Claude with daffodils, March 30, 2005

Jour +47: more of the same

Claude is still at the hospital and still has a fever. All his blood cultures have been negative for a bacterial infection, and the doctors think maybe its viral. He will probably be getting another chest x-ray to see if anything new is happening there.

Jour +45: still at the hospital

Claude is feeling pretty good, but is still feverish in the afternoons and evenings. We are hoping that he can come home soon -- he is finding the hospital food depressing. I'm bringing him Easter ham tomorrow (merci Mme Royer) so that should help.

Jour +43: fever

Claude started a fever this afternoon, so he's back in the hospital tonight. They will do blood cultures, start antibiotics and keep an eye on him during the night. If he's doing OK he can come home tomorrow. I miss him already. The nurses are starting to feel like family and I know they will be taking good care of him (thanks April!).

Jour +41: anniversary

Looking at a calendar yesterday I realized that Claude's day 100 will be May 22, the day before our wedding anniversary. Only 59 days to go!

Jour +40: bronchoscopy news

A culture from Claude's first bronchoscopy (done on March 3) showed that there is CMV in his lungs, so his pneumonia might have a CMV component as well as a probable fungal infection. The good news is that the pneumonia is much better than it was a couple of weeks ago (he isn't feverish, he is coughing less, and the CT scan looks better today than previously). We hope that the ganciclovir he started Friday will help to clear it up completely. Now that it 's confirmed that he has (or had?) a CMV infection, he is getting the ganciclovir three times a day instead of two, and immune globulin has also been added to try to give his immune system a boost. This is pretty taxing because he gets the iv ganciclovir at home at 6am, 2 pm and 10pm and also has to be at the hospital every day from about 9 am to noon for his other meds (fluids, caspofungin and immune globulin) and bloodwork. This will be the schedule for the next couple of weeks at least. Once I recharge the camera batteries (which ran out at Emile's birthday party after two pictures!), I'll take a picture of Claude getting his ganciclovir at home. It's a pretty amateur arrangment (involving coat hangers and picture hooks) but it seems to work . . .

Jour +36: CMV positive

Claude tested positive for CMV this week, so he's started a new twice daily iv medication called ganciclovir. This is an important medication since CMV infections can cause very serious complications after an allogenic BMT, especially in the first 2-3 months. His bronchoscopy went well on Friday -- they were able to take a biopsy and we hope to have some results early next week. He has a new anti-nausea medication so hopefully he will be able to eat a bit more to keep his strength up during the weeks ahead.

Jour +34: bronchoscopy tomorrow

Claude had an ultrasound of his arm today (to see how the blood clot is doing since he is off the anti-coagulants) and tomorrow he has a bronchoscopy to see if they can get any more information about the infection in his lungs. He's doing pretty well but has been quite nauseous for the past two days (is it my cooking??). We had hoped that the nausea would be gone by now . . .

Jour +31: from in-patient to out-patient

Claude moved out of his hospital room today. He's now officially an out-patient and will be staying at home and going to the hospital daily for iv medications. We are happy to have finished this first phase of the treatment, and hope that things keep going smoothly for the next little while. Sounds like the biopsy might not happen and they may just do a bronchoscopy similar to the one he had before . . . . we should know more tomorrow.

Claude at home!

Jour +29: leave of absence

Claude was granted a leave of absence (they call it an "LOA") for the last two nights, so he's been at home for two evenings. It's a nice change from the hospital, but he finds it quite tiring. He will probably stay at the hospital tomorrow night -- there is a good chance he will be having a biopsy of his lung early next week to try to get a better idea what the infection is. The first bronchoscopy wasn't definitive, since they couldn't do a biopsy (he didn't have enough platelets at the time) so they would like to do another now that his counts are good. Although he doesn't have too much of a fever, he is still coughing and the x-rays and CT scans still show something in his right lung (in fact they show more now that he has white blood cells that can cause inflammation). It is important that they know the best way to treat this infection since there is a good chance that he will have to go on more immunosuppressants (if the GVHD starts up soon) and it might not be totally cleared up by then.

Jour +26: still doing well

Claude seems to be getting a bit better every day. He is coughing less, and although he had a bit of a fever last night, his temperature has generally been normal for the last three days. His white blood cell count is at 1.6, hemoglobin at 102 and platelets at 127. If his fever stays down and he has another negative test for c. difficile this weekend, he might be able to come home next week, at least for a while. I think he will soon be strong enough to start updating this blog himself!

Jour +24: Claude Royer unplugged

Claude has been taken off iv fluids, so he is now free to move around without his pole for a couple of hours every day. Although he is officially still in isolation, he was given the OK to leave his room as long as he wears gloves and a gown. He took a walking tour of the fifth floor today, and I think it did him alot of good to be able to get out of his room after 3 weeks! He has a rash on his neck, which we hope isn't the start of GVHD (graft versus host disease, a condition that occurs when the new immune system sees certain of Claude's antigens as "foreign") -- they are keeping a close eye on it. His white blood cell count was 1.3 today.

Jour +23: sitting up

sitting up and eating a snack -- yay!

Jour +22: Saturday, March 5, 2005

Claude's temperature has been pretty much normal for the last 24 hours. He has more appetite and is starting to eat real food again. He is off the oxygen and his breathing is good. They have also removed his pain patch and he seems to be doing OK without it. Hopefully he will get stronger day by day and be ready for the challenges ahead as we move towards our new milestone (day 100). . .

Jour +21: the neutrophils have arrived

Claude's white blood cell count is above 1 today, and his neutrophils (the white cells that fight infection) are at 0.59; this is at a level where they should help fight the lung infection and sinus infection.

Claude was feeling pretty bad yesterday and was having some trouble breathing. He is still on oxygen today, but is breathing much better. His fever is also lower today. The brochoscopy showed an infection, perhaps fungal. They took some samples that are being cultured. This won't really affect the managment though, since he is already getting both antifungal and antibiotics. He's retaining fluid (his feet are really swollen) and this is also probably the cause of some of his difficulty breathing (fluid in the lungs). He's been getting an iv medication for this and it seems to be helping.

Jour +19: good news and bad news

The good news is that Claude's white blood cell count has started the long climb upwards . . . He is at 0.5 today (he has been at 0.1-0.2 for the past two weeks). This means that his new immune system is just starting to get going.

The bad news is that he has started a fever again and the bronchoscopy is back on for tomorrow. He is very nauseous and uncomfortable today and is still coughing alot.

Jour +18: much the same

Not much to report today. Claude is still feeling very sick and weak and we are just hoping that things start to turn around soon. The nurses are really wonderful and are taking good care of him. He is not able to eat, but at least he can still keep down the "liquid meal replacements" most of the time. He has lost about 7 kg since February 10, but he had managed to put on some extra weight before the transplant, so he is still looking fairly healthy. His temperature remains normal and we are thankful for that.