Thursday, December 11, 2014

Back to Buffalo

We are sorry for not giving news earlier.
All is well. And as always, thank you all for your messages of encouragement. The positive vibes work well across the ocean!

Florian has returned as expected Friday, November 21. Even if he was just glad to get out of the hospital (he had a huge smile as he crossed his hospital room door) he realized he was still pretty tired.
On Monday, he was at the bank and made a sandwich with Kirsten. He returned in the afternoon and took a nap.
During the week, he needed a much needed rests. Since it was Thanksgiving, he saw his good old buddies Vasily and Kyle.

He tried again to study but he complained of a "chemo brain" which does not really help to put it in a good way.
Thanksgiving, I was expected to make the stuffing, the gravy and turkey. He ate turkey for 48 hours non stop: the evening, night and morning. Visibly, left overs are the best for Thanksgiving. It should be added that the turkey was "marinated" for heures et n’était pas trop mauvais.
The weekend we went to hunt for a car. Amaury having made a total mess with his car by hitting a deer on the highway (just crumpled front end fortunately) and Florian got a new car since September, Amaury got Florian's car (which did not have the heart to separate completely from it) and Florian now has a 2013 Jetta. Coming from a 1996 jeep, it's a change.
Sunday night he returns to Buffalo with his new car!
Monday I got on the phone and he had to admit he was still tired. He said that he was not superman and needed time to recover.

Yesterday he had an exam for which he was unaware of because he had missed three weeks of the course, it was a bit of a stress because he had to do it and the teacher had not really listened to his excuses. During the next 2 weeks, it has all his final exams for the semester. Already during regular time it's not a very easy time but this time having missed three weeks of courses and not in great shape, the stress level is a little higher.

Today he had to go to Rochester to start chemo. 1 month ago, he had stopped all treatment because it was not going too well.
He explained his exam problems to the doctor, she told him she would call directly to his teachers to explain the situation. We regularly joke with her, saying that she is like a second mother to Florian: it has just been proven once again.

Florian was also afraid of losing his job has its irish pub if he does not return to work right away. Finally, after some discussion, he agreed to admit he could not study, and at the same time work. His doctor also gave him a letter of apology for his work saying he had to fight a "life Threatening infection" and was still recovering.


tl;dr Flo tries to be superman. Even if he's proved it before multiple time, he has to admit his body has some human limits. Lesson hard to learn when you're 22!

Wednesday, December 3, 2014

De retour a Buffalo

Désolée de n’avoir pas donne de nouvelles plus tôt.
Tout va bien.  Et comme d’habitude, merci a tous pour vos messages d’encouragement. Les ondes positives fonctionnent bien a travers l’océan !

Florian est bien rentre comme prévu le vendredi 21 novembre.  Meme si il était tout content de sortir de l'hôpital (il avait un enorme sourire aux lèvres en franchissant le pas de porte de sa chambre d'hôpital)  il s’est rendu compte qu’il était encore assez fatigue.  
Le lundi, il a été a la banque et prendre un sandwich avec Kirsten.  Il est rentre l’après midi et a fait une sieste.
Durant la semaine, il s’est beaucoup repose.  Puisque c’etait Thanksgiving, il a vu ses bons vieux copains Vasily et Kyle. 
Il a essaye de recommencer a étudier mais il se plaignait d’avoir un « chemo brain » ce qui ne l’aidait pas vraiment a s’y mettre.
Pour Thanksgiving, il était indispensable que je fasse le stuffing, le gravy et la turkey.  Il a mange de la turkey durant 48 heures non stop : le soir, la nuit et le matin.  Visiblement les restes sont les meilleurs de Thanksgiving.  Il faut ajouter que la turkey avait « trempe » durant 24 heures et visiblement elle n’était pas trop mauvaise.
Le weekend nous sommes allés a la chasse d’une voiture.  Amaury ayant fait un dégât total avec sa voiture en heurtant un « deer » sur l’autoroute (rien que de tôle froissée heureusement) et Florian voulant investir dans une nouvelle voiture depuis le mois de septembre, Amaury a récupéré la voiture de Florian (qui n’avait pas le cœur de se séparer complètement de sa Jeep) et Florian a maintenant une Jetta de 2013.  Venant d’une jeep de 1996, cela fait un changement. 
Dimanche soir il est retourne a Buffalo avec sa nouvelle voiture !
Lundi je l’ai eu au téléphone et il a du avouer qu’il était encore fatigue.  Il a admis qu’il n’était pas superman et qu’il  fallait du temps pour récupérer.

Hier il avait un examen pour lequel il n’était pas au courant puisqu’il avait rate 3 semaines de cours, il était un peu stresse car il a du le faire et le prof n’a pas vraiment écouté son excuse.   Durant les 2 prochaines semaines, il a tous ses examens finaux pour le semestre.  Déjà en temps normal, ce n’est pas une période tres calme mais cette fois ci en ayant rate 3 semaines de cours et en n‘étant pas en grande forme, le niveau de stress est un peu plus élevé.

Aujourd’hui il devait aller a Rochester pour recommencer sa chimio.  Depuis 1 mois, il avait arrêté tous ses traitements car il n’allait pas trop bien. 
Il a raconte ses problèmes d’examens a son médecin, elle lui a directement dit qu’elle téléphonerait a ses professeurs pour leur expliquer la situation. On blague régulièrement avec elle en disant qu’elle est comme une seconde mère pour Florian : elle vient de le prouver une fois de plus. 

Florian avait aussi peur de perdre son boulot a son irish pub si il ne retournait pas travailler directement.  Finalement après quelques discussions, il a bien voulu admettre qu’il ne pourrait pas étudier et en même temps aller travailler.  Sa médecin lui a aussi donne une lettre d’excuse pour son boulot en disant qu’il avait du combattre une « life threatening infection » et qu’il était toujours en convalescence.


Bref Florian essaye d’être superman,  mais même si il nous a prouve plusieurs fois qu'il en est un, il doit parfois admettre que le corps humain a ses limites.   Leçon difficile à apprendre quand on a 22 ans !

Friday, November 21, 2014

We are finally breathing

Good news everyone!

Florian is definitely on the right track, he can go home tomorrow. He is still quite tired, the last two nights he couldn't sleep because of the large doses of steroids he has to take at night. They just decided to reduce the dose and he only had to take it this morning so hopefully he can get some sleep.

He has lost a lot of weight again, it is quite understandable knowing that he didn't really eat for 10 days. His doctor decided not to hurry to start his chemo again. She would rather have him get better first and give him a week (Thanksgiving) off. She will decide after depending on his condition.
She Already told us that she told the head of intensive care that he had to do everything to get Florian better or else she would quit her job.

For all those asking about the snow, yes there was a lot in Buffalo but it is quite random and it really varies from one place to another. As for the highway it was closed between Rochester and Buffalo and has been for 3 days. This means that we are unfortunately not able to get his things form his apartment: his car, his computer and some clothes. We left Buffalo in q hurry and didn't really have time to pack. We'll see this weekend, it should melt because it should be around 15C later this week. This is also an issue because they now fear flooding after the snow storm.

Thursday, November 20, 2014

On respire

Bonne nouvelle

Florian est définitivement sur la bonne pente. Il peut rentrer a la maison demain.
Il est encore assez fatigue car les deux dernières nuits il n’arrivait pas à dormir à cause des doses importantes de stéroïdes qu’il doit prendre le soir.  Aujourd’hui, ils diminuent la dose et il en a pris que le matin donc il espère pouvoir dormir.

Il a de nouveau perdu pas mal de kilos, c’est assez compréhensible sachant qu’il n’a pas vraiment mange depuis 10 jours.
Son médecin a décidé de ne pas se presser pour reprendre sa chimio.  Elle préfère qu’il se retape et lui donne la semaine prochaine (Thanksgiving) de repos.  Elle décidera après en fonction de son état.
Elle  nous a avoué qu’elle avait dit au responsable des soins intensifs que il devait tout faire pour guérir Florian car si il lui arrivait quelque chose elle abandonnait son boulot.

Pour tous ceux qui nous demandent à propos de la neige : oui il y en a eu à Buffalo mais c’est assez irrégulier et cela varie vraiment d’un endroit a l’autre. Comme l’autoroute, assez principal, entre Rochester et Buffalo est ferme depuis 3 jours, on ne peut pas aller chercher les affaires de Florian a Buffalo : sa voiture, son ordinateur et quelque vêtements.  On était parti en vitesse de Buffalo et il n’avait pas grand-chose avec lui.  On verra ce weekend, cela devrait fondre puisqu’il y aura 15C. D’ailleurs ils craignent les inondations après les tempêtes de neige.
Ici a Rochester on a aussi eu de la neige, un peu tôt pour la saison comme la photo en témoigne.
  
Comme dit Jacques,  on respire.






Monday, November 17, 2014

Hourrah!

Monday morning at 9:00 am arrival of doctors, the beginning of the round this time. Maybe the theory of when the doctors come is not correct.
It was the super big boss of all intensive care unit (there are 3 or 4 units), very academic, trying to ask questions to a charming young doctor. In short after 20 minutes of chatting outside the room with his team, he requests that the respirator be removed for Florian. Hurrah !!! We couldn't believe it.
Florian's girlfriend, Kirsten had stayed the night with him and he was super agitated the whole time while trying to move around.

They removed the tube in 2 min:  no more respirator or feeding tube,  when it took them hours to put them in. Throughout the day, they removed most connections to most machines, he only has his Mediport and lines for antibiotics hooked up.
He'll talk (or rather mumble) but he is still in a daze because of all the sedatives he took. The nurse gave us the reference dosage he received during these 4 days (50 years olds and older will understand). For a colonoscopy they give 3 grams of this sedative and had 150 grams of the same product on top of other meds. This means that it takes a while to leave his system but he is young so it should go faster. Tonight is already a bit more clear minded. The best is that you can not stop laughing, including him. He does not remember anything of what happened in the past couple of days, which is a good thing. He is still  very weak though( he can't stand alone or stay standing up without support) and very tired: he falls asleep very quickly after 5 minutes of "conversation".
The doctors are still trying to understand what could have caused the pneumonia and especially inflammation of the lungs and why it was so fast. More than likely we will never know with certainty but they still want to know in order to identify which drugs to keep giving him.
Tomorrow he should leave the ICU and return to the cancer center for a few days, so far his blood cells and platelets are low. He is clearly neutropenic. We'll see how it evolves, but apparently it's slowly getting better.
In short it was a good day full of events.
Florian can put up yet another battle (and not a little one) to his tally. He confirms once again that he is the strongest !! It won't be tomorrow that he will let this disease beat him.

Hourrah


Lundi matin: arrivee des docteurs a 9h00, debut du tour cette fois-ci.  Peut-etre que la theorie de l'heure de passage des docteurs n'est pas correcte. 

C'était le super big boss de tous les soins intensifs (il y a 3 ou 4 unités), très professoral, en train de questionner une charmante jeune docteur.  Bref après 20 min de palabre en dehors de la chambre avec son équipe, il a demande que l’on retire le respirateur de Florian.  Hourrah !!! On n’y croyait pas.
La copine de Florian, Kirsten était restee la nuit avec lui et il avait été super agite en train de vouloir bouge tout le temps. 
Ils ont retire ce tube en 2 min: plus de respirateur, plus de feeding tube, alors qu’il avait fallu des heures pour les mettre.  Toute la journée, ils ont retire toutes ses connections aux machines, il n’a plus que son mediport pour les antibiotiques. 
Il reparle (ou plutôt marmonne) mais il est encore dans les vapes a cause de tous les sédatifs qu’il a pris.  L’infirmière nous a donne la référence du dosage qu’il a reçu pendant ces 4 jours  (les vieux de 50 ans et plus comprendrons). Pour une côlonoscopie on donne 3 gr de ce sédatif et il avait 150 gr du même produit en plus d’autre sorte.  Cela veut dire que cela met un certain temps pour disparaître.  Mais il est jeune et cela devrait aller plus vite.  Ce soir est déjà plus cohérent.  L’avantage est que l’on n’arrête pas de rire, lui y compris.   Il ne se souvient pas du tout de ce qui s’est passe, ce qui est un avantage.  Il reste très faible (il ne peut pas se lever tout seul et ne sait pas rester debout sans support) et très fatigue : il s’endort très rapidement après 5 min de « conversation ». 

Les médecins cherchent toujours à comprendre ce qui a pu causer la pneumonie et surtout l’inflammation de ses poumons. Et surtout pourquoi cela été si vite.  Plus que probablement on ne saura jamais avec certitude.  Ils veulent le savoir pour identifier les médicaments à continuer.
Demain il devrait quitter les soins intensifs pour retourner au cancer center pour quelques jours : ses globules et plaquettes sont assez bas.  Il est clairement neutropenique.  On verra comment cela évoluera, mais visiblement il est en train de remonter doucement. 

Bref c’est un bon jour plein d’animations. 
Florian peut mettre un bataille (et pas une petite) de plus à son palmarès.  Il nous confirme une fois de plus qu’il est le plus fort !! Ce n’est pas demain qu’il se laissera battre par cette maladie.


Sunday, November 16, 2014

Unexpected return at Strong

And here we are again back on the blog.
First I would like to thank everyone for their support once again we received lots of messages very quickly.
Honestly I would have preferred not having to start but fate decided otherwise. We have a new test that will make us even stronger. We were accustomed to our little routine, and here now we must cope with the reality of the disease that is not always easy to deal with.
Let’s start with a brief summary of Florian's situation in recent months. As you all know, it was back to college, in August. He is in a house with several people who are super friendly. He continued his engineering course in physics.  Of course since he did not have enough to do, he worked in an Irish pub as "busser". For the clueless like me, the "busser" clears tables, takes care of the tables, and ensures that the glasses are filled with water .... In short not too hard work. He did tell me that no he was not hired because of his red hair.
Regarding his chemo, he had it once a month, with mostly lumbar punctures. In addition he has to take daily pills of chemo. Until a month ago, everything was fine. At this time, he began to complain of stomach pain, nausea, and vomiting.
Last week, he had a little temperature and cough, typical of a regular cold. He took drugs for the usual cold and by Friday it was already better. In addition to his doctor told him to stop his chemo pills in order to help curing his digestive problems. It worked pretty well and he was feeling much better, didn’t have any stomach problems either. He studied and took all his exams in the meantime. He had exams the whole week and the last was pretty complicated was on Monday.
Monday night he started having a fever again. Tuesday morning his fever was up to, 39C (102F), he called me at 7h00 in the morning, which was a day off for us (November 11th). Because he already had to go to Srong for a chemo anyway that day, his doctor told him to come anyway to see what he had and he would not have chemo. All day I followed his updates that were not great, he was lying in his bed. But as always, he answer s answers don't worry everything will be fine. The evening was a 40C (104F), and we decided to go to Strong emergencies.
So here we are in the US and the distances between the cities of a region are not the same as Belgium. Therefore 10:00 p.m. I left  towards Buffalo: 2h30 drive. I arrived in record time even though Florian had called me midnight to see where I was, the temperature was still rising. Quickly loaded Florian in the car and half past midnight departure for Rochester, 1 hour trip now. His friends took care of him amazingly well and had prepared his bag with everything he needed to fight the fever. Kudos to all his roommates.
During the trip, I had to turn on the air conditioning in the car all the way per Florian's request to keep him cool. As a reminder to all, we are upstate NY and it has started to get a bit chilly, we had snow yesterday and then today on Tuesday during the day it was 19C (66F).
Anyway I had my nose frozen but we would we not do for our kids. We finally arrived to Rochester at 1h30 am. Like all emergencies, it's the crazy show. Even more with Ebola it's a real interogation to be sure that we haven't travelled abroad.
At this point, Florian couldn't take it anymore, he was exhausted. Fairly quickly we were able to check in: all we had to say was fever (which they took seriously since he did have a 40C (104F) accompanied by leukemia, so a neutropenic fever, we were directed very quickly to the "critical care unit" were we moved him into a separated "room". At this point it's 2:30am, they ran all the possible tests, radio, blood test to determine what it was: atypical pneumonia, distributed in all of the lungs rather than in a localized portion of the lung. They imediaticely gave him antibiotics, painkillers, and paracetamol to lower fever. Florian was exhausted. He was feling pain everywhere: muscles, bones, head. He had pains at his lumbar puncture in his spine.
For my part, I was sitting on my little plastic chair. I have learned that it was possible to sneak a 10 minutes nap without falling down on the side. That day, I had finished the floor and baseboards in a room for the kids, painted the walls, cupboards plus all the usual chores of good mother. Anyway, I had been busy and I got up early. Going to sleep earlier that day would have been appreciated.
Finally around 6:00 am, they tell us they are waiting on a bed to become available in the cancer center where we always go. At 8:00 am, he was transferred to a chamber of transition while waiting until the other one becomes available. His fever was still high and he was shaking uncontrollably.
Wednesday morning, he was finally transferred to a regular room of the cancer center. They took care of him and put all the necessary tests and devices. Florian began having difficulty breathing as if he had asthma. Even talking became difficult. He had to stop at every word. When he coughed, it was like he was choking. They had to give him an oxygen mask but as the day passed by, they had to increase the oxygen concentration. His heart rate was pretty high too. In short, it was as if he had his 200m butterfly swim race constantly. Throughout the day, several doctors and their teams came to see him: haematologist, pulmologue, intensive care, infectious disease,.... They ended up giving him a CAT scan. There was a physician (Florian did not really like him) who said he did not expect at all was that they saw the CAT scan. It was much worse than on the radio. Not very well thought out way of announcing it!!! In the end, it is only one of twenty doctors. Florian was very stressed on Wednesday due to his breathing problems, this announcement did not really help at all. He had multiple sensors to measure his oxygen and heart rate. Whenever he saw that the numbers were not too good or the alarm sounded, he would stress even more meaning he breathing did not improve.
Finally in the evening around 22:00, they decided to transfer him to intensive care and give him a tracheal tube to connect to a respirator. His oxygen level was not high enough and his organs risked not receiving enough oxygen. They speak of acute respiratory distress syndrome (ARDS). It is the body's reaction to an infection. His lungs are filled with inflammation and the exchange of oxygen with the blood wasn’t occurring as well as it should have. Sorry for the somewhat simplistic explanation, medical professional can feel free to points out what is inaccurate.
Around midnight, three doctors pushed his bed throughout the hospital (you can walk for kilometers) to go from the cancer center to the ICU. Usually it is the responsibility of "transportation" service but in this case it was the head of the intensive care unit that decided to escort him.
They took him to his room and got everything ready for intubation. They explained very well to Florian what they would do. Meanwhile we had to leave the room and go wait in a waiting room. Kirsten, Florian’s girlfriend was with me.
After two hours, they came to get us and everything went properly.
He was on a ventilator, it was obviously a shock to see him this way.
Next they wanted to establish a needle in his artery at the wrist to be able to accurately measure the oxygen level in his blood. Again back in the waiting room for 2 hours. It lasted quite a long time and in addition they failed to insert the catheter into the arteries. They tried in both arms. Apparently arteries can contract and make the insertion of the needle very difficult. Since the beginning of Florian’s disease it has been a real challenge to get a line to his veins. Usually you have to ask several people to get there.
At that time it was about 6:30 am Thursday. After my second sleepless night, I quickly went to take a shower and rest for an hour in order to come back to see the doctors around 9:00 am.
So Thursday morning we met the team of pulmonary critical care specialist. All highly skilled people as always, they told us that the state of Florian was serious and that he preferred to put in a coma so he doesn’t waste too much energy by coughing and moving. In fact, he did cough a lot and we could see that the tubes bothered him (as expected). In addition to an anesthetic, they gave him a paralytic drug in order to make sure he didn’t move. This way they can completely control his breathing and Florian is not going against the respirator. They always try to get him in a deep enough sleep just enough so that it does not realize that he is paralyzed because it can be really scary not being able to move if he was conscious. On the other hand they do not want to him to be in too deep of a since it can cause issues in the long term, yet another parameter to control.
After all the explanations, they decided to place the catheter in his artery’s wrist, which they succeeded that day. They also have up another catheter into his carotid artery to view 3 different lines to inject drugs. He already had his Mediport but it has only 2 inputs. I counted them and he was hooked up to 15 tubes!!! There are also electrical wires with sensors for measuring important vital data. They also inserted a feeding tube through his nose. This was once again a whole new operation that lasted all day. The tube was moving in circles in his stomach and was often not in the right place. They retried three times overall. Everytime they also needed a radio scan in order to see where the tube was as they progressed and check that it took the right path.
That's how we met a Hungarian who handled the radio, he had to take at least a ten shots with his mobile device. The guy wanted to talk about the good old Europe that he was missing so much. In short it was good laugh by sharing similar stories of integration of American culture: respect the swimming areas and not go beyond 1 meter of the buoys, or not to wear his Speedo and pose on beach like an Adonis.
In short we had a good laugh.
At 23:30 I went to get Raphael at the Rochester airport. He came directly from Raleigh and will stay for 5 days for now.
That night was pretty quiet compared to the previous two, I finally got to sleep a few hours on the sofa bed is in the room. According to Raphael who was sleeping in a chair Lazy boy style, it seems that I snore and I heard nothing when the helicopter landed just a couple of feet about Florian’s room.
Friday they decreased some drugs that promoted the exchange of oxygen with the blood in the lungs. They also took a bronchoscopy to get fluid in her lungs and analyze them to better understand the type of infection. At the same time they could see what his lungs his lungs looked like, although it doesn’t mean much since it’s inside the lungs and they aren’t able to see much but it didn’t seem too bad. Since they have to do cultures to identify the bacteria or fungus, it may take several days before we have the results but we have been receiving results as they come.
After the Bronchoscopy they decreased the paralyzing drugs in order to let him breath on his own again. He began to be a little more aware and able to move more and more, everything being relative.
During the night he tried to sit up, he had to remember to be sure he does not pull his tube.
Friday we also met a cleaner who came from Burundi and was very happy to speak French. Needless to say he kept coming and cleaning the room very thoroughly.
On Friday evening, Jacques and Raphael stayed with him because I quickly went to Marie-Laure’ sleep over with her tennis team who were already at home. Quite interesting to see the sessions nail polish, salon, karaoke,.... In short they slept very little and the whole basement was a large mattress.
All this time Kirsten had remained at Strong with us for support.
Saturday they mainly stabilized different parameters. They replaced his sedative with one that causes less hallucinations. In the evening he still continued to awaken but only half conscious. It's a bit difficult to know what he understands what he remembered, but we try to communicate as much as possible even if it's just to reassure him and tell him that you are there. Often we ask a question, first you have to be on the set with a yes or no answer but sometimes he replies with a shrug.
Sunday, the doctors came and informed us everything is still going well. I had the confirmation that the later they come around the better the sign. They start with the newcomers, then the most serious and then other cases. They came around noon, so it's a good sign. His cells are a bit low but that did not worry too much. Now his intestines must recover and kick-start back up and everything is good. As I said from the beginning to Florian and Raphael, it’s like plumbing: liquid is injected to increase the pressure, products are injected to reduce the size of the vessels to increase the pressure, the same for the volume of air, and I’ll pass on the details of his stomach contents.
Another interesting fact I just learned today: expanded, the size of the lungs is the same as the size of a basketball court.
I learned a lot about the blood during his treatment for leukemia and now I perfecting my training with regards to lungs and infections. In short I learn more and more every day.

So in summary, after this long sandwich, everything is following its course, it is on the right slope but it will take time, we must remain patient. Baby step as they say here.