{"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-mois-de-sensibilisation-aux-tumeurs-cerebrales-comment-passer-de-la-survie-a-la-prosperite","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2018\/05\/01\/2018-5-1-brain-tumor-awareness-month-how-do-we-get-from-surviving-to-thriving\/","title":{"rendered":"Mois de sensibilisation aux tumeurs c\u00e9r\u00e9brales : Comment passer de la survie \u00e0 la prosp\u00e9rit\u00e9 ?"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<p>Alors que j'entame aujourd'hui mon troisi\u00e8me mois de sensibilisation aux tumeurs c\u00e9r\u00e9brales en tant que m\u00e8re d'un survivant d'une tumeur c\u00e9r\u00e9brale et d\u00e9fenseur de tous les survivants p\u00e9diatriques et de leurs parents-soignants, je me suis rendu compte que je ne me sentais tout simplement pas \u00e0 la hauteur cette ann\u00e9e. Je suis au plus bas dans cette aventure. Je dirai que je suis fatigu\u00e9e du combat.<\/p>\n<p>Si la survie est l'objectif ultime d'un traitement, j'ai pu constater de visu que la survie des tumeurs c\u00e9r\u00e9brales a un co\u00fbt, au sens propre comme au sens figur\u00e9. En tant que parents, nous sommes constamment en train de chercher des r\u00e9ponses ou d'esp\u00e9rer une meilleure solution. Qu'il s'agisse de r\u00e9gimes sans gluten, sans produits laitiers ou sans glucides, de suppl\u00e9ments, du bon cocktail de m\u00e9dicaments, d'huiles essentielles qui promettent des r\u00e9sultats, de rem\u00e8des naturels ou de th\u00e9rapies alternatives, toutes ces tentatives ont un prix, tant en termes d'argent que d'espoirs d\u00e9\u00e7us.<\/p>\n<p>Au cours des trois derni\u00e8res ann\u00e9es, nous sommes all\u00e9s de m\u00e9decin en m\u00e9decin, de th\u00e9rapie en th\u00e9rapie et de produit en produit et nous n'avons toujours pas trouv\u00e9 ce que j'esp\u00e9rais - le passage d'Alex qui survit simplement \u00e0 Alex qui s'\u00e9panouit. Je pense que, d'une certaine mani\u00e8re, c'est devenu plus compliqu\u00e9. Mon espoir permanent est de trouver un pansement qui tienne. Un pansement qui tienne le coup et qui nous rende notre gentil gar\u00e7on, bien \u00e9lev\u00e9 et plein de vie, sans les probl\u00e8mes physiques et comportementaux qui ont suivi le traitement. Mais j'apprends qu'il n'y a pas de pansement assez collant pour couvrir les l\u00e9sions c\u00e9r\u00e9brales.<\/p>\n<p>J'essaie de garder espoir, m\u00eame dans les moments les plus sombres, et de garder \u00e0 l'esprit que nous avons vu de la beaut\u00e9 dans ce voyage. Les pri\u00e8res offertes par des inconnus, les personnes qui se consacrent au soutien de cette fondation, la possibilit\u00e9 d'entrer en contact avec tant de personnes qui partagent cette exp\u00e9rience et que je n'aurais peut-\u00eatre jamais rencontr\u00e9es autrement, voil\u00e0 les choses qui nous permettent de tenir le coup.<\/p>\n<p>Et puis, il y a notre vieil outil fiable, l'i-STAT. Gr\u00e2ce \u00e0 la bont\u00e9 d'autrui, Alex n'a pas connu d'hospitalisation importante depuis deux ans, en partie gr\u00e2ce \u00e0 notre capacit\u00e9 \u00e0 \u00e9carter les probl\u00e8mes de sodium lorsque les choses ne semblent pas aller comme elles le devraient. \u00c9viter l'h\u00f4pital, c'est passer de la survie \u00e0 l'\u00e9panouissement. Et nous avons la chance de pouvoir aider d'autres personnes \u00e0 obtenir cette tranquillit\u00e9 d'esprit.<\/p>\n<p>Au cours de l'ann\u00e9e \u00e9coul\u00e9e, nous avons pu remettre trois i-STAT \u00e0 des familles, soit deux de plus que ce que nous avions pr\u00e9vu pour la premi\u00e8re ann\u00e9e. Nous nous effor\u00e7ons d'identifier d'autres familles susceptibles de b\u00e9n\u00e9ficier de cet appareil et nous avons pu en stocker quelques-uns pour les cas d'urgence. Je suis \u00e9galement heureuse d'annoncer qu'Abbott, le fabricant de l'appareil, a \u00e9largi un programme qui rend ces appareils plus accessibles aux patients qui pourraient b\u00e9n\u00e9ficier de leur utilisation en dehors d'un environnement hospitalier sur prescription m\u00e9dicale. Nous nous effor\u00e7ons d'aider nos patients atteints de tumeurs c\u00e9r\u00e9brales p\u00e9diatriques et de DI \u00e0 participer \u00e0 ce programme tout en les aidant \u00e0 l'utiliser dans le cadre de leur plan de gestion des soins.<\/p>\n<p>Nous organisons \u00e9galement une exposition d'art pour mettre en valeur les talents des patients. L'art est une forme de th\u00e9rapie pour beaucoup de ceux qui luttent contre les s\u00e9quelles des tumeurs c\u00e9r\u00e9brales. Leur donner l'occasion de montrer leur cr\u00e9ativit\u00e9 et d'\u00eatre reconnus est notre fa\u00e7on de sensibiliser le public.<\/p>\n<p>Barack Obama a d\u00e9clar\u00e9 un jour : \"J'ai toujours cru que l'espoir est cette chose t\u00eatue en nous qui insiste, malgr\u00e9 toutes les preuves du contraire, que quelque chose de meilleur nous attend tant que nous avons le courage de continuer \u00e0 tendre la main, de continuer \u00e0 travailler, de continuer \u00e0 nous battre.<\/p>\n<p>Alors que nous approchons du troisi\u00e8me anniversaire du diagnostic d'Alex, bien que je sois fatigu\u00e9e du combat, je garde l'espoir que nous trouverons les r\u00e9ponses qui l'aideront \u00e0 s'\u00e9panouir. Du moins, je continuerai \u00e0 les chercher. La plupart des mamans et des papas qui partagent notre exp\u00e9rience continuent \u00e0 tendre la main, \u00e0 travailler et \u00e0 se battre quotidiennement. L'espoir est notre plus grande arme dans cette bataille. Esp\u00e9rer le moment d\u00e9cisif - qu'il s'agisse d'accepter ce qui est ou de trouver une bonne r\u00e9ponse \u00e0 la question \"et si\".<\/p>\n<p>Ce n'est pas l'ann\u00e9e pour moi de faire une tourn\u00e9e des m\u00e9dias, de vendre des t-shirts ou de glorifier la cause, mais de vous raconter la vraie histoire. En clair, les tumeurs c\u00e9r\u00e9brales, \u00e7a craint. Je suis furieuse qu'Alex doive endurer les d\u00e9fis qu'il doit relever. Je suis furieuse que nous ayons perdu notre vie normale avant le diagnostic. Parfois, je suis furieuse que ce soit mon enfant et non le v\u00f4tre. 13 autres enfants seront diagnostiqu\u00e9s aujourd'hui. 13 familles qui perdront leur enfant ou qui devront faire face aux cons\u00e9quences de la maladie, et certaines s'en sortiront indemnes avec une histoire \u00e0 raconter. Je ne pense pas qu'il y ait assez d'argent dans le monde pour gu\u00e9rir les tumeurs c\u00e9r\u00e9brales. Nous devons donc trouver de meilleures m\u00e9thodes de traitement et de meilleurs plans de soutien \u00e0 long terme pour aider les victimes non seulement \u00e0 survivre, mais aussi \u00e0 s'\u00e9panouir.&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>Alors que j'entame le Mois de la sensibilisation en mai, en tant que m\u00e8re d'un survivant d'une tumeur c\u00e9r\u00e9brale et d\u00e9fenseur de tous les survivants p\u00e9diatriques et de leurs parents-soignants, je me rends compte que je ne me sens tout simplement pas \u00e0 la hauteur cette ann\u00e9e. Je suis au plus bas dans cette aventure. Je dirai que je suis fatigu\u00e9e du combat.<\/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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