{"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-ans","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2025\/05\/21\/10-years\/","title":{"rendered":"Dix ans apr\u00e8s le diagnostic"},"content":{"rendered":"

Ce que ce voyage nous a appris et ce que nous apprenons encore<\/h2>\n\n\n\n

Il y a dix ans aujourd'hui, on a soudainement diagnostiqu\u00e9 \u00e0 notre fils Alex une tumeur c\u00e9r\u00e9brale de type craniopharyngiome et on l'a op\u00e9r\u00e9 d'urgence du cerveau. Je me souviens avoir pens\u00e9 qu'il serait op\u00e9r\u00e9, qu'il se r\u00e9tablirait et que nous reprendrions le cours normal de notre vie. Je n'imaginais pas \u00e0 quel point notre vie allait changer.<\/p>\n\n\n\n

La v\u00e9rit\u00e9, c'est que j'ai pass\u00e9 la derni\u00e8re d\u00e9cennie \u00e0 apprendre que la \"normalit\u00e9\" ne reviendrait jamais et qu'au lieu de cela, nous \u00e9tions plong\u00e9s dans un monde de complexit\u00e9 m\u00e9dicale, d'incertitude et d'un niveau de soins quotidiens que je n'avais jamais imagin\u00e9. D'une mani\u00e8re ou d'une autre, au milieu de cette temp\u00eate, nous avons cr\u00e9\u00e9 la Fondation Raymond A. Wood - ce qui ressemblait \u00e0 une tentative d\u00e9sesp\u00e9r\u00e9e de donner un sens \u00e0 ce que nous vivions, d'aider les autres qui pourraient nous suivre, et de transformer notre douleur en quelque chose d'utile.<\/p>\n\n\n\n

\n

\"Ce travail ne nous sort pas de notre r\u00e9alit\u00e9. Il nous y plonge plus profond\u00e9ment. Il n'y a pas d'arr\u00eat de travail. Il n'y a pas de bouton d'arr\u00eat pour le chagrin\".<\/p>\n<\/blockquote>\n\n\n\n

Il y a eu des victoires : des projets de recherche significatifs, des programmes qui soutiennent des familles comme la n\u00f4tre et des actions de sensibilisation \u00e0 une tumeur c\u00e9r\u00e9brale rare dont beaucoup n'ont jamais entendu parler. Hier encore, j'ai eu le privil\u00e8ge d'envoyer deux analyseurs de sang portables pour aider d'autres personnes dans la m\u00eame situation que nous. Je suis fi\u00e8re de tout ce que nous avons construit ensemble. Et pourtant, je veux \u00eatre honn\u00eate : ce travail ne nous sort pas de notre r\u00e9alit\u00e9, il nous y maintient plus profond\u00e9ment. Il nous y plonge plus profond\u00e9ment. Il n'y a pas d'arr\u00eat de travail. Il n'y a pas de bouton d'arr\u00eat pour le chagrin.<\/p>\n\n\n\n

L'ann\u00e9e qui vient de s'\u00e9couler a \u00e9t\u00e9 l'un des chapitres les plus difficiles de notre histoire. Nous avons \u00e9t\u00e9 plong\u00e9s dans une odyss\u00e9e diagnostique alors que l'\u00e9tat de sant\u00e9 d'Alex d\u00e9clinait, les analyses montrant des signes \u00e9vidents de dysfonctionnement, de pneumonie persistante, d'inflammation syst\u00e9mique, de faiblesse, de difficult\u00e9 \u00e0 marcher et de crises de choc r\u00e9p\u00e9t\u00e9es qui ont n\u00e9cessit\u00e9 cinq transports a\u00e9riens et de nombreuses hospitalisations.<\/p>\n\n\n\n

\n

\"Je ne sais jamais si le lendemain sera un jour normal ou si nous nous retrouverons dans un h\u00e9licopt\u00e8re en direction de l'unit\u00e9 de soins intensifs p\u00e9diatriques du CHOP.<\/p>\n<\/blockquote>\n\n\n\n

Depuis la fin du printemps dernier, nous avons vu Alex souffrir. Il se remettait un peu, puis retombait. Alors m\u00eame que les sympt\u00f4mes s'accumulaient, nous avons eu du mal \u00e0 convaincre qui que ce soit de faire la part des choses. Il y avait un sch\u00e9ma, mais personne n'\u00e9tait pr\u00eat \u00e0 le nommer. Nous ne demandions pas de miracles, nous demandions \u00e0 quelqu'un d'\u00eatre curieux, de regarder plus loin, de croire que ce que nous voyions \u00e9tait r\u00e9el.<\/p>\n\n\n\n

Fin avril, nous avons finalement re\u00e7u deux nouveaux diagnostics : une d\u00e9ficience en properdine, une maladie g\u00e9n\u00e9tique rare d'immunod\u00e9ficience primaire, et une bronchectasie, une maladie pulmonaire chronique qui n\u00e9cessite une gestion quotidienne minutieuse. Tout cela s'ajoute aux probl\u00e8mes hypothalamiques qui ont commenc\u00e9 apr\u00e8s la tumeur c\u00e9r\u00e9brale.<\/p>\n\n\n\n

Il y a des moments, rares et fugaces, o\u00f9 il se sent bien. Et quand c'est le cas, il rayonne de joie. Ce n'est que dans ces moments-l\u00e0 que je r\u00e9alise \u00e0 quel point il a \u00e9t\u00e9 malade, parce qu'il le remarque lui aussi. Un jour, il m'a dit : \"Mes mains ne tremblent pas\", comme si c'\u00e9tait nouveau. Les mains qui tremblent, les difficult\u00e9s \u00e0 marcher, c'\u00e9tait sa r\u00e9alit\u00e9 depuis longtemps, et il avait simplement appris \u00e0 vivre avec. Ce genre de r\u00e9silience me brise le c\u0153ur et le remplit en m\u00eame temps. Et \u00e0 travers tout cela, Alex rebondit, imperturbable, comme lui seul peut l'\u00eatre.<\/p>\n\n\n\n

Et puis il y a le d\u00e9fi de naviguer dans la vie. En dehors de la communaut\u00e9 des personnes atteintes d'une tumeur c\u00e9r\u00e9brale, il y a souvent un silence, un foss\u00e9 qui ne peut \u00eatre combl\u00e9. Les gens ne savent pas quoi dire ou comment supporter le poids de notre r\u00e9alit\u00e9. Avec le temps, ce foss\u00e9 se transforme en isolement. L'acceptation se fait par vagues, en r\u00e9alisant que la vie que nous menons n'est pas une vie que la plupart des gens comprendront jamais compl\u00e8tement, et que nous devrons toujours vivre avec cela.<\/p>\n\n\n\n

Aujourd'hui, une semaine seulement apr\u00e8s notre sortie de la derni\u00e8re et de l'une des plus stressantes hospitalisations, nous naviguons entre ces nouvelles maladies chroniques complexes, les incertitudes croissantes et la douleur de voir les autres s'en sortir alors qu'Alex continue \u00e0 se battre. Je ne sais jamais si le lendemain sera un jour normal ou si nous nous retrouverons dans un h\u00e9licopt\u00e8re en direction de l'unit\u00e9 de soins intensifs p\u00e9diatriques du CHOP. C'est une v\u00e9rit\u00e9 difficile \u00e0 accepter, m\u00eame si j'encourage tous les enfants atteints d'un craniopharyngiome qui s'\u00e9panouissent.<\/p>\n\n\n\n

\n

\"Nous ne marquons pas les dix ans avec facilit\u00e9. Nous les marquons avec r\u00e9v\u00e9rence - pour tout ce que nous avons endur\u00e9, tout ce que nous avons construit, tout ce que nous portons en silence, et tout ce que nous esp\u00e9rons encore.\"<\/p>\n<\/blockquote>\n\n\n\n

Et pourtant, nous voici dix ans plus tard. Dix ans de survie, d'adaptation, d'espoir, de deuil et de lutte. Dix ans que le plus extraordinaire des gar\u00e7ons nous enseigne ce que signifie continuer \u00e0 avancer. Nous ne marquons pas ces dix ans avec facilit\u00e9. Nous les marquons avec respect pour tout ce que nous avons endur\u00e9, tout ce que nous avons construit, tout ce que nous portons en silence et tout ce que nous esp\u00e9rons encore.<\/p>\n\n\n\n

\u00c0 ceux qui, au sein de cette communaut\u00e9, nous ont soutenus, merci. Vos encouragements, vos messages, vos histoires partag\u00e9es et votre solidarit\u00e9 nous ont soutenus plus que vous ne le pensez. Et aux familles qui suivent ce chemin : Je vous vois. Je suis avec vous. Et nous continuerons \u00e0 nous battre pour am\u00e9liorer la situation.<\/p>\n\n\n\n

N'h\u00e9sitez pas \u00e0 faire un don en l'honneur d'Alex pour le Mois de la sensibilisation aux tumeurs c\u00e9r\u00e9brales. <\/p>\n\n\n\nFaire un don ici<\/a>","protected":false},"excerpt":{"rendered":"

Ce que ce voyage nous a appris - et ce que nous apprenons encore Il y a dix ans aujourd'hui, notre ... Lire plus<\/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":"\nMarking 10 Years From Diagnosis - Raymond A. 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