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.

Hmmm...

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.

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’.

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.

Update...

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....

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.

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”

(silence)

“Why do I have Cancer?”

(silence)

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

(silence)

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

(silence)

And more upset “I don’t like it”

(silence)

“I really miss going swimming”

(silence)

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