Jour +17: no fever!

Sorry not to have posted recently. Claude hasn't had a fever for 3 days, and the new theory is that the fever may have been from the c. difficile not a lung infection. The doctors decided not to do a bronchoscopy today; we were relieved about that because it sounded like an unpleasant procedure, with some risks involved. He is feeling nauseous and weak today and hasn't been able to eat or drink much. He's getting the second dose of an iv anti-fungal medication tomorrow morning. The side effects include violent trembling, teeth chattering, etc. The first dose was during the night, so I didn't witness the dramatic effects, but it was loud enough (bed shaking, teeth rattling) that Claude's next door neighbour paged a nurse! Demerol stops the shaking pretty quickly, and this time he will be more prepared for the symptoms and will ask for it sooner . . . We are still waiting for his white blood cell count to start coming back up -- day 21 still seems like a long way off.

Jour +14: still waiting . . .

The CT scan showed "something brewing" in the lungs, which might explain Claude's ongoing fever and cough. Hopefully the combination of meds he is taking will clear it up. In fact, he's feeling pretty good today and his fever seems to have gone down a little.

being rolled into the doughnut for a CT scan

More x-rays!

Jour +13: the west wing

Claude is ensconced in his new room in the west wing. It is a step up from his previous dwelling -- he has his own refrigerator! Unfortunately he isn't taking full advantage of it since he has very little appetite right now. I keep bringing things I think he would like, but he hasn't eaten any of them yet . . . The combination of nausea and fever is getting him down a bit, but we are hoping that he will start feeling better within a week. He will be starting an intravenous anti-fungal medication since the antibiotics don't seem to be bringing his fever down. Apparently the medication looks like a big bag of orange juice. He is also going to be getting a CT scan of his chest (x-rays done previously didn't show anything) and an ultrasound of his abdomen. As well as the regular crowd (shown in the photos below), Claude had a visit from a specialist in infectious diseases today.

Thumbs up!

Claude consulting with BMT doctor and pharmacist . . .

dressed and ready to enter Claude's room!

Jour +11: Five West Revisited

Claude is supposed to be moving to the other end of the corridor tonight, back to five west where he was for his initial treatments in November.

He had his last dose of methotrexate today and also got blood and platelets. He is receiving so many blood products that we are constantly thankful to those who have given blood. Once he has "morphed" (I'm not sure of the correct technical term!) to his donor's immune system, his blood type will be AB+ (he used to be A-). Amazing that he will actually be changing blood groups. Before the transplant, they had to do a plasma exchange (they took all the plasma out of his blood and gave him new stuff) to get rid of his B antibodies. We didn't have a chance to post anything about this procedure, but Claude has some good pictures of the big plastic bag with all his old plasma.

The doctors don't seem too worried about the c. difficile, and think it should clear up in a couple of weeks. He's still in isolation and the nurses and doctors who enter his room wear gloves and gowns.

Claude's 40th (and Emile's 3rd) birthday, two years ago today!

Jour +10: c'est difficile . . .

Happy Birthday Claude!

Well, Claude is not feeling quite as good today . . . we found out that he has clostridium difficile (C. difficile). Bad news, but at least now he has started the right antibiotics so hopefully it will clear up soon. I guess when you don't have an immune system its pretty easy to pick up all sorts of things like this. He is in isolation; I'm not sure for how long. . . He is still running a low grade fever and also got magnesium today, so all in all is feeling pretty weak. Hopefully tomorrow will be better . . . .

is that why those catheters keep slipping out??

Jour +8: a room with a view

Welcome to room 5121, Claude Royer in residence . . . beautiful view, luxury bedding and gourmet food (yum yum, merci Diane!). In the midst of neutropenia, Claude is feeling very well. He got "the patch" yesterday. As well as relieving pain, it seems to make him very happy! More news soon.

a lovely view

deluxe bedding

gourmet food

claude in a black hat

and he's still smiling

Jour +6: back in the hospital

Claude is still feeling pretty good, but was admitted to hospital this afternoon. Partly to avoid the sick kids at home (Pascal has a fever as well as the cough) and partly so they can keep an eye on his arm. I spoke to Claude just now, and he has developed a low grade fever so I'm glad he is there . . . .they did say fevers would start around day +7, so he's still evolving according to plan!! Things are supposed to start looking up around day 21, so we only have 14 days to go! Today he got more methotrexate, fluids, platelets and magnesium. . .. not to mention his regular cocktail of pills (antiviral, antifungal, antibiotic, antirejection . . . . pretty much anti-everything). The magnesium gave him terrible muscle pain in his legs, but he got some painkillers and is OK now. His parents brought him dinner tonight and his room has a nice view. I'll take a camera to the hospital tomorrow so you can see him in situ. . .

Jour +5: almost zero

Hi,
I'm posting for Claude, since he isn't feeling too well today. His white blood cell count is almost at zero, and his platelets are on the way down too. No fever yet, which is great . . . we are washing our hands all the time . . . Emile and Pascal both have a bad cough but so far Claude hasn't got it. When he's not at the hospital, Claude mostly camps out in the bedroom where we put a comfy chair for resting, reading or watching movies. He is focussing his energy on keeping as well as he can during the next couple of weeks (after which his counts should start to go back up once the new bone marrow begins to make cells). We go to the hospital every morning for blood work and medications. He hasn't needed platelets or blood yet, but likely will in the next few days. Unfortunately he has another blood clot from his most recent (third!!) catheter and his arm is really sore. Well, I guess that's most of the news. I had thought of posting a picture, but since this is the first time I've tried to add a post, I think I won't be too ambitious. Maybe next time.
Kate

Jour +3: Toujours suivant la recette

La recette est suivie à la lettre, 2ième petite chimio et mes comptes de globules sanguins sont au niveau souhaité (bas!).



Yellow methotrexate... another round for today.

Jour +1: Gentle Downward Slope

The conditioning and the transplant are done... this was the easy part! Now I will start the gentle slope down into neutropenia, where my immune system will dive down to zero in order for the new one to pick up. Fatigue is already setting in and fevers are to be expected later. I foresee one liner postings from me in the near future!

To remove my old immune system even faster, I was was given a small amount of chemo (methotrexate) today, yellow stuff that leaves me quite tired. I am expecting more of this Monday.

Jour 0: La Nocturne

J'arrive en début de soirée à l Hôpital pour la finale, la transplantation de moelle osseuse!

Après un dernier 'bain de radiation' , me voilà prêt à recevoir 1.3 L d'un liquide rouge qui ressemble à un sang épais. Moins de 24 heures auparvant, mon donneur anonyme, (un 'gros gars' et ne m'en dira pas plus à son propos) s'est vu extraire tout ça de la hanche, 18 millions de cellules au mL, le tout sous anésthésie! Je soupçonne un donneur européen, vu l'heure d'arrivée du coli à l'hôpital...

L'opération se fait comme une transfusion, mais dure plus de 6 heures à cause du grand volume a passer. On célèbre d'abord ce nouvelle anniversaire avec le personel infirmier et Kate qui m'a apporté un cadeau surprise...

Je me sens bientôt gonfler à surcapacitié avec ce litre de substance supplémentaire dans les veines. On repart pour à la maison à 0h45 quand tout est terminé... et faute de lit pour me garder! Ce fut certainement une consultation externe très tardive.

An anonymous gift... for me!

C'est un gros sac de moelle à couler dans mes veines

Jour -2 : Irradiation Totale

À 7h30 du matin, on me prépare pour une première dose de radiation aux rayons X de très haute énergie.

Me lever tôt pour me rendre à l'hôpital n'était pas un problème. La chimio de la veille exigeait que je me lève à toute les heures 'pour élimimer' les poisons résiduels et avaler beaucoup de liquide.. J'ai tenu la maison en éveil avec tout ce vas et vient.

Sur un petit radeau-lit, on ma couché et roulé deux fois sous le regard de la machine infernale, pour bien me rôtir uniformémment. Tout ça n'a duré que 30 mins et je n'en vraiement rien ressenti. Stérilité sans douleur en boni!

Ce qui allait vraiment faire ma journée, c'est l'injection à l'extrait de lapin qu'on allait me faire passer plus tard (plus la dessus plus tard).

La machine infernale

Krishna prêt à être irradié

Des petits masques de plomb protégerons mes poumons.

Jour -3 : Chemo again

We have entered the conditioning regimen, which consists of:

1. killing the leukemia cells in my marrow
2. destroying my immune system to allow the transplanted marrow from the donnor to thrive in my body

So it is a heavy dose of chemo that has kickstarted the process (cyclophosphamide 60 mg/kg/day over yesterday and today). This chemo is an old friend of mine, encountered in my first Hyper-CVAD cycles that I endured 2 months ago and which helped me kill off the bulk of the leukemia. I do not expect too much trouble from it.

What really scares me is the Total Body Irradiation (TBI) which follows tomorrow, to complete the conditioning. A large dose of 13 Grays fractionned over 3 days. It is almost painless at the time, I am told, but lots of possible secondary effects are to be expected in the short and the long term. I plan to upload some pictures of the procedure here.

Jour -4: Le décompte commence

J'ammorce ce blogue à la veille d'une transplantation de moelle osseuse, une grosse étape dans le traitement de ma leucémie (LLA) diagnostiquée en novembre.

C'est un véritable décompte, puisque qu'aujourd'hui nous sommes à 4 jours de la transplantation, qui est le "jour zéro" d'un nouveau départ.