Today is Day +133 and I just realized that I haven’t updated the blog since Day +97!! Wow. Life has been super busy this summer, which is a good thing. I have managed to keep everyone updated about Kevin on Facebook…It’s so much easier to post a status than it is to post a blog, but I also want to keep the blog updated too. So here’s an update…

To sum it up… Kevin is doing well despite the fact that he is still dealing with post-transplant complications. The doctors have continuously reduced his Prednisone dose. He is now down to 30mg/day as of Tuesday and the donor cells have not become really aggressive again. However, the doctors can still tell that GvHD is still a factor from his blood results.

Kevin still has diabetes and managing insulin doses can be quite challenging. There are so many factors that affect his blood sugar. We are hoping that Prednisone is the main factor and he will no longer be a diabetic once he is off of it. However, we haven’t seen a drastic change in his blood sugars yet. His insulin doses are still pretty massive. He has had some lows, but not a significant amount and most of them can be explained. We got him a Glucagon in case of a blood sugar low emergency. This way, if he does lose consciousness, I or who ever is with him can inject him.

Good news, some more medications have been stopped. However, he still takes many. Here is an updated list for our fellow BMT followers:

Tacrolimus (Prograf) – 2mg Daily –  Immunosuppressant to prevent rejection.

Acyclovir – 1600mg Daily – To prevent viral infections.

Amlodipine – 5mg Daily – Treatment for high blood pressure.

Pantoprazole – 40mg Daily – To help stomach/heartburn.

Prednisone – 40mg Daily – To manage GvHD.

Posanol – 15mls Daily – To prevent fungal/mold infections.

Sulfatrim – 1600/320mg (It’s a double drug) Every Monday & Thursday to prevent bacterial infections.

Insulin Aspart (Novo Rapid) – Base of 30 Units at breakfast, lunch and supper PLUS corrections dose.

Insulin Glargine (Lantus) – 45 Units at bedtime.

Ativan – 1mg PRN – To help with anxiety and sleep. (He has stopped taking this on his own and we are going to try Melatonin at night)

Hydromorphone – 2mg, 4mg or 9mg PRN – For pain.

 

Loperamide -2mg PRN – For diarrhea.

 

Some more awesome news, Kevin has his Hickman Line removed on Tuesday! After a 5 month relationship, Kevin had to part with his little friend.

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The doctors were satisfied with Kevin’s progress and the Hickman can always be re-installed if need be. The only reason he would need it again is if he requires aggressive treatment for GvHD or numerous blood transfusions. 

Kevin also had another blood test to make sure his CML (Chronic Myeloid Leukemia) is still undetectable on Tuesday before his Hickman Line removal surgery. These results take a few weeks. Unfortunately he still needs to be seen in the Ottawa BMT Clinic every 3 weeks, but hopefully he will graduate to monthly appointments soon, once he is weaned off that nasty Prednisone. Then they can start weaning him off of some of the other medications! It all depends on how his cells respond to the reduction of steroids. So far, so good!

Here is a recent picture of Kevin from our DAY +100 celebrations at the lake… He was enjoying our friends’ adorable little baby girl. It was an awesome day!

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Summer is a little bit challenging for Kevin too. The heat is really hard for him to handle some days and he LOVES it when I’m constantly asking him if he is okay. He also loves it when I’m constantly asking him if he has applied and re-applied enough sunscreen. But other than that, we are enjoying our summer and looking forward to our new GRAND MAN who should arrive in about 5.5 weeks! I never thought I would look forward to being a Nana, but OMG… I’m so excited I could BURST!

We hope that life is awesome for you and yours! Take care and I will update again soon!

Thanks for stopping by!

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