Monday, June 10, 2013
Tonight's picture was taken in June of 2008. It features two cuties who are no longer with us. Both Mattie and Patches were the picture of health here and if you were to tell me we would lose both of them to bone cancer, I most likely wouldn't have believed you! As you can see, Mattie naturally gravitated to bright and happy colors. Which explains why orange is Mattie Miracle's primary color.
Quote of the day: Imagine life is a game in which you are juggling five balls. The balls are called work, family, health, friends, and integrity. And you're keeping all of them in the air. But one day you finally come to understand that work is a rubber ball. If you drop it, it will bounce back. The other four balls...are made of glass. If you drop one of these, it will be irrevocably scuffed, nicked, perhaps even shattered. ~ James Patterson
It was another gray and rainy day in Washington, DC! But despite that I accomplished many different chores today. Throughout the day, I had several communications with one of the psycho-oncologists who is working with Mattie Miracle on a psychosocial standard of care. This psychologist had asked me to evaluate his NIH grant proposal. Basically the proposal is designed to help parents of children with cancer learn problem solving skills. Certainly each day in a hospital is filled with all sorts of dilemmas and being able to logically think these issues through to resolve them most effectively is crucial. But I take several issues with the training study and most importantly with how it is conveyed to parents in order to get them to participate.
One of the things that the hospital psychosocial staff said to me when Mattie was diagnosed with cancer that drove me absolutely batty was, "the research shows......." When your child is diagnosed with cancer, you may want to hear about what the research indicates regarding medical treatment, but I really could care LESS about what the psychological research showed or indicated (at least soon after Mattie was diagnosed, I wasn't in the right emotional place to listen to this!). In fact as soon as I heard someone pontificate psychological research to me, I would shut down or tune out! Why? Because my interpretation is that these people were saying that they knew how I felt, that they understood, and knew the steps, stages, or feelings going through my mind. Which couldn't be further from the truth! Therefore we discussed strategies today that could be useful to get parents to buy into a psychological research study right after their child is diagnosed with cancer. The funny part is some of the issues I mentioned and have highlighted to this research team in the past few weeks, have now become real life issues that the researchers are facing with their current subjects.
Immediately following the diagnosis of one's child with cancer, it is a volatile, anxiety ridden, and life altering time. This is a hard time to get a family to sign up for a psychological study, especially with the notion that information is being collected to help OTHERS! Dealing with immediate life and death situations, you become myopic, and the one and only true goal is to help your child, not necessarily countless others! This may not seem very nice, perhaps it even sounds harsh, but it is the nature of trying to find stability, to create a plan, and brace for whatever is about to come. Certainly collecting psychological data is vital and I think there is a sensitive way to do this, and this is what we discussed today. I would never have gained this knowledge without having learned this through Mattie's care. I would frankly rather be clueless and have Mattie, but since that isn't an option, I am compelled to use Mattie's battle to help guide the psychological treatment of others now walking in our footsteps.
Tonight's picture was taken in June of 2008. It features two cuties who are no longer with us. Both Mattie and Patches were the picture of health here and if you were to tell me we would lose both of them to bone cancer, I most likely wouldn't have believed you! As you can see, Mattie naturally gravitated to bright and happy colors. Which explains why orange is Mattie Miracle's primary color.
Quote of the day: Imagine life is a game in which you are juggling five balls. The balls are called work, family, health, friends, and integrity. And you're keeping all of them in the air. But one day you finally come to understand that work is a rubber ball. If you drop it, it will bounce back. The other four balls...are made of glass. If you drop one of these, it will be irrevocably scuffed, nicked, perhaps even shattered. ~ James Patterson
It was another gray and rainy day in Washington, DC! But despite that I accomplished many different chores today. Throughout the day, I had several communications with one of the psycho-oncologists who is working with Mattie Miracle on a psychosocial standard of care. This psychologist had asked me to evaluate his NIH grant proposal. Basically the proposal is designed to help parents of children with cancer learn problem solving skills. Certainly each day in a hospital is filled with all sorts of dilemmas and being able to logically think these issues through to resolve them most effectively is crucial. But I take several issues with the training study and most importantly with how it is conveyed to parents in order to get them to participate.
One of the things that the hospital psychosocial staff said to me when Mattie was diagnosed with cancer that drove me absolutely batty was, "the research shows......." When your child is diagnosed with cancer, you may want to hear about what the research indicates regarding medical treatment, but I really could care LESS about what the psychological research showed or indicated (at least soon after Mattie was diagnosed, I wasn't in the right emotional place to listen to this!). In fact as soon as I heard someone pontificate psychological research to me, I would shut down or tune out! Why? Because my interpretation is that these people were saying that they knew how I felt, that they understood, and knew the steps, stages, or feelings going through my mind. Which couldn't be further from the truth! Therefore we discussed strategies today that could be useful to get parents to buy into a psychological research study right after their child is diagnosed with cancer. The funny part is some of the issues I mentioned and have highlighted to this research team in the past few weeks, have now become real life issues that the researchers are facing with their current subjects.
Immediately following the diagnosis of one's child with cancer, it is a volatile, anxiety ridden, and life altering time. This is a hard time to get a family to sign up for a psychological study, especially with the notion that information is being collected to help OTHERS! Dealing with immediate life and death situations, you become myopic, and the one and only true goal is to help your child, not necessarily countless others! This may not seem very nice, perhaps it even sounds harsh, but it is the nature of trying to find stability, to create a plan, and brace for whatever is about to come. Certainly collecting psychological data is vital and I think there is a sensitive way to do this, and this is what we discussed today. I would never have gained this knowledge without having learned this through Mattie's care. I would frankly rather be clueless and have Mattie, but since that isn't an option, I am compelled to use Mattie's battle to help guide the psychological treatment of others now walking in our footsteps.
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