{"id":115,"date":"2021-09-02T20:41:03","date_gmt":"2021-09-02T20:41:03","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2021\/09\/02\/2021-9-2-ten-year-cranioversary-parent-reflection\/"},"modified":"2023-08-01T19:20:54","modified_gmt":"2023-08-01T19:20:54","slug":"2021-9-2-diez-anos-cranioversario-reflexion-padres","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2021\/09\/02\/2021-9-2-ten-year-cranioversary-parent-reflection\/","title":{"rendered":"Diez a\u00f1os de \"Cranioversario\" Reflexi\u00f3n de los padres"},"content":{"rendered":"
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Contribuci\u00f3n de Eugenie Hsu, madre de Alex, superviviente de un craneofaringioma y miembro de la Junta Directiva de la Fundaci\u00f3n Raymond A. Wood<\/em><\/p>\n<\/div>\n<\/p>\n<\/p>\n<\/p>\n

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Alex riley, 10 d\u00edas despu\u00e9s de una craneotom\u00eda para extirpar un craneofaringioma<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/p><\/div>\n

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El 23 de agosto de 2011, a Alex, nuestro hijo de entonces 8 a\u00f1os, le diagnosticaron un tumor cerebral llamado craneofaringioma. Nos dijeron que, aunque probablemente sobrevivir\u00eda a la operaci\u00f3n, le quedar\u00edan secuelas m\u00e9dicas cr\u00f3nicas como \"diabetes ins\u00edpida, panhipopituitarismo, obesidad hipotal\u00e1mica...\". No pude asimilar ninguna explicaci\u00f3n sobre terminolog\u00eda m\u00e9dica porque mi cabeza no cab\u00eda en s\u00ed de asombro cuando me dijeron que mi peque\u00f1o ten\u00eda un tumor cerebral<\/em>. El neurocirujano explic\u00f3 la localizaci\u00f3n del craneofaringioma utilizando un modelo de cabeza humana y yo observ\u00e9 horrorizada c\u00f3mo retiraba el cr\u00e1neo exterior y luego las partes, pieza a pieza, hasta llegar al n\u00facleo mismo del cerebro. Cuanto m\u00e1s se adentraba su mano en la cabeza del modelo para extraer piezas, m\u00e1s nervioso me sent\u00eda al darme cuenta de que este tumor estaba alojado en una zona muy precaria del cerebro.<\/p>\n

El 8 de septiembre de 2011, Alex se someti\u00f3 a una operaci\u00f3n cerebral de 14 horas seguida de una estancia de 6 semanas en la unidad de cuidados intensivos pedi\u00e1tricos. Por muy angustioso que fuera pasar por la operaci\u00f3n cerebral y la larga hospitalizaci\u00f3n, poco sab\u00edamos que era la parte m\u00e1s f\u00e1cil de nuestro viaje y solo la punta del iceberg de lo que tendr\u00edamos que afrontar.<\/p>\n

Han pasado diez a\u00f1os desde su diagn\u00f3stico y cirug\u00eda y, de hecho, nos hemos enfrentado a retos en nuestro viaje que nunca podr\u00edamos haber imaginado el d\u00eda que lo trajimos a casa del hospital. De alg\u00fan modo, hemos superado los vertiginosos retos que supone cuidar de nuestro hijo m\u00e9dicamente fr\u00e1gil y hemos sorteado los vericuetos de todas sus necesidades especiales hasta la fecha, con el suficiente \u00e9xito como para celebrar los 10 a\u00f1os transcurridos desde el diagn\u00f3stico y la operaci\u00f3n. <\/p>\n<\/div>\n<\/p>\n<\/p>\n<\/p>\n

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ALEX, 18 a\u00f1os y medio.<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/p><\/div>\n

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Si ha recorrido un camino similar, sabr\u00e1 que ser padre de un ni\u00f1o con enfermedades cr\u00f3nicas, discapacidades y otras necesidades especiales que ponen en peligro su vida es todo un reto, pero que algunas de las partes m\u00e1s dif\u00edciles tienen que ver con sentirse solo<\/em>. Los amigos y familiares bienintencionados son incapaces de comprender realmente nuestras luchas e incluso los mejores profesionales m\u00e9dicos del planeta son incapaces de ofrecer soluciones a muchos de los problemas a los que nos enfrentamos. <\/p>\n

\u00bfQui\u00e9n, entonces, tiene la capacidad de ayudarnos a encontrar las respuestas a nuestros problemas?<\/p>\n

En las enfermedades raras, debemos recurrir a las personas que tienen m\u00e1s conocimientos, experiencia y ganas de encontrar respuestas: los pacientes y cuidadores.<\/em>...US<\/em>\u00a1! Nos debemos a nosotros mismos y a nuestros seres queridos aprovechar nuestra sabidur\u00eda colectiva, experiencias, recursos y motivaci\u00f3n para ser guerreros y ganar la lucha contra los tumores cerebrales y los estragos que han causado en nuestras vidas.<\/p>\n

Afortunadamente, la Fundaci\u00f3n Raymond A. Wood (RAWF), una organizaci\u00f3n de defensa de las familias con tumores cerebrales, existe con el \u00fanico prop\u00f3sito de mejorar la vida de los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios mediante el acceso a la educaci\u00f3n, la tecnolog\u00eda y los tratamientos en evoluci\u00f3n. RAWF necesita que usted \u00fanete a nuestra lucha para que podamos ayudarnos a nosotros mismos<\/strong>. Si usted es como yo, nada es m\u00e1s importante que su salud o la de sus seres queridos. Si usted es como yo, est\u00e1 dispuesto a hacer lo que sea necesario para luchar por encontrar respuestas a problemas a\u00fan por resolver por el bien de su salud o la de su ser querido. Al hacerse miembro de la RAWF, est\u00e1 invirtiendo en la lucha por la calidad de vida de los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios.<\/p>\n

Un\u00e1monos<\/a> para que podamos luchar la buena batalla. \u00bfTe unir\u00e1s a m\u00ed? <\/p>\n<\/div>\n
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\n Afiliarse
\n <\/a>\n<\/div>\n

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\u00bfLe gustar\u00eda compartir la historia de un superviviente? <\/em>Env\u00edenos un correo electr\u00f3nico <\/em><\/a>para contribuir a nuestro blog.<\/em><\/p>\n

\n<\/div>","protected":false},"excerpt":{"rendered":"

El 23 de agosto de 2011, a Alex, nuestro hijo de entonces 8 a\u00f1os, le diagnosticaron un tumor cerebral llamado craneofaringioma. Nos dijeron que, aunque probablemente sobrevivir\u00eda a la operaci\u00f3n, le quedar\u00edan secuelas m\u00e9dicas cr\u00f3nicas como \"diabetes ins\u00edpida, panhipopituitarismo, obesidad hipotal\u00e1mica...\". No pude asimilar ninguna explicaci\u00f3n sobre terminolog\u00eda m\u00e9dica porque mi cabeza no cab\u00eda en s\u00ed de asombro cuando me dijeron que mi peque\u00f1o ten\u00eda un tumor cerebral<\/em>.<\/p>","protected":false},"author":6,"featured_media":116,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19,35,1],"tags":[],"class_list":["post-115","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-caregiver-stories","category-craniopharyngioma","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"\nTen Year \u201cCranioversary\u201d Parent Reflection - Raymond A. 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