I have a step daughter who is a survivor of leukemia as an infant. She is now a happy, beautiful redhaired girl. To look at her you would never imagine what she has gone through or goes through to this very day. When remission from cancer in a child is achieved, there are no ticker tape parades or 'mission accomplished' banners. Soon there comes yet another challenge. One that is yet to be recognized. For anyone who has had a child go through chemotherapy, the term 'Cognitive Late Effects' soon descends on your world. For some, they are minimal- especially for an older child. For those who experienced chemo at a very young age or along with radiation therapy, the effects are inescapable. To the parents, psychologists and medical staff who continue to work the the child it is very,very real and the true heartbreak of the medication which stopped the cancer. To school districts, it is the all just a nice fairy tale or an excuse for poor grades. They are not foolish. They know that the type of compensatory education required is expensive. Better to just deny it. Blame the child for not being a good student. I've seen firsthand the frustration of the child who tries her heart out and still cannot connect what she sees on the blackboard with the ability to say it. All of the tears. All of the hurtful comments. The brave face she shows every day is an inspiration to me. To have this child enter into my life has been a very humbling experience. Out of this she has become one the heroes in my life. Another is a man who works very hard to improve education for children. Not only child cancer survivors, but also children with Sickle Cell Anemia as well as children with AIDS. He is articulate, professional and a tremendous advocate for all of these children. His name is Daniel Armstrong, PhD. He is a psychologist on staff at a medical school but also is a member of various national commissions addressing the educational needs of these children. He is truly a national treasure. It is so very hard to hear him speak - heartbreaking even- knowing that what he knows as scientific fact is then viciously denied by the school staff.
I have tried so very hard for my step-daughter but I could never do enough. How can you possibly ever do enough for someone who went through such a challenge at such a young age? As more children survive cancer, their post- chemo plight will come more to the forefront. There are groups who advocate not only for children with cancer, but for childhood cancer survivors as well. I cannot but mention the great efforts of the Leukemia and Lymphoma Society and The Candlelighters. They are both great organizations. And with their help, the battle continues to make a better life for my step daughter. Her persistence gives me inspiration. Her frustrations and tears are one of the greatr heartbreaks of my life.