would have been delayed had I not intervened and advocated for him. Instances where protocol and procedure prescribed one course of action but with our knowledge of Adam's response patterns we felt we were sometimes better placed to decide. Better placed to decide than qualified doctors - I could never have imagined that 9 months ago. But I'm serious, and I'm not being delusional either. I'd wager that a lot of the doctors we've seen in our local hospital have never attended a case of Neuroblastoma before. I'm also pretty certain that Adam has received extra attention on one or two occasions for the same reason.

The medical experts at the Royal Marsden believe this new drug combination will give Adam the best chance of clearing his bone marrow - the first hurdle that we are still, 9 months into treatment, trying to get over. To me that was the only thing that was relevant. I just couldn’t get my head around the bureaucratic nonsense that followed. What was there to decide? Sure let somebody somewhere decide whether these drugs can be prescribed or not for any child. But don't have individual trusts playing God with our childrens’ lives. The trust have now approved the first two courses of treatment so we hope the next set of tests show a positive response and Adam can go on to have more if required. The tests in question will take place in around two months time, and it’ll be the fifth time we’ve gone through it all and hoped that Adam is ready to move forward. I think each time we become more resigned to the fact that he will still have detectable disease. When his results finally come back clear I will probably fall off my chair. In case you are wondering I refuse to use the word ‘if’ anymore, it’s always ‘when’.

As it turned out on Tuesday night we discovered a lump on Adam's bottom, just under the skin and painful to the touch. Alison took him to have it checked out on Wednesday morning and he was started on a course of two different antibiotics. Even that isn't simple anymore as he previously had an allergic reaction to one of the most common antibiotics and so is unable to be prescribed any penicillin based medication.

On Friday we had a follow-up appointment and there was no real change. So Adam was started on a 7-day course of IV antibiotics in addition to the tablets. His consultant thinks it could be cellulitis, in which case we hope we got it early and it doesn’t progress. This morning we were up at Epsom at 8am for the next dose of antibiotics and we’ll be back at 7pm tonight. But it’s fine - just a 15 minute or so visit. Compared to some of the horror stories I’ve read about children being cared for at other hospitals I think we are incredibly fortunate to have Epsom General as our local. Maybe it’s because it’s a small hospital, we know all the nurses, and there is no intensive care unit. Whatever the reason I don’t think we could have a better place to take Adam for all his non-specialist treatment.

We are back at the Marsden on Monday for another follow-up, and hopefully, fingers-crossed, Adam will be alright to start the new combination of drugs in the afternoon. If he doesn’t I can foresee another week of worry on the horizon.