Jour +74: This Hour has 22 Minutes

Claude has had two negative tests for CMV, so he is off the ganciclovir. He is also tapering off the tacrolimus (and we hope this won't be the start of GVHD, which he hasn't really had at all so far). He is getting some of his energy back. He is watching a bit of TV, and discovered that there are reruns of "This Hour has 22 Minutes" every day around lunch time. I heard him laughing out loud for the first time in a long time -- I'm sure its good for him.

Other news -- Emile has scarlet fever!! He started antibiotics yesterday and is already feeling better. He has been enjoying watching movies on TV for most of the day and eating pudding and ice-cream whenever he wants. He likes telling people that he has "scarlatine". However all good things come to an end and I think he will be back at school by the end of the week. Claude is on antibiotics too, as a preventive measure, and is staying with his parents for a couple of days to avoid the germs at home.

Jour +66: no news is good news

Hi,
I havn't posted in a while since there hasn't been too much news here. Claude is much the same, although I think he is eating a bit better and feeling a bit stronger than last week. We were told that it will probably be a couple of months before he starts to feel significantly better, and probably a year before he is at 80-90% of his former energy (of course this is barring any infections, graft problems or other complications . . . ). We didn't get the results from the lastest CMV test yet . . . we are hoping that the level of the virus is low enough that he can stop the ganciclovir soon (it is a medication that one nurse called "a kick in the gut"). Sometime soon he will also start to be weaned off the tacrolimus (anti-rejection drug). We walked all the way to the museum of civilization today and sat on a bench in the sun for a while.

Jour +61: discharged!

Claude has been at home since Monday, with no visits to the hospital planned until Friday! He has switched to a pill form of ganciclovir and for now is off iv medications completely! He will be going to the clinic Friday for blood work and will also get the results of the CMV test done on Monday. If things continue to go well, he will only have to go back to the clinic once or twice a week. Of course we are very happy with this news, but I think Claude is a little disappointed that he isn't recovering as quickly as he hoped. He is still very weak and has to rest alot during the day. Hopefully some of his energy will start to come back in the next couple of weeks . . . its an awfully long journey.

Jour +56: bye bye picc line

The good news: Claude hasn't had a fever in over 24 hours and his recent CT scan looked really good. He has stopped the caspofungin and antibiotics and is on a lower dose of ganciclovir. He has the weekend off -- no iv medications and no visits to the hospital until Monday!!

The bad news: Claude blacked out in the hospital washroom yesterday. He didn't hurt himself, but his picc line (the catheter used to deliver iv medications) got pulled out when he fell. He has a regular saline lock for now and may not need another catheter since hopefully he will be off iv meds soon.

Jour +52: still feverish

Claude remains at home, but still has a fever. It seemed to be going down for a few days, but its back up to 39 oC tonight. He is tired and nauseous. He will probably be getting a CT scan of his lungs in the next few days, just to make sure they are clearing up as expected, and will probably also see the infectious diseases specialist again.

Jour +49: home!

Claude was allowed to return home this afternoon! Even though he still has a fever, the doctors feel that he is doing well enough to be at home. The x-ray of his lungs looked really good and all the blood cultures so far have been negative. Hopefully the fever will disappear soon. He is finished his 10 days of immune globulin, so he has one less iv medication to take. The ganciclovir has been reduced to twice a day for now because his kidneys aren't working as efficiently as they should. The ganciclovir causes immuno-suppression so Claude's blood counts aren't quite as good. He got blood today because his hemoglobin had dropped to 83.

He has started making a latch hook rug as a relaxing pastime!

We would like to thank everyone at Nortel who donated blood at the recent blood drive in Claude's honour. It means alot to us, and we are looking forward to seeing all the cards that were collected. Knowing that his friends and colleagues are thinking of him really helps Claude to stay positive and focussed on his recovery.