Thank you to all of those who keep regularly asking news for Florian. We feel obliged to take the time to this blog.
The latest news have been pretty good. He has his last infusion before waiting to start the 3 year maintenance chemo which will start in 2 weeks. He will have to take drugs every day and will have to return to Strong hospital about once a week for an infusion, he didn't really like to hear that he will have to keep doing infusions and lumbar punctures every months, the good news is the rhythm is longer than last year. His last chemo sessions didn't affect him as much as they did in the past, only for a day or two. He kept working and didn't take any half days after his infusion.
As we were saying before he is living a normal life again. He is working full time at Corning, is liking it a lot and is being very professional. He is starting to exercise, push ups, sit ups and so on every morning and night to get his muscles back. He is pretty happy with his weight at this time, he is doing everything to stay fit and wants a six pack. It's starting to show up....the pots of Nutella aren't getting emptied as quickly as usual and he is happy to be able to buy medium shirts. Overall it's a new look. People don't recognize him right away and it's a pleasure to say hello when meeting people again (Florian's specialty knowing how social he is).
Last weekend he went back to the pool. He was really happy and realized that it had been about a year and a half since he had swam which is a really long time for him.
Small side note.
If I hadn't mentioned it before, our cat Surprise is really close to Florian. Since he has been sick she is always near him, she even waits when he is not there. She can feel that he needs her and vice versa. It seems that cat can tell when people have this type of illness.
Another important point is that Florian has a 1996 Jeep which he loves to drive and regularly goes on rides to change his mind (yes he is contributing to global warming with his Jeep's gas consumption). It often falls apart and every time we get it repaired. Two weeks ago I had to go get him about 1 hour away since his car had another problem, so I suggested that it could be time to get a new car. He looked at me as if I was saying the dumbest thing he could possibly imagine.
He told me that he had a special relation with his car and that there was no way he was getting a new one. He told me very seriously "In my life there are two women that count: Surprise and my Jeep!". I didn't dare to say anything about his car and we got it fixed once again, apparently their motors are unkillable.
On the 20th of June we are participating once again on the Relay for Life in Corning like last year, you are all welcome to join us. Don't hesitate to contact us if you have any questions about the relay. For more info you can go to the following website:
http://main.acsevents.org/site/TR?px=33544538&pg=personal&fr_id=56503&fl=en_US&et=oJQscXCycjXwTd6WiFLp2Q&s_tafId=1467704
P.S.: Everyone needs to cheer for Belgium in the World Cup! And Flo too maybe.
Thanks again for all the support we have had we really appreciate it. The fact that so many people are actively checking out the site really helps with confidence knowing that so many people care. Shout out to everyone who does because you are really helping just by checking in once in a while.
Thanks again for reading and have a great day/
Monday, June 16, 2014
Sunday, June 8, 2014
Dernière chimio avant d'entamer les sessions de maintenance
Merci a tous ceux
qui me demandent régulièrement des nouvelles de Florian.
Cela m’oblige a prendre le temps d’écrire sur le blog.
Les nouvelles
sont assez bonnes. Il a eu sa dernière
infusion avant d’entamer la chimio de maintenance pendant 3 ans. Cela commencera dans deux semaines. Il devra prendre des médicaments tous les
jours et retourner a Strong environ 1 fois par mois pour une infusion. Il n’a pas beaucoup apprécié d’entendre
qu’il devait encore avoir des infusions et des ponctions lombaires tous les
mois. Mais le rythme est plus espacé que
l’année dernière. Les dernières chimios ne l’ont pas autant affecté que les précédentes. Il a les effets secondaires habituels mais seulement
pendant 1 ou 2 jours. Il a tenu a aller
travailler et ne pas prendre une demi journée pour se reposer après son
infusion.
Comme je disais
précédemment, il reprend une vie normale.
Il travaille plein temps a Corning.
Il apprécie beaucoup et est très professionnel.
Il recommence à
faire des exercices, pompages,
abdominaux tous le jours, matin et soir,
pour récupérer ses muscles. Il est assez content avec son poids
actuel : il fait tout pour maintenir sa ligne, et veut avoir
des »tablettes de chocolat ».
Cela commence à venir… Les pots
de Nutella ne se vident plus (aussi vite),
et il est tout content de pouvoir acheter des chemises Medium. Bref, c’est un nouveau look. Les gens
ne le reconnaissent pas toujours et bien sur il se fait un plaisir de leur dire
bonjour et de « refaire » connaissance : spécialité de Florian,
the « social guy ».
Le weekend
dernier, il est retourné dans la piscine.
Il était super heureux et a
réalisé que cela faisait depuis environ un an et demi qu’il n’avait plus nagé,
ce qui est long pour un nageur comme
lui.
Petite
anecdote.
Si je ne l’ai pas
mentionné auparavant, notre chatte « Surprise » est très attachée à
Florian. Depuis qu’il est malade, elle
est toujours auprès de lui, elle l’attend quand il n’est pas la. Elle sent vraiment qu’il a besoin d’elle et
vice versa. Il semble connu que les
chats peuvent sentir ce genre de maladie.
Autre point
important, pour ceux qui ne savent pas Florian a une Jeep Cherokee de
1996. Il adore la conduire et va régulièrement faire
un tour pour se changer les idées. (oui,
il contribue certainement au réchauffement
de la planète au vu de la consommation de sa Jeep). Elle tombe régulièrement en
panne et chaque fois on fait réparer. Il
y a 2 semaines j’ai du aller le chercher a 1 heure d’ici car sa voiture avait
de nouveau un problème. Je lui ai suggéré
qu’il était peut être temps de penser a changer de voiture.
Il m’a regardé
comme si je disais la plus grosse bêtise que l’on puisse imaginer.
Il m’a déclaré
qu’il avait une relation spéciale avec sa voiture et qu’il était hors de
question de s’en séparer. Il m’a
dit très sérieusement : « dans
ma vie il y 2 femmes qui comptent le plus : Surprise et ma
voiture ! » Je
n’ai bien sur plus osé rien dire pour sa voiture et nous l’avons fait réparer
une fois de plus. Il paraît que le
moteur est increvable !!
Le 20 juin nous participerons de nouveau au " Relay for Life" a Corning comme l'année dernière. Vous êtes les bienvenus si vous voulez vous joindre a nous, n'hesitez pas a nous contacter pour de plus amples renseignements.
Pour plus d'info, vous pouvez aller sur le site :
http://main.acsevents.org/site/TR?px=33544538&pg=personal&fr_id=56503&fl=en_US&et=oJQscXCycjXwTd6WiFLp2Q&s_tafId=1467704
Friday, May 9, 2014
1 Year already
Once again, sorry we haven't had news lately. Even if the news are less regular, I know you are all following Florian's journey. It's a huge boost for the family and Florian to that he has so many people that care about what he is going through.
First thing I would like to mention: the 3rd of May it had been exactly 1 year that he was diagnosed with leukemia. It would be useless to say that it is getting to be long, but he is holding on through the good and rough times.
Other important thing about Florian, he just turned 22. Last year he didn't really have the occasion to celebrate his 21st birthday (very important birthday here in the states) since he was already really sick. He barely took 2 sips of veer (Belgian obviously) that he bought on his 21st birthday. This time he managed to celebrate his birthday with his friends in North Carolina it's much cooler than to come with his parents even if they went to the Caribbeans.
He went to a concert outside in the rain and of course came back with a stuffy nose and a strong cough which wasn't the best for his chemo. His doctors completely understood that he would rather take a few days off before he got started again.
Regarding his chemo Florian has started his last cycle of intense chemo in the beginning of April. It's another combination of chemo but the results are still the same: nausea, his digestive system isn't the best, and he is tired.
His doctor gave him 10 days to go visit his friend in North Carolina, right after he got back he would have had his chemo but because the wasn't feeling great with his runny nose they decided to postpone it by a week. Even if his calendar was established a while back, we learned that it is hard to plan this type of stuff months in advance, even a week can be tough. He just had an infusion today and it seems that everything is normal. His sessions during this series are spread out each 1 days and should continue until mid June if everything goes according to play, which isn't sure.
About a month ago, he had moments that were a bit hard. His moral wasn't at the highest it's been. He seemed to be recuperating for now, his energy and humor are coming back pretty quickly.
This week was pretty intense for him, he is going back to a social life which is normal for a kid his age and how he normally acts. He started working at Corning and is passing his math exam that he couldn't take last year at this exact same time. He started studying again about 3 weeks ago and it was going great for him. He thinks he did well, we will see the grades later. Next week he should be going through a physical.
For his job at Corning we really had to fight. In order to have him get work and to get him to think about other things to make sure his moral was up, Jacques has tried since the beginning of the year to get Florian an internship. He should have started one last summer but of course had to decline the offer. The people with whom he would have worked are well aware of his case and would be happy to see him come. I don't want to get into details but there were multiple steps and conditions that had to be fulfilled. Apparently we are almost there, he was able to start but we are waiting on one more confirmation. We are hoping for the best because so far Florian has enjoyed it a lot even if he has only be there for 2 days.
In August he is going back to buffalo for his last year studying engineering. He has already made plans with his friend who are renting a house in Buffalo for 5 people.
In order to pass the time, Florian and Amaury started taking possession of the basement to reconstitute the Lord of the Rings environment with Warhammer like figurines. They spend hours making paper mache, towers, catapults,... They are also saying they are only starting, there are 7 castles to build. The back and forth to the shop are quite frequent.
These are the main news, it is starting to be nice again after our rough winter. We can see a few blooming flowers and trees. There is hope, spring will finally come.
Once again thank you for all your support for what has already been a year. The road is long, not yet finished, but we are almost there.
First thing I would like to mention: the 3rd of May it had been exactly 1 year that he was diagnosed with leukemia. It would be useless to say that it is getting to be long, but he is holding on through the good and rough times.
Other important thing about Florian, he just turned 22. Last year he didn't really have the occasion to celebrate his 21st birthday (very important birthday here in the states) since he was already really sick. He barely took 2 sips of veer (Belgian obviously) that he bought on his 21st birthday. This time he managed to celebrate his birthday with his friends in North Carolina it's much cooler than to come with his parents even if they went to the Caribbeans.
He went to a concert outside in the rain and of course came back with a stuffy nose and a strong cough which wasn't the best for his chemo. His doctors completely understood that he would rather take a few days off before he got started again.
Regarding his chemo Florian has started his last cycle of intense chemo in the beginning of April. It's another combination of chemo but the results are still the same: nausea, his digestive system isn't the best, and he is tired.
His doctor gave him 10 days to go visit his friend in North Carolina, right after he got back he would have had his chemo but because the wasn't feeling great with his runny nose they decided to postpone it by a week. Even if his calendar was established a while back, we learned that it is hard to plan this type of stuff months in advance, even a week can be tough. He just had an infusion today and it seems that everything is normal. His sessions during this series are spread out each 1 days and should continue until mid June if everything goes according to play, which isn't sure.
About a month ago, he had moments that were a bit hard. His moral wasn't at the highest it's been. He seemed to be recuperating for now, his energy and humor are coming back pretty quickly.
This week was pretty intense for him, he is going back to a social life which is normal for a kid his age and how he normally acts. He started working at Corning and is passing his math exam that he couldn't take last year at this exact same time. He started studying again about 3 weeks ago and it was going great for him. He thinks he did well, we will see the grades later. Next week he should be going through a physical.
For his job at Corning we really had to fight. In order to have him get work and to get him to think about other things to make sure his moral was up, Jacques has tried since the beginning of the year to get Florian an internship. He should have started one last summer but of course had to decline the offer. The people with whom he would have worked are well aware of his case and would be happy to see him come. I don't want to get into details but there were multiple steps and conditions that had to be fulfilled. Apparently we are almost there, he was able to start but we are waiting on one more confirmation. We are hoping for the best because so far Florian has enjoyed it a lot even if he has only be there for 2 days.
In August he is going back to buffalo for his last year studying engineering. He has already made plans with his friend who are renting a house in Buffalo for 5 people.
In order to pass the time, Florian and Amaury started taking possession of the basement to reconstitute the Lord of the Rings environment with Warhammer like figurines. They spend hours making paper mache, towers, catapults,... They are also saying they are only starting, there are 7 castles to build. The back and forth to the shop are quite frequent.
These are the main news, it is starting to be nice again after our rough winter. We can see a few blooming flowers and trees. There is hope, spring will finally come.
Once again thank you for all your support for what has already been a year. The road is long, not yet finished, but we are almost there.
1 an déjà!!!
Encore une fois, je suis désolée de n'avoir pas donné des nouvelles plus tôt. Même si les nouvelles sont moins régulières, je sais que vous suivez l'histoire de Florian de prés. C'est un grand réconfort pour la famille et surtout pour Florian de savoir qu'il y ait tant de personnes qui s' intéressent a son parcours.
Première chose a mentionner: le 3 mai cela faisait exactement 1 an qu’il a été diagnostiqué de sa leucémie. Inutile de dire que cela commence a devenir long, mais il tient le coup avec des hauts et bas.
Autre point important pour Florian, il vient d’avoir 22 ans. L’année dernière, il n'avait pas vraiment eu l'occasion de dignement fêter ses 21 ans (étape super importante ici aux US) puisqu'il était déjà sérieusement malade. Il avait a peine pris 2 gorgées de la bière (belge bien entendu) qu'il avait acheté officiellement a 21 ans exactement. Cette fois-ci il a tenu a célébrer son anniversaire avec ses amis en Caroline du Nord, c’est bien sur plus «cool» que de venir en vacances avec ses parents même si c'est dans les caraïbes!
Il a été a un concert dehors sous la pluie et bien sur il est revenu avec un rhum et une bonne toux bien grasse, ce qui n'est pas optimum pour sa chimio. Mais son médecin comprenait tout a fait que il était préférable qu'il prenne quelque jours "off" pour mieux repartir.
Au niveau de sa chimio, Florian a entamé le dernier cycle de chimio intense au début du mois d’avril. C’est une autre combinaison de chimio mais le résultat est toujours le même: il a des nausées, son système digestif n’est pas optimum et il est fatigué.
Son docteur lui avait donné une semaine sans chimio pour qu’il puisse aller passer 10 jours chez son copain on Caroline du Nord. Juste après son retour il avait sa chimio, mais puisqu'il n’était pas dans la plus grande forme avec son rhum, ils ont décidé de postposer d'une semaine. Même si son calendrier est établi longtemps a l'avance, on a appris qu'il était difficile de planifier quelque chose plus d'un mois ou même 1 semaine a l'avance.
Il vient d'avoir aujourd'hui une infusion de plus et cela semble se passer normalement.
Les séances de cette série sont espacées de 10 jours et devraient continuer jusqu’à mi juin si tout suit son cours normalement, ce qui n'est pas trop sur.
Il y a environ un mois, il a eu des moments un peu plus durs, et son moral n’etait pas au beau fixe. Il semble récupérer pour le moment, son énergie, son humour reviennent au grand galop.
Cette semaine a ete assez intense pour Florian. Il retourne a un rythme de vie sociale normale pour un "enfant" de son age. Il vient de commencer a travailler a Corning et il a repasse son examen de math qu'il n'avait pas pu passe il y a exactement un an.
Il avait recommence a étudier il y a environ 3 semaines et cela se passait assez bien. Il pense qu'il a réussi. On verra les résultats. La semaine prochaine, il devrait passer son examen de physique.
Pour son boulot a Corning, cela a été un parcours du combattant. Afin qu'il s'occupe et qu'il pense a autre chose pour éviter les coups au moral, Jacques a essaye depuis le début de l’année de faire engager Florian comme stagiaire a Corning. Il devait en faire un l’été dernier et bien sur il a du décliner l'offre. Les gens avec lesquels il devrait travailler sont bien au courant de son cas et sont très contents de le faire venir. Je ne vais pas rentrer dans les détails mais il y a eu plusieurs démarches et conditions qu'il a fallu remplir. Visiblement nous sommes presque arrives, il a pu commencer mais on attend encore une confirmation. Espérons que tout aille bien car jusqu’à présent Florian apprécie beaucoup même si il n'y a été que deux jours.
Au mois d’aout, il retourne a Buffalo pour faire sa dernière année d’ingenieur. Il s’est déjà bien arrange avec ses copains et ils ont loue une maison a Buffalo pour 5 personnes.
Pour passer leur temps, Florian et Amaury ont pris possession du «basement» pour faire une reconstitution du paysage de Lord of The Ring afin de jouer avec les figurines du jeux Warhammer. Ils passent des heures a faire du papier mâché, des tours, des catapultes,... Et il ne sont qu’au début me disent ils: il y 7 châteaux a construire: les allers retours au magasin de bricolage sont assez nombreux...
Voici la majorité des nouvelles, il recommence a faire enfin un peu chaud apres notre rude hiver. Nous pouvons apercevoir quelques bourgeons sur les arbres. Il y a espoir, le printemps va enfin arriver.
Encore un grand merci a tous pour votre support pendant une année déjà. Le parcours est long, n'est pas encore fini, mais une grosse partie est déjà derrière lui.
Première chose a mentionner: le 3 mai cela faisait exactement 1 an qu’il a été diagnostiqué de sa leucémie. Inutile de dire que cela commence a devenir long, mais il tient le coup avec des hauts et bas.
Autre point important pour Florian, il vient d’avoir 22 ans. L’année dernière, il n'avait pas vraiment eu l'occasion de dignement fêter ses 21 ans (étape super importante ici aux US) puisqu'il était déjà sérieusement malade. Il avait a peine pris 2 gorgées de la bière (belge bien entendu) qu'il avait acheté officiellement a 21 ans exactement. Cette fois-ci il a tenu a célébrer son anniversaire avec ses amis en Caroline du Nord, c’est bien sur plus «cool» que de venir en vacances avec ses parents même si c'est dans les caraïbes!
Il a été a un concert dehors sous la pluie et bien sur il est revenu avec un rhum et une bonne toux bien grasse, ce qui n'est pas optimum pour sa chimio. Mais son médecin comprenait tout a fait que il était préférable qu'il prenne quelque jours "off" pour mieux repartir.
Au niveau de sa chimio, Florian a entamé le dernier cycle de chimio intense au début du mois d’avril. C’est une autre combinaison de chimio mais le résultat est toujours le même: il a des nausées, son système digestif n’est pas optimum et il est fatigué.
Son docteur lui avait donné une semaine sans chimio pour qu’il puisse aller passer 10 jours chez son copain on Caroline du Nord. Juste après son retour il avait sa chimio, mais puisqu'il n’était pas dans la plus grande forme avec son rhum, ils ont décidé de postposer d'une semaine. Même si son calendrier est établi longtemps a l'avance, on a appris qu'il était difficile de planifier quelque chose plus d'un mois ou même 1 semaine a l'avance.
Il vient d'avoir aujourd'hui une infusion de plus et cela semble se passer normalement.
Les séances de cette série sont espacées de 10 jours et devraient continuer jusqu’à mi juin si tout suit son cours normalement, ce qui n'est pas trop sur.
Il y a environ un mois, il a eu des moments un peu plus durs, et son moral n’etait pas au beau fixe. Il semble récupérer pour le moment, son énergie, son humour reviennent au grand galop.
Cette semaine a ete assez intense pour Florian. Il retourne a un rythme de vie sociale normale pour un "enfant" de son age. Il vient de commencer a travailler a Corning et il a repasse son examen de math qu'il n'avait pas pu passe il y a exactement un an.
Il avait recommence a étudier il y a environ 3 semaines et cela se passait assez bien. Il pense qu'il a réussi. On verra les résultats. La semaine prochaine, il devrait passer son examen de physique.
Pour son boulot a Corning, cela a été un parcours du combattant. Afin qu'il s'occupe et qu'il pense a autre chose pour éviter les coups au moral, Jacques a essaye depuis le début de l’année de faire engager Florian comme stagiaire a Corning. Il devait en faire un l’été dernier et bien sur il a du décliner l'offre. Les gens avec lesquels il devrait travailler sont bien au courant de son cas et sont très contents de le faire venir. Je ne vais pas rentrer dans les détails mais il y a eu plusieurs démarches et conditions qu'il a fallu remplir. Visiblement nous sommes presque arrives, il a pu commencer mais on attend encore une confirmation. Espérons que tout aille bien car jusqu’à présent Florian apprécie beaucoup même si il n'y a été que deux jours.
Au mois d’aout, il retourne a Buffalo pour faire sa dernière année d’ingenieur. Il s’est déjà bien arrange avec ses copains et ils ont loue une maison a Buffalo pour 5 personnes.
Pour passer leur temps, Florian et Amaury ont pris possession du «basement» pour faire une reconstitution du paysage de Lord of The Ring afin de jouer avec les figurines du jeux Warhammer. Ils passent des heures a faire du papier mâché, des tours, des catapultes,... Et il ne sont qu’au début me disent ils: il y 7 châteaux a construire: les allers retours au magasin de bricolage sont assez nombreux...
Voici la majorité des nouvelles, il recommence a faire enfin un peu chaud apres notre rude hiver. Nous pouvons apercevoir quelques bourgeons sur les arbres. Il y a espoir, le printemps va enfin arriver.
Encore un grand merci a tous pour votre support pendant une année déjà. Le parcours est long, n'est pas encore fini, mais une grosse partie est déjà derrière lui.
Tuesday, March 11, 2014
End of the second to last session of intense chemo
The last news are from a month ago. It's because about until 3 weeks ago Florian's treatment was continuing it's course without any problems as mentioned in the previous posts. He could have a normal life and his treatments weren't too intense.
Three weeks ago he started the second phase of the treatment which he started in January. There are 2 lumbar punctures with a one week interval. along with injections and pills to take every day. He already had these injections in the past and didn't have the best time with them, this medication also makes him nauseous, he vomited 7 times in 1 night. Useless to say he wasn't very hungry. All of that with the usual severe headache at times.
After 2 weeks of this, his red blood cell count, and white blood cells cells drastically decreased. When he went back last Thursday for his next treatment which was supposed to be "lighter", he had to have multiple blood transfusions. He wasn't very happy because these take a lot of time and he hates staying in the hospital. He had to go back the next day and Monday for transfusions. The good side is that he find a little bit of energy for a day or two. Climbing stairs is becoming a challenge and he is always cold. At least this makes one happy person at home, Jacques has a good reason to raise the temperature while I am sweating. Obviously the polar temperatures we are having this winter aren't helping, the average temperature for February was -9°C (I think about 20°F). We have rarely seen the thermometer in the positive (above 32 in Fahrenheit). Today we were at 0°C with a bright sun, people were outside in regular shirts.
This Thursday he has a last injection for this session, this med isn't too bad but he had to again have another transfusion. Normally he should have had 2 based on his red cells rate but he didn't want to stay in the hospital any longer for a second one. He liked less and less the transfusions and receiving blood from someone else.
Since his immune system is once again at 0, they are tried to make sure he didn't catch anything and he is now on antibiotics since he had a sore throat: a very bad memory since almost a year ago his throat started to hurt. He also has a antiviral med since he has big canker soars. He is pretty tired and isn't eating much. He still has nausea at times and his digestive system isn't working at it's best. Overall nothing new regarding what's happened so far this year but to be honest we weren't expecting hi; to be effected by the chemo so much so we are waiting for him to recover, until next Thursday there is no chemo and we are waiting for the end of this session. The next one will have to start after this one but as usual we will have to wait until he recovers.
Since in January he was doing well he started to get bored. Jacques tried to find a job at Corning. This was unfortunately hard since the legal department got involved and wanted to make sure that there was no for someone with leukemia to work at Corning. Now that Florian isn't in great form it simplifies things. At least even if he isn't able to be full time, he could still go while he is feeling well and not too tired. His doctor has agreed to give papers to certify that he isn't risking anything. So if he still isn't feeling well he will be able to work later this summer if he wants.
We just learned that the next session is a series of chemo which occurs every 2 weeks and he has to stay 4-5 days at the hospital for the series of Methotrexate: 4 treatments (so at least 8 weeks). This wasn't his favorite chemo! The previous blogs can attest to that. This last episode should end around May knowing that we will often have to wait between 2 sessions for his blood cells count to rebuild.
The good news is that after this next session, he is moving to maintenance and will get chemo through pills which will have to be taken regularly. This will be in smaller doses so we are hoping he is going through the hard part now. There is one last step, although not pleasing but he will make it with patience.
Shout out to Flo, hope you get through this harsh part asap and I'll come visit again soon - Raf
Three weeks ago he started the second phase of the treatment which he started in January. There are 2 lumbar punctures with a one week interval. along with injections and pills to take every day. He already had these injections in the past and didn't have the best time with them, this medication also makes him nauseous, he vomited 7 times in 1 night. Useless to say he wasn't very hungry. All of that with the usual severe headache at times.
After 2 weeks of this, his red blood cell count, and white blood cells cells drastically decreased. When he went back last Thursday for his next treatment which was supposed to be "lighter", he had to have multiple blood transfusions. He wasn't very happy because these take a lot of time and he hates staying in the hospital. He had to go back the next day and Monday for transfusions. The good side is that he find a little bit of energy for a day or two. Climbing stairs is becoming a challenge and he is always cold. At least this makes one happy person at home, Jacques has a good reason to raise the temperature while I am sweating. Obviously the polar temperatures we are having this winter aren't helping, the average temperature for February was -9°C (I think about 20°F). We have rarely seen the thermometer in the positive (above 32 in Fahrenheit). Today we were at 0°C with a bright sun, people were outside in regular shirts.
This Thursday he has a last injection for this session, this med isn't too bad but he had to again have another transfusion. Normally he should have had 2 based on his red cells rate but he didn't want to stay in the hospital any longer for a second one. He liked less and less the transfusions and receiving blood from someone else.
Since his immune system is once again at 0, they are tried to make sure he didn't catch anything and he is now on antibiotics since he had a sore throat: a very bad memory since almost a year ago his throat started to hurt. He also has a antiviral med since he has big canker soars. He is pretty tired and isn't eating much. He still has nausea at times and his digestive system isn't working at it's best. Overall nothing new regarding what's happened so far this year but to be honest we weren't expecting hi; to be effected by the chemo so much so we are waiting for him to recover, until next Thursday there is no chemo and we are waiting for the end of this session. The next one will have to start after this one but as usual we will have to wait until he recovers.
Since in January he was doing well he started to get bored. Jacques tried to find a job at Corning. This was unfortunately hard since the legal department got involved and wanted to make sure that there was no for someone with leukemia to work at Corning. Now that Florian isn't in great form it simplifies things. At least even if he isn't able to be full time, he could still go while he is feeling well and not too tired. His doctor has agreed to give papers to certify that he isn't risking anything. So if he still isn't feeling well he will be able to work later this summer if he wants.
We just learned that the next session is a series of chemo which occurs every 2 weeks and he has to stay 4-5 days at the hospital for the series of Methotrexate: 4 treatments (so at least 8 weeks). This wasn't his favorite chemo! The previous blogs can attest to that. This last episode should end around May knowing that we will often have to wait between 2 sessions for his blood cells count to rebuild.
The good news is that after this next session, he is moving to maintenance and will get chemo through pills which will have to be taken regularly. This will be in smaller doses so we are hoping he is going through the hard part now. There is one last step, although not pleasing but he will make it with patience.
Shout out to Flo, hope you get through this harsh part asap and I'll come visit again soon - Raf
Sunday, March 9, 2014
Fin de l'avant dernière session de chimio intense
Les dernières nouvelles datent d’il y a un mois. C’est principalement parce que jusqu’il y a environ
3 semaines le traitement de Florian continuait son cours sans trop de
problème. Comme mentionné dans les blogs précédents, il pouvait
avoir une vie presque normale et les traitements n'étaient pas trop intenses.
Il a 3 semaines, il a entamé la deuxième partie du
traitement qu'il avait commencé en janvier. Il a eu deux ponctions lombaires à
une semaine d'intervalle et des injections et pilules à faire tous les
jours. Il avait déjà eu ces injections et il en gardait un assez mauvais
souvenir: ce médicament lui donne des nausées presque instantanément: une
nuit il a vomi 7 fois. Inutile de dire qu'il n'avait pas très faim. Tout cela
accompagné de maux de tête assez sévères a certains moments.
Apres deux semaines à ce rythme, son taux de globules
rouges, ses plaquettes et globules blancs sont drastiquement
descendus.
Lorsqu'il est retourné, jeudi dernier, pour son
traitement suivant qui devait être plus "light", il a du avoir
plusieurs transfusions de sang. Il n'était pas très content car cela
prend beaucoup de temps et il déteste de plus en plus de rester a l'hôpital. Il
a du retourner le lendemain, et le lundi, toujours pour des
transfusions Le point positif est qu’il retrouve un peu d'énergie
pour un jour ou deux. Monter les escaliers devient un challenge et il a
toujours froid. Au moins cela fait un heureux dans le maison, Jacques a une bonne raison de remonter la température
du thermostat alors que comme d'habitude j'étouffe! Evidement les températures
polaires que nous avons cet hiver, n'aident pas vraiment. La moyenne
de la température au mois de février était de - 9°C. On a rarement vu le thermomètre
en positif. Et cela continue.
Aujourd’hui, on était a 0°C mais plein soleil. Les gens étaient partout
dehors en pull!
Ce jeudi, il avait la dernière injection pour cette
session, ce médicament ci n'est pas trop mauvais. Mais il a du de nouveau avoir
une transfusion. Normalement il aurait du en avoir 2 au vu de son
niveau de globules rouges mais il n'a pas voulu rester plus longtemps a l'hôpital
et a refusé la deuxième transfusion. Il apprécie de moins en moins
le principe de la transfusion et de recevoir le sang de quelqu’un d’autre.
Comme son système immunitaire est au niveau 0, ils
essayent d'éviter qu'il attrape quelque chose. Il est maintenant sous
antibiotique car il commençait a avoir mal a la gorge: très mauvais souvenir
puisqu'il y a presque un an que tout avait commencé avec un mal de gorge. Il a
aussi un médicament antiviral car il a de gros aphtes dans la bouche. Il est
assez fatigué et ne mange pas beaucoup.
Il a encore des nausées à certains moments et son système digestif ne
fonctionne pas au mieux. Bref rien de
neuf par rapport a certains moments de l’année dernière mais pour être honnête
on ne s’attendait pas à ce qu’il soit autant atteint par cette chimio. Donc patience et on verra comment il
récupère. Jusqu'à jeudi prochain il n’a
pas d’autre chimio, on est a la fin de la session. La session suivant devrait recommencer après
celle-ci mais comme d’habitude il faudra attendre qu’il récupère.
Puisque en janvier il se portait assez bien et commençait
a s'ennuyer, Jacques a essayé de lui trouver un boulot a
Corning. Cela n'est pas évident car le département légal s'est emmêlé
et a voulu s'assurer qu'il n' y a pas de risques pour une personne leucémique de travailler a
Corning. Maintenant que Florian n'est pas en grande forme, cela ne simplifie
pas la chose. Enfin même si il n'est pas capable de faire un plein temps, il
pourra toujours y aller quand il ne se sent pas trop fatigue. Son
docteur est d’accord de donner des
papiers pour certifier qu'il ne risque rien. Donc si il n’est pas
assez en forme pour y aller, il pourra toujours travailler plus tard cet été si
il le veut.
Nous venons d'apprendre que la prochaine session est la série
de chimio qui a lieu toutes les deux semaines et pour chacune d'elles il doit
rester 4 a 5 jours a l'hôpital : la série de Méthotrexate : 4
traitements (donc au moins 8 semaines). Ce n'était pas sa chimio préférée! Les
blogs précédents peuvent en témoigner. Cette dernière épreuve devrait
finir au environ du mois de mai sachant que il faut souvent attendre entre 2
sessions pour que ses taux de globules remontent.
La bonne nouvelle est qu'après cette session,
il passe en maintenance et il aura de la chimio en pilules a prendre régulièrement.
Cela devrait être a moins fortes doses. Donc espoir, il a fait le
plus difficile du parcours, il reste encore une épreuve, certes pas très agréable
mais il y arrivera. Patience...
Saturday, February 8, 2014
Here we go for another round
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.
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.
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