Wednesday, 31 March 2010

A day to remember...

Wow. What a bunny-hopping crazy mad day. I'm still buzzing so I thought I should try and get something down before my head explodes and it's all lost forever.

Where do I begin?

Well maybe Monday actually and the Juniors, not the Infants. Jake & Jess had told us that the Wallace Fields Junior School coin collection had resulted in a LOT of 1p and 2p coins being brought in, but I still raised an eyebrow (and as the rules say I have to be honest when writing this blog had a little chuckle) when an email came round asking for parent helpers to go in and assist the counting effort. No wonder they couldn't lay them out in a line and measure them. I thought it was just the weather.

As for things back home... on Sunday and Monday Adam was quite low, it being a week since his last cycle of chemo had finished. His blood counts had dropped very low again despite the transfusions over the weekend. Any lower and he'd be back in for more. His temperature hovered almost constantly at 37.9. Bearing in mind that two consecutive readings above 38.0 one hour apart means a minimum 48-hour stay in hospital we thought it likely that he was going to miss the infant school bunny hop. And that would be a shame. A shame because we were hoping for some media coverage at the event that could make a real difference to the appeal, a shame because all these wonderful kids, their parents, and the staff were doing everything they could to make it a fantastic event, and a shame because we thought Adam would enjoy going and being a part of it all.

His eating and drinking were off, as they usually are, but not quite to the same extent as on previous occassions. And his mouth and throat ulcers didn't seem to be quite so severe either. As yesterday progressed he seemed to get steadily better in himself. In the afternoon our family support worker came in. Adam likes her coming round and you could hear him laughing and giggling away in his bedroom. At one point Alison went in and was told to get back out again pronto! As the day went on it was clear Adam was on an upward trend. Late afternoon a photographer visited us to take some shots for a piece the local paper are putting together and Adam was a very willing participant. The day ended with him going to sleep far too late for a 6-year-old boy. But perversely going to bed late has become a reassuring sign for us. When he's 'tired and just wants to go to sleep' at 7.15pm then we worry. The far bigger problem is trying to get Jake and Jessica into bed whilst Adam is still watching TV! They are older than him for goodness sake!

So come this morning I found Adam awake and in Jake's bed joking and in good spirits. And that was probably when we really thought 'he's actually going to be able to go'. And then we got to thinking that it would be cool if Jake and Jessica were there to. We'd have to let the Junior school know we needed to borrow them for an hour or two. And then we got to thinking that the weather was cold, wet and horrible and they'd probably be doing it indoors. All those kids. And Adam with no immune system. In the same room. And wasn't there a couple of cases of Chicken Pox in reception just recently? As we've come to realise over the months, when you have a child with cancer there's always something to think about. Nothing is ever simple and straightforward.

So Alison called the school and the answer came back that the last case was a couple of weeks ago. We felt a little better but of course the incubation period is up to 20 days. Chicken Pox is one of the diseases that is very serious if Adam catches it, potentially life-threatening. Even though he has had it in the past his immunity has been wiped out, as it has to everything else. We can be careful, we can take precautions, and we can try and minimise the risks, but ultimately we can't lock Adam away and stop him from having any contact with the outside world. So there was never any question of us not going. Instead we thought we would keep him away from Reception more so than the rest of the school. That's where the outbreak was and (rightly or wrongly) we surmised that a higher proportion of those children wouldn't have had Chicken Pox yet.

We asked the Community Nurse team to come at 9 today to get the daily chores out of the way. Bloods done and GCSF infusing, I caught Adam laughing and joking on the bed with Tara, negotiating over extra stickers as it'd been a long time since he'd seen her. Adam has a secret sticker stash that he keeps in a little stationary draw. He's got all sorts in there now, although I guess it's not quite so secret anymore! We were hoping to get to the infant school for 10am but by that time the GCSF had only just finished and Adam was still in his pyjamas.

It's been a long time since Adam went into school wearing anything remotely approaching his school uniform. But this morning he was only too willing to get into his school shirt and jumper. It set the tone for the rest of the morning. Trousers were more of a problem, but only because it's been 9 months since Adam was last at school and he's no longer got any that fit him! We picked up Jake and Jess and got to the infant school just as Reception were in full flow. Adam wasn't pleased. He'd expected the bunny hop to be conducted outside and initially refused to partake of an indoor event. However, it didn't take long before we persuaded him to sit on the bench at the side and watch. And then the fun really began.

For we had brought stickers. Special 'I've helped Adam' stickers. And lots of them, enough for everybody. When Miss Mann announced this to the school Adam grew in confidence and starting to enjoy being the focus of attention. Our concern that he would shy away from things and hide behind his Mum's legs was starting to prove ill-founded. As it turned out we couldn't have been more wrong.

I honestly don't know how long it took for each of the children to bunny hop round the path laid on the school hall floor but all of us there enjoyed every minute of it. First the kids posted their sponsorship money into a basket and then off they went weaving round the room, mainly hopping, though I did catch a few skips as well. I think it was in haste to reach the end of the trail where a huge basket of chocolate eggs was waiting (only one each of course), along with my 3 lovely children ready with stickers for all. Adam loved it. He could not have been happier stood there dishing out HIS stickers. I also have to mention Jessica and Jake who got into the spirit of things as well and helped make is a really special morning for us. They did us proud.

At this point can I ask that you please spare a thought for the teachers too, who were required to demonstrate the art of bunny hopping before each year group began their travels. I feared that the poor year 2 children might miss out altogether as there seemed to be a real danger that the teachers preceding them might not finish before school broke up for Easter!

All of the hopping and the fun and the laughter was captured by ITV who were filming the whole event, and will hopefully be running a story about it at some point. Some of the children, and the head, Miss Mann, were interviewed and whilst this was going on Adam decided he would get busy and began to open the sponsorship letters. I can tell you he had THE most fantastic 30 or 40 minutes opening envelopes and putting cheques in one pile, and notes in another pile and coins in a pot. It may sound rather mundane, but believe me mundane can seem rather good when you have days like we do. Adam being a normal, cheeky, chatty 6-year-old was an absolute joy to behold. He was in school where he belonged doing the sort of thing that a boy of his age should be doing. I just sat back and watched, only getting involved to remove the odd staple and offer a gentle reminder that it was okay to tear the envelopes and even the slips but the cheques and money needed to remain in one piece! And they did. Sally from ITV joined Adam, Miss Mann and I in the office and did some filming as Adam went about his business. And ironically given what I had said about the radio interview early in the week, the whole thing brought a tear to my eye. Well several actually. I soooo need to get more sleep. Eventually Adam finished and every envelope was empty (not that I doubted his thoroughness but I did ask that they be checked later) and we returned home really happy with how everything had gone. But happy most of all because Adam had enjoyed himself and played a full part in making it such a memorable occasion...

I can't end this entry with out saying a huge thank you to all the children at the Infant school and the Junior school. And to all the parents of children at the Infant school and the Junior school. And to all the teachers at the Infant school and the Junior school. And to Downsend Epsom Lodge (where all of our children went before infant school) for arranging a cake sale in support of Adam's Appeal. Together over £3000 has been raised as a result of your efforts. We continue to be overwhelmed by your support and your generosity.

Tonight Adam has gone to bed a very happy little boy. And just for once so might his Dad.

01/04/2010 P.S. I know I'm an adult and I don't have to call Adam's head teacher Miss Mann. But I'm afraid that having had children in the infant school for the last seven years it's what came naturally. And I'm not going back and changing it now!

Tuesday, 30 March 2010

Adam in hospital having chemotherapy on March 21.

Monday, 29 March 2010

More emotion please

I just made myself do something that I really didn't want to... I listened to my interview on BBC Surrey from this morning.

Two things struck me; the first was that I didn't actually speak too badly, and apart from suffering a dry throat part way through I didn't stumble over my words a lot as I had feared I would; the second was that I came across as rather bland and lacking in emotion. Not ideal when the reason you are speaking is to get the word out there that you desperately need HELP. If I hadn't been introduced as such somebody listening might not have known I was Adam's Dad, fighting for his son's life.

I'm not really sure how it happened that way. I sat outside the studio waiting to go on and I started thinking of something that brought a tear to my eye. I can't recall what it was, it happens fairly often and I can usually grit my teeth and make it go away. But I do remember thinking 'Oh shit. I hope I don't lose it on-air and start crying'. The thought had never occurred to me before when the interview was being setup. Now looking back it may not have been such a bad thing. I was so busy trying to speak clearly and not babble that I detached myself emotionally and answered like I was a spokesman. Or at least that's how it came across to me listening to it back.

So now I feel like I missed an opportunity. Next time I might be better saving the tear-in-the-eye moment for the studio not the waiting room.

Sunday, 28 March 2010

Wait... it's still me

You've probably noticed that I changed the design of the page. If I've confused or upset anybody then sorry but I prefer it this way and it's my blog! When I first started I'd never used blogger before so I just picked a random layout and went with it. Now I've had a bit more time to customize it and this is what I've settled on... probably.

Well I was close...

So after a truly awful night's sleep, or rather non-sleep, the nurse came in early to do Adam's bloods. He was up and down all night long and eventually decided it was 'morning time' at 6:30 British Summer Time.

His platelets are 4 so we are now waiting for them to be sorted out and then he'll have his transfusion. I said they would be 6 - it was close. Fingers crossed that we won't be waiting around for hours for them. They could come from anywhere so we might be here all day. I can tell already it's not going to be a good day.

Saturday, 27 March 2010

Has it only been one week?

Another hospital, another post. It's been just over a week since I sat on a pull-down bed in the Royal Marsden and blogged that I was glad we had got the appeal launched. Now I find myself blogging from a fold-up bed in Epsom General after a really busy week that has seen the appeal start off much better than I could have hoped. We have such momentum and so many people not only willing, but wanting, to help. I wish we could bottle some of the enthusiasm and save it for when the going gets tougher. It's very early days, but I'm optimistic. I think the appeal has started off the right way, all we need to do now is keep it going the right way! Simple, no? Well it's already become apparent to me that I can't single-handedly take on the running and co-ordination of everything myself. Hopefully help is at hand and I won't have to try. We have already had some encouraging news on the media front. I'll be speaking on BBC Radio Surrey on Monday morning, my first media engagement since I did a Flash Gordon phone-in on Radio Norfok in 1980. This time my Mum won't be there to tell me the answers though. With a bit of luck there'll be some more media-related news in the near future.

On a medical front things have been pretty much as expected. Adam's blood counts have been dropping steadily since we returned home from chemotherapy on Sunday evening. Then today they hit rock bottom. He's having blood at the moment but I have little doubt that we'll be in here for a decent chunk of tomorrow too having platelets as well as his usual GCSF infusion.

Normal platelet levels are around 150-400. Adam's are 13, but they don't transfuse unless you are below 10 or symptomatic. The lower your platelet count the more susceptible you are to bruising and bleeding. So those 4 little platelets are making all the difference. I will be astonished if they are still above 10 tomorrow, my money is on 6. So far between each TVD cycle Adam has needed 1 or 2 blood transfusions, and 1 or 2 platelet transfusions. If it wasn't for the fact that we are here tomorrow for GCSF anyway I might have been tempted to get Jess to knock him about a bit and then seek a transfusion on the basis that he was symptomatic. On one previous occasion when his platelets have been this low I accidentally poked him and was horrified to see a bruise appear the instant I moved my hand away.

Being 6 years old Adam understands more of what is going on than some of the other children that we come across with cancer. He likes referring to things by their proper names. Where other children have wigglies Adam has a Hickman line. He takes Sando-K (potassium) and Septrin (anti-pneumonia). But although he's seen more, and been through more, than any 6-year-old child should, there are still moments of blissful ignorance. The blood that is now being infused into Adam to raise his Haemoglobin level is a perfect example. As far as Adam is concerned this is HIS blood. After all they take blood out of him almost every single day. Adam thinks they store it for him and then give it back to him in a big bag when he needs it. I see no benefit in telling him otherwise, I quite like his version.

We've just finished the nightly medication routine. On the whole Adam is a brilliant little boy with his medication (I can call him a little boy in print because he can't read yet). He takes pills wherever possible, the only exception being the potassium and magnesium supplements that he's been on for the past 8 months. These come as a large soluble tablet and a thick syrupy liquid. We mix them together and add some blackcurrent cordial to try and mask the taste. But it's still horrible and Adam still hates it. He must now be into the 200 and something consecutive day of having it morning, afternoon and night. Admittedly sometimes it takes longer than others to get it down him but I can't think of any time when he's actually refused it altogether. The biggest problem is getting the correct medicines dispensed. Last Sunday was the first time they have given us all the correct things to take home. Seriously. We get syrups instead of pills, chewy magnesium tablets instead of syrup. We think it stems from the time he had a feeding tube and all his medication changed from tablets to liquids. Or maybe we are being too kind.

As well as having low HB and platelets Adam is now 'Neutropaenic' i.e. his Neutrophils are 0. Nil. Gone. Neutrophils for those who don't know (I admit I didn't before last July) are white blood cells that are good at fighting bacterial infections. So when you have none you become both susceptible to infection and unable to fight off any infection you pick up. That's why at the first sign of a fever over 38.5 Adam is taken straight to hospital and started on a minimum 48-hour course of IV antibiotics. 48 hours is the time it takes for his blood samples to either confirm infection or come back clear. So far we've done quite well at avoiding infections, but badly at avoiding the temperature, and therefore the hospital stay. A clear pattern has emerged that says when Adam's Neutrophils go to zero his temperature spikes around 39 degrees. And that's why we've ended up in here for 2 or 3 days between each course of chemotherapy.

Despite having low everything Adam's been in remarkable good spirits today, as indeed he has for most of this week. The one noticeable change has been a tendency to become over-sensitive. One minute you can be laughing and joking with him and the next you take it just a little bit too far and he'll be in floods of tears and running off to his bedroom.

This morning in the post Adam received a large A4 envelope containing dozens of Easter cards from his friends and classmates at school. He was really really thrilled. More so than I have seen him about any of the other things they have done since he first became unwell. Tonight when we arrived at the hospital we laid together on the bed and went through each one in turn. He had already done the same with Jessica and his Mum earlier in the day when he came for his GCSF. They were all fantastic, but I must just mention that among all the 'Get Well Soon' messages I had a little laugh at the card from Charlie P which simply read 'Come Back!'.

Maybe it was receiving the cards, or maybe it's because we've been talking about school a lot recently with the fundraising they are going to be doing. But in the car on the way home from his second blood test of the day (the first sample got lost by the lab) he declared he was ready to go back to school again now. He wanted to have another little play with his friends and also see if anybody had any wobbly teeth (Adam has 2 and is quite proud of them both). I said we'll see how he is after the Easter holidays, but realistically I can't see it happening. Still it was nice to hear him talking about school in such a way. Maybe one day he will get his wish and go back to school, this time permanently. For our part we have to keep hoping and believing such a day will come.

Thursday, 25 March 2010

I worry...

I worry a lot these days. I worry about Adam of course. I worry about Jake & Jess and how all this is going to affect them in the coming months and years. I worry about Alison. Adam loves his Dad of course, but Mum is number one when it comes to caring for him when he's poorly. Alison bears a heavy burden in that regard. And sometimes I even worry about myself, but not all that often to be honest.

I can't speak for other parents of seriously ill children but from my own perspective Adam's illness has robbed me of the ability to relax. I mean to just totally and utterly switch-off. Some years ago I began to suffer from tinnitus, a constant high-pitched whistling in my ear. It's not something that affects me all the time, I tune into it when I'm not concentrated or focussed on anything else. Now there is an undercurrent of Adam's cancer that comes to me in the same way. If I have nothing else to think about my mind will take me to it. How, why, when, how long? The treatment, the future, the decisions, the possibilities. And of course the worries.

One of the things I worry about is America and how it is going to affect our family. We've always been a close family. Jake and Jessica like to squabble, but Adam floats between the two. He'll be playing Xbox with Jake one minute and engaged in some serious espionage business or comparing club penguin cards or gogos with Jessica the next. It was noticeable that when Adam was in hospital for prolonged periods at the start of his illness Jake and Jessica spent much more time in each other's company, forming a subconscious bond in the face of all that was happening around them.

The antibody treatment which is currently standard of care in America simply isn't available in the UK. The antibody itself (ch 14.18) is over here, but it's not being offered with the same drug combination that is believed to be vital to its efficacy in the States. So it falls to parents like us to decide whether we want to try to get to America where we know what the published risks and results are. Or whether we want to stay and take our chance with something which may or may not be of any benefit to our children.

Clearly we have come to the conclusion that America holds the best hope for Adam or we wouldn't be campaigning as we are to raise funds for him to have treatment there. Around the same time we hope Adam will be going out Jake will be starting secondary school and Jess Year 4. Most likely Alison will take Adam to America and the rest of us will stay in the UK and go out to visit whenever possible. The treatment lasts for 5 months so it's a long time to be apart for a family that has no real experience of not being together as a unit. I have bad days when I don't want to be away from Adam, and on such occasions I tend to work from home. Come September we could be thousands of miles apart, on different sides of the Atlantic.

Up until now we've been fortunate to live so close to one of the best paediatric cancer units in the country. Through all of Adam's treatments we have been able to come and go quite freely, his brother and sister have been able to visit regularly, and we've been able to maintain some semblance of a stable home life. At some point soon that's all going to change, and I worry what will happen when it does.

Friday, 19 March 2010

What a busy week...

So it's Friday night, well nearly Saturday morning actually, and I'm in a small 3-bed bay at the Royal Marsden with Adam asleep next to me hooked up to two machines infusing Vincristine and Doxorubicin into his middle-size body at 2ml/h. Adam is not our little boy and hasn't been for as long as I can remember. He is insistent that he is our middle-sized boy, and who are we to argue?

Now I could claim that I've been in this situation many times over the past 8 months, but actually that would be a gross exaggeration. It's only recently that I have been permitted to spend the night with his royal-middle-sized-ness (well that's my excuse and try telling me otherwise). But me and Mum can take it in turns now and tonight is my turn. It's been a rather tiring and rather emotional week. Since Adam was diagnosed we've kept quite a low profile I guess. I've never been a blogger, or a twitterer (?) or a facebook addict. We always had it in the back of our minds that once Adam was through stage one then we would start to raise money for ch14.18 antibody therapy (which is what some UK kids are already having over at Children's Hospital of Philadelphia). And I suppose we hid behind that decision a little. But after the last set of results we came to the realisation that ch14.18 wasn't the only reason why we might need to go to America and we were reaching a point where the course of Adam's treatment was starting to move out of the mainstream.

So having agreed that we needed to do something now or it would be too late (it still might be, but let's not go there) I felt we had to open up and get everything out there. I also wanted to have a decent website to focus attention and start to bring people who haven't been closely involved with our family into our world. I thought about trying to do it myself from scratch but the trouble was I hadn't done anything with websites for ages. So I roped in a very willing and very able Antonella who put together a first-cut of the design of the site within 24 hours. I like Antonella. She stays up late and plays with computers like me. Along with Lisa, who designed the Adam's Appeal logo, she is my new best friend. I somehow think that by the time this is done I'm going to have lots of new best friends.

But of course most of the words, photos, slideshows and videos are mine. And putting them together wasn't an easy thing to do emotionally. And also being so particular of course I had to do it over-and-over again until I was happy. In an obvious way it was tough and draining. But in another it was quite invigorating. Because the thing about having a child with cancer is that you can't actually do very much. I mean we try to do the right things and get Adam to eat and to make sure he drinks enough. And of course we (again mainly Mum) give him all the medicines that he has to take daily. But you're still left with the feeling of almost complete helplessness. I couldn't tell you what's going to happen with Adam tomorrow, or next week, or next month. And what does happen will be nothing to do with anything I've done. So putting together the site and kicking off the appeal allowed me, for a little while at least, to feel like I was doing something to make a difference. Spare a thought for Alison too who ended up thanks to my stupidity watching the slideshow sitting with Adam. That didn't last long.

So eventually after a few very late nights we were ready to go, apart from the Just Giving site which took longer than anything else. Nobody's fault, just one of those things, but by this morning I was getting slightly frustrated. I'd heard feedback that people wanted to donate but when they got to the site they couldn't. All I could do was ask them to come back later!

But now the appeal is officially open. And we've already got people planning to do amazing things for us. And we've got people making unbelievable gestures. There's a massive challenge ahead to raise the money we will need. All I can say is that I don't know where this thing is going to end, but for now I'm just really glad we got it started.

Saturday, 13 March 2010

A Nice Evening & A Good Week

We've just returned from a lovely evening with one of our neighbours. All the kids had a good time and we need not have worried about Adam as he enjoyed himself immensely. We've hardly been out since Adam was diagnosed last July and it was just nice to do something 'normal' for once. Pre-diagnosis normal that is.

This week as a whole has been a good one for Adam. He visited his school on Wednesday and had some fun with his friends whom he has seen only sporadically over the last 8 months. 'Everybody wanted to play we me' he told me. Which was in evidence during the game of 'it' when whoever was 'it' wanted to chase Adam and give 'it' to him. So Adam spent the entire time either being chased, or doing the chasing.

Adam should hopefully start TVD again on Monday. It was originally planned for this week but his blood counts had not recovered well enough. So we had a bonus week off from treatment which is why Adam has been quite well in himself and able to do more active things than normal. Delays in treatment are rather a double-edged sword. They are nice for the quality time that they give us with Adam when he is relatively drug-free. However, there always lurks the notion that pressing ahead sooner rather than later is better in the long run.

Adam's Neutrophils have been playing games again. From 0.3 at the start of the week they jumped to 12.1 after a single dose of GCSF before falling back again to 1.1 on Friday. The Nurse came Friday afternoon to give him another infusion of GCSF and we have to wait and see what his counts are on Monday morning before we get a decision on whether he will go in. Fingers crossed they have stayed up and we can start the chemotherapy.

Friday, 12 March 2010

Website Update

We are in the process of getting the website up and running. We need to wait for approval for an JustGiving account for Adam from the 2Simple Trust. Once this is complete we will be able to start taking donations. Please be patient... and make sure you come back once the account is online.