Hey all! Just a quickie update on me Loverman! Today is DAY +61!!! Can you believe it?!
Kevin had his weekly follow-up at the BMT Clinic in Ottawa today. The appointment was at 9:45am, which meant that we really needed to be there for 8:45am for blood work. So my GOLDEN PLAN was to go to bed early last night, get up this morning at 5:30am and be ready to hit the road for 6:30am. Well, it just so happens that Kevin doesn’t always snore like a warthog, but when he does, it’s the night I plan to go to bed early and get a good night’s sleep because I need to get up at 5:30am! Like I’m serious, you guys. Kevin doesn’t snore usually… but this is the second night in the last week that I have wanted to smother him with a pillow! I can’t tell you when I finally fell asleep, but the last time I recall seeing on the TV was 1:36am. Holy frig. Snoring is usually my job! I hope this isn’t something he adopted from his donor! LOL
HA! *slaps knee*!!
Anyhoooo… This morning, I clearly remember my alarm going off…I clearly remember waking up frantically looking for my phone to turn it off and get up… THEN the next thing I know, Kevin is waking me up telling me it’s 6 friggin 25!!! So I bolted out of bed, got ready, packed the cooler and all his medical stuff up in a record 20 min! I felt so bad because his brother was at our house at 6:30am, right on the dot. But, shit happens. I suffered because I had to WAIT until the ON ROUTE stop for my first cup of coffee!
The appointment went well. Kevin’s GvHD of the skin has cleared up significantly in the last week. It can still get pretty red, but it’s not even half as bad as it was. The doctor lowered the Prednisone again, but only by 25mg this time. So he will take 125mg/ day for at least the next week and we will see what happens. Hopefully the lower dose with help the pretty insane fluid retention. He is still gaining up to 13lbs of fluid from morning until night. We did learn that the GvHD is attacking and irritating his liver somewhat. However, it’s not significant at this point. Hopefully the continued steroids will take care of it. The GvHD may also be attacking his intestine a bit, but again, it’s not significant at all.
Kevin’s platelet count has taken a bit of a nosedive for some reason, so he is bruising pretty easily. The count was 168 on April 10th and it was down to 86 on April 21st. We don’t know what the count is today because the results were not ready for the appointment. I’m not going to talk/type about how much that bothers me, because you’ve heard it enough. I did receive an email from Patient Advocacy stating that they are considering changing the way the BMT/Cancer patients’ blood work is done and my recommendation has been sent to the people that can possibly initiate that change in the future.
The doctor did add another NEW prescription to his regimen, Septra. This drug is an antibiotic that will help to prevent “Pneumocystis jiroveci pneumonia”. The doctor also ordered 1) a lung test, to make sure the donor cells are not attacking his lungs, and 2) a bone density test, to check his bones after being on high-dose steroids for so long. Also, today Kevin had blood drawn for a PCR (polymerase chain reaction) test for CML. So this test will show if all of the leukemia has been destroyed. *Fingers crossed!!!* We will not get these results for up to a month… they take a while to process in Toronto.
Despite the lower dose of Prednisone and the increase in insulin, Kevin’s blood sugar counts are still all over the map. However, he has finally had some normal readings this week, so that is a good thing.
Basically we are still on “wait and watch” mode for at least the next “several weeks”. GvHD can be unpredictable and so can a bone marrow transplant patient’s body. In the meantime, Kevin has been working on fighting his extreme fatigue by trying to be a little bit more active. So we have gone for some short walks the last few days. I know he struggles more than he will ever admit and I am proud of how awesome he is still doing! As always, the plan is to KEEP GOING! =) Thanks for stopping by!