Lynn R
Posted by

My son's extraordinary battle against leukaemia

Lynn R
Posted by
25 Mar 2014

Ben was born with Down's syndrome and was only 23 months when he was diagnosed with acute myeloid leukaemia. He underwent six months of intensive chemotherapy which put him into remission.

We thought that that was the end of it yet it was just the beginning. Just 14 months later in 2006, Ben became ill again, this time diagnosed with acute lymphoblastic leukaemia (ALL). He had fractured his leg after a light fall and when they took the cast off, his leg didn’t look normal. I asked for a blood test and when I saw the white blood cell count I just knew something was wrong.

Tests confirmed my worst fears. It was a crushing blow for all of us - he'd already been so much and we really didn't know what to think.

Ben was only the second person in the country known to have developed ALL after AML. Treatment began immediately but Ben struggled to cope with the toxicity of the chemotherapy. As a result of frequent bad reactions to the drugs he has missed a lot of his treatment and his chances of beating this terrible disease were only 50-60%

Yet Ben smiled his way through everything and we never gave up hope and simply kept on fighting. Then on the 24th of February 2014, after 9 long years fighting blood cancer, Ben finally got the all clear!

There are no words to express the relief, joy and happiness that the family felt on hearing the news. Ben does not really understand what that day meant to us all but we took him to his favourite place to celebrate and we had a wonderful family day. Although there will always be a little bit of fear that the leukaemia may return, with each passing day and year that fear reduces. We are so proud of Ben and the way he has fought cancer - he is one amazing little boy.

He is my little star and my hero and I want his story to be a positive one for parents with children diagnosed with a blood cancer. There is hope - if we can do it, then you can do it too.

Leukaemia & Lymphoma Research has invested over £1.5 million in projects which are developing ways to screen children with Down syndrome so leukaemia can be detected and treated before it fully develops and we cannot thank them enough for the work that they've done as without them, Ben might not still be here today.

Comments

Anonymous
25.03.2014

Wow. What an amazing journey. Congratulations Ben on beating this not once but twice x

Anonymous
25.03.2014

Having worked with leukemia patients for years this thrills me!!

Anonymous
26.03.2014

My son has a God given name. I am Johannes Felix and my son is Victor Felix Linden. He is also my life focus. He is also disabled. He is now 26 years young, cannot read cannot write. He won the battle of Epilepsy Complex Generalisata, foot operations, heart operation, stroke and today he is sitting beside me in this sofa, smiling always, talking mainly positive things and he also is a case of winning the worst battles. I live with him, love him very much and protect him since 17 years alone. Getting trough life dangerous moments and problems with own child ...... no one seems to know the pain inside slowly releasing after the thogns proceed to a more positive direction...huh, my atoms feel released .....but not many people take care of us parents... the focus easily go to the acute problem solving... I therefore give you all credits in the world...You really are the true heroes as well... Just remeber that in your own cure. Love & Peace & Symphaty To Ben + Lynn + John from Johannes & Victor Linden from Finland

Anonymous
28.03.2014

Thank you.xx

Anonymous
28.03.2014

Thank you it is one of the reasons we shared our story we want people going through the same thing to be inspired and keep fighting and for all the staff that work in this field to know that their dedication and hard work pays off.xx

Anonymous
28.03.2014

Thanks for taking the time to post your comment you certainly have a lot of love in your life, we are so lucky to have Ben in ours he inspires me everyday.x