Here we are in 2014, the new year finally ended.
Florian started his treatment again on January 6th after having had 3 weeks of time off. His friends came back from college and were almost at home the whole time. His cousin Jean-Nicolas came over for 15 days, Raphael came back for the holidays, and Christian (his uncle) came over for a bit as well, he is starting to know Corning pretty well.The youngsters partied during new years at home while the "old people" were at a party.
After his week of chemo, Florian managed to get his doctor to go on a road trip with his 2 friends. They went to meet with a friend in Willmington NC. Florian stayed for a few days and is coming back Monday for a new round of chemo which they delayed for a day for his trip.
The nurse (Mama Kelly as she nicknames herself, she also has kids of Florian's age) spent a lot of time planning meet ups for this session and had changed everything after the new years in order to have his chemo after new years instead of having it on December 30th as previously planned. After that, she had to discharge him once again for his road trip. Useless to say Flo had to use his charm to convince them, I stayed out of the conversation.
The session which he just went through was pretty light and short: 25 days. Both sessions after that will be longer (between 50 and 60 days) and the chemo will be more intense. This will bring us to May. After that he will only need a chemo maintenance, not as strong, mainly pills for 2 years. So we are starting to see the light at the end of the tunnel.
For now Florian is doing pretty well, he sometimes gets tired and can't always follow his friends 100% but he is still feeling well. With his chemo it seems that the secondary effects aren't as bad at least for now.
The next two chemo cycles re the next two Mondays. After that we will get to the next sessions.
They will obviously keep going with the beer brewing. We are in the 4th batch of the beer. They are all different but pretty good. It will really become a family enterprise.
May this new years bring you the best wishes.
Saturday, February 8, 2014
Saturday, January 18, 2014
Reparti pour un nouveau tour
Nous voici
en 2014, la page de 2013 est tournée.
Florian a
repris son traitements le 6 janvier après avoir pleinement profite de 3
semaines de « time off ». Ses copains sont revenus de l’université et
ils étaient presque en permanence a la maison.
Son cousin Jean-Nicolas est venu passe 15 jours, Raphael est rentre pour
les fêtes et son oncle Christian était aussi au rendez-vous, il commence à
connaitre la Corning Valley par chœur. Les jeunes ont tous dignement fête le nouvel an a la maison
pendant que « les vieux » allaient le fêter ailleurs.
Apres sa première
chimio, Florian a obtenu de son docteur l’autorisation de partir pour un road
trip avec 2 autres copains. Ils sont allés reconduire un copain qui habite à
Wilmington(NC). Florian y est reste
quelque jours et est rentre lundi pour un nouveau round de chimio qui avait été
retarde d’un jour juste pour son voyage.
L’infirmière
(Mama Kelly comme elle se surnomme, elle a aussi des garçons de l’âge de
Florian) avait passé beaucoup de temps à programmer les rendez-vous de cette
session et elle avait du tout changer de façon a avoir sa première chimio après
le nouvel an plutôt que le 30 décembre comme initialement prévu. Apres cela, elle a dû les rechanger a nouveau pour son
road trip. Inutile de dire que Florian a
dû user de son charme pour la convaincre, je suis restée en dehors de toute négociations.
La session
qu’il vient d’entamer est assez légère et courte : 25 jours. Les deux
sessions suivantes seront plus longues (entre 50 et 60 jours) et la chimio sera
un peu plus intense. Cela devrait nous
mener jusqu’au mois de mai. Apres cela
il devrait avoir juste une chimio de maintenance, moins forte, principalement
des pilules durant 2 ans. Donc on
commence a voir la lumiere au fond du tunnel.
Pour le
moment Florian se porte relativement bien, il est parfois fatigue et a un peu
de peine a suivre full speed ses copains mais il résiste bien. Avec cette chimio, il semble que les effets
secondaires ne soient pas trop prononces,
au moins pour le moment.
Les deux
prochaines chimio de ce cycle sont les deux prochains lundi. Apres on passera à la session suivante.
Ils
continuent bien sûr à faire leur bière.
Nous en sommes au 4eme brassage de bière. Elles sont toutes différentes mais assez bonnes. Cela va devenir une véritable entreprise
familiale.
Que cette
nouvelle année vous permette de réaliser vos souhaits les plus chers.
Monday, December 9, 2013
Florian's already home
Monday 9th of December,
We are already home: only 4 days for this chemo this time. Last time it lasted 8 days but this time I do not know what Florian did, but he did it very well. His level of Methotrexate went down much faster. He was so happy to come home tonight. He is doing a lot of planning for the end of the year which is a really good sign.
We are already home: only 4 days for this chemo this time. Last time it lasted 8 days but this time I do not know what Florian did, but he did it very well. His level of Methotrexate went down much faster. He was so happy to come home tonight. He is doing a lot of planning for the end of the year which is a really good sign.
4th session of Methotrexate
Here we are in Rochester for the last step of this session: infusion of Methotrexate for 4 to 5 days. After Florian will start another series of chemo which no longer requires to be in the hospital for a week. We don't really know the intensity of the next session but he should start around new years.
We are here on Saint Nicholas, and for now everything is going according to plan. As usual, there are the secondary effects: nausea, stomach aches, sensitive mouth,...He hasn't eaten much and is very tired.
Amaury is in Rochester for the weekend, which is always a plus, at least he knows how to play xbox and appreciates his music. Florian brought his speakers (with woofer) and his xbox. As soon as he got there he worked on all his connections to synchronize it with his tv in his room. Luckily we are at the end of the corridor and there is no one near him because they would easily hear his music at the end of the hallway. The nurses were asking themselves questions, Florian's music isn't really the type of someone on this floor, he is of the second generation of Marley and I hadn't even passed the Bob cap.
If we base this on the last session which was fairly quick even though there was a few incidents, we are hoping to have him out of this infamous Methotrexate by Tuesday or Wednesday.
The last two weeks weren't too bad for Florian. During the week of thanksgiving he had all his friend that were back from college, and last week he went to see his friend in North Carolina. For this he took the Corning shuttle and he was there within an hour and a half (this method of travel is authorized by the doctors, they would be more worried if he had to take a play along with everyone else).
For those who haven't heard Florian and Jacques started to brew their own beers (birthday gift for Jacques). The first bottles (48) were already all drank because there was a lot of people visiting during Thanksgiving and everyone wanted to try them and then asked for more. Not too bad for the first time. They just made a new batch of another type and should be done by Christmas.
Here is a picture of the master brewers with their beer "Golloise" not bad for a names, Jacques came up with it, sticker by Amaury. The Gollier family discussed for a long time the subject of the pronunciation of Gollier which has nothing to do with Gaul, I won't get into details.
For new years, as usual we are not doing anything too special and will see how Florian is doing. We may go somewhere around here but most likely too far away. Everyone is welcome at our house as usual, don't hesitate to come over and visit.
We are here on Saint Nicholas, and for now everything is going according to plan. As usual, there are the secondary effects: nausea, stomach aches, sensitive mouth,...He hasn't eaten much and is very tired.
Amaury is in Rochester for the weekend, which is always a plus, at least he knows how to play xbox and appreciates his music. Florian brought his speakers (with woofer) and his xbox. As soon as he got there he worked on all his connections to synchronize it with his tv in his room. Luckily we are at the end of the corridor and there is no one near him because they would easily hear his music at the end of the hallway. The nurses were asking themselves questions, Florian's music isn't really the type of someone on this floor, he is of the second generation of Marley and I hadn't even passed the Bob cap.
If we base this on the last session which was fairly quick even though there was a few incidents, we are hoping to have him out of this infamous Methotrexate by Tuesday or Wednesday.
The last two weeks weren't too bad for Florian. During the week of thanksgiving he had all his friend that were back from college, and last week he went to see his friend in North Carolina. For this he took the Corning shuttle and he was there within an hour and a half (this method of travel is authorized by the doctors, they would be more worried if he had to take a play along with everyone else).
For those who haven't heard Florian and Jacques started to brew their own beers (birthday gift for Jacques). The first bottles (48) were already all drank because there was a lot of people visiting during Thanksgiving and everyone wanted to try them and then asked for more. Not too bad for the first time. They just made a new batch of another type and should be done by Christmas.
Sunday, December 8, 2013
4eme session de Methotrexate
Nous voici a Rochester pour la dernière étape de cette session: infusion de Methotrexate durant 4 a 5 jours. Apres Florian démarre une autre série de chimio qui ne requiert plus d’être hospitalise pour une semaine. On ne sait pas vraiment l’intensité de la série suivante mais elle devrait commencer autour du nouvel an.
Nous sommes arrives ici pour la Saint Nicolas, et pour l'instant tout se déroule normalement. Comme d'habitude, il a les habituels effets secondaires: nausées importantes, maux de ventre, bouche très sensible. Il ne mange pas beaucoup et est très fatigue.
Amaury est a Rochester pour le weekend, ce qui est toujours un plus : au moins lui il sait jouer a la Xbox et apprécie sa musique. Florian a amené ses haut-parleurs (avec woofer) et sa Xbox. Des qu'il est arrivé il a travaillé sur toutes les connections pour synchroniser avec la TV de la chambre. Heureusement nous sommes en bout de corridor et il n'y a personne dans la chambre a coté car on pouvait entendre sa musique dans le couloir. Les infirmières se posaient des questions. Bien sur le type de musique de Florian n'est pas tout a fait celui de la moyenne des résidents de l’étage. Florian en est a la seconde génération des Marley , je n'avais pas encore passé le cap de Bob.
Si l'on se base sur la dernière session qui avait été assez rapide malgré tous les incidents, nous espérons qu'il pourra sortir mardi ou mercredi en fonction de ce fameux taux de Methotrexate.
Les 2 dernières semaines n'ont pas été trop mauvaises pour Florian. Durant la semaine de Thanksgiving il a eu tous ses copains qui étaient de retour de l'univ. et la semaine dernière il est allé voir un copain en Caroline du Nord. Pour cela il prend le "shuttle" de Corning, et il y est en 1h30. Cette méthode de voyage est autorisée par ses médecins. Ils sont plus réticents si il devait aller dans un aéroport et prendre les avions "de tout le monde".
Pour ceux qui ne sont pas encore au courant Florian et Jacques se sont lancés dans la fabrication de bière (cadeau d'anniversaire de Jacques). Les premières bouteilles (48) sont déjà toutes bues. Puisque il y a eu pas mal de visite durant la période de Thanksgiving, tout le monde voulait goûter et en redemandait. Pas trop mal pour une première fois. Ils viennent d'en refaire une autre sorte qui devrait être bonne pour la noël
.
Voici une photo des "Maitre Brewer" avec leur bières "GOLLOISE", pas mal le nom : Jacques en est a l'origine, étiquette designed par Amaury. Suite a cela, la famille Gollier a longuement disserté sur le sujet de la prononciation du nom Gollier qui n'a rien a voir avec "Gaule", je n'entrerai pas dans les détails.
Pour la période de Noel/nouvel an, comme d’habitude nous ne faisons pas beaucoup de projets et verrons ce que l'on fait en fonction de l’état de Florian. On pourrait peut-être aller quelque part dans les environs, probablement pas de trop grandes distances. Mais tout le monde est le bienvenu a la maison comme d'habitude.
Nous sommes arrives ici pour la Saint Nicolas, et pour l'instant tout se déroule normalement. Comme d'habitude, il a les habituels effets secondaires: nausées importantes, maux de ventre, bouche très sensible. Il ne mange pas beaucoup et est très fatigue.
Amaury est a Rochester pour le weekend, ce qui est toujours un plus : au moins lui il sait jouer a la Xbox et apprécie sa musique. Florian a amené ses haut-parleurs (avec woofer) et sa Xbox. Des qu'il est arrivé il a travaillé sur toutes les connections pour synchroniser avec la TV de la chambre. Heureusement nous sommes en bout de corridor et il n'y a personne dans la chambre a coté car on pouvait entendre sa musique dans le couloir. Les infirmières se posaient des questions. Bien sur le type de musique de Florian n'est pas tout a fait celui de la moyenne des résidents de l’étage. Florian en est a la seconde génération des Marley , je n'avais pas encore passé le cap de Bob.
Si l'on se base sur la dernière session qui avait été assez rapide malgré tous les incidents, nous espérons qu'il pourra sortir mardi ou mercredi en fonction de ce fameux taux de Methotrexate.
Les 2 dernières semaines n'ont pas été trop mauvaises pour Florian. Durant la semaine de Thanksgiving il a eu tous ses copains qui étaient de retour de l'univ. et la semaine dernière il est allé voir un copain en Caroline du Nord. Pour cela il prend le "shuttle" de Corning, et il y est en 1h30. Cette méthode de voyage est autorisée par ses médecins. Ils sont plus réticents si il devait aller dans un aéroport et prendre les avions "de tout le monde".
Pour ceux qui ne sont pas encore au courant Florian et Jacques se sont lancés dans la fabrication de bière (cadeau d'anniversaire de Jacques). Les premières bouteilles (48) sont déjà toutes bues. Puisque il y a eu pas mal de visite durant la période de Thanksgiving, tout le monde voulait goûter et en redemandait. Pas trop mal pour une première fois. Ils viennent d'en refaire une autre sorte qui devrait être bonne pour la noël
.
Pour la période de Noel/nouvel an, comme d’habitude nous ne faisons pas beaucoup de projets et verrons ce que l'on fait en fonction de l’état de Florian. On pourrait peut-être aller quelque part dans les environs, probablement pas de trop grandes distances. Mais tout le monde est le bienvenu a la maison comme d'habitude.
Tuesday, November 19, 2013
Methotrexate 3rd session
Florian was at Rochester starting on Wednesday. Same routine: spinal tap and chemo for 24 hours then flushing it for 24 hours until when he hits the 0.1 coveted number.
This time his doctor is here the whole week and week end. She promised that she would closely follow him to be sure he could leave as soon as possible. She wasn't lying, she came in his room at least 3 to 4 times a day and last night she stayed until 2 a.m. to take care of another urgency. Today she is there again the whole day.
This time Florian's moral is much better, he is keeping his sense of humor even though his usual symptoms are back: headace, nausea, throwing up, stomachache,....He will train on the bike, eat a bit (better than nothing). He is proud to be gaining muscle again, according to him he is noticing forms near his abs, especially now that he no longer has a one pack.
At least this time the first two days were entertaining because there was a few adventures.
As always he started his chemo with his pH higher that 7. Usually this comes with the few bicarbonates iodine (I have no idea if this is actually the right thing, I am just guessing by translating) that he receives as soon as he gets there. This time they stayed at the same level for 24 hours, they had to double the dosage to get there.
Next, after a few hours of methotrexate, he realized that all the tubes for his infusion were disconnected. Because the tubes were open his blood and the chemo, which is a yellow glowing liquid were dripping on the floor. At first he didn't really understand. We called the emergencies and nurses who arrived quickly in numbers. Florian didn't stop laughing and joking around while all the nurses were busy around Florian. Apparently a chemo spill is a big deal. You must not touch the chemo: Florian had it on him and his clothes. After that they had to send the bag of chemo to reconnect the tubes. A specialist had to come because this was chemo and not everyone is able to handle this, this took three hours. They opened an investigation to understand what happened: apparently one of the tubes wasn't properly connected. We talked to his doctor that night and she was not very happy to hear what happened.
The next morning, Florian stayed in his bed because he was pretty tired. All of a sudden he got up and told me that his new chemo was dripping on him. He was actually thinking he was sweating but his found out his chemo was dripping his arm, he checked and noticed that it was a bit too yellow. This time the needle that was in his catheter got removed and once again chemo was dripping on his bed. Once again every one was on red alert to clean up everything. The problem is that he can't use his catheter for his infusion but has to have a intravenous (no clue if that's right? intravien?) in his arm which was not pleasant. Once again this took more than 2 hours to put everything back in order. Over all his doctor was once again pissed and everything was delayed by 5 hours: not a big deal for Florian but visibly he can't have chemo in his body for too long.
All these events attract people, they all talk about Florian stories and come talk to him for details. Florian answers their questions and they are all so happy to have their "Florian time", the nurse say "Yes outside their is a long waiting line that are waiting to see him."
Now we are waiting to see if his methotrexate level lower as normal and at what speed,
This time his doctor is here the whole week and week end. She promised that she would closely follow him to be sure he could leave as soon as possible. She wasn't lying, she came in his room at least 3 to 4 times a day and last night she stayed until 2 a.m. to take care of another urgency. Today she is there again the whole day.
This time Florian's moral is much better, he is keeping his sense of humor even though his usual symptoms are back: headace, nausea, throwing up, stomachache,....He will train on the bike, eat a bit (better than nothing). He is proud to be gaining muscle again, according to him he is noticing forms near his abs, especially now that he no longer has a one pack.
At least this time the first two days were entertaining because there was a few adventures.
As always he started his chemo with his pH higher that 7. Usually this comes with the few bicarbonates iodine (I have no idea if this is actually the right thing, I am just guessing by translating) that he receives as soon as he gets there. This time they stayed at the same level for 24 hours, they had to double the dosage to get there.
Next, after a few hours of methotrexate, he realized that all the tubes for his infusion were disconnected. Because the tubes were open his blood and the chemo, which is a yellow glowing liquid were dripping on the floor. At first he didn't really understand. We called the emergencies and nurses who arrived quickly in numbers. Florian didn't stop laughing and joking around while all the nurses were busy around Florian. Apparently a chemo spill is a big deal. You must not touch the chemo: Florian had it on him and his clothes. After that they had to send the bag of chemo to reconnect the tubes. A specialist had to come because this was chemo and not everyone is able to handle this, this took three hours. They opened an investigation to understand what happened: apparently one of the tubes wasn't properly connected. We talked to his doctor that night and she was not very happy to hear what happened.
The next morning, Florian stayed in his bed because he was pretty tired. All of a sudden he got up and told me that his new chemo was dripping on him. He was actually thinking he was sweating but his found out his chemo was dripping his arm, he checked and noticed that it was a bit too yellow. This time the needle that was in his catheter got removed and once again chemo was dripping on his bed. Once again every one was on red alert to clean up everything. The problem is that he can't use his catheter for his infusion but has to have a intravenous (no clue if that's right? intravien?) in his arm which was not pleasant. Once again this took more than 2 hours to put everything back in order. Over all his doctor was once again pissed and everything was delayed by 5 hours: not a big deal for Florian but visibly he can't have chemo in his body for too long.
All these events attract people, they all talk about Florian stories and come talk to him for details. Florian answers their questions and they are all so happy to have their "Florian time", the nurse say "Yes outside their is a long waiting line that are waiting to see him."
Now we are waiting to see if his methotrexate level lower as normal and at what speed,
Feel good
Since his last chemo with his prolonged hospital stay Florian is getting better. He has gained back a lot of weight.
People that haven't seen him lately tell him: "You look great!'
Florian always responds: "I feel great"
It's true he has been feeling pretty well.
Jacques and him made beer at home, Jacques received a kit to make beer for his birthday. It took about a week end , Florian followed the instructions to the letter by watching a video online on youtube. FLorian went to the store to get more info as well. Overall it was a great deal. The only problem is that you have to wait for a few weeks for it to be drinkable.
People that haven't seen him lately tell him: "You look great!'
Florian always responds: "I feel great"
It's true he has been feeling pretty well.
Jacques and him made beer at home, Jacques received a kit to make beer for his birthday. It took about a week end , Florian followed the instructions to the letter by watching a video online on youtube. FLorian went to the store to get more info as well. Overall it was a great deal. The only problem is that you have to wait for a few weeks for it to be drinkable.
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