Sunday, 18 July 2010
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