You don't have to read it all at once...

I was going to start this entry with the statement that a week on from my last post Adam is starting to get back to his old self. When I thought more about that often used expression, of course it depends on how one defines ‘old’. When Adam was diagnosed and our world was thrown into complete turmoil people who had been through their own comparable experiences told me that as time went on our life would change and we would adjust to a new perception of ‘normal’ life. And that’s exactly what’s happened. Gradually, and without conscious effort, over the last 10 or 11 months. So when I say Adam is starting to get back to his old self, I don’t mean his old self, I mean how he was a couple of weeks back before the sickness bug and before his last cycle of chemotherapy.

His eating started to pick up at the weekend, to the point where Sunday was the first day in over week that he had anything remotely resembling three meals in a day. This morning was the first time in the same period that he’s woken up and shouted down the stairs ‘Mum, I’m hungry’. He’s lost more than 1.5 kilos in weight in the last week and a half, and it definitely shows. Normally it’s hard for us to detect changes in his height or weight because we see him every day. Providing he starts eating properly again we can now begin the task of trying to build him back up.

I mentioned before that when Adam was ill I had become worried, despite knowing almost certainly that he‘d picked up the same sickness bug as Jessica. Part of the reason for this was that his blood counts had begun dropping. When we started temozolomide and irinotecan we were told they caused less bone marrow suppression (leading to lower blood counts) than the chemotherapy he’d been on before.  So when his white blood cell count and platelets fell for two consecutive readings I became concerned. Being the first time he’d had these drugs we couldn’t look at how his blood counts had responded previously in the weeks following chemotherapy. We are also well aware that Neuroblastoma in the bone marrow, which is what Adam was diagnosed with and still has, lowers blood counts. If they go down for no apparent reason it could be a very bad sign, a sign that the disease has progressed. I don’t think I mentioned this before, but maybe now it’s (even) easier for people to understand why I became anxious last week. Once you start to become anxious about these things it’s well-nigh impossible to stop. 

On Thursday our community nurse took his bloods and called later in the day to give us the results. There was a real sense of relief when her first words were ‘I have Adam’s blood results and they’re another good set’. His neutrophils and platelets had started to go back up again. I can’t tell you if the worry and anxiety was all very stupid and unnecessary on my part, I can only tell you that’s how it was.

On Saturday, we went out in the afternoon for Jake’s football club awards and end of season party. Adam demanded I fetch all of his football tops (most of which are actually Jake’s old ones) so he could choose which to wear. It was a lovely afternoon / evening and Adam enjoyed himself playing outside with the other kids. He was clearly running on empty though, and frequently resorted to sitting on the grass and watching everybody else. It was perfectly understandable and explainable given he hadn’t eaten a proper meal for 8 days, but I couldn’t help thinking back to last July. Adam would be playing in the garden with Jessica and Jake and then come over and have a lie down on the swing-seat, resting his head on Alison’s lap. I can picture him doing it now as if it were yesterday. As we now know only too well it was symptomatic of this horrible disease. I think we knew by that time that something was wrong, but never did we consider a ‘catastrophic diagnosis’ - as it was called to by our GP when I spoke to him soon after Neuroblastoma had been confirmed. 

This week Adam has another full set of examinations that will tell us how he has responded to the new chemotherapy, and determine what happens next. On Wednesday he is at hospital to get a cannula fitted and have his radioactive injection. On Thursday he has a full body MIBG scan. On Friday he has the dreaded bone marrow tests - ‘my holes’ as Adam affectionately refers to them. Then we begin the stressful wait until our appointment with the consultant next Friday. Provided the results do not show clear evidence of progression Adam’s consultant will make an application for funding for further cycles of the same chemotherapy. We haven’t spoken about what happens if there is progression. I don’t really want to go there. Pack our bags and get our flights booked I guess. Uncertainty is a such huge part of the ‘new normal’ I spoke about earlier.

Changing tack slightly, to date I haven’t written much in the blog about the appeal itself; it’s simply not how things have turned out. Clearly the appeal has been very successful; we have raised a huge sum of money in a relatively short space of time. The website, blog, facebook and twitter have all played some part in that. Other than wanting to have a strong online presence, and somewhere to report Adam’s progress there was never a strategy of how things would shape up going forward. The blog has become what it’s become. In the beginning I never envisaged it to be as it is now. 

We have been incredibly fortunate that since we launched the appeal in March so many people have wanted to help, and wanted to get involved. News of the appeal hasn’t just spread through our online presence. Even more powerful has been the word on the street, or should I say playground. You only have to look how Adam’s Appeal has spread from one school to another, starting at Wallace Fields and Downsend Epsom Lodge. From there we have seen collections, donations, mufti days, cake sales and more from school after school. Most in and around Epsom, but some farther afield.

I really hope that everybody who has put themselves out, raised money, completed sponsored events, held collections, washed cars, baked cakes (the list really does go on and on) knows just how much we appreciate what they have done. Ultimately (as I sometimes have to remind myself) it’s not about raising the money in itself; it’s about getting Adam cured of this disease. Regrettably the money that is being raised might, just might, be the difference between him being cured and not being cured. That’s why we launched the appeal. Believe me, it wasn’t an easy thing to decide to do, but ultimately I didn’t want to be faced with a situation where I looked back and regretted not doing it when I had the chance. I said regrettably because no parent should have to raise money to ensure their child has the very best chance to beat this disease, or indeed any disease. However, that’s the reality of the situation and it’s not something I can do anything about. To have so many people behind us and willing to do whatever they can to help Adam get better is quite overwhelming when I have time to stop and think about it. I don’t know what else I expected when we started. I don’t really think I thought about it at all, I was just completely focussed on getting the appeal off the ground. 

As I have said quite a few times recently, I hope everybody involved has gained a real sense of satisfaction and achievement at what they have done. It’s not me who has made the appeal a success it’s the collective efforts of literally too many people to mention. A journalist asked me today what fundraising ideas I had come up with. My answer? Not one (though I have since realised I was short-changing myself because the kids walk/scooter/cycle and the London 10K runs were both my ideas!). My point, however, remains the same - I have played a role in the appeal but I’m not personally responsible for making it a success. 

Sometimes, when things get tough emotionally, I find it very difficult (for that read impossible) to get in the right frame of mind for twittering and blogging and keeping up with emails and updating the website. Later I feel guilty when, like last night, I start running through my to-do items and find emails that are weeks old that I should really have dealt with long before. That said, there’s little point in me apologising too much, it’s not going to change. Before Adam was diagnosed I’d never experienced fear, worry, stress (call it whatever you like) that rendered me useless. Now I am accustomed to it. It affects my breathing, it affects my sleep, it affects my behaviour. It’s probably not very good for my health either.

A number of people have asked me what happens when we reach our target of £300,000. The first thing to say is I have no idea exactly how much money we will need. I’ve heard about families spending the best part of £1,000,000 on treatment. I’ve also heard about families that raised money only for their children to be declared unfit to travel. Immunotherapy in America costs around $500,000 based upon previous experiences. That’s where our target  amount came from. At the moment the only two places that Adam could receive it are Germany and America, a different type in each case and with differing costs too.

All money raised, however much that might be, will be held in the charity for Adam’s use until it is no longer required. This would be at least five years from the end of treatment in case he were to suffer a relapse. After that, or if the worst happens, the money raised will be used to fund treatments outside the UK for other children with Neuroblastoma, and to bring here-and-now clinical trials over to the UK so more children can benefit from the latest research taking place abroad.

The appeal will remain open once we reach £300,000, which at the moment looks likely to be some time in July. At the start of July we have the Appeal Ball and Community Concert, events that will bring together large numbers of people from the local area. Then on July 24 it will be exactly one year since we received the confirmed diagnosis of Neuroblastoma Stage IV. I’d say reaching our target in July was very good planning on somebody’s part. I’m expecting there to be a natural lull in activity during the summer holidays. After that we’ll see what happens. 

Keeping the appeal open is definitely the right thing to do. If people want to continue to organise activities and do sponsored events there is no doubt the money they raise will help either Adam directly or another child and another family in exactly the same situation as us. If we find that we are definitely going to need additional funds for Adam’s treatment we will also have everything in place to try to gather new momentum.  The whole point is we don’t know what the future holds, all we can do is to try to keep as many options open as possible.

At the end of the day, of course, everything very much depends on Adam’s health, and how he continues to battle against this terrible disease. He’s the man. Well, one day he will be. I’m telling you. I’m telling myself.

Still poorly...

Adam has shown no sign of improvement since the weekend. Today he spent all day in his pyjamas lying on the sofa in front of the television and playing the odd video game. He isn't eating still and has lost almost 1.5 kilos in weight since last week. Clever me told him off this evening and he went running upstairs to his room crying. By the time he got there he felt ill and was sick into his waste bin. We are alternating two different types of anti-sickness medication but they don't seem to be having much of a positive effect.

I'm worried and it's showing. I'm not good company when I get worked up and worried. Very much the opposite. I have no idea whether or not I come across as a 'together' kind of person, but truthfully I'm anything but. I love my middle-sized boy so much and it tears me apart to see him poorly like this and to wonder and worry about what's going on inside his body. Logic is telling me it's the sickness bug combined with the effects of all the chemotherapy he's had. But logic is just not enough to keep my emotional responses in check.

Isn't he lovely...

Pass the sick bucket...

Adam is clearly not himself at the moment. Jessica woke up on Saturday morning being sick, and by late afternoon Adam had begun to do the same. Whilst Jessica is now back to her normal self, Adam is still lying around doing nothing, demanding the sick bucket from time-to-time (though he’s not used it), and refusing food. He’s eaten nothing but half a slice of toast today. I’m trying not to worry too much, to keep everything in perspective, but the longer things go on the more difficult it becomes. Fingers crossed that tomorrow he’ll be back to eating, drinking and playing normally.

I carried him upstairs to his bedroom last night - I can’t remember the last time I did that. I don’t get that many hugs these days so I took it slowly. It can’t be only my children, but most of their shows of affection as they get older are when they’re ill or upset (shows of affections when they WANT something don’t count). Adam does this thing where he says to me ‘close your eyes and pucker up’ and then as I go to kiss him he moves so I end up planting one on his nose or feet or under his arm. He thinks it’s hilarious. I do enjoy seeing him laughing and happy, but it still gets tedious when he wants to do the same thing over and over and over.

Adam missed his chemotherapy on Sunday because he refused to take the 6 capsules of oral temozolomide that he needs to swallow each day. He got himself so worked up that he was physically sick. It’s the only time he’s been sick since the early hours of Sunday morning so we are fairly certain it was self-induced rather than his stomach bug. Today we took him back to try again. It took the best part of one and a half hours to finally get all the capsules down him. He moaned. He shouted. He cried. He told us we weren’t the boss of him. He told us he was only having four. But eventually he had them all.

It wasn’t until Adam began feeling unwell that we gave any thought as to reason why Adam has to take six capsules every day. I suppose in many respects we have become just as accepting as Adam about things. The actual reason turns out to be because Adam’s weight means he requires a daily dosage of 90 mg. The capsules are available in 5, 20 and 100 mg. I can’t help thinking that there must be a way of making it easier for children to take the dosage they need. Like a custom 90 mg capsule. Even a 50 mg capsule would halve the number he had to take on a daily basis.

Tomorrow is the last day of this cycle before he is retested - CT, MIBG, and bone marrow. Provided his disease is still stable we should be able to continue on the same drug combination, although approval will again need to be given by our local NHS Trust. Nothing is ever straightforward.

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’.