<div>(Version francaise après la version anglaise)
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<div>Hi everyone 
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<div>Our lives have been a rollercoaster since Logan (now 7) was first diagnosed with a brain tumour (ependymoma) in June 2020. After surgery and proton beam radiation he was in remission but things changed again in November 2022 when a routine MRI detected changes. Since then Logan has undergone 2 more surgeries and craniospinal radiation. Some side effects of these treatments (nausea, lack of appetite and fatigue) still affect him day to day. 
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<div>In December 2023 his oncologist confirmed that Logan had relapsed again. Unfortunately surgery and radiation are not an option. It was explained to us that chemotherapy would not cure Logan but could possibly give him more time. He underwent the chemo for a number of months but it didn't work very well as Logan was not too well with it and the tumour continued to grow slowly. This had not been an easy time for him and after 3 months we made the decision to stop it.
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<div>In the meantime Logan's file was reviewed by an oncology hospital near Paris (ranked 3rd worldwide) and following this assessment their team recommended a treatment for him called onc201. We were very lucky to have the help of the Gavin Glynn Foundation to organise the visit to France. The treatment is currently not available in Ireland nor funded by the HSE and could be a number of years before they can consider its approval . However this same treatment has already met the approval threshold in France - however we are not eligible to qualify for funding from the French government. The treatment costs over €2000 each month and will be more expensive as Logan grows. Oscar kids Ireland has kindly paid for 4 months of treatment so we would have time to prepare for future payments. Many people both in Ireland and farther afield have asked how they can help Logan. At the moment we would greatly appreciate any contribution, large or small, you can make to this Gofundme appeal. The money raised will be used to cover the cost of Logan's treatment in France and to a lesser extent, to help us as a family with some daily expenses. One of us had to stop working to care full time for Logan and the other one is self employed which makes taking time off work to spend with Logan difficult. Reducing our financial worries even in a small way will help Logan and us as a family. 
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<div>Since Logan came off chemo he is in better form and has got back some of his lovely boyish energy. 2 weeks ago he even asked to go back on his bike which he had not done much since he first relapsed. It is lovely to see him wanting to do these things again, just like other little boys his age and even if it is at his own pace. 
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<div>Due to his ongoing treatment, he misses a lot of school but when possible he loves to be there with his friends. The school staff are amazing and so kind and take such good care of him. His classmates and school community are so lovely and love having him around because of his personality and despite his medical condition. 
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<div>His appetite is still up and down but thanks to the feeding tube he has, we feed him overnight and can give extra water to keep him hydrated. 
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<div>He has been on the new treatment for just over a month and is tolerating it well so far (may it last). 
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<div>Despite everything he has been through, Logan is still a happy boy and has not lost his cheekiness. He has faced so much and never lost his sense of humour. He is very brave and strong. He still loves astronauts (his favourite is Chris Hadfield), planets, solar system....anything to do with space. He is our shining star and we are so proud of him. He amazes us every day. 
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<div>Thank you for taking the time to read this and thank you for anything that you can contribute to our fundraiser. 
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<div>Logan, Ariane and Don.
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<div>------------------------ francais------------------------------
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<div>Bonjour à tous.
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<div>Nos vies ont été des montagnes russes depuis que Logan (7 ans aujourd'hui) a été diagnostiqué pour la première fois d'une tumeur cérébrale (épendymome) en juin 2020. Après une intervention chirurgicale et une radiothérapie par faisceau de protons, il était en rémission. Mais la maladie a évolué en novembre 2022 lorsqu'un IRM de routine a détecté des changements. Depuis, Logan a subi 2 autres interventions chirurgicales et une radiothérapie craniospinale. Certains effets secondaires de ces traitements (nausées, manque d’appétit et fatigue) l’affectent encore au quotidien.
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<div>En décembre 2023, son oncologue a confirmé que la tumeur avait de nouveau récidivé. Malheureusement, ni la chirurgie ni la radiothérapie ne peuvent plus s'appliquer. On nous a expliqué que la chimiothérapie ne guérirait pas Logan mais qu'elle pourrait éventuellement lui prolonger sa vie à brève échéance. Il a suivi une chimiothérapie pendant plusieurs mois, mais cela n'a pas été un succès car Logan n'allait pas très bien et la tumeur a continué à croître lentement. Cela n’a pas été une période facile pour lui et après 3 mois nous avons pris la décision d’arrêter. 
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<div>Entre-temps, le dossier de Logan a été examiné par un hôpital oncologique de près de Paris (classé 3ème mondial) et suite à cette évaluation, leur équipe lui a recommandé un traitement appelé onc201. Nous avons eu beaucoup de chance d'avoir l'aide de la fondation Gavin Glynn pour organiser la visite en France. Le traitement n'est actuellement ni disponible en Irlande ni financé par le HSE et il faudra peut-être attendre plusieurs années avant de pouvoir envisager son approbation. Cependant, ce même traitement a déjà atteint le seuil d'approbation en France - mais nous ne pouvons pas y prétendre. Le traitement coûte plus de 2 000 € par mois et augmentera à mesure que Logan grandira. Oscar Kids Ireland a gentiment payé 4 mois de traitement afin que nous ayons le temps de préparer les futurs paiements. De nombreuses personnes en Irlande et ailleurs ont demandé comment elles pouvaient aider Logan. Pour le moment, nous apprécierions grandement toute contribution, grande ou petite, que vous pourriez apporter à cet appel Gofundme. L'argent récolté servira à couvrir les frais de traitement de Logan en France et dans une moindre mesure, à nous aider en tant que famille dans certaines dépenses quotidiennes. L'un de nous a dû arrêter de travailler pour s'occuper de Logan à temps plein et l'autre est travailleur indépendant, ce qui rend difficile de s'absenter du travail pour passer du temps avec Logan. Réduire nos soucis financiers, même dans une petite mesure, aidera Logan et nous en tant que famille. 
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<div>Depuis que Logan a arrêté la chimiothérapie, il est en meilleure forme et a retrouvé un peu plus d'entrain qui lui permet de mieux profiter de sa vie de garçonnet. Il y a deux semaines, il a même demandé à remonter sur son vélo, ce qu'il n'avait pas fait depuis sa première rechute. C'est agréable de voir Logan vouloir refaire des activités, tout comme les autres petits garçons de son âge et même si c'est à son rythme.
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<div>En raison de son traitement continu, il manque beaucoup l'école, mais lorsque cela est possible, il aime y être avec ses amis. Le personnel de l'école est formidable, si gentil et prend très bien soin de lui. Ses camarades de classe et la communauté scolaire sont si attentifs et adorent le voir en raison de sa personnalité et malgré son état de santé.
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<div> Son appétit est toujours aussi défaillant, mais grâce à la sonde d'alimentation qu'il a, nous le nourrissons toute la nuit et pouvons lui donner plus d'eau pour le garder hydraté.
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<div> Il a commencé le nouveau traitement depuis un peu plus d'un mois et le tolère bien jusqu'à présent (que cela dure). 
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<div>Malgré tout ce qu'il a vécu, Logan est un garçon joyeux et est toujours aussi coquin. Il a affronté tant de choses et n'a jamais perdu son sens de l'humour. Il est très courageux et fort. Il aime toujours les astronautes (son préféré est Chris Hadfield), les planètes, le système solaire... tout ce qui a trait à l'espace. Il est notre étoile brillante et nous sommes très fiers de lui. Il nous étonne chaque jour. 
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<div>Merci d'avoir pris le temps de lire ceci et merci pour tout ce que vous pouvez contribuer à notre collecte de fonds. 
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<div>Logan, Ariane et Don.
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Bruce Johnson

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Help Logan's fight

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