Friday, 30 April 2010

Hoped for better, feared worse...

Adam's results when we got them today were clearly not what we were hoping for. But in truth they were probably closer to what I expected than not. He hasn't responded to the last two courses of chemo at all. Although he had shown a response to the other four courses of TVD it wasn't a dramatic one so I was never expecting that he would suddenly and miraculously be clear. I had hoped that he would continue to respond, and that it would be sufficient to clear his bone marrow, and that for me is the single biggest source of disappointment. At the same time his scans and bone marrow are no worse than last time, there are no new lesions or evidence of progression. Because we feared worse news I suppose we have found something positive to focus on.

The longer the week has gone on the more convinced I have been that Adam's legs and feet are the combined result of the chemotherapy and doing a lot more than he has before at an equivalent stage in the treatment cycle. All the stuff at the weekend with bin-ball, tennis and cricket must surely have contributed. Once he gets everything going he does seem fine. Of course until he stops limping altogether we won't stop worrying completely that there isn't a more sinister explanation. He hasn't complained about his arm or stomach for days. Our consultant checked him over today and didn't think there was anything more to worry about other than what we already know. His blood counts this time have recovered really well. His HB, following the aborted blood transfusion on Monday, was over 12 today. That's practically normal. And unheard of for Adam.

As to where we are now with Adam's treatment I know I keep going on about it but we have to get a clear bone marrow so that we can progress to stem cell harvest. It opens up more treatment options, albeit harsher ones like MIBG therapy. If we could get a clear bone marrow and a definite response on the MIBG scan this would be a very positive sign. Because samples are only taken from two sites it's always possible to get a false negative bone marrow test once the level of NB cells becomes small. This is why I think a definite response on the MIBG scan would be a very good accompanying sign.

As expected Adam is going to start on temozolomide and irinotecan from next week. Adam's consultant and the other experts at the Royal Marsden believe these two drugs are the best combination to try next. They are quite new to upfront Neuroblastoma treatment, although they are routinely used in relapsed children in the UK. They are classified as 'high cost' drugs and can only be given in upfront therapy in exceptional cases following a formal approval process. So there is an amount of bureaucracy to go through, but Adam should begin treatment next Wednesday. One of the drugs is given IV and the other is taken orally in a capsule form. So Adam will only need to be treated as a day patient for now. The new schedule is both drugs every day for 5 consecutive days, with 3 to 4 weeks between cycles to allow his blood counts to recover. He can have 4 to 6 courses but the plan is to repeat all the investigations after 2 courses in order to see what effect (if any) the new drugs are having.

So it's pretty much as you were. The last two months have done nothing to help Adam beat this disease, and we can only hope that the next two months have a much more positive effect.

Thursday, 29 April 2010

Do Feet Sleep?

Adam's had a pretty good day today. And I suppose thinking about it, so have I. No work for me for the time being, totally unproductive anyway and it was upsetting my biorhythms being away from Adam. Or it was making me feel like shit, whichever description you prefer. So today we played some football in the garden, Adam trounced a visiting journalist at Wii Beach Volleyball, we had a brief trip into town, we played a little more football, Adam and Jess went for a 30 minute bounce on a neighbour's trampoline and then they dragged our next door neighbour's kids out into the street to play some tennis. Well a game involving tennis rackets and tennis balls anyway.

So Adam's had quite an active day. And he's eaten pretty well too. But we really have no idea what is going on with his feet. Today he's complained that they ache more than his heel bone hurting, and it does seem as though his problems are most pronounced when he is sitting or lying and has to get moving again. He's had a busy day as you can see, and once he gets going he seems to be okay, albeit he looks rather odd when he is trying to run. For the amount of effort he's putting in he should be going at least three times as fast!

Tonight as I was carrying him upstairs to bed he told me that the engines in his feet took a bit of time to get started, and then a few seconds later that his feet fall asleep and need waking up again. 'That's what the pwoblem [sic] is Dad' he said. He's had aching legs and feet before coinciding with him finishing chemo. We've always put it down to vincristine which is known to have this effect. But it's never lasted this long, or become this bad. Then again for whatever reason he's been more active after this last course of TVD than any of the previous five. He's not had 2 or 3 days in bed/on the sofa/in hospital. So I just don't know.

In case you are still wondering I really don't know.

Wednesday, 28 April 2010

Tough times...

The last couple of days have been really tough ones.

Adam being mascot at the match on Monday night was a memory that will be forever treasured. But the joy of watching him meet Baggy Bird, the West Brom players, and leading the team out onto the field was only temporary respite from the fear and worry that have been a constant companion since the start of the week.

Both myself and Alison have a terrible foreboding about Adam's test results. Our appointment with his consultant is on Friday, but there have been recent signs in Adam that have caused us deep concern. We both think that Friday will bring us nothing but bad news. The signs are only small things, but they are enough to strike fear and panic into us nonetheless. First it was his arm - I mentioned it before. Then it was his tummy aching when eating. And now he's begun to avoid putting his heels on the floor because they hurt too much.

Doesn't sound like a lot does it?

But we've been here before. We know how these things start. And we know how quickly they progress too. Where first time round we missed all the early signs, such as they were, now we scrutinise Adam for anything that might suggest things are getting worse rather than better.

To those people that saw Adam sprinting round the tennis courts at bin-ball, or jumping around on the bouncy castle it might seem like I am talking about a different child. But I have videos and photos from May and June last year of Adam running around our garden playing with Jake and Jess. You would never know from looking at them that anything was wrong with him. And yet by early July he was in so much pain he could barely move. So whatever I am being it's not paranoid. I know what this thing is that we are dealing with. And I know what it can do. And I know how quickly it can do it.

I haven't been gripped with fear like this since just before Christmas when Adam's second round of TVD kept getting delayed and put back because of poor blood counts. Back then I became convinced something terrible was going on and the effect of the stress and strain was palpable. It's the same now. For the past two days I've been unable to function properly and I've had to take time off work to get through it. Everything else went on hold too - blogging, tweeting, replying to emails, everything.

As you may have gathered by the fact that you are reading this, and therefore I have written it, my mood has lifted slightly. Don't ask me why, how or when. It just has. Possibly because of the three hundred or so times I have asked Adam whether anything hurt today he has only responded in the affirmative about his feet. And they hurt yesterday too.

As of now we are changing a lot of things about the way we live in the hope that they may have a positive effect on Adam. Our house has been tested for geopathic and electromagnetic stress and we now have a list of things to change. Metal beds, metal headboards, and metal sprung mattresses are out. Adam's electric alarm clock is out. Wifi is out. Extension cables are moving. Cordless telephone is being changed for an eco+ model. Furniture is being rearranged. Bedrooms are being swapped.

We are changing Adam to an organic diet with weekly Able & Cole deliveries, replacing cow's milk with goat's milk, reducing other dairy content, removing sugar and convenience foods from his diet, baking our own bread. Feeding him foods that have known anti-cancer qualities. Replacing cartoned drinks, squashes and the like with freshly made fruit juices. Filtering water, fitting air purifiers. We are giving Adam daily doses of honey and other immune boosting supplements.

We are investigating alternative therapies more vigorously such as Hyperbaric Oxygen Therapy. As long as Adam's medical team have no fundamental concerns we will be starting as soon as is practicable.

All of this may come across as rather desperate. And maybe it is. But there is evidence out there advocating all of the things we are going to do. And who knows, maybe some of them will make a difference. As long as it doesn't hurt why wouldn't you try anything and everything?

Monday, 26 April 2010

Rubbish morning, rubbish post...

Woke up this morning feeling terrible. I could feel the pressure of tears behind my eyes waiting for an excuse. And I could feel it in the pit of my stomach too. It's the kind of day when you have to force yourself to eat breakfast because you know it's the right thing to do, not because you want to.

I was going to write that I don't know why, but of course I know why. It was because there's a more than even chance that Adam won't be here this time next year. What I really meant was I don't know why today, and not yesterday, or the day before.

I think, rather perversely, it was because Adam had such a good time at the weekend. First at bin-ball on Saturday and then at tennis and cricket on Sunday. He spent all of yesterday running around, playing hide & seek, joining in with the tennis, playing football, jumping around on the bouncy castle, throwing wet sponges at me, throwing eggs at Jake(!). He was doing all the things that the other little boys and girls were doing. He came home, had a rest on the sofa, and even went back outside to play football with Jake and Jess until it was time to come in and get ready for bed!

Several people commented how well he looked and that if it wasn't for his lack of hair you would scarcely be able to tell he was ill. And it's totally true. And I totally agree. And it's good that he's like that, far better than the alternative. And I should be happy about that. And I am. But at the same time it breaks my heart to see him so happy, active, bubbly and full of life. And yet I know the overwhelming odds are that it's not going to last. He's going to go downhill, he's going to endure more pain and suffering than most of us will ever know, and then he's going to be taken from us for good. I don't know when. Of course I don't even know this will happen. I pray it won't. Ever. I only know that at best this fear and worry is a revolving nightmare that will go on for years and years. Even if this disease goes away it can come back at any time even 4 or 5 years down the road. And if it does the chances of it going away for a second time are almost nil.

Yesterday morning Adam complained that his arm was hurting. Most parents would look for a bruise and put it down to the bumps and scrapes that children get into. Us? If there's no obvious cause we immediately start thinking that it could be the Neuroblastoma. That's how it manifests itself. Not that we knew it at the time but all his coccyx pain was from the cancer that had invaded it. We know that he has cancer in his bones, but the onset of pain would be an indication that the disease had become progressive. It would be a terrible sign and we live in fear of it. Every day. Every minute of every day. Every second of every minute of every day.

Projecting forward even if Adam is one of the lucky ones, even if he clears this disease and stays free of it, we are going to be living this same nightmare. Every time he complains of a pain, or spikes a fever, or he refuses food, or becomes more tired, or doesn't sleep properly. All the things he did before, that every child does at some point, but that we now know can be caused by this disease. When people talk about being 'cured' there isn't really a concept as such, there is just a diminishing probability of the disease returning the longer time goes on. We would continue to live in fear, heightened whenever there was any sort of problem with Adam's health. But it's okay. It's fear I'm happy to live with because it would mean Adam was still with us.

Reading this post back to myself I don't even know why I am writing about this stuff really. We are a million miles away from getting to that position. But I suppose it just demonstrates the tangled mess of emotions and thoughts and fears that race round my head whenever I let them get the better of me.

Friday, 23 April 2010

Now that was a surprise...

Adam's bone marrow tests went better than at any time since he first underwent the procedure last July. This was the 6th time - he's becoming something of a veteran.

When he came round (from the general anaesthetic) there was the normal screaming and shouting for a while, mainly because they hadn't put the plasters where he'd told them too. I'm sure wherever they put them it would've been wrong. He whacked his Mum a couple of times. And he insisted on keeping his trousers and pants round his ankles whilst he was having his GCSF. But there wasn't the same level of discomfort and he didn't have to be helped back into the car afterwards. He even managed to have a play outside which was the last thing I expected him to be doing tonight. Hopefully he won't start to feel any worse tomorrow.

Now we wait for the results.

Best hope? Realistically, bone marrow clear so we can go for a stem cell harvest. We'll take that at this stage. Nobody is expecting his MIBG scan to be clear.

Thursday, 22 April 2010

Saving the worst 'til last...

So Adam spent all day today at the Marsden with his Mum, putting in a good shift from 9.30am to 6pm.

After tea we went outside and had a little game of cricket and tag rugby. Adam announced that cricket was 'one of my finest talents' - such modesty.

It was Adam and Jess vs me at rugby and I took a bit of a thrashing. I was less than impressed at one point when Adam started crying out in pain. I ran over to him and got down on my knees to see what was up and caught him giving Jessica a nod and a wink. As she picked up the ball and ran away to score a try I realised what the little toad had done. He claimed afterwards that he caught his finger on his kneecap and it (his finger) did really hurt when he first shouted 'Ow'.

Tomorrow he's having bone marrow aspirates and trephines so I doubt I'll be blogging about rugby in the garden again for a while. Although sometimes he is still quite mobile after. Let's hope it works out that way this time too. Fingers crossed for a clean in and out (or rather two clean in and outs as they take samples from two sites). There was one occasion where the hole on one side of his back was about three times as big as that on the other side. Ouch!

Wednesday, 21 April 2010

Update on the update...

New plan. Now going to the Marsden tomorrow for MIBG scan, followed by GCSF, followed by platelet transfusion, followed by blood transfusion. Have I missed anything? I don't think so.


Nurse came first thing this morning to do Adam's bloods as we thought he'd need transfusions today. Turns out we were wrong, but it's still only a matter of time. HB is 7.3 and Platelets are 30. He'll definitely be having platelets tomorrow as they won't do the bone marrow tests with platelets that low, and it's still odds on he'll need HB as well. He's never not had at least one blood transfusion after TVD before.

So now the plan is for the community nurse to come in first thing tomorrow again and do another full blood count and cross-match (to get correct type for the transfusions). Then Adam will go to the Marsden for his MIBG scan. Then he'll stay at the Marsden to have his GCSF. Then he'll go to Epsom to have Platelets and possibly blood as well. If it's the later then it's a safe bet that most of the day will be in a hospital.

And all the while we're still watching out for him spiking a temperature. He's still neutropaenic (neutrophils are zero => zero immunity) so if it's going to happen it'll happen soon.

Tuesday, 20 April 2010

A small victory...

Echo cardiogram was fine... Adam's little heart is still beating like it should.

Well it's a big heart actually. He told me on the way to the hospital on Saturday (I think) that he is a kind person. When I asked him why he told me he knew he was a kind person because he had a big heart. He could feel it beating and he'd used his hands to measure the size of it. And it was big. So he must be kind.

I love these moments of innocence, they are what childhood should be about.

I love my little boy x

This week...

Lots of hospital time this week with various things going on.

Adam was at Epsom General on Saturday and Sunday morning for his GCSF. Takes about 1.5 hours to get bloods taken, hooked up, infused, flushed and hep-locked (which is given to clear his IV lines after every use).

Monday was supposed to be day off from hospitals - just GSCF at home. But Adam's blood counts came back and his platelets were 8, which is very low. So he went up to Epsom in the early evening to have an 'orange bag'. Platelet transfusions themselves don't take long, 30 minutes maybe, but the problem can be the length of time it takes between them being ordered and arriving at the hospital. Fortunately yesterday the timing fitted in quite nicely. Once we got back Alison had to go to the Marsden to pick up the next batch of GCSF. There is always something.

Tuesday (today) it's GCSF at home in the morning and then an echo cardiogram at St George's in the afternoon. This is to assess any damage done by the doxorubicin which has known cardiotoxicity.

Wednesday morning it's a trip to the Marsden to have the MIBG radioactive agent injected into Adam's bloodstream. This is a bit of a time-consuming exercise as they don't like using the IV line for the agent as it can stick to the inside of the line and show up on the scan. So Adam has to have some 'magic cream' put on and then have a cannular inserted into one of his hands. The stuff still hurts though when they inject it, the severity depends on how well the doctor has put the cannular in. Adam doesn't like this very much at all.

Thursday it's MIBG scan where Adam has to lie totally still for 1.5 hours whilst they scan him from top to bottom. Any areas of disease are highlighted as the agent binds to the cancer cells. Worst part is when he has to lie face up with this huge machine about 1 cm from his nose for about 8-10 minutes. He can't see the portable DVD player, he can't speak, he mustn't fidget.

Friday it's bone marrow tests - aspirates and trephines. The former is where they use a big needle to suck out semi-liquid bone marrow, and the latter is where they drill out a solid piece of bone marrow. If you want more information look it up on Wikipedia. There's nothing fun about it. Adam will have this under general anaesthetic and if it's anything like before he will have a 30 minute screaming and shouting fit once he comes round. I hated it when I was there to witness it myself. I was physically unable to leave him alone to get over it himself, and consequently got a smack in the face as a result.

Saturday & Sunday Adam will be rather sore. Undoubtedly I'll forget about this and I'll give him a hug and Adam will recoil in pain shouting 'Ow, Ow, you touch my holes'. And depending on blood counts we'll be back in Epsom again for more GCSF to try and help his blood counts recover for whatever comes next once the test results are back.

Oh and this all pre-supposes that he won't spike a fever and have to go into Epsom as an inpatient for minimum 48 hours IV antibiotics. It's only after the 5th cycle of TVD that this didn't happen, and even then it was touch-and-go, for 48 hours or so his temperature hovered just below the threshold above which he has to be admitted.

And finally lest anybody needs reminding Adam is a little six-year-old boy who should be starting a new term at school this week...

Wednesday, 14 April 2010

Chemotherapy complete, scans to come next...

Its been a couple of days now since we got out of hospital after completing the last cycle of TVD. Adam had been on continuous IV chemo for 48 hours and as usual he didn't want to do much other than stay in his bed. But once the lines were off he was off too - running noisily round the ward. Its one of those odd situations; you spend two days encouraging him to get out of bed and do something, and then if you're not careful you find yourself telling him to calm down and stop running about. It's a hospital for goodness sake. Full of sick children. The nurses are all brilliant though and they like to see the kids happy and playing when they are well enough. They see them often enough when they're not. I've nothing but admiration for the nurses that have looked after Adam these past 9 months. All of them - at the Marsden, at Epsom, and the community team too.

Before Adam could leave he had to have his bungs and dressing changed. This is a once-a-week task and he's had it done every single week, without fail, since his line was put in last July. As long as it's done his way, and to his satisfaction then everything is fine. But if a nurse steps out of line, and doesn't bring the zoffs (plaster removal wipes) or positions the line or dressing so it's uncomfortable there will be consequences. He's even been known to demand it be taken back off and redone. But it's understandable. You try sleeping with a plastic tube, bungs and clamps digging into your ribs under your night clothes. And the skin around and under the dressing can become quite sore because it never gets any air to it.

Adam's had a good couple of days since he came out (sounds like prison!). Yesterday and today he went to the driving range and hit some balls. Adam's a speed golfer. He fires half a dozen balls (about half a dozen yards) in the time it takes anybody else on the range to get through their first practice swing. But I don't care. He enjoys it and it gets him out of the house where he would otherwise be stuck in front of the TV skipping between Nick Jr and Disney Channel.

Today cousins Ben and Lucy came to visit for the day, and that always brightens the spirits of all of our kids. After the golf I spotted Adam in the garden chipping a football over the badminton net. Which I was quite impressed with actually.

By the time it got to 8 o'clock Adam was clearly feeling the effects of his exertions. It's not often he decides himself that it's time to go upstairs to his bed, but today was such an occasion. Hopefully he will sleep well and be ready for more tomorrow, but the chemotherapy will start to take it's toll on him over the coming days. If he manages to stay out of hospital and infection free for the next 7 days we'll take that.

I'll be glad after tomorrow when Adam has stopped taking his strong anti-sickness steroids. They make him aggressive and at times very difficult to deal with. I'm not as good as Alison at backing-off and waiting for him to calm down. No, let me re-phrase that. I'm useless at backing-off and waiting for him to calm down.

We have dates for Adam's scans now. Slightly earlier than I had previously thought, starting with a heart echo on 20th April and continuing that week. He's not having a CT scan this time as it'd only be used in preparation for surgery at this stage. And it's very unlikely that Adam will have a clear MIBG scan and therefore be able to progress to surgery. The best we can hope for is continued response and a clear bone marrow. This will enable us to try for a stem-cell harvest and then start a new combination of chemotherapy drugs to carry on trying to clear the metastatic disease. It's not too much to hope for, is it?

Tuesday, 13 April 2010

Better now...

Have now got my head out of my own arse. Self-pity achieves nothing.

A bad start...

I hate waking up in this kind of mood. Everything is too much trouble and what's the point and it won't make any difference anyway and I wish it would all just go away and why don't I just go back to bed, pull the duvet up over my head, and stay there forever.

Sunday, 11 April 2010

Easter, or what I remember of it...

You'll have to forgive me. I know I said I was going to tell you about Easter but I'm afraid I've already forgotten the first half of it. With the extra processing load my brain has to accommodate these days it uses a 7-day circular buffer. So the events of Good Friday and Easter Saturday have been overwritten by the last two days and I am unable to recall anything that happened. Some of you skeptics may think I'm just being lazy and minimizing my blogging effort. I'm not. Seriously I cannot remember what happened.

[There follows an interruption whilst I consult with Alison as now I'm bugged that I can't remember what we did. And unless I figure it out I'm not going to able to concentrate on anything else I'm writing.]

It transpires that on Friday Alison & Jess had a nice time making an Easter table centerpiece at the Embracing Earth event in support of Adam's Appeal. What Adam, Jake and I did is definitely expunged. Probably not much except in the morning I took Adam to hospital for GCSF.

On Saturday morning it was Alison's turn to take Adam to hospital for GCSF. Saturday was also the morning that I had my vision of a couple of posts ago. But actually it turned out to be a nice day. Jake and Jess went to friends and then on the spur of the moment Adam and I met them up on the Downs. They all really enjoyed themselves and consequently so did I.

Those that really know me will testify to my need for neatness and tidiness, my fastidiousness, my leanings towards obsessive compulsive behaviour. But all that (ok, most of that) has been thrown into disarray by Adam's illness. I wasn't joking up above. I honestly can't remember most of what I did just days earlier, except after very careful thought or finding something to jog my memory. And I'll be talking to somebody and then suddenly be unable to finish what I was saying. My thought process gets interrupted and whatever was supposed to come out next vanishes. Gone. It's actually quite embarrassing and I often find myself having to apologise for it.

Easter Sunday I do still remember. It was the day of the big treasure hunt. Which also now reminds me what Alison and I spent a good chunk of Saturday night doing. Hiding Easter eggs and putting a treasure map and cryptic clues together to reveal their locations. Adam appeared at the foot of our bed just after 7.30 on Sunday morning. "Dad, Did you do the treasure map? ... Dad, Did you do the treasure map? ... DAD, DID YOU DO THE TREASURE MAP?"

The treasure hunt that took about 1.5 hours to construct took about 10 minutes to complete. But I think it met with approval. Or perhaps the prize at the end made up for any failings. Either way none of the children had any complaints.

We'd been told that Adam didn't need his GCSF on Sunday. His blood results from the previous two days were sufficient for him to begin chemotherapy on Wednesday, and he needed 48 hours free of GCSF before he could start. My sister and her family were coming down for a visit so hopefully it was going to be a nice hospital-free day. At the back of our minds though we were both slightly concerned about Adam's blood counts. Over time you come to realise that nobody has the same understanding of your child's response to treatment, and recovery from it, that you do. So although his counts were above 1 for 2 consecutive days we knew it didn't mean that they would stay there. Experience had taught us that it was actually unlikely.

Sunday afternoon was the kids doing their sponsored relay round Alexandra Park. We got there just after 3 to be greeted by a few spots of rain. Great. As it turned out those few spots were all there was. Jake ran, Jessica scootered and Adam cycled. Twice round the perimeter of the park each. I accompanied Adam's second lap on foot just to prove how unfit and out of condition I'd become during the past 9 months. I helped him negotiate the uphill section and he thanked me by speeding off downhill and leaving me puffing and panting some way behind. We didn't want to make a big thing out of the event just in case Adam wasn't well enough to do it, or the weather was really bad. But it all turned out great. Everybody had fun. And after he'd finished his cycling Adam even had enough energy left to go play football with his brother.

Which brings me to an observation about Adam's condition. Sometimes he looks poorly. Sometimes he's miserable. Sometimes he wants nothing other than to lie in bed, or on the sofa, and watch TV. And sometimes he is too weak and his body hurts too much for him to walk from the car park to the hospital. He has to be pushed or carried. But once he is through the worst of the after-effects of chemotherapy Adam is much like any other 6-year-old boy. Albeit one with an IV line coming out of his chest, no hair, and a couple of paranoid parents ready to reign him in whenever he gets a little too daring. I don't know whether people truly get how seriously ill Adam is when they see him. We've met a number of children during our journey that I know are in a better position than Adam, but when you look at them you'd think precisely the opposite. And similarly other parents have remarked how strong and how well Adam looks. And yet we know the reality of his test results that show the extent to which the cancer is still present around his body. I'm glad Adam looks well on the outside, I just wish with all my heart that he was well on the inside.

On Monday I got concerned again that Adam wasn't having another blood count done until Tuesday, with chemo due to start again on Wednesday. For the sake of a 30 minute trip to Epsom General we decided to have them checked. We had GCSF in our fridge still, but the expiry date was 9am on Tuesday so we had to use it or lose it. In the afternoon his counts came back and his Neutrophils were exactly 1. So we called the Royal Marsden and had another trip to Epsom to have one more infusion of GCSF that evening. Without it we'd almost certainly have not started treatment again on Wednesday.

Fast forwarding it's now Sunday night and Adam has started his 48 hours continuous chemotherapy that will go on until late Tuesday afternoon. I'm finishing off this latest post. I always seem to write these things in here. I guess there's not a whole lot of other things to do, especially once Adam is off to sleep.

Yesterday I had a long chat with the head of the childrens unit here, who is also the UK's leading expert on Neuroblastoma. Hand on heart I can honestly say there is nowhere I would rather Adam be treated in the UK than in the Royal Marsden. As traumatic as this whole situation is I know we should be thankful that we ended up living where we do. There is a plan for where Adam's treatment goes next. But nothing can be certain until after his next set of examinations at the start of May. For now I'm a little more calm, a little more reassured that there is some light at the end of the tunnel. Reassured until the events of yesterday get overwritten.

Wednesday, 7 April 2010

What to do next...?

So Adam started chemotherapy again today. The 6th and final cycle of TVD. He's had his 5 or 6 days of being reasonably well and now it's time to hit the skids again. Tests at the start of May will determine what happens next. It's not quite now or never but if Adam's bone marrow is still infected and his MIBG scan still not clear then we definitely move off standard protocol. I'm not at all hopeful that the tests will give us the results we are hoping for. Perhaps it's that the more times I sit in the consulting room and hear the words 'bone marrow still infected and MIBG still shows areas of disease', the more I expect it the next time too.

Assuming my fears are realized and the test results remain the same our options seem to become quite limited. We can try more chemotherapy drugs. Temozolomide and Irinotecan are two that have been mentioned. These are well established cancer drugs but are relatively new to paediatric cancer. Clinical trials have shown sufficient responses in Neuroblastoma patients to justify their continued usage. We could harvest stem cells and then look to do MIBG internal radiation therapy. This is similar to the MIBG scans of which Adam will have had 5 after the next one in May. However the dose of the radioactive agent is far far higher in MIBG therapy. Enough not only to seek out cancer cells but to attack and destroy them as well. There are only two places in the UK where it can be carried out - RMH and UCLH. They have the special lead-lined isolation rooms that are required for this treatment. I probably don't need to say any more than that about how pleasant it is.

At this juncture it's probably worth making the point that if Adam's tests do come back clear it doesn't actually mean he is free from disease. Bone marrow is only taken from two sites and a negative result may simply mean that there is only small amounts of dispersed NB cells and they haven't been picked up. But we all know that the only good number of cancer cells to have is zero. Two of the main areas of Neuroblastoma research are disease detection and treatment of residual disease. More accurate detection techniques will enable treatment to become more targeted and more timely. But that will come too late to help Adam. Treating residual disease is what we are raising money for... but we've got to get to only residual disease left first.

One of the possibilities we are faced with is to harvest Adam's stem cells whilst he still has disease in his bone marrow. I find this prospect horrifying. Truly I do. You harvest Adam's stem cells and take some NB cells along with them. Then you pump one of the most toxic combinations of drugs known to man into him wiping out his immune system and leaving him frail and vulnerable. Then you put the stem cells back. And in the process you put the cancer cells back too - and tell them to have a good time presumably? I believe they do irradiate the cells outside the body before they are stored, but I don't think this has ever been proven to be effective.

You might be forgiven for thinking that I know what I'm talking about btw. Of course I don't really I'm just a freaked out parent who sees most things over-simplistically.

The reason for harvesting stem cells even if they are likely to be infected is that having some stem cells to play with is better than having no stem cells at all. You have MIBG therapy and you completely kill off the bone marrow. You have no stems cells and you can't grow the bone marrow back again. Additionally I've been told the more chemotherapy you have the harder it is to harvest stem cells. Although on this last point I've also heard anecdotal evidence to the contrary.

What I know is we have to get Adam to remission but we've got to do it in such a way that we maximize the chances of avoiding relapse. It's why I'm fixated on immunotherapy. And why I've even started to think that Adam might have a better chance by going to America sooner rather than later. I don't want to get to the point where Adam's treatment is dictated by what there is left to try. Maybe it will come to that - it's part of getting beaten by this disease. But just maybe there are better alternatives out there at places like Memorial Sloan Kettering. I suddenly feel like I have to find out, and find out now. I know their approach is different and based much more heavily on immunotherapy rather than chemotherapy. Well hey, chemotherapy hasn't really worked all that well so maybe it's time to give something else a shot?

All things considered I have a lot of stuff going on up top at the moment.

My next entry is going to be more frothy and lightweight. Promise. I'm going to write about all the nice things Adam did over Easter and earlier this week. I'm absolutely determined, I want you to hear about them. I meant to do it today but my internal musings got the better of me.

Sunday, 4 April 2010

Sorry, there is no other way to put this...

I tried yesterday evening to write about my day, but despite numerous attempts nothing worked. You see I was trying to get across what I thought and how I felt and the problem was it didn't matter what I wrote I simply couldn't do justice to the reality of it. And I came to realise that this blog has to either be the honest, and sometimes brutal, truth of the situation we find ourselves in, or a self-censored parade of posts that profess to be something they are not.

Well as of now it's the former.

As I woke up yesterday morning I was in a vision where I was sitting at Adam's bedside stroking his hand as he died. And for the first couple of hours of the day - in the shower, getting dressed, having breakfast, sitting at my computer I couldn't shake it. It was there with me and I simply could not make it go away. As soon as I stopped concentrating on whatever specific thing I was doing I was back to it. It was only finally when I got out of the house and had some real purpose about my day that I managed to leave it behind. And then I was fine again, I was back in the moment.

Friday, 2 April 2010

I took this photo whilst waiting for blood on Thursday. I told Adam I was going to put it on the appeal website to which he replied "No, you can't do that. Nobody will donate any more because they'll all think it's too disgusting". Well here's the photo anyway. Let's hope he's wrong.

Thursday, 1 April 2010

Back to life, back to reality...

Tired today. Got a call to say Adam's HB and platelets had dropped and he needed transfusions of both. But you can't just go straight up to the hospital, you have to wait for them, sometimes for many hours. I was at work, all the kids were at home, Jake had football 5.30-7.30. And bearing in mind that we'd be in hospital for 4 or 5 hours we wanted to get going as soon as the call came which meant our evening meal plans went out the window. It's 8pm as I write and I've been here for nearly 3 hours now, Adam has been hooked up for 2 of them. Not heard whether his platelets are ready but I'm not hanging around once the blood is finished if they are not. It'll already be quite late. Just have to do it tomorrow when we come up for GCSF.

Now work this out. Last week his platelets were 13 and they didn't transfuse. Today they had dropped from 21 to 18 and they decided to. When you find yourself in the position we do you have to learn from other people's mistakes and make sure that when they are about to be repeated you step in. I don't mind about him having platelets today. It's the previous time when he didn't that I'm still miffed about. Ask any oncology parent and you'll find similar stories. You have to take control as you are the one constant that sees all of the treatments, the hospital stays and of course how Adam is at home. We do things now that we could never have envisaged back when Adam first started treatment. Sometimes you just have to tell the medical professionals how it is.... politely of course.

When we came in Adam was in good spirits. We played with Jake's old Yu-Gi-Oh cards for a while and he was all happy and smiling. But since his blood went up he's been a bit low; just laying on the bed, watching TV and being rather grumpy. Could be he's tired because of low HB. Or it could be that his body will take a little while to adjust to the blood. Because, despite what Adam thinks, it's not his and sometimes he reacts in this way. And he also keeps playing with his 'lines' - something he always does when he has low platelets.

Adam decided he wanted his Mum to stay with him for a little bit and then take him home so we did a quick shift change. Around 22:30 the doorbell rang and they were home. The nurses had tricked us a little bit. Although they'd got two bags of blood for Adam he only need about a quarter of the second bag. And platelets only take around 20 minutes. So now he's all transfused up. Hopefully for the last time until after the next cycle of chemo.