Wednesday, 23 June 2010
Yesterday was a terribly sad day and at the same time an amazingly special day. One that I will neither forget or see the like of again. Yesterday was Howard's funeral. From the police guard of honour, to the crowded church, to the moving eulogies, to the helicopter hovering overhead tipping it's nose towards the funeral cortege as they left, to the police outriders escort, it was quite simply the most incredible of goodbyes.
In the three months since Adam's Appeal was launched our local community has come together in a way I could never have foreseen. Without fear of contradiction I can say there was no bigger person in that local community than Howard. He was just there. Always. A part of everything. And now he's not going to be there any more. Not a day goes by that I don't think of Howard's family and what they are going through. I wonder how this could be happening; there is simply no way to make any sense of it. In all the time Adam has been ill I have never really wondered why. But these last three weeks since Howard's death I have asked that question many many times. It is a question to which there is no answer.
These events remind us that we can never be sure what the future holds. As much as I write on here about Adam's uncertain future there really is no such thing as a certain one. Good or bad, what will be has yet to be written into our consciousness and whilst we can plan for tomorrow we must live for today.
Howard would have made his contribution to Adam's Appeal had fate not robbed him of the chance to do so. It was Giselle's wish that Howard was given the opportunity to help Adam. It was what Howard would have wanted. And so, instead of flowers, donations in Howard's memory were made to Adam's Appeal. It will be with the heaviest of hearts that we will receive this donation - Howard's donation.
[For those of you reading this who don't know, Howard Jackson passed away suddenly at the beginning of June. He leaves behind a wife, Giselle and two sons who both attend Wallace Fields School with Adam's brother and sister.]
Sunday, 20 June 2010
Yesterday, just 24 hours after Adam’s MIBG scan, we were given the results. No observable change from the previous scan at the end of April. The bone lesions remain spread throughout Adam's body and therefore from that perspective he remains stable, or non-responding. Results from the bone marrow tests will not be known for another week, however, and until then we do not have the complete picture. Approval has already been sought, and granted, to continue the current chemotherapy regimen and we expect this to recommence once Adam’s blood counts recover sufficiently.
With each test result that fails to bring the news we are hoping for it becomes ever more difficult to see where the first breakthrough is going to come from. By the time the next two cycles are complete Adam will have been pumped full of the most toxic drugs known to modern medicine for a full year solid. Yet earlier today we were outside together laughing, joking, playing, and having fun. He was like a little boy without a care in the world. Even the holes drilled into his back the previous morning had long since been shrugged off.
So I won’t give in. Won’t stop searching. Won’t stop trying. Won’t stop hoping. Won’t stop believing. It’s the least my little boy deserves from me.
Thursday, 17 June 2010
Maybe this is it. Maybe the new drug combination has done the trick. Maybe it's succeeded where the last 10 months of chemotherapy has failed. Maybe Adam's bone marrow results will come back clear and he can move forward to stem cell harvest. Once we've got those stem cells safely stored it opens up more treatment options. It's the first step on the road. We've waited long enough to get there. It's our best hope.
Maybe this is it. Maybe the new drug combination has failed. Maybe our nightmare scenario will be realised. Maybe the scans will show evidence of progressive disease. Maybe we are going back to square one with very few options left open to us. The NHS Trust will no longer fund Adam's chemotherapy drugs. It's our worst fear.
Maybe this isn't it. Maybe the new drug combination has done nothing at all. Or maybe the new drug combination has managed to hold the cancer at bay but nothing more. The scans will show stable disease still. We'll be back in exactly the same position in which we found ourselves two months ago. The NHS Trust will be asked to approve and fund at least two further cycles and we'll go back round this loop another time.
Maybe. All we can do is wait. And hope. And worry. And wonder. As usual uncertainty is the only certainty.
Tuesday, 15 June 2010
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.
Wednesday, 9 June 2010
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.
Monday, 7 June 2010
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.