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NOUVEAU: 11ème lettre de Pierre-André PA11
immer Frische News im BLOG
Photos: siehe unten.
Brief der Spenderin:
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Am 16.7.2014, 140 Tage nach der Stammzell-Transplantation und 150 Tage nach Beginn der Chemotherapie und ca. 200 Tage nach der Typisierungsaktion in Pullach, wurde der Zentral-Katheter von Pierre-André in einer kurzen Operation entfernt. Damit ist die Therapie erfolgreich beendet. Bis jetzt ist alles genau nach Plan verlaufen. Wegen der großen Professionalität seiner Ärzte, Pfleger und Betreuer konnte Pierre-André die Therapie mit viel Freude, Charme und Kraft willig befolgen und war immer zu einem Grinsen bereit, wenn ein Foto für seinen Blog nötig war.
Großer Dank gebührt der Spenderin, eine junge Mutter aus Warschau, für Ihre bereitwillige Stammzellspende, die Pierre-André das Leben gerettet hat. Großer Dank gilt auch allen, die sich für eine Stammzellspende typisieren haben lassen. Nur durch die große Anzahl von potentiellen Spendern konnte der optimale Spender ermittelt werden. Je besser der Spender passt, umso grösser sind die Aussichten auf eine erfolgreiche Transplantation. So hatte Pierre-André das Glück, dass er unten den 23 Millionen weltweit registrierten Personen genau einen 100% passenden Spender finden konnte. Folglich gilt auch großer Dank an alle, die mitgeholfen haben, die Typisierungs-Aktion in Pullach durchzuführen. Ein großer Erfolg ist, dass auch einem anderen Menschen in Holland das Leben gerettet wurde durch einen Spender, der aus der Typisierungs-Aktion in Pullach hervorgegangen ist.
Seit 23.7. darf Pierre-André uneingeschränkt Kontakt zu anderen Menschen haben und auch wie alle anderen Kinder zum Baden gehen. Von seinem Gen-Defekt bleibt ihm kein Risiko, da er nun komplett das Blutsystem seiner Spenderin übernommen hat. Durch die der Stammzell-Transplantation vorangehende Chemotherapie bleibt allerdings ein geringes Restrisiko bestimmter leicht zu diagnostizierenden und zu behandelnden Krebsarten. Deshalb muss Pierre-André zwar keine Medikamente mehr nehmen, aber regelmäßig zur Kontrolle. Ein Risiko mit dem er sehr viel besser leben kann als mit den wenigen Jahren Lebenserwartung, die er vor der Transplantation hatte.
Pierre-André freut sich des Lebens, spricht schon viele Worte, entwickelt sich normal, hat inzwischen auch Haare bekommen, hat nach dem Klinik-Aufenthalt an Ostern wieder sofort das Laufen gelernt, spielt mit seinen drei Geschwistern gerne im Garten und ist fast immer fröhlich. Bald wird er sich nicht mehr an den 7-wöchigen Krankenhausaufenthalt und die umfangreiche Therapie erinnern können. Ihm wird nur der freudige Gedanke bleiben, dass ihm durch viele selbstlose und hilfsbereite Menschen ein glückliches und hoffentlich langes Leben geschenkt wurde.
PS: unter www.dkms.de ist online eine Registrierung/Typisierung als Stammzell-Spender möglich.
Photos von zu Hause / aus dem Krankenhaus :
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5.2.15
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Hier die Zusammenfassung des Arztbriefes über die Transplantation:
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Pierre-André kocht in der Spielküche der onkologischen Tagesklinik:
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Pierre-André wurde mit der Tapferkeitsmedaille ausgezeichnet:
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Organisationsteam der Typisierungs-Aktion in Pullach (abwesend: Frau Bader)
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Hier ein Brief von Pierre-Andrés Spenderin:
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Die Dachgaube unter dem „i“ von „Uni“ ist Pierre-André’s Zimmer.
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System-Wechsel 23.3.2014
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Pierre-André’s Mittagessen:
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27.2.14
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Pierre-André mit der Pädagogin (24/25.2.14):
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Pierre-André hat das gelbe Zimmer
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Pierre-André geht es soweit gut. In seiner Entwicklung ist er weit voraus und kann schon 2-3 Schritte laufen. Er bekommt täglich zweimal Antibiotika, nach der Anfangsphase bekommt er jetzt nur einmal statt zweimal im Monat Immun-Globuline („Antikörper“) aus Blutkonserven. Ein grosses Risiko sind Blutungen wegen der extrem niedrigen Thrombozyten-Zahl. Deshalb trägt er einen gepolsterten Helm. Die Transplantation findet am 26.2.14 statt. Dies bedeutet 6 Wochen Aufenthalt in komplett steriler Umgebung in der Haunerschen Kinderklinik (18.2.14-Ostern) und eine Chemotherapie. Wenn alles gut geht, hat er anschliessend nur regelmäßige Kontrollen. Wenn die Stammzellen-Transplantation nicht funktioniert, gibt es noch die Möglichkeit einer weiteren Transplantation nach 1-2 Jahren oder die Gentherapie. Diese wird jedoch erst seit einigen Jahren in Studien erprobt und birgt unbekannte Risiken.
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Pierre-André übt schon mit der Spritze.
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Pierre-André va bien. Il prend deux fois par jour des antibiotiques, et maintenant seulement une fois par mois il a une perfusion d’anticorps (des anticorps extraits du sang). Il évite des grands rassemblements pour les risques d’infection. Le taux de ses plaquettes est extrêmement bas. Pour cela les saignements, surtout internes, sont très dangereux et il porte un casque. Si un donneur de cellules souches se trouve, une transplantation est prévue pour fin février. Cela signifie un séjour de 6 semaines dans un environnement absolument stérile dans la Haunersche Kinderklinik et une chimiothérapie pendant deux semaines auparavant. Si tout va bien il sera entièrement guérit après et n’aura que des contrôles réguliers. Si la transplantation de cellules souches ne marche pas, il reste comme dernière option la thérapie génique. La thérapie génique n’existe que depuis quelques années et n’est possible que dans le cadre des études cliniques, mais un traitement par thérapie génique semble être prometteur.
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