{"id":16,"date":"2018-05-01T11:54:25","date_gmt":"2018-05-01T11:54:25","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2018\/05\/01\/2018-5-1-brain-tumor-awareness-month-how-do-we-get-from-surviving-to-thriving\/"},"modified":"2023-08-01T19:33:30","modified_gmt":"2023-08-01T19:33:30","slug":"2018-5-1-mes-de-la-concienciacion-sobre-los-tumores-cerebrales-como-pasar-de-sobrevivir-a-prosperar","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2018\/05\/01\/2018-5-1-brain-tumor-awareness-month-how-do-we-get-from-surviving-to-thriving\/","title":{"rendered":"Mes de sensibilizaci\u00f3n sobre los tumores cerebrales: \u00bfC\u00f3mo pasar de la supervivencia a la prosperidad?"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p>Al entrar hoy en mi tercer Mes de Concienciaci\u00f3n sobre Tumores Cerebrales como madre de un superviviente de un tumor cerebral y defensora de todos los supervivientes pedi\u00e1tricos y sus padres-cuidadores, me he dado cuenta de que este a\u00f1o simplemente no me siento bien. Estoy en un punto bajo en este viaje. Lo llamar\u00e9 cansancio de batalla.<\/p>\n<p>Aunque sobrevivir es el objetivo \u00faltimo del tratamiento, he visto de primera mano que la supervivencia de los tumores cerebrales tiene un coste tanto literal como figurado. Nosotros, como padres, estamos constantemente buscando respuestas o esperando una forma mejor. Desde dietas sin gluten, sin l\u00e1cteos y sin carbohidratos hasta suplementos, el c\u00f3ctel adecuado de medicamentos, aceites esenciales que prometen resultados, remedios naturales o terapias alternativas, todos estos intentos de solucionar esto tienen un precio, tanto en d\u00f3lares como en esperanzas frustradas.<\/p>\n<p>En los \u00faltimos tres a\u00f1os, hemos ido de m\u00e9dico en m\u00e9dico, de terapia en terapia y de producto en producto y todav\u00eda no hemos encontrado lo que yo esperaba: el paso de que Alex simplemente sobreviva a que Alex prospere. Creo que, en cierto modo, se ha complicado. Mi esperanza constante es encontrar una tirita que se pegue. Una que lo mantenga todo unido y nos devuelva a nuestro dulce, bien educado y vibrante ni\u00f1o sin todos los retos f\u00edsicos y de comportamiento que han venido despu\u00e9s del tratamiento. Pero estoy aprendiendo que no hay tirita lo bastante pegajosa para cubrir el da\u00f1o cerebral.<\/p>\n<p>Trato de aferrarme a la esperanza incluso en mis momentos m\u00e1s oscuros y de recordar que hemos visto algo de belleza en este viaje. Las oraciones ofrecidas por desconocidos, las personas dedicadas a apoyar esta fundaci\u00f3n, la capacidad de conectar con tantas personas que comparten esta experiencia y que de otro modo nunca habr\u00eda conocido... estas son las cosas que nos ayudan a salir adelante.<\/p>\n<p>Y luego est\u00e1 nuestro viejo fiable - el i-STAT. Tra\u00eddo a nosotros a trav\u00e9s de la pura bondad de los dem\u00e1s y Alex es ahora dos a\u00f1os sin hospitalizaciones significativas en parte a nuestra capacidad para descartar problemas de sodio cuando las cosas parecen \"off\". Mantenerse fuera del hospital es un paso m\u00e1s all\u00e1 de simplemente sobrevivir a prosperar. Y tenemos la suerte de poder ayudar a otros a conseguir esta tranquilidad.<\/p>\n<p>El a\u00f1o pasado pudimos entregar tres i-STAT a familias, dos m\u00e1s de lo previsto en nuestro primer a\u00f1o. Estamos trabajando para identificar a m\u00e1s familias que puedan beneficiarse del dispositivo y hemos podido almacenar algunos para casos de emergencia. Tambi\u00e9n me complace informar de que Abbott, el fabricante del dispositivo, ha ampliado un programa que pone estos dispositivos m\u00e1s a disposici\u00f3n de los pacientes que podr\u00edan beneficiarse de su uso fuera del \u00e1mbito hospitalario con receta m\u00e9dica. Estamos trabajando para ayudar a nuestros pacientes pedi\u00e1tricos con tumores cerebrales con DI a entrar en el programa, a la vez que les proporcionamos apoyo para utilizarlo como parte de su plan de gesti\u00f3n de cuidados.<\/p>\n<p>Tambi\u00e9n estamos organizando una exposici\u00f3n de arte para mostrar el talento de los pacientes. El arte es una forma de terapia para muchos de los que luchan contra las secuelas de los tumores cerebrales, y darles la oportunidad de mostrar su creatividad y obtener reconocimiento es nuestra forma de concienciarlos.<\/p>\n<p>Barack Obama dijo una vez: \"Siempre he cre\u00eddo que la esperanza es esa cosa obstinada dentro de nosotros que insiste, a pesar de todas las pruebas en contra, en que algo mejor nos espera siempre que tengamos el valor de seguir alcanzando, de seguir trabajando, de seguir luchando\".<\/p>\n<p>A medida que nos acercamos al tercer aniversario del diagn\u00f3stico de Alex, aunque estoy cansada de la batalla, mantengo la esperanza de que encontraremos las respuestas para ayudarle a prosperar. Al menos yo seguir\u00e9 busc\u00e1ndolas. La mayor\u00eda de las madres y padres que comparten nuestra experiencia siguen esforz\u00e1ndose, trabajando y luchando a diario. La esperanza es nuestra mayor arma en esta batalla. Esperar el momento decisivo, ya sea la aceptaci\u00f3n de lo que es o la b\u00fasqueda de una buena respuesta al \"qu\u00e9 pasar\u00eda si\".<\/p>\n<p>Este no es el a\u00f1o en el que voy a hacer una gira medi\u00e1tica, vender camisetas o glorificar la causa, sino que voy a contarles la verdadera historia. En pocas palabras, los tumores cerebrales son una mierda. Me da rabia que Alex tenga que soportar los retos a los que se enfrenta. Me enfada que hayamos perdido nuestra vida normal antes del diagn\u00f3stico. A veces me da rabia que fuera mi hijo y no el tuyo. Otros 13 ni\u00f1os ser\u00e1n diagnosticados hoy. 13 familias que perder\u00e1n a su hijo o se enfrentar\u00e1n a la sentencia de por vida de lidiar con las secuelas y algunas saldr\u00e1n ilesas con una historia que contar. No creo que haya dinero suficiente en el mundo para curar los tumores cerebrales, as\u00ed que tenemos que encontrar mejores m\u00e9todos de tratamiento y mejores planes de apoyo a largo plazo para ayudar a las v\u00edctimas no s\u00f3lo a sobrevivir, sino a prosperar.&nbsp;<\/p>\n<\/div>\n<div\n        class=\"image-block-outer-wrapper          layout-caption-below          design-layout-inline\"\n        data-test=\"image-block-inline-outer-wrapper\"\n    ><\/p>\n<figure\n            class=\"sqs-block-image-figure              intrinsic\"\n            style=\"max-width:2250px;\"\n        ><\/p>\n<div\n\n\n              class=\"image-block-wrapper\"\n              data-animation-role=\"image\"\n\n  data-animation-override\n\n><\/p>\n<div class=\"sqs-image-shape-container-element              has-aspect-ratio\" style=\"                position: relative;                  padding-bottom:133.33334350585938%;                overflow: hidden;-webkit-mask-image: -webkit-radial-gradient(white, black);              \"\n              ><\/p>\n<p>                  <noscript><img decoding=\"async\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1525184488361-6HXL99CINZ0SU3ODLC2A\/AlexWood.jpg\" alt=\"AlexWood.jpg\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1525184488361-6HXL99CINZ0SU3ODLC2A\/AlexWood.jpg\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1525184488361-6HXL99CINZ0SU3ODLC2A\/AlexWood.jpg\" data-image-dimensions=\"2250x3000\" data-image-focal-point=\"0.5,0.5\" alt=\"AlexWood.jpg\" data-load=\"false\" data-image-id=\"5ae877e570a6ad3043e7033c\" data-type=\"image\" \/><\/p><\/div>\n<\/p><\/div>\n<\/figure><\/div>","protected":false},"excerpt":{"rendered":"<p>A medida que avanzo en el Mes de la Concienciaci\u00f3n este mes de mayo como madre de un superviviente de un tumor cerebral y defensora de todos los supervivientes pedi\u00e1tricos y sus padres-cuidadores, me he dado cuenta de que simplemente no me siento bien este a\u00f1o. Estoy en un punto bajo en este viaje. Lo llamar\u00e9 cansancio de batalla.<\/p>","protected":false},"author":6,"featured_media":17,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[41,1],"tags":[],"class_list":["post-16","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Brain Tumor Awareness Month: How Do We Get From Surviving to Thriving? - Raymond A. 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