Day 40 : Florian outpatient at home

Florian is now back home, outpatient and his next chemo phase. We drive him in Rochester every Thursday to get his spinal tab and get some of his chemo. He learned how to make his own injections and has now a quite impressive list of drugs he needs to take every day. It is like there is a pill for everything.

As far as fighting cancer, Florian seems to do amazingly well. No bad cells and blood count is stabilized. Problem though is now all the side effects. Florian went through a lot of pains pretty much everywhere in his body and the fact that he is exhausted does not help in finding the energy he normally has to fight with his very personal sense of humor. He lost his interest for good food which is somewhat unusual for him...

Last week was relay for life and we would like to thank, again, all the individuals who contributed. Florian was just amazed by all that support. The big day was on Friday and Florian really wanted to be part of it. Unfortunately, the spinal tab he had the day before had literally drained all his energy and he could not wake up to attend the " survivors event " that he really wanted to go to. At 10 PM, though, something sparkled in his head and he decided he had the energy to make it !

Also, Amaury created his own walking team. He stayed awake with Kathy all night. A proof that, when it comes to his brother, he can do amazing things. Thank you all for having been part of that team.

 

Anyways, things right now are a little bit like roller coasters. Highs and lows. Big accelerations in-between and no idea what is going to be next. Things probably need to set-up in this new phase. Raphael came back from North Carolina so the whole family is together. Today, Florian is feeling really good. Maybe, things are setting up.

 

 



Day 29: NO MORE LEUKEMIA CELL IN BONE MARROW

Big news:

Doctor O'Dwyer, his main doctor, just called us to tell us that on the 29th day of the induction phase there was no longer any leukemic cells in his bone marrow. His blood count is perfect, very close to normal.

We knew Florian was strong and ready to fight this, and he beat the first challenge with no problem. He beat the bad cells and his bone marrow is now building his white blood cells again.

Now comes the next phase, consolidation. The first part lasts 59 days.

He will have chemo by infusion every Thursday, we are hoping that the rest of the chemo(4 days a week) will be done by injection or by meds. This means that we will have to go to Rochester once a week, We will know more next week.

Yesterday was the first time we returned to Strong since we left last Friday.

The big difference is that he is considered an outpatient now. We have seen the center of infusion for the chemo, like the others, new and pleasant building. He was all excited to go "It's like the movie 50/50" (very good movie, be careful you will cry and laugh at the same time). Like he says he will be able to talk to the old dudes during his infusion. Over all, once again he sees the positive aspects of things.

For now though the secondary affects of chemo are starting to get more and more pronounced: digestion problems, pain everywhere, extreme fatigue,...Everyday there is something new.

I play nurse with my little plate of meds, cremes, foods, etc....It wasn't really my vocation but a mom is ready for anything. As Florian's doctor (who is really amazing) says a mom is like a moma bear who will do anything to protect her cub.

During the day he sleeps a lot but at night he is always with his friends who come over at the house.

This week, he had chemo and a spinal tab, but he won't have one until next Thursday so we are hoping he will be fine by then.

05/31 Hospital exit

Friday 31/05/13 Florian left the hospital after 5 weeks: 1 week in Buffalo and 4 weeks at Strong.

They confirmed in the morning that he could leave. I asked at what hour we may be able to leave and they told us around noon. Of course I thought this meant at noon we would be on our way, turns out we were wrong.

Florian had a headache that morning, they gave him some meds to help it pass. Meanwhile I was emptying his room with multiple trips to and from the parking lot: excellent for my pedometer and my daily 10,000 steps (Corning activity challenge).

At 11:30 I was ready to go. Florian was calm and in his bed playing Xbox. I told him it should be time for him to shower and his answer was "patience". He was right we didn't leave until 7 pm. They wanted to verify how his headache was proceeding then we had to prepare discharge papers and look for his meds. Of course they didn't tell him too much and made us wait (we didn't dare to move in case we missed the next nurse or doctor.)

Overall this day I understood why you are called a "patient" while in the hospital. You indeed have to be very patient. With Florian's advice I believe I started to understand everything slowly.

So we are heading home at around 9 pm, of course Florian had already organized everything with his friends and was ready to celebrate. And then decided to do it again the next day.

Of course Sunday he was a bit tired, but since then he has been a bit calmer and has been resting a lot more.

It was also Sunday night that he shaved his head with his friends. He didn't warn us but we are getting used to it over time. The important part is that he still has his beard!! Pictures are incoming.

Florian's Hair

Here are the pictures everybody was waiting for.

Support des Gollier Rasmont

Cher Florian,
Nous avons parcouru le monde et lui avons dit que nous t'aimons.

Relay for Life : FLO'S BROS 6/14/13

To support Florian, Amaury created a team for the Relay for Life in Corning on 06/14/13.
The idea would be to have a young team with Florian friends and any other "young" wanting to support him to participate to the Relay. 

Please sign up on the web site Relay for Life, look for the team FLO's BROS. Use the link below.

The event is next Friday, so hurry up to sign up.  We need a lot of people to support Florian.

Sign up for FLO's BRO relay for life team

Thanks a lot.

Day 29: NO MORE LEUKEMIA CELL IN BONE MARROW

Grande nouvelle:

Le médecin, docteur O’Dwyer vient de nous appeler pour nous dire qu’au day 29 (fin de la phase d’induction), il n’y a plus de cellules leucémiques dans sa moelle épinière.  Ses « blood count » sont parfaits, très proches de la normale.

Nous savions que Florian était fort et prêt a se battre, il a réussi le premier défi haut la main.  Il a battu ces « retarded cells » et sa moelle refabrique ses globules normalement. 

Maintenant en route pour la phase de consolidation. La première phase dure 59 jours.

Il aura de la chimio par infusion tous les jeudis, nous espérons que le reste de la chimio (4 jours par semaine) pourra se faire par injection sous cutanée ou par médicament.  Cela veut dire que l’on devrait aller à Rochester que 1 fois par semaine.  On devrait en savoir plus la semaine prochaine.

Hier était la première fois que nous retournions a Strong depuis  son départ vendredi dernier.

La grande différence était qu’ il est considéré comme « outpatient » maintenant.  Nous avons vu le centre d’infusion pour la chimio, comme le reste, nouveau building très agréable.  Il était tout excite a l’idée d’y aller : c’est comme dans le film 50/50 (très bon film, attention on pleure et ri en même temps).   Comme il dit, il va pouvoir parler avec les autres «old  dudes » pendant l’infusion.  Bref encore une fois il voit le bon cote des choses.

Pour le moment,  les effets secondaires de la chimio se font de plus en plus présents : problème de digestion, mal partout, extrêmement fatigue, …  Tous le jours il y a quelque chose de nouveau. 

Je joue a l’infirmière avec mon petit plateau avec ses médicaments, crèmes, nourritures et autres,…  Ce n’était pas vraiment ma vocation, mais une mère est prête a tout.  Comme dit le docteur de Florian (qui est vraiment super) une mère est comme  Mama Bear, elle fera tout pour protéger ses enfants, elle se bat comme elle peut.  

Pendant la journée il dort beaucoup, mais le soir, il a toujours ses copains qui viennent  a la maison. 

Cette semaine , il a eu une chimio (spinal tab) hier, mais il n’en a plus avant jeudi prochain, donc nous espérons qu’il va récupérer. 

05/31 Sortie de l'hopital

Vendredi 05/31/13 Florian est sorti de l’hôpital après 5 semaines : 1 semaine a Buffalo et 4 semaines a Strong.

Le matin on nous a confirmé qu’il pouvait sortir.  Je demande a quelle heure on peut espérer être parti, on nous répond pas avant midi.  Bien sûr dans mon esprit cela veut dire que à midi on est sur la route : erreur grossiere!!!

Florian s’est plaint le matin de mal de tête , on lui donne des médicaments  et cela passe.

Pendant ce temps je vide toute la chambre avec multiples allez retour jusqu’au garage :excellent  pour mon pédomètre et mes 10000 steps par jour (activity challenge avec Corning).

A 11 :30 je suis prête a partir.  Florian est tranquille dans son lit à jouer sa XboX. Je lui dis qu’il serait temps de prendre sa douche.  Il me répond « PATIENCE » .  Il avait raison, on n’est pas sorti avant 19 :00.  Ils voulaient vérifier comment évoluait son mal de tête, ensuite il a fallu préparer tous les papiers de décharge, ensuite chercher les médicaments, ….   Bien sur ils ne te tiennent pas vraiment au courant et l’on attend sans oser bouger de peur de manquer la visite de l’infirmière ou du médecin.

Bref,  ce jour-là, j’ai compris pourquoi on est « un patient » lorsque l’on est a l’hôpital.  Il faut vraiment être patient.  Sous les conseils de Florian, je crois que je commence à comprendre tout doucement.

Donc on rentre à la maison vers 21 :00, bien sûr Florian avait déjà tout organise avec ses copains et est directement parti fêter cela.  Il a remis cela le samedi.

Bien sûr, le dimanche il était un peu fatigue.  Depuis il est un peu plus calme et se repose énormément.

C’est aussi dimanche soir qu’il a rase ses cheveux avec ses copains.  Il ne m’avait pas prévenu, mais on s’habitue.  L’important, il a encore sa barbe !!  Les photos vont suivre.