Le support des Gollier

On ne pourra pas dire que les Gollier n'auront pas tout fait en leur pouvoir pour supporter Florian.

Voici juste quelques exemples parmi d'autres, chacun a sa facon.

Exemple de support des Gollier de la rue des Moissonneurs:

Jean-Marc, Jerome et Barnabe ont couru les 20km de Bruxelles.  Chaque jour Florian recevait sur Facebook une partie d'un message inscrit sur une banderole : I RUN FOR FLORIAN. 

Ils ont couru 20km, et ils se sont pas mal débrouillés:

Pos

Nr

Name

Age

Nat

Team

10k

Time

Avg

Rank

Name

Rank

S

City

7567.

20833

GOLLIER Barnabé

18

BEL

BRUSSELS BAR

47:11

1:40:05

12.23

750

ESH

7080

M

17897.

20835

GOLLIER Jérôme

26

BEL

BRUSSELS BAR

51:59

1:55:59

10.55

7075

SEH

15362

M

19190.

20834

GOLLIER Jean-Marc

53

BEL

BRUSSELS BAR

55:57

1:58:01

10.37

7139

VH

16252

M

Pas mal du tout, j'aurai ete incapable d'arriver au bout.  

Autre exemple des Gollier de Bazus :  Self explained.

Autre exemple des Gollier-Harou :

Olivier nous a demande de poster ces deux photos.  Visiblement Florian était déjà arme d’un casque et prêt à combattre.

 

Autre exemples :

Il a reçu de nombreuses BD et carte d’encouragement : il adore les commentaires des cousins.  Ne parlons pas des chocolats et provisions comme si on était en état de guerre.  Je dirais que c’est très apprécié par d’autre amateurs de chocolat (on ne dira pas qui…).

Tous :

Le façon dont vous avez répondu a ma demande de donation pour la American Cancer Society m’a épatée.  Je n’y croyais pas. En 3 jours j’avais dépassé mon goal.  Un énorme merci à tous.

Bref un tout grand merci pour votre dynamisme et support. Cela joue un grand rôle dans sa guérison.  

DAY 22  Chemo Day: Very interesting day!!

Morning:  UP
We are preparing everything to be able to go home on Friday (tomorrow).  The nurse explained to us how to flush the IV.  Florian could do it himself and did way better than I did: he got a A+ and I barely passed.  I was so stressed to do something wrong.
They also explained to us about the nurse coming at home twice a week.  They promised me they would give me a spreadsheet with all the medications he has to take every day.  I was relieved because I couldn't remember any of the names of those 5000 medications.
All is very exciting and going really well.

Afternoon: DOWN
Chemo is scheduled for 3:00 pm.  A nurse came to give him some medication (Caspo??) in his IV.  She left, I was on the phone for a meeting and he told me that he was not doing well.  I jumped to his bed, he was shivering, sweating and having a huge headache.  I rushed in the corridor to call for help, they arrived and stopped the IV.  He was doing a little better instantly.  Within minutes there was 10 people in his room to try to understand what happened. They did the full set of tests: X ray, blood tests in both arms at the same time, heart, … Everything. They did not give us a clear explanation up to now of what exactly happened.
We are told that he couldn't go home anymore on Friday but perhaps on Monday. What a bummer!  It was quite disappointing to say the least.

Late Afternoon: EXHAUSTING
We decided to go outside for a walk, it was 92F outside, full sun.  Florian wanted to eat as usual. We went to Cam’s Pizzeria, a walk of about 40 min back and forth.  Quite a challenge for Florian but the pizza he got was the reward and the goal. Nothing could stop him.  He felt so good to be able to choose himself his food and not by phone.  He hasn't done it in more than 5 weeks.

Early evening: UP
We came back from our walk and ran into his doctor. She told us she had good news! The blood results from Day 8 were awesome. They did not find any of those “bad” cells in his blood on day 8 which is above the average (I simplified a lot, sorry for the professionals). She was really enthusiastic and told us that he could go home tomorrow. The medication that caused the reaction was not even needed, she was not too happy they gave it to him either because he is under a pediatric protocol and not for adult. So good news.

Evening: CRAVING
We got back to his room and Florian suddenly asked me for lobster, shrimp or crab.
I jumped in my car go get to Wegmans right away.  For sure I found what I needed, what would I do without Danny Wegmans!!! It was too late for the lobster but I got the crab and the shrimp.  He mentioned clearly to me that he did not want the crab in a can but it had to be fresh!! 
I came back and he was sleeping like a baby, I guess the emotions of the day were the reasons. 

9:00pm CHEMO
Everything went well, he chatted with the nurse as usual for at least 30 min. After Steven (the cleaner) came to talk about Xbox games (I am always lost when he comes in and I never understand a word of their jargon).
The chemo was barely done that he started his crab and shrimps.  He appreciated but would have preferred a lobster!!  

We will see what will happen tomorrow. We never know.

Edit: It's now midnight and he just ate microwaved fish sticks which were apparently a delight. He also managed to sneak beef jerky while they were changing the protective plastic for his IV. Note that EVERYONE in the room has to wear masks while this is happening, and they are incredibly careful to make sure nothing goes wrong, yet he managed to eat his jerky while wearing his mask.

Day 15, Chemo Day #3

Everything is going very well. Florian's doctors came and said that he is actually doing better than expected, which is encouraging news, though he hasn't been discouraged for even one minute of this whole ordeal.  He is in great spirits with the arrival of more friends- Lese drove up from North Carolina and Vasily has arrived from New York City.  More friends arrive tomorrow from Corning, so we are all looking forward to that.

Florian has another session of chemo tonight around 9 pm, and today marks two weeks left until June 6th, which is when the doctors will perform another spinal tap and bone marrow biopsy to see if he is fit to go home to Corning and proceed with outpatient chemotherapy. So far, he still has his hair and has not experienced heavy bouts of nausea or fatigue.  He even told me today that he feels healthy as we walked to the other side of the hospital to get lunch, which I thought was nice to hear.  The nurses are continuing to be amazing and the care we've received here has exceeded expectations. The nurses are in agreement that Florian is the most easy-going, fun patient on the floor.  He is also one of, if not, the youngest patient. We got the green light to go outside the other day when it was 85 degrees and sunny, contingent upon Florian wearing sunscreen along with his helmet and mask.  It was the first time he had been out of the hospital in nearly three weeks, so it was fun to be able to sit in the grass:



So, for now, all is well. We are waiting to see how he feels once chemo progresses a little bit more, but he feels good on the whole.

Friday, May 17th...again

As you can see in Raphael's post below, Florian has been especially obsessed with sandwiches lately. Some text messages I received around 11pm two nights ago:

"I'm craving meat so badly! Ah! It's killing me. I've never craved something so badly."

"I can't just eat meat at 23:30...that's absurd. I can wait til tomorrow."

20 minutes later:

"I want STEAK! Ahhhh!!"

Followed by:

"I'm looking up pictures of philly cheesesteaks online. Literally. It is killing me.  I think I'll ask mom to get me, like, quick sandwiches you can heat in the microwave tomorrow morning.  Like a philly cheesesteak sandwich. That you can just reheat really quickly. That would literally make my damn day.  That and a meatball sub. Ugh. I'm so excited for tomorrow."

Not two minutes after:

"Would you get me a meatball sub from Aniello's tomorrow, babe? Those are literally my favorite :) "

I'm pretty sure the smiley face was just to butter me up, but how can you say no to this face?!:


"Yo, I look perfect in that helmet, babe. Why didn't you tell me before?" -Florian, upon seeing this photo

Which brings me to my next point...The helmet has been decorated. Mrs. Gollier, on her way to buy Bioshock Infinite or whatever it's called for Florian to play, picked up some fancy stickers.  The back reads "Back Off" and the front says "Don't Tread On Me." Looking extra manly, I might add. No one will want to mess with a kid in this helmet. Especially as he carries his Robert Baratheon's warhammer around the cancer center.

He is feeling relatively weak and tired today from his chemo last night around 9, but has been keeping occupied with his new video game and incessantly harping on me to finish two essays, which leads me to believe he is feeling like his regular self...

Today we were visited by Mr. Kuksenkov (Vasily's dad) who came to say hi and see how things were going, along with a patient care advocate who asked if I was Florian's mom?!? I know Mrs. Gollier is a fountain of youth, but I am two months younger than he is, and also his girlfriend, so we had quite a laugh about that one.

Tomorrow brings another day of video games, hospital food, Arrested Development, incredibly kind nurses, and naps. Feel free to visit, but if you do, for the love of God, BRING A MEATBALL SUB!

Thursday 05/16/13  

DAY 8 of Chemo treatment.

Today is "chemo day" as Florian says.

After tonight he will have two more Thursdays with the same meds, the first phase of chemo lasts for 29 days.  Its the induction which kills all of his bad cells in his blood. After that he has to do another series of treatments for his condition. For now he is concentrating on Day 29 which will be June 6th.

He also had a spinal tab this morning and could not stand up for 3 hours. This did not stop him from eating a steak sub for lunch while he was laying down. He has been doing a lot of exercise to lift his head enough to be able to eat without getting it everywhere.
  
Some examples of his major preoccupations:

Last night at 11:30 pm he sent my mom the following text:

I'm tasting a steak sandwich in my mouth right now and I want to eat one so badly. That means I will have the steak sandwich for lunch and the meatball sub for dinner.

I can literally taste it in my mouth.

Followed by this message at midnight:

Tomorrow, can you buy sandwiches that I can put in the microwave and heat quickly? Like on your way to the hospital? Like cheesesteak, or meatball or whatever they have in the frozen section? That would literally make me so happy. I swear, this is driving me crazy....

Actually. New plan. Can you just bring a meatball sub from Wegman's in the morning? A 14 inch? So I can eat half for breakfast, eat the steak sub for lunch and then the other half of the meatball sub from Wegman's at night. Sorry if this sounds crazy but I would be so thankful if you could do that!

Then at 5am this morning:

So on the sub. Can you ask for swiss cheese? With mushrooms, banana peppers, tomatoes and lettuce?  Also. I'm awake because they had to take blood. I wasn't awake all night thinking about sandwiches, don't worry.

He compares those cravings to pregnant women, (as if he was as well). Obviously they told him to eat as much as he wants to and as long as his throat doesn't hurt too much. Obviously you don't have to tell him twice, he understood right away. His meds, mostly the steroids, are helping a lot with his appetite. Last night my mom bought the super meatball sub from Wegmans with almost everything on it, must have weighted 2kg, he was only able to finish 3/4.

Other than that, he knows all of his nurses by their first names, chats with most of them, asks the techs about xbox games and which to buy, who then go on to describe the game with the different steps to pass ( my mom has no idea what video games are like and has no clue what she is talking about in this realm. Mostly flo and I talked to the nurses about the games we were playing and why they heard "Fuck this shit" so much while we were playing, he just got and beat Blood Dragon) 

He finds everything very cool: he has an IV with 2 tubes, he loves to have 2 different types of meds injected at the same time, he feels important (what? The pain meds help I guess). He is now a specialist with the IV stick (that's actually what they call it, we asked the nurses. For now he is trying to come up with a good name to call it) and knows how to get rid of air bubbles for example, although some nurses would get mad at him if he took care of it without calling them. He thought having some fluid injected in his spine was very cool, and while the doctor was doing so he was asking him about what they were doing in more details. Tonight, he finally peed red because his chemo was red, goal achieved, he was told it could occur and he was finally able to do it. 

Overall we aren't bored.

Raphael left for Raleigh after spending ten (no it was only 9 mom :( ) days there. Flo appreciated it a lot and was glad to play computer/xbox games with his brother. The nurses thought they were twins, Florian lost a lot of weight (this surprised the shit out of us, no one had ever asked us if we were even brothers before). But no worries, he still weighs more than Raphael and isn't near our dad's weight. 

You should know however that he easily gets tired and is pretty weak, his throat is starting to hurt once again. The doctors and nurses are trying their best to avoid the negative sides of chemo, he isn't nauseous yet but he is getting meds for it along with pain relief meds. 

Tomorrow will be the second week at Strong (Rochester), along with the 1 week in Buffalo. We are starting to organize ourselves, we don't have a routine yet but we are getting used to it. Of course the fact that we are spending most of our time in Rochester doesn't help things at home when the heater broke down and was leaking gas. They are in the process of replacing the heater and air conditioner, at least it isn't too cold anymore to live with no heater.

Thursday 05/16/13 

DAY 8 of Chemo treatment.

Aujourd'hui c'est "Chemo Day" comme dit Florian.
Apres ce soir, il y aura deux autres jeudi avec les memes medicaments.  La premiere phase de chimio comporte 29 jours, c'est l'induction qui tue toutes les cellules dans son sang.  Apres il est parti pour une autre serie de traitement de consolidation.  Mais pour le moment on se concentre sur le Day 29 qui sera le 6 juin.

Il a eu une "spinal tab" ce matin et ne pouvait pas se lever durant 3 heures. Cela ne l'a pas empeche de manger un "steak sub" et un meatball sub a midi pendant qu'il etait couche.  Il a fait pas mal d'exercise pour lever sa tete juste assez pour etre capable d'avaler.  Que ne ferait-on pas pour se nourrir!

Quleque exemples de ses preoccupations majeures:

Hier soir a 23:30 il m'a envoye le text suivant:

I'm tasting a steak sandwich in my mouth right now and I want to eat one so badly. That means I will have the steak sandwich for lunch and the meatball sub for dinner.

I can literally taste it in my mouth.

Suite du message a minuit

Tomorrow, can you buy sandwiches that I can put in the microwave and heat quickly? Like on your way to the hospital? Like cheesesteak, or meatball or whatever they have in the frozen section? That would literally make me so happy. I swear, this is driving me crazy....

Actually. New plan. Can you just bring a meatball sub from Wegman's in the morning? A 14 inch? So I can eat half for breakfast, eat the steak sub for lunch and then the other half of the meatball sub from Wegman's at night. Sorry if this sounds crazy but I would be so thankful if you could do that!

Autre text a 5:00 ce matin :

So on the sub. Can you ask for swiss cheese? With mushrooms, banana peppers, tomatoes and lettuce?  Also. I'm awake because they had to take blood. I wasn't awake all night thinking about sandwiches, don't worry.

Il compare cela aux envies de femme enceinte, (comme si il savait ce que c'etait).

Evidement on lui a dit de manger tant qu'il avait de l'appetit et qu'il n'avait pas trop mal dans la bouche.  Donc c'est pas a Florian qu'il faut le dire deux fois, il a tout de suite compris.

Bien sur, il a l'excuse de dire que c'est a cause des steroids qui lui donnent de l'appetit.

Ce soir j'ai ete cherche "le super meatball sub du Wegmans": 14" avec plein de trucs: cela doit peser au moins 2 kg.  Il a cale au 3/4.   

A part cela, il connait toutes les infirmieres par leur prenon, discute le coup avec la plupart, demande aux nettoyeurs quel jeu XBOX il doit acheter,  celui-ci de lui decrire le jeu en question avec les differentes etapes a passer. 

Il trouve tout super cool: il a une IV avec 2 tuyaux: il adore quand il a 2 types de produits injectes ensemble, il se sent super important.  Il est le specialiste de l'intraveineuse et sait exactement comment fonctionne la machine.  Il trouve super cool d'avoir un produit injecte dans sa colonne vertebrale et pendant la procedure discutent avec le medecin pour tout savoir sur la facon dont ils le font.

Ce soir, le super pied a ete ses urines rouges car sa chemio etait rouge. On lui avait dit que cela pouvait arrive, mais il ne pensait pas si vite.

Bref on ne s'ennuie pas.

Raphael est reparti pour Raleigh apres avoir passe dix jours ici.  Florian a super apprecie de le voir et de jouer sur ordi avec son frere.  Les infirmieres les ont pris pour des jumeaux: oui Florian a perdu du poids.... Mais pas d'affolement, il est toujours plus lourd que Raphael et il n'en est pas encore au stade de Jacques... 

Il faut reconnaitre qu'il est assez fatigue et il se sent faible, sa gorge commence a etre de nouveau douloureuse. Les medecins et infirmieres font vraiment tout pour eviter les differents effets secondaires de la chimio: il n'a pas encore eu de nausees et il a des anti douleurs lorsqu'il en a besoin. 

Demain cela fera 2 semaines qu'il est a Strong (Rochester), plus 1 semaine a Buffalo. On commence a s'organiser, on ne peut pas encore parle de routine mais on s'habitue.  Bien sur, le fait de passer la majorite du temps a Rochester ne facilite pas les choses lorsqu'il faut remplacer le chauffage et l'air conditionne qui sont fichus depuis la semaine derniere.   Enfin le timing n'etait pas trop mauvais, il ne fait plus trop froid.

English version of the post from 11th of May for all of Florian's friends in the US.

Lately we have received so many emails and words of encouragement that it has been hard for us to respond to everyone. So we decided to create a blog and keep everyone updated with news as soon as we get them.  Don't hesitate to leave any comments, everyone in the family would greatly appreciate it.

First of all a great thank you to everyone for all the support and help.

Florian has a great moral right now:
He finally got to open up his birthday present, Robert Barathean's war hammer and is ready to fight cancer.

There are good reasons for his outfit:
- The helmet is to avoid getting hurt if he falls ( he is a bit weak at the moment). He could bleed a lot if something goes wrong and he gets hurt.
- The mask is to avoid getting sick from others, pretty self explanatory. He only needs to wear his helmet and mask when he goes outside his room, most of the time he isn't wearing them since he is just chilling in his room playing video games and such.

If you have any ideas for cool bumper stickers for his helmet he is all ears. For now he wants flames on both sides, but we are open to adding other things.

He has to try to exercise as much as he can, so he walks around as much as possible and even goes to the gym which is right next to his room.

He has also been eating well and is changing his diet around a bit more lately but he isn't ready for a thanksgiving dinner quite yet.
For now he isn't feeling nauseous and isn't having other problems because of the chemo, they are giving him meds to make sure he doesn't start feeling nauseous. However he won't be able to avoid the loss of hair.

On a side note for those of you who want to give blood and bone marrow, the doctors have clearly said no for blood. They don't want to give him blood from people who would potentially give a bone marrow because if they did he could start producing anti bodies which could potentially cause problems if he later needs a bone marrow transplant. If he does need a transplant which is not a sure thing at all, we will only know towards the end of the treatment which could be a a few years.

For those who want to better understand his illness, we were told the following website could answer a lot of your questions, he has ALL: Acute Lymphoblastic Leukemia.
http://www.lls.org/?gclid=CJidtJ20j7cCFQYaOgodWlUA4w#/diseaseinformation/leukemia/acutelymphoblasticleukemia/

If you have any other questions, feel free to comment we will try to keep a lookout on the blog and keep it updated as best we can.

11 Mai 2013 Start up of Florian Blog

Dernierement nous avons recu  tellement d'emails et de mots d'encouragement qu'il nous est difficile de repondre a tout le monde. 
Nous avons donc decide d'ecrire un blog ou nous donnerons des nouvelles de Florian.  N'hesitez pas a laisser des commentaires, cela sera apprecie par nous tous.

Tout d'abord un tout grand merci a tous pour vos propositions d'aide.

Florian a un moral d'acier:
Il a recu un marteau War Hammer et est pret a "fight" son cancer!

Il y a une bonne raison pour son accoutrement:
- Le casque est pour eviter qu'il se blesse si il tombe (il est assez faible). Il saignerait beaucoup si il a une blessure ou un hematome puisqu'il n'a plus beaucoup de plaquettes.
- Le masque c'est pour eviter qu'il attrape les microbes des autres. Il doit mettre son casque et son masque seulement lorsqu'il sort de sa chambre.

Si vous avez des idees pour de cool autocollants a mettre sur son casque, il est preneur: il veut des flammes et d'autres styles que l'on trouve sur les voitures par exemple.

Il doit essayer de faire de l'exercise autant qu'il peut: la salle de fitness est juste a cote de sa chambre.

Grande nouvelle du jour: il a mange un cheese burger  ce midi et un chicken parmesan ce soir!!! C'est le premier jour depuis un mois qu'il mange de la nourriture normale!  On en est pas encore au 1/4 de turkey de Thanksgiving mais il y a progres.


Plus serieux maintenant: c'est day 3 pour sa chimio.  Le premier cycle est de 29 jours et tout est defini a l'avance.  Par example demain est day 4 et il recoit une autre dose d'un autre medicament. 
Pour le moment il n'a pas de nausee, pas d'autre probleme lie a la chimio.  Ils lui donnent des medicaments pour essayer d'eviter les nausees.  Par contre il n'evitera pas la perte de cheveux. 

Autre information pour tous ceux qui ont propose de donner du sang, de la moelle,....
Le medecin est categorique pour le sang: il ne veut pas qu'il ait du sang de personnes proches: il pourrait produire des anticorps et cela poserait des potentiels problemes si il a besoin d'une transplantation de moelle osseuse. 
Si il a besoin de cette transplantation, ce qui n'est pas sur du tout, cela ne sera qu'a la fin du traitement donc dans quelques annees.

Pour ceux qui veulent mieux comprendre la maladie, on nous a renseigne le site suivant, cela repond a beaucoup de questions.  Il a ALL: Acute Lymphoblastic Leukemia.
http://www.lls.org/?gclid=CJidtJ20j7cCFQYaOgodWlUA4w#/diseaseinformation/leukemia/acutelymphoblasticleukemia/