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.
Tuesday, 25 May 2010
Thursday, 20 May 2010
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....
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”
(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.
“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.
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.
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.
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