Yesterday...

Yesterday was yesterday, today's another day. Taking Adam in to have blood taken for pre-harvest serology and collecting his GCSF. Blood results are only valid for thirty days so the previous set cannot be re-used. Amusingly the purpose is to check for HIV... you can't donate stem cells (even back to yourself) if you are HIV-positive.

I see very little point in dwelling on the events of yesterday. My life is stressful enough as it is. The money has been transferred across and the treatment is going ahead as planned. Our efforts are best focused looking forward rather than back.

I would hope the process continues to some logical conclusion (including the PCT meeting on Wednesday) for the benefit of the next family that comes along in this situation. Adam isn't the first child for whom this drug has been requested (although PCT is a matter of home, rather than hospital, location). The next family may not be fortunate enough to have the charitable support that enables them to take matters into their own hands.

I'm not making this up...

So here's the situation. The PCT have continued to prevaricate and have not made a decision on whether to approve the funding for Plerixafor, the drug requested to support Adam's stem cell harvest. Very magnanimously they have agreed to reconsider the request at a meeting next Wednesday, but even then there seems to be a more than even chance that they will reject it. In any event the harvest process is supposed to begin tomorrow and continue through to the end of next week. A decision on funding next Wednesday doesn't exactly fit with those timescales.

I could go into the politics of it all, the debate on who should pay for what, when and why. But frankly I DO NOT CARE. Have the debate in your own time, not when the clocking is ticking on my son's future. Decide amongst yourselves. Have a PCT party with fellow bureaucrats in neighbouring trusts. But don't drag your heels and scratch your arses whilst we are hanging on here waiting and wondering what's happening next week with Adam's treatment.

Actually I can tell you what is happening next week with Adam's treatment. The sum of Twenty Six Thousand Pounds from Adam's Appeal is going to be transferred into the private patient account at the Royal Marsden Hospital and we are going to go get ourselves some stem cells.

The PCT can go screw themselves.

I am not waiting around whilst they pass judgement on my child yet again. I'm so sorry he didn't respond to upfront therapy in a textbook fashion. Because let's face it that's what it boils down to. It feels like he's some kind of trouble kid that the authorities don't know what to do with.

It was one thing to face the prospect of immunotherapy abroad because the UK decided to implement a brand new trial rather than the proven US treatment (the main thing they did copy from the US was to exclude kids like Adam that take longer to respond). But I never thought we'd be funding Adam's treatment inside the UK.

This had better work now. We'd better collect a ton of stem cells. I'm demanding value for money.

I'm also incredibly pissed off right now. Though, I might add, not at The Royal Marsden itself. Their hands are tied. This is clearly the system and the PCT at fault. Unfortunately I don't have any specific individuals at which to point an accusatory finger (or two).

I'm also not making any of this up, for those of you innocent things out there who think this is unbelievable. It is unbelievable, but it's also true.

All change please, all change...

Okay so here's the thing. Adam pencilled in for stem cell collection next week and surgery requested for the following week. I am getting a little impatient that we haven't yet had approval for Plerixafor and I'm also quite conscious of how long Adam will have been without treatment going into MIBG therapy. 

And then in comes the curveball.

Phone call from St George's to say the surgeon is going on holiday and so Adam is booked in for surgery w/c 30th August. Can we please confirm the date?

Two full weeks later than we expected... meaning on this schedule he will be more than 2 months without any sort of chemotherapy.

They are going to discuss options (oral/holding chemotherapy) and we should have an update by the end of the week. It's not as simple as just whacking him with another full dose of chemo, as that would inevitably mean a complete reschedule of surgery. In order to minimize the risk of infection and complications his blood counts need to be sufficiently good before he can be operated upon.

Back to business...

Its been a while since I posted so I figured it was about time I gave everybody an update on what we've been up to and where we're at.

We managed to get away for a few days and enjoy some quality time together. It was lovely to see the kids out playing and enjoying themselves. I honestly don't think Adam's energy levels have ever been higher.

Of course things wouldn't be right without a little bit of hassle thrown in and so it proved. 

We were planning on going down to the coast on Friday evening and staying until Wednesday, as we had to be back Thursday for Adam's CT scan. However, having been referred to University College Hospital in London for Adam's MIBG therapy we received a letter informing us that an appointment had been made for us to see the consultant there on Tuesday afternoon! The Royal Marsden are currently having a new children and adolescent centre being built that is due to open next year. At the beginning of this month the building works break through into the existing unit and will take out of commission the 3-bed bay adjoining the special lead-lined MIBG room. The expectation is that it will almost certainly be impacted in some way; power, water, drainage, etc. as to render it unusable. For that reason we've been referred to UCH. Alison called the hospital and explained our plans to grab some precious time away whilst we could and they agreed to move the appointment to 9am on the Thursday which, whilst not exactly convenient, was the only other time available before Dr Gaze himself was away. Thinking that we could spend the day in London after the meeting we then re-arranged the CT scan to last Friday morning. Hopefully you're all with me so far!

The results of the CT scan came back pretty much as expected. The mass was, if anything, very slightly smaller than on the last set of images and showed signs of further calcification. The scans will be sent over to the surgeon at St George's who will be performing the resection of Adam's tumour.

On Friday afternoon I had a meeting in London with the trustees of The 2Simple Trust. With the charity undergoing structural changes as it becomes the Neuroblastoma Children's Cancer Alliance I was keen to go along and participate. Of course the meeting went on longer than anticipated and consequently I wasn't overly popular when I arrived home just before 8pm. By the time we arrived at our destination it was almost midnight, but Adam didn't seem to mind. On the contrary he was thrilled with the fact that he was up so late for the second night running, having spent the previous evening watching JLS at Epsom Downs racecourse. 'It's nearly midnight again?' he asked, and when I nodded he clenched his fist and exclaimed 'Yes!'.

We had 4 full days away and it was just what we'd hoped it would be. For a while I almost forgot about the 'C' word. Seriously.

On Wednesday after we'd been out for the day it was time to get the house cleaned up, pack the car and head for home. 'Leave things as you find them' I was always taught, so after cleaning and tidying each room we declared it off limits until eventually we were confined to the kitchen. With just a few items to wash-up, the kitchen floor to sweep and mop, and half a dozen items left to go in the car, Jessica kicked the football into the neighbours garden. Adam put his hands on to the brick wall so he could lift himself up to see... and was stung on the finger by a wasp. Oh how he screamed. 

The site of the sting was obvious and within a couple of minutes his finger had started to swell. When it then spread further to his hand we called the hospital to ask them what we should do and they advised us to have it looked at. Another 15 minutes and we'd have been packed and locked up, but instead Alison left me to clean the kitchen (one for the conspiracy theorists) whilst she drove Adam to St Richard's Hospital in Chichester. Fortunately by the time they arrived the swelling had begun to recede of it's accord. After a quick examination, and a slightly longer delay whilst they checked whether there were any other potential problems relating to wasp stings and cancer patients, the intrepid hospital explorers returned once more. And just as we had on our outbound journey the Friday before, we set off for home two hours later than we had originally intended.

Despite the resultant late night Adam was quite chirpy the following morning when I woke him just before 7 o'clock so that he and Alison could get the train up into London for the 9am appointment at UCH. Alison met and talked to Dr Gaze, and then visited the rooms where the MIBG therapy is carried out.  At the moment there are two different types of therapy that Adam might have. Which will depend largely, I think, on how many stem cells we end up with after the next harvest. Option one is less potent and will involve Adam being isolated for a week to 10 days. Option two is a more aggressive treatment in which the MIBG therapy is administered twice alongside chemotherapy (topotecan). This involves a week in isolation at UCH, a week at home, another week in isolation at UCH, another week at home. The complication is that when Adam is 'home' he cannot be in the same house as Jake and Jessica because of the level of radioactivity in his body. There are other restrictions too - anything Adam takes into hospital won't be coming home with him. We've already been advised to take old clothes and nothing of value or importance. Need to work out a strategy for soft-hat and sleeping blanket...

On the stem cell front we were expecting to go in this week to try for another harvest. Stupid us. Coordination and scheduling considerations, and as yet no approval (funding) for Plerixafor, means we are pencilled in for next week instead, with collection 11th - 13th. I am determined Adam will have this drug, even if we have to take him outside of the NHS to get it. With surgery to follow the time that Adam will be without active treatment for his metastatic disease is praying on my mind. I certainly don't want it getting any longer.

It's back to business.

We're sneaking in a few days away...

Adam is beginning to feel some of the after effects of the latest round of chemotherapy. He’s had half a dozen trips to the toilet today.  Alison has started him on Imodium to try to keep it under control. He’s also been a little off his food, and was sick once, though only after downing two fish oil capsules and a vitamin pill a bit too quickly.

We have made arrangement to spend a few days away on the south coast. One of our friends has very kindly offered us the use of their house. I know I keep going on about it, but we are so very lucky. This will be the first time since last May that we’ve been away. Seems longer. Saturday will be one year since we sat in that small pokey little room at St Georges and were told the lymph node biopsy had confirmed Neuroblastoma, Stage 4. Until then we’d still clung to the hope that there’d been a mistake, that the diagnosis would come back different. It wasn’t to be.

The day after we return Adam goes into hospital for a CT scan. He hasn’t had one for a while as the focus has been on his bone marrow disease and bone lesions. The purpose is to get an up-to-date picture of the primary tumour for the surgeon as St Georges who will operate on Adam next month.  There’s always a worry lurking not to far away that these scans will show up something they’re not supposed to. It’s human nature and, very sadly, it sometimes turns out to be true. Hopefully all they will find is a heavily calcified, shrunken, tumour ready to drop off into the surgeon's hands.

Anyway we’re going to try to enjoy the first little bit of the summer holidays that we have together before it all gets consumed by hospitals and cancer treatments. We’re going to try.

Adam's Appeal has now raised more than £300,000 since we started back in March. This is an unbelievable achievement and has happened because of the kindness, generosity, hard work and determination of so many people. 

A MASSIVE THANK YOU to everyone that has helped to make this happen.

I’d especially like to thank Debbie who has been managing the appeal, responding to emails, keeping tabs on all the collection pots, buying flyers & stickers, and running all over the county with t-shirts, banners and collection boxes. She has done a fantastic job (as I knew she would) and we can’t thank her enough. Thanks also to Amanda and Sheena for their continued help and support.

When we started the appeal in March our goal was to raise £300,000 to enable us to fund immunotherapy treatment for Adam in America around September time. We never imagined for one moment we’d be sitting here in July having already passed that figure.

The fact that Adam subsequently stopped responding to chemotherapy forced our plans to change, putting back timescales and narrowing our treatment options. At the beginning of July when Adam’s bone marrow tests came back clear it gave us renewed hope. He will shortly be undergoing a second stem cell harvest followed by surgery at the start of August and MIBG (internal radiation) therapy at the end of August. 

If the MIBG therapy clears Adam’s bone lesions then he will move forward to high-dose chemotherapy and stem cell rescue. If this goes well it’s possible we will be able to take Adam for immunotherapy towards the end of the year - November/December. The current situation is that our destination will be Germany or New York. The amount of time that Adam has been in treatment means he has become ineligible for trials in the UK and elsewhere in America. Ineligible for potentially life-saving treatment, not because there is evidence that it would be non-effective for a slow responder like Adam, but because a) the trial needs a degree of uniformity for those entering it, b) nobody considered the children that fell outside the trial, and c) there is limited supply of the antibody that would run out sooner if all the children are given access to it.

If the MIBG therapy fails then we may have reached the point where UK treatment options are exhausted. In this case we would have to look abroad to continue to fight this disease, again the most likely in Germany or New York. We would then be faced with the situation of having to spend hundreds of thousands of pounds just to get Adam to a position where he can go for immunotherapy treatment. 

Even after everything, immunotherapy included there’s still a more than even chance of relapse, for which there are no curative protocols in the UK.

With all we have learnt since we began this journey one year ago we know that no amount of money can buy a cure for this disease. We also know, however, that a lack of money can bring a premature end to the fight. We’ve heard such stories, and we’ve also heard stories of people spending a million dollars and more. Of people leaving their homes in the UK for years at a time. This could be our fate, we just don’t know. We will do whatever it takes, and use everything we have, to try to win this fight.

With the future so uncertain we’ve decided to continue fundraising for Adam’s treatment despite having now reached our initial target. The summer holidays will bring a natural lull in activities and by the time school starts back Adam should have had his tumour surgery and possibly MIBG therapy too. We should be closer to knowing where our journey will take us next.

It is our sincerest hope that the only money we ever spend is to take Adam for the immunotherapy, and that anything we raise above that can be used to help another child or fund research and projects to bring new treatments into the UK. However, we are realistic enough to know that there a better-than-even chance that we will have to take Adam outside the UK more than once, or for an extended period.

So the appeal will stay open. We know it’s the right thing to do. It is our intention to open a second appeal account, alongside the current one, with fledgling charity Families Against Neuroblastoma (FAN). FAN will allow us to fundraise for a broader range of things such as alternative therapies, travel, accommodation and subsistence. Having embraced an organic diet, fresh juicing every day, wooden beds, non-sprung mattresses, water filtration, non-plastic cooking and storage, and a variety of supplementation and alternative therapies in our pursuit of a cure for Adam's cancer we are committed to replicating all this wherever he travels for treatment. Clearly this will be both costly and time-consuming, but we know how hard this fight is to win. Nothing is going to be easy.

FAN is trying to grow sufficiently to be able to offer real support for parents of children diagnoised with Neuroblastoma in the UK. We know from experience that currently when a family receives the same devastating news that we did there is no clear organisation to turn to for information, help and advice. FAN aims to be that organisation.

We hope that by associating Adam's Appeal with FAN, and thereby introducing it to our friends and supporters, we might in some small way help it to become more widely recognised and supported.

It only remains to say that if we do not raise another penny we won’t be any less grateful for the efforts of so many people; friends, family, colleagues and complete strangers alike that have got us to this position. 

Thank you all so much. We wish you a safe and happy summer holidays.

Nick, Alison, Jake, Jess & Adam

15th July 2009...

The day Alison took Adam to A&E because the pain had returned in his neck and at the base of his spine. 

The day I took Jessica to her infant school leavers party. On the way I took a couple of photos on my mobile phone to show Alison when she returned from the hospital. It wasn’t until we were setting up the appeal in March 2010 that she finally got to see those photos.

The day I walked back through the car park having bought Jake those new boots for his football trial. Just before I reached the car my phone rang. When I answered all I could hear was Alison crying.

The day the doctors found Adam's tumour.