What are we Doing?
The purpose of this site, and ongoing events, is two-fold:
Firstly, it aims to raise awareness of this terrible disease to a level that it rightly deserves; it is after all, the most lethal of all children's cancers! An excellent source of information on Neuroblastoma can be found via the following Macmillan website link:
Secondly, it aims to raise funds for Alexander and his family should it be necessary for Alex to undertake treatment that is not available in the UK via the NHS.
Please note that Mark and Max would like you to know that they are extremely happy with the care, treatment, and support, they are and have received from the NHS, and they have not given-up on having additional treatment here in the UK should treatment be available. They do however wish to be in a position to rapidly finance additional treatment and care that is not available via the NHS should it be necessary. Until recently, Mark and Max had not considered raising funds as Alexander's condition appeared to be quite stable. Unfortunately all of this changed at the start of 2012 when a secondary tumor appeared in Alexander's lymph nodes in his left armpit. Such was the aggressiveness and speed of development that the tumor appeared to grow and spread from nothing to a lump almost a third the size of his chest in a matter of a few months. Luckily, radiotherapy managed to bring this under control, enabling high-dose chemotherapy to take place, but as of now there are no more 'conventional' treatments available to Alexander, as his body has already taken all that it can handle.
Why Are We Doing This?
Quite simply, we love our son, and Olivia loves her brother, and we are trying to do all that is humanly possible and necessary to ensure that Alexander has a future.
Most people take seeing their child grow up to become a teenager and then a young adult for granted. Alexander's future is unclear so we do not have this simple little luxury, but with your help we will fight to ensure that Alexander is given the best possible chance of doing what all children his age should be doing.... going to school, playing with friends, enjoying his childhood, and simply growing up.....!
Alexander's Story in his own words.... edited by Daddy
I remember having tummy ache and mummy took my to the doctors and a nurse told mummy that I had a lump in my belly so we went to hospital. I spend alot of time in hospital having injections and things. It's not nice as I miss my friends and school, and we don't get time to have fun and picnics as a family. I want to get better so that I can have sleep-overs with my friends and spend more time doing family things. I want to spend more time playing with Tilly (Boxer/Staffy cross dog that we adopted from Jerry Greens Dog Home in January 2012) and would really like to go to Lapland when I am better as I've been before and it was good, but I didn't really enjoy it then as I was poorly and sad.
A good thing about being poorly is that I met Bear Grylls and his family (photos included on the site) for a bit and that was great.
Olivia's Story in her own words.... edited by Daddy
I remember going to the airport to pick Daddy up at Christmas. Lex was crying and screaming in pain in the car, and it really upset me. Lex is always in hospital and Mummy is always away from home with Lex, so I get upset as I miss them both. We hardly spend any time together anymore and I hate us all being apart. When Lex was in isolation I really enjoyed visiting him, but not many people could go see him to make sure that he didn't catch any germs and become ill, so I was a bit sad at the same time.
I really want Lex to get better so we don't have to go to hospital anymore and we can all go away together on a long holiday. I want us to go to Turkey as we all like it there, and Lex wants to go too.
The Christmas Alexander became ill was the worst ever. We found out on xmas eve 2009 that Lex had Neuroblastoma and I can remember feeling desperate as there was nothing I could do. Alexander's illness has definitely broken us as a family due to the time spent apart and the stresses we are all under. In some ways Alexander's illness has brought us closer together as a family but it is very stressful and difficult, and whilst we try to carry on as normal, its nearly impossible.
Like Olivia I just want Alexander to be better so we can all spend some quality time together. I want our life's back and I want us to go away and forget about this terrible time. I want Lex to be in remission, something we have not managed in all the time since he was diagnosed. I am stronger now as a person, as you have to be, and I wish that I was as strong in the beginning as I am now as it would have made a big difference to the family.
On a positive note I really enjoyed meeting Bear Grylls and was amazed at just how friendly and welcoming he and his family were. Doubt you will ever read this but thank you Bear, you made my children very happy.
It is my sole aim in life to make all of this right and get rid of all the sadness, anger, bitterness, and bad feelings. I want to take away all pain and hurt from Alexander, Olivia and my wife Max. This is what drives me now.