{"id":13261,"date":"2025-05-21T07:18:00","date_gmt":"2025-05-21T07:18:00","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=13261"},"modified":"2025-10-14T04:55:33","modified_gmt":"2025-10-14T04:55:33","slug":"10-anos","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2025\/05\/21\/10-years\/","title":{"rendered":"Se cumplen 10 a\u00f1os del diagn\u00f3stico"},"content":{"rendered":"<h2 class=\"wp-block-heading\">Lo que este viaje nos ha ense\u00f1ado y lo que seguimos aprendiendo<\/h2>\n\n\n\n<p>Hoy hace diez a\u00f1os, a nuestro hijo Alex le diagnosticaron de repente un tumor cerebral craneofaringioma y le operaron de urgencia del cerebro. Recuerdo que pensaba que le operar\u00edan, se recuperar\u00eda y luego volver\u00edamos a la normalidad. No ten\u00eda ni idea de cu\u00e1nto cambiar\u00edan nuestras vidas.<\/p>\n\n\n\n<p>La verdad es que me he pasado la \u00faltima d\u00e9cada aprendiendo que lo \"normal\" nunca volver\u00eda y que, en cambio, est\u00e1bamos inmersos en un mundo de complejidad m\u00e9dica, incertidumbre y un nivel de cuidados diarios que nunca imagin\u00e9. De alg\u00fan modo, en medio de esta tormenta, creamos la Fundaci\u00f3n Raymond A. Wood, lo que parec\u00eda un intento desesperado de dar sentido a lo que est\u00e1bamos viviendo, de ayudar a otros que pudieran seguirnos y de convertir nuestro dolor en algo \u00fatil.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>\"Esta obra no nos saca de nuestra realidad. Nos sujeta m\u00e1s profundamente en ella. No hay descanso. No hay interruptor de apagado para el dolor\".<\/p>\n<\/blockquote>\n\n\n\n<p>Ha habido triunfos: proyectos de investigaci\u00f3n significativos, programas que apoyan a familias como la nuestra y actividades de sensibilizaci\u00f3n sobre un tumor cerebral raro del que muchos nunca han o\u00eddo hablar. Ayer mismo tuve el privilegio de enviar dos analizadores de sangre port\u00e1tiles para ayudar a otras personas en nuestra misma situaci\u00f3n. Estoy orgulloso de todo lo que hemos construido juntos. Y a\u00fan as\u00ed, quiero ser sincero: este trabajo no nos saca de nuestra realidad. Nos sujeta m\u00e1s profundamente en ella. No hay descanso. No hay interruptor de apagado para el dolor.<\/p>\n\n\n\n<p>El a\u00f1o pasado fue uno de nuestros cap\u00edtulos m\u00e1s duros. Nos vimos inmersos en una odisea diagn\u00f3stica a medida que la salud de Alex empeoraba, con an\u00e1lisis que mostraban claros signos de disfunci\u00f3n, neumon\u00eda persistente, inflamaci\u00f3n sist\u00e9mica, debilidad, dificultad para caminar y repetidos ataques de shock que provocaron cinco traslados a\u00e9reos y numerosas hospitalizaciones.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>\"Nunca s\u00e9 si el d\u00eda siguiente ser\u00e1 un d\u00eda normal o si nos encontraremos en un helic\u00f3ptero rumbo a la UCI pedi\u00e1trica del CHOP\".<\/p>\n<\/blockquote>\n\n\n\n<p>Desde finales de la primavera pasada, hemos visto sufrir a Alex. Se recuperaba un poco, pero volv\u00eda a caer. A pesar de que los s\u00edntomas se acumulaban, nos costaba conseguir que alguien realmente conectara los puntos. Hab\u00eda un patr\u00f3n, pero parec\u00eda que nadie estaba dispuesto a nombrarlo. No ped\u00edamos milagros, sino que alguien sintiera curiosidad, profundizara, creyera que lo que ve\u00edamos era real.<\/p>\n\n\n\n<p>A finales de abril, por fin recibimos dos nuevos diagn\u00f3sticos: deficiencia de properdina, un raro trastorno gen\u00e9tico de inmunodeficiencia primaria, y bronquiectasia, una afecci\u00f3n pulmonar cr\u00f3nica que requiere un cuidadoso tratamiento diario. Todo esto se suma a los problemas hipotal\u00e1micos que empezaron tras el tumor cerebral.<\/p>\n\n\n\n<p>Hay momentos -raros y fugaces- en los que se siente bien. Y cuando lo hace, est\u00e1 radiante de alegr\u00eda. S\u00f3lo en esos momentos me doy cuenta de lo realmente enfermo que ha estado, porque \u00e9l tambi\u00e9n lo nota. \"No me tiemblan las manos\", me dijo un d\u00eda, como si fuera algo nuevo. Las manos temblorosas, las dificultades para caminar hab\u00edan sido su realidad durante mucho tiempo, y \u00e9l simplemente hab\u00eda aprendido a vivir con ello. Ese tipo de resistencia me rompe el coraz\u00f3n y me lo llena al mismo tiempo. Y a pesar de todo, Alex se recupera sin inmutarse, como s\u00f3lo \u00e9l puede hacerlo.<\/p>\n\n\n\n<p>Y luego est\u00e1 el reto de navegar por la vida. Fuera de nuestra comunidad de tumores cerebrales, a menudo hay un silencio, una brecha que no se puede salvar del todo. La gente no sabe qu\u00e9 decir o c\u00f3mo soportar el peso de nuestra realidad. Y con el tiempo, ese vac\u00edo se convierte en aislamiento. La aceptaci\u00f3n llega en oleadas al darse cuenta de que esta vida que llevamos no es algo que la mayor\u00eda de la gente pueda llegar a entender del todo, y siempre tenemos que vivir con ello.<\/p>\n\n\n\n<p>En este momento, s\u00f3lo una semana despu\u00e9s del alta de la \u00faltima y una de las hospitalizaciones m\u00e1s estresantes, estamos navegando por estas nuevas y complejas condiciones cr\u00f3nicas, las crecientes incertidumbres y el dolor de ver a otros estar bien mientras Alex sigue luchando. Nunca s\u00e9 si el d\u00eda siguiente ser\u00e1 un d\u00eda normal o si nos encontraremos en un helic\u00f3ptero rumbo a la UCI pedi\u00e1trica del CHOP. Esa es una dura verdad que llevo conmigo, incluso cuando me alegro por cada ni\u00f1o diagnosticado con un craneofaringioma que est\u00e1 prosperando.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>\"No celebramos los diez a\u00f1os con alegr\u00eda. Los celebramos con reverencia por todo lo que hemos soportado, todo lo que hemos construido, todo lo que llevamos en silencio y todo lo que a\u00fan esperamos.\"<\/p>\n<\/blockquote>\n\n\n\n<p>Y, sin embargo, aqu\u00ed estamos, diez a\u00f1os despu\u00e9s. Diez a\u00f1os de supervivencia, adaptaci\u00f3n, esperanza, dolor y lucha. Diez a\u00f1os en los que el ni\u00f1o m\u00e1s extraordinario nos ha ense\u00f1ado lo que significa seguir adelante. No celebramos los diez a\u00f1os con facilidad. Los celebramos con reverencia por todo lo que hemos soportado, todo lo que hemos construido, todo lo que llevamos en silencio y todo lo que a\u00fan esperamos.<\/p>\n\n\n\n<p>Gracias a todos los miembros de esta comunidad que nos han ayudado a salir adelante. Vuestros \u00e1nimos, mensajes, historias compartidas y solidaridad nos han levantado m\u00e1s de lo que cre\u00e9is. Y a las familias que recorren este camino: Os veo. Estoy con vosotros. Y seguiremos luchando para que esto mejore.<\/p>\n\n\n\n<p>Por favor, considere hacer un regalo en honor de Alex para el Mes de Concienciaci\u00f3n sobre Tumores Cerebrales. <\/p>\n\n\n\n<a class=\"gb-button gb-button-5e7afebc gb-button-text\" href=\"https:\/\/givebutter.com\/L6XegG\" target=\"_blank\" rel=\"noopener noreferrer\">Donar aqu\u00ed<\/a>","protected":false},"excerpt":{"rendered":"<p>Lo que este viaje nos ha ense\u00f1ado y lo que seguimos aprendiendo Hoy hace diez a\u00f1os, nuestro ... <a title=\"Se cumplen 10 a\u00f1os del diagn\u00f3stico\" class=\"read-more\" href=\"https:\/\/www.rawoodfoundation.org\/es\/2025\/05\/21\/10-years\/\" aria-label=\"Leer m\u00e1s sobre Se cumplen 10 a\u00f1os del diagn\u00f3stico\">Seguir leyendo<\/a><\/p>","protected":false},"author":4,"featured_media":13262,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[43,1],"tags":[],"class_list":["post-13261","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-stories","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>Marking 10 Years From Diagnosis - Raymond A. 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