Thinking of Max (Pat, USA)

Pat Garcia-Gonzalez, Executive Director, The Max Foundation (USA)

4efed Max05 300pxDear Friends,

Max was 14 when he was diagnosed with chronic myeloid leukemia (CML). A lingering cough and a doctor's check up revealed an enlarged spleen; from there, blood tests, more tests, shock. It was August of 1989.

Max went on to take hydrea and then a very promising drug at the time, Interferon, all the while we searched for a matching bone marrow donor. He did well on interferon and had little side effects. He was 15 by then and he would prepare his own interferon shots. Shots and blood draws soon became part of his routine.

Max lived with CML for almost 3 years, from 14 to 17. There were no patient support groups back then. In fact, there was no internet; no contact with other people with CML, no disease information other than the one provided by Dr Talpaz, his doctor. Max did not want to think about his disease if he didn't need to. He didn't hide it, but for the most part, while he was with his friends or in school, he enjoyed not thinking about it.

Many teenagers just want to live their lives, and not really dwell on the reality of the disease. Nowadays they seek information online when they want it, on their own terms, and they come to us when they need us. As adults, our job is to be there and alert to catch those moments in which a little window opens, and we must be prepared with our answers.

Today in my position as Executive Director of The Max Foundation, I am aware of more than 40,000 people diagnosed with CML in the past 10 years from 80 countries, a database where the average age at diagnosis is 38 years old including more than 2,000 children and at least 150 of them ages five or younger.
When thinking about a Junior CML site, I hope it will accomplish three goals: 1, bring awareness about the high number of cases of children with CML worldwide and spearhead research about the consequences of long term treatment; 2, provide resources and information to junior CMLers themselves, as well as to their parents; 3, provide a safe site where junior CMLers can ask questions, share experiences, be themselves.

As often is the case with children who face a difficult diagnosis at an early age, children with CML are wise beyond their years. It is my hope this Junior CML site will honor their courage and help us learn from them.


 
   
 

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