Monday, 20 December 2010

A Happy Christmas … we hope …

Adam’s latest blood results were on the up but still not sufficiently high to seriously consider pushing for any more treatment before his next MIBG therapy at the start of January. These gaps in treatment have always been a concern to me and to be honest since July Adam has only had a five day course of oral temozolomide and a 3-hour infusion of cyclophosphamide. It’s hardly intensive stuff. Of course he also had his first MIBG therapy at the end of September but I am never sure how long lasting inside the body MIBG is. I also have to keep in mind that Adam has had a lot of chemotherapy; (literally) a lifetime’s worth of sub-lethal doses of some of the most poisonous drugs modern medicine has to offer. Much of it has done very little other than destroy healthy cells and cause collateral damage to some of Adam’s vital organs. How much of it has done more harm than good? We’ll never know the answer to that. However, I am entirely convinced that there have been occasions when Adam has been having treatment that has made me feel better because he is having treatment, but that has done absolutely nothing whatsoever to combat his cancer.

So now we’re just hoping Adam stays well over the coming weeks and has the best Christmas ever here at home with his family. No doubt we’ll spoil the kids as we usually do, the difference now is that I don’t even care in the slightest.

We’re due back on the treatment bus on January 5th now. Our schedule for UCH has been put back by one day so they can ensure delivery of the radioactive isotope. I say ‘ensure’. It comes over from Germany I believe the day before it’s administered so there is always the possibility that if the severe weather over UK and Europe continues into the New Year it could end up delaying things still further. That’s for another year though, we’ll cross that bridge if we get to it.

For now all that remains is to thank everybody for following Adam’s story, and for supporting Adam’s Appeal during 2010. Believe me when I say it has brought us much more than just financial assistance.

Wishing you all a very Merry Christmas and a Happy New Year. x

Adam's Appeal Xmas

Tuesday, 14 December 2010

The Countdown to Christmas Has Begun …

So it looks like Adam will be having an uninterrupted run between now and Christmas. His blood counts on Friday were not great on the platelet front and the thinking is now that we’ll let him recover from the cyclophosphamide and stem cell harvest before we go into MIBG therapy at the start of January. The centrifuge that separates the components of the blood during the harvesting procedure is particularly destructive on platelets, and his count supressed by chemo wasn’t that high to begin with. We are getting his bloods redone tomorrow so we can see how things are progressing, but actually UCH is only 3 weeks away now so there isn’t really time now to do anything before then. However, I know better than to make a completely definitive statement to that effect. I’ve learnt it’s best to keep the language on here littered with a liberal dose of ‘probably’ and ‘looks like’ and ‘really’ and ‘in all likelihood’.

Today was Alison’s 40th birthday and it’s been a really good day. Not the birthday that we once thought it would be; but we’re not the first couple whose long standing plan of going away somewhere special for a something-zero birthday never materialised. Maybe one day. For now it was enough that we were all home together and able to enjoy the day as a family.

This morning Alison and her parents took Adam to see Santa at one of the local garden centres that has built up something of a reputation for putting together a good festive display. Adam returned in a brilliant mood. “It was SO good” he told me before showing me the collection of Christmas decorations that he charmed/hassled his Mum into buying him whilst he was there.


At the moment Adam is eating well and we are continuing with the supplementation and daily routine that we hope will strengthen his body and boost his ability to fight this disease from within.

Now we’ve got Alison’s birthday out of the way we can focus our attention towards Christmas; hoping everybody stays fit and well so we are able make the most of that precious family time too. We intend to enjoy these next three weeks as much as possible, knowing as we do that 2011 is going to be a tough year with treatment until at least September, and most probably beyond.

Friday, 10 December 2010

Stories From The Archives – Part Two …

When I launched Adam’s Appeal I had absolutely no idea what I was going to do to try and make it successful. I didn’t have a master plan, I didn’t really have any plan at all. I knew I needed a decent website and thought I could also benefit from having a presence on the social networking sites. Beyond that? There wasn’t a beyond that.

My very first idea, and not a very original one I’m sure, was that maybe I could enlist Chelsea FC to help raise some publicity and awareness. Their training complex is not that far away down in Surrey and John Terry used to live in Epsom and had quite recently visited the Junior school attended by Jake and Jessica. I figured it couldn’t hurt to ask so I sent an enquiry via the club’s website and got a response back giving me an address to which I needed to write. I sat down and wrote a letter explaining a little of Adam’s illness and why we were having to launch an appeal. I never asked them for money; I asked them if there was any way in which they could help raise awareness for the appeal launch and specifically whether they could pass a copy of the letter to club captain John Terry, for the reasons aforementioned above.

A couple of weeks later I received a reply to my letter. It said they could not support us as they only dealt exclusively with their nominated charities and would therefore not be donating any money but wished me well. It was a bog standard bog off. Completely impersonal and clearly not addressing the specific requests in my letter. Money? I didn’t even ask them to donate a penny. I actually felt a little hurt at the time, though since I have come to realise that they must get literally hundreds of begging letters each and every day. Not that mine was a begging letter I hasten to add!

It wasn’t a very auspicious start.

When I was putting together stuff for the website I came across the letter and decided that with one or two edits it would be suitable to make available for download. I thought if anybody wanted to use it to send to other organisations or individuals then it would make their task easier. So up it went and I thought no more about it.

A couple of months later an email came in to say that a particular charitable trust had donated £5,000 towards the appeal. When I asked how they had heard about Adam, I found out it was the result of a letter sent by a former employee of a company related to the trust. This person has been talking about the appeal at a social gathering one evening and the suggestion was made that she should write to the trust to see if they could do anything to help. Consequently she downloaded the letter from the website and sent it to them.

A couple of weeks after sending the letter she received an envelope through her letterbox which contained a cheque for £5,000, leaving her feeling extremely pleased with what she had achieved. It may not have taken her very long to do, or required a large amount of effort, but if she had decided it wasn’t worth following up and had instead done nothing we would never have received a single penny of that money.

It’s just another example of how things happen in ways one could never foresee – and for every knock back there just might be an unexpected pleasant surprise waiting round the corner.

I didn’t feel so bad about the few quid it cost me to send that letter special delivery to Chelsea after I heard this story … it turned out to be a fantastic investment after all.

Thursday, 9 December 2010

Stories From The Archives – Part One …

Every now and again somebody asks me about that donation. I’m referring of course to the £100,000 that was given to the appeal back at the start of May, transforming it from doing very well to doing phenomenally. At the time it was decided that we would simply refer to it publically as an anonymous donation; in the sense that the benefactor was, and still is, a complete stranger to us it was anonymous. However, there is a little more to the story than that and now the season of goodwill is almost upon us I’ve decided to share some more details on here about it. Mainly because it demonstrates that there are people in this land who are capable of spontaneous acts of amazing generosity without wanting or needing anything in return. People who do things not for the want of recognition or adulation, but simply because they have the means to so, and they hope it will make a positive difference.

It was Thursday May 6th. The week before we’d received the latest set of Adam’s scan results and were told that for the first time there had been no improvement at all from two months ago. Adam then developed cellulitis and was put on daily antibiotics to deal with it before we could start a different type of chemotherapy. It wasn’t the best of times.

I was at home looking after Jake and Jessica on this particular day, I can’t remember exactly why (clearly I was looking after them because they are my children, what I mean is I don’t know where Alison and Adam were). I was on twitter trying to get Ruth Lorenzo (who was possibly going to come and sing at Adam’s Appeal Ball) to re-tweet  one of my messages. At the same time I was preparing to update the website and announce with a big fanfare that the total raised had reached £100,000. I was in a hurry as I had to take Jake to football training which started at 6 o’clock.

A new email notification appeared on my screen. I took a cursory look at it then quickly returned to the other stuff I was doing online. The email, as I read it, said that the owner of a metals trading firm had authorised the payment of £100.00 towards the Adam Bird Appeal and the money had been transferred accordingly. My initial thoughts I can tell you were ‘that’s nice’  and ‘i don’t recognise the name of the company’. Here is the actual email. I have removed names for one simple reason, from that day to this day the owner of the company in question has no desire for it to be in public domain.

To: <>
Dear Sir,
As requested by the owner of xxxxxxxxxxxxxxxxxx, we have today
transferred £100,000 towards the Adam Bird appeal.
We hope that this goes some way to assisting in obtaining successful
treatment for Adam.
Proof of payment is attached.  Please advise should you have any
problems receiving these funds.
Best Regards
For and on behalf of

You can no doubt spot my mistake, but I was in a rush and I didn’t read it properly!

I only discovered my error when Debbie who manages the appeal called me up and asked me if I’d seen the email. She sounded a little excited but I had no idea why – I assumed it was a completely different email to which she was referring. The conversation went something like this:-

“Have you seen the email?”

“The one about Ruth Lorenzo? Yes, I’m just trying to message her on twitter as we speak.”

“No not that one, the one about the donation.”

“Oh that one. Yes I saw that”. As cool as the proverbial I was, I still had no inkling at this point. “I have no idea who’s behind it.”

“Did you see the amount?”

"Yes. One hundred pounds.”

"I don’t think so… you need to take another look at it.”

Honestly, I’ve not made any of this up. When I first looked fleetingly at the email what I thought I saw was one, zero, zero, dot, zero, zero. When I looked properly this time what I actually saw was one, zero, zero, COMMA,, zero, zero, ZERO.

Oh my goodness (or words to that effect). Is that for real? Does it really say one hundred thousand pounds? Is is genuine? It looks genuine. How can we find out for sure that it’s genuine? I opened the proof of payment and it looked … well … like a proof of payment. I suppose my reaction was one of amazement and disbelief, coupled with the thought that I ought not to get too carried away until we were entirely certain of it’s validity.

Now I’ve got Jake nagging in my ear. Damn, it’s 6 o’clock. I should have left to take him to football training 10 minutes ago. It was surreal. I remember when I got there telling his coach “I think somebody has just donated a hundred grand to the appeal, but I’m not quite 100% sure yet.”

I called one of the trustees of 2 Simple Trust and explained to him what had just happened. He in turn contacted the bank. It was outside working hours, they wouldn’t be able to confirm receipt of the funds until the following morning! So that was that, we just had to wait. I was 99% sure that it was exactly what it appeared to be, but I don’t think I would have been human if there wasn’t a nagging doubt in the back of mind.

On Friday morning I received a message from the same  trustee to say the bank had confirmed a payment of one hundred thousand pounds had been made into the account and everything was in order. Unbelievable. Just unbelievable. You hear in the newspapers about this high profile figure, or that wealthy celebrity, making large donations to various charitable causes and it’s one of the things that occasionally I had thought about. Maybe if I can get this person to talk to that person who knows  that mega-rich famous person then… but this donation came out of absolutely nowhere, not from anybody rich and famous, nor from anybody wanting anything in return – not even as far as I could tell a thank you. They just wanted to help, pure and simple.

So much for my plans for the big announcement that we’d reached one hundred thousand pounds! Suddenly the total had doubled overnight, and I think at that point everybody really believed that if pushed on we’d certainly reach our target and beyond.

I must confess that at the actual time we received the donation we were not actually that excited about it. It was amazing and unbelievable yes, but we weren’t ecstatic or filled with glee. What you have to remember, and what is difficult (impossible?) for people to truly grasp unless they’ve have been in our situation is this. Adam is suffering from an aggressive, life-threatening illness. We’ve just been told that the last two months of treatment haven’t worked and he is no longer showing any positive response on his diagnostic scans. And on top of that he has a lump which the doctors think might be cellulitis and are treating accordingly. But they’re not sure what it is. And they’re not sure how long it will take to clear up. And until it’s resolved Adam can’t have any more chemotherapeutic drugs for his cancer. So right then, in that moment, we were at a low ebb that no amount of money was going to pull us out of. But not doing cartwheels is not the same as ingratitude. We were, still are, and always will be, deeply grateful. But I’d be lying if I said I didn’t have to put on a happy face once or twice when asked about it, for fear of appearing like an ungrateful (excuse my language) bastard.

Sometime later I did find out a little more about how the donation came about, not least because I wanted the opportunity to send a thank you to the person ultimately responsible for it. It transpires that it all began with an email - sent by somebody, related to somebody, who had a connection with Jake, my eldest son and Adam’s brother, seven years ago. At around the same time I put a video online of Adam running out with the West Bromwich Albion team. Somewhere in London a metals trader who I will most probably never meet or even speak to face-to-face saw that video and made up their mind about what they wanted to do.

And that ladies and gentlemen is how Adam’s Appeal came to be the beneficiary of it’s largest single donation.

Wednesday, 8 December 2010

In the snow …

For those of you who don’t follow Adam on facebook here are the photos of Adam out in the snow on Tuesday and Wednesday of last week.

The facebook group is in case anybody is interested. I don’t think you need to be a facebook user to see the group, so bookmark it now!

facebook_photo_download_2502931022550511328 facebook_photo_download_2502931022550511342facebook_photo_download_2502931022550511330  facebook_photo_download_2502931022550511333 facebook_photo_download_2502931022550511334   facebook_photo_download_2502931022550517556 facebook_photo_download_2502931022550517557 facebook_photo_download_2502931022550517558

They’re like London buses …

Now I’m betting there’s at least one person out there in this virtual world in which we communicate that is wondering why I didn’t write anything for two weeks and now I’ve posted three times in as many days. The reason is very simple and has very little to do with cancer. I’ve been playing around with different external blog editors to see which I find easiest to use, it’s something I should have done a long time ago!

So that this isn’t an entirely bogus update, one artificially crafted for technical pursuits rather to inform my readership (steady!) of Adam’s progress, I do actually have something meaningful to tell you as well.

The current plan (subject to change on past experience) is that we will be taking Adam back up to UCH in London for another round of 131I-MIBG internal radiation therapy on Tuesday 4th January. Which, of course, means that Adam will be at home over Christmas without any restrictions and (as long as he remains well) able to participate in the festivities. We don’t yet know if there are plans to give him any further holding chemo between now and then, that is something I need to discuss with the hospital this week. The one infusion of Cyclophosphamide is the only stuff he’s had since August and his previous MIBG therapy was at the end of September. By the time he has the next one it’ll have been 5 weeks since the chemo, and more than 3 months since MIBG.

After MIBG the current plan (subject to change on past experience) is to go into high-dose chemotherapy with stem cell transplant within the month i.e. sometime in January. That will be a 4-8 weeks inpatient stay at The Royal Marsden. With yet another MIBG and radiotherapy to follow the likely date for immunotherapy looks to be around April now. But it’s all subject to change. Always.

At the moment the only place Adam can receive immunotherapy is in Greifswald in the former East Germany. This is ch14.18 antibody given with the cytokine IL2 (to rev up the immune system) as a continuous infusion. It’s not the same as the U.S. treatment that has proven efficacy and that we initially started to fundraise for (ch14.18 + IL2 + GM-CSF). Adam’s slow progress has meant he no longer qualifies for the U.S. trial. I am going to over-simplify the reason why, but most fundamentally it’s because if they gave the treatment to every child they would run out of supplies faster than a new batch could be manufactured. So instead they hold it back and give it just to children who meet the entry criteria of the original clinical trial on which the efficacy was proven. It might (or might not) work just as well for Adam, but it’s not been proved yet. Even children in the United States don’t get it at the moment if they fall into the same category as Adam…

The current European (SIOPEN) immunotherapy trial that was hastily introduced at the end of last year (and of which the UK is a participant) has the same entry criteria as America – specifically it’s only open to children who reach high-dose within 9 months of diagnosis – which is why Adam doesn’t qualify for any treatment here. I can tell you that as far as I’ve been told that number has absolutely no medical significance. It’s purely there so that the sample set have a certain homogeneous nature in order to preserve the statistical significance of the trial outcomes. The UK trial also randomizes children to either ch14.18 + IL2 of ch14.18 alone. This has been a significant bone of contention with informed parents, as a previous study undertaken in Germany some years ago concluded that ch14.18 given alone did not result in improved outcomes. However, years later after the study had been closed researchers went back and looked at the data retrospectively and then decided the initial findings were flawed and there was a benefit! So part of the current EU/UK trial is going back over old ground inadequately covered by the Germans years ago. Now I’m quite certain I’ve over-simplified – I’m a humble layperson not a doctor or researcher; but whichever way you look at it things have turned out quite unsatisfactorily. I refuse to believe it’s actually the case, but sometimes it does feel like these children are first and foremost viewed as trial subjects rather than sons and daughters, brothers and sisters. The outcomes of these clinical trials might benefit the next generation of children diagnosed with Neuroblastoma, but what parent would want that to be at the expense of their own child? In the modern era of information sharing, internet and email I foresee more and more difficult questions being asked of doctors, researchers and policy makers alike.

Anyway, back to the (current) German trial. It is hoped that it will be at least as effective as the U.S. treatment, but with fewer and less sever side-effects. However, it’s still bad. Very bad. Pain controlled with intravenous morphine, hives, capillary leak syndrome, fluid retention, renal failure. And that’s by no means an exhaustive list. The cost is in the region of £70,000 which is considerably less than the U.S., but that’s the part I care about least to be honest.

On the horizon there should be (at least) two new trials opening up in the coming months that might offer us different immunotherapy options for Adam. It all depends on the exact timings, both of the trials opening and of Adam’s treatment. In the first half of 2011 a second European trial is planned in which the UK will be participating. Other than the fact it will be open to all children, including those excluded from the initial trial I have no further information at the moment. At the same time a new trial in US is hopefully going to be opening for enrolment which administers the ch14.18 antibody with a different immune system booster that’s it’s believed will both enhance the effectiveness of the antibody treatment and simultaneously reduce toxicity.

There is so much about having a child with Neuroblastoma that I could not have envisaged for one second when Adam was diagnosed. In the early days it was all too much and we just ‘went with the flow’ and that’s really how I’d always perceived things to be when somebody got seriously ill. Somebody (and you know who you are) told me very early on that they had read Lance Amstrong’s book and when he was diagnosed with cancer he made it his business to find out as much as he possibly could about his disease, and the influence that he could have over his own destiny. In some ways I wish I’d started to get educated a lot sooner than I did, but I guess I just wasn’t ready at the time. Don’t get me wrong there are still huge gaps in my knowledge but at least I know who to speak to, and for the most part what to ask.

Time to sign-off. I need to find out what is happening (if anything) with Adam between now and MIBG therapy in January, and then try to learn more about the new antibody trials in UK and U.S. Oh and I need to do some shopping. Alison will be quietly turning 40 years of age next Monday. I must remember to get her a card. One of the (many) challenges of having a child like Adam is to try and stop the rest of your life passing you by… because if you’re not careful that’s precisely what starts to happen.

And by the way, Windows Live Writer was the external blog editor of choice for this post; for any of you technically minded people that might be vaguely interested. Despite instinctively hating all things Microsoft it’s actually quite good. I’ll probably use it again… in a couple of weeks time.

Tuesday, 7 December 2010

The Harvest Is In ...

We took Adam into hospital late afternoon on Sunday in preparation for stem cell collection this week. During the evening he had pre-hydration in order to pump up those veins before vascath insertion the following day. His blood counts on admission were, quite simply, rubbish. Despite a full week of GCSF his white blood count was snubbing its nose at the nurses who had braved the awful weather conditions to get out to us and administer Adam's daily infusions. They were so poor in fact, that surgery was delayed on Monday pending a repeat set of blood results.

The first I heard of all this was a text from Alison on Monday morning saying 'blood results not good. Might not go ahead'. I suddenly thought to myself that we should've been prepared for this eventuality and we were not. We hadn't sat down and asked what happens now. Adam's white cell counts have always taken longer to recover than his platelets - which had themselves now begun to climb again after the chemotherapy. Why did we suppose that this time it would be any different? Had we seriously believed that Adam would simply respond to the priming in the manner required for it to be successful? How stupid were we?

I then got to wondering and worrying about what would happen next. The hospital had squeezed Adam into an already full transplant programme. The harvest had been delayed twice before; once because Adam hadn't yet recovered sufficiently from MIBG therapy, and the second time because the hospital were 'fully booked'. The machine used for the harvest itself belongs to, and is borrowed from, the adult unit. Were we going to hit problems and then find out that we'd missed our slot? How come I was asking these questions now when I should have asked them weeks ago. It wasn't that I was getting worked up about what the situation itself. Perhaps there was nothing to worry about. Perhaps this possibility had been factored in and the hospital could accommodate a delay of a day or two. I was annoyed with myself that I hadn't second guessed this would happen back when I could have tried to do something to ensure there was a Plan 'B'.

As I sat pondering what I would do if they told Alison it was no good and she'd have to take Adam home I received another text message. 'He's in. Going ahead today'. Huh? What? It transpired that overnight Adam's blood count had risen sufficiently (I think from zero point something to over six) for them to crack on with the original plan. I knew there was a reason I'd never bothered to think about what happened if things got delayed...

Not that I am a naturally suspicious person (I don't think so anyway) but it did fleetingly cross my mind that perhaps they were going ahead because they couldn't accommodate a wait-and-see approach, and therefore the only other option would've been to send Adam home. I know, I'm a crazy fool. I have to confess, my world does get a little paranoid at times.

By the time I arrived at the hospital Adam was awake from the general anaesthetic. Emotional. Angry. Moaning about the baby opposite who 'screamed all night long and didn't shut up and kept waking me up and I couldn't get back to sleep again.' On the plus side he didn't throw anything or try to punch anybody, specifically me. All-in-all not a bad result then I guess.

The harvest itself was uneventful and unremarkable. I had to make a quick dash for the commode at one point when Adam announced 'I need the toilet. It's a poo. BE QUICK, I NEED IT NOW.' There is no dignity in circumstances such as these. However, do spare a moment for the nurse who had to reset the machine next to Adam whilst he was in full flow. He was oblivious - too busy craning his head round so he could watch something on TV at the same time.

This morning we learnt that Monday's harvested yielded 1.1 million cells. The whole process was repeated today and yielded a further 0.9 million. Having achieved the objective of acquiring enough cells for two clear transplant procedures, Adam came home this evening. No point in doing a third day - diminishing returns and we've done what we set out to do. I said 3 x 2 was better than 2 x 2 didn't I? Having gone through an enormous amount to achieve the number of cells that we have, nothing would give me greater pleasure than to only ever have to use half of them ... the rest, as our consultant keeps putting it, 'will be for a rainy day'.

Stem Cell the Third

Adam’s latest chemotherapy was an odd affair. For the first time ever (literally) he had a severe adverse reaction which manifested itself in him spending the early hours of Sunday morning throwing up at regular (short) intervals. It began, according to Adam, when he got up too quickly out of bed to use the toilet and that made him feel sick. What’s beyond doubt is that it didn’t stop until well into Sunday.

I use the word ‘odd’ because we have seen Adam go through eighteen rounds of chemotherapy before this one. On a rough calculation that equates to around 90 days of chemotherapy, or on average 1 day out of every 5 since he was diagnosed last July. I could prattle on some more – I’ve got Microsoft Excel open alongside this – but (hopefully) you get the point I’m trying to make. He’s had a lot of chemo. So I guess we’d got a little blasé about it, or as blasé as you can about poisoning your own child. We’d even discussed and seriously considered the idea of taking him from hospital to Birmingham for his cousin’s 18th birthday party, though we eventually decided against it. Stupid bloody parents.

Apparently it wasn’t the first time he’d had cyclophosphamide, news that came as a surprise to both of us as it certainly didn’t ring any bells., He’d has it twice before as part of the induction therapy cocktail of drugs that were given between Day 0 and Day 80 (protocol speak). But those early days (even though that’s a three month period) were, are, and forever will be a complete blur. A whirlwind. Living on the emotional edge. Three days of chemotherapy, seven days off (or rather in Epsom General with fever, constipation, and general malaise). And repeat. Day 0, Day 10, etc. mark the start of the next cycle. Day 40 is half-way scans and Day 80 is end of induction therapy with more detailed scans (and in our case the devastating news that Adam still had lots of disease).

The biggest problem with Adam being sick wasn’t so much the vomiting itself. He doesn’t make too much of a song and dance about it (as opposed to his sister who HATES being sick and fights it as long and hard as she possibly can before the inevitable happens). The biggest problem was that it completely trashed his appetite and the remainder of the week was a slow and gradual climb back up from eating nothing to almost full portions again.

Despite the eating problem Adam was determined not to miss out on the chance to enjoy the wintry weather. On Tuesday when the snow came down hard he told me he was going to go outside once it had stopped “because then there’ll be the biggest amount to play with". In truth I thought he said it because he wanted to go out but at the same time didn’t really feel up to it. I should have known better than to doubt him. As darkness descended he donned his hat, gloves, coat and wellie boots and out he went. Adam’s always had an amusing style when it comes to outdoor play, whether it be sand, sea or snow. And so, despite spending the previous 48 hours alternating between his bed and the sofa, he sat in the snow, he knelt in the snow, at one point he even stuck his bloody head in the snow as if shaping to do a headstand! I did think he took things a little too far, however, when he pushed his Dad over and covered him with freezing cold snow. In the ears and up the nose, not a good combination.

On the Monday after chemo Adam began a week long course of IV GCSF to stimulate his bone marrow in preparation for stem cell collection. Which on Monday wasn’t much of a big deal; our community nurse came, did the infusion, and went on her way again. Tuesday was a little more problematic but the infusion was in the morning and at that time although the snow was coming down quite heavily it still wasn’t as bad as it was going to get. Our nurse lives in Sussex and having returned to the hospital after visiting us she left for home at 2pm and arrived back at 10pm. One of many with similar stories I’m sure. Somehow the team managed to get through to us every day. There was no way they weren’t going to – no matter how much walking was involved. We’re incredibly grateful and lucky to have such a wonderful team of nurses who look after Adam when he’s at home, and last week only served to reinforce that.

On Sunday we took Adam into the Marsden to prepare for the third stem cell collection. To recap the previous two had yielded just over 4 million cells. Whilst this is plenty for transplant after high-dose treatment, the ideal number to return is around the 3 million, leaving precious little remaining should more be required at a later date. The expectation is that despite more MIBG, high-dose and antibody therapy Adam will emerge late next year still carrying a disease burden of some magnitude. Without stem cells treatment options become ever more limited. I was never comfortable having only 1 million left over, or splitting them into 2 x 2 and going through transplant with the bare minimum. So after some pestering of discussion with the doctors we agreed to attempt stem cell harvest numéro trois. There isn’t a magic number that we need, and we know from experience and blood counts that we’re never going to get an abundant supply. But 3 x 2 is much better than 2 x 2.