Hello everyone! We are now just over 6 months post BMT (Day +196) and it’s been way too long since my last blog update! Life has been crazy busy for us!

Kevin has been doing relatively well since my last update. Here is a quick low-down of what has happened since my last update on July 9th, 2015:

He had some emergent kidney issues that have somewhat resolved with a lot of drinking water and Gatorade. However, his creatinine levels were still slightly elevated at his last appointment. I guess this is to be expected with all of the insanity and toxicity (from long-term Prednisone use) going on in his body. At this time, the doctors are satisfied and no intervention is needed.

He also had some blood pressure issues and his BP medication, Amlodipine, had to be doubled. As a result of the pressure issues, he also had to start a new medication, Metoprolol, a beta-blocker that slows down his heart. All of this was a little disappointing because Kevin never had any blood pressure issues prior to transplant. There is still hope that once he is off all of the post-transplant meds, his pressure will return to normal.

He is still dealing with diabetes, but his insulin needs have decreased significantly and we hope that is a good sign that everything will return to normal once he is finally weaned off of Prednisone.

As of Monday of this week, Kevin has been weaned down to 5mg of Prednisone daily! This is a significant achievement for a number of reasons. There are so many complications associated with long-term Prednisone use and we also need to worry about the GvHD coming back with avengance. His last blood tests showed that his liver is still being affected by GvHD, but it’s mild. His stomach has also been a little bit iffy, but so far, so good. You just can’t sweat the small stuff in this situation!

Some great news, Kevin was weaned off another medication, Posanol, this week. Posanol is an anti-fungal medication that was necessary when Kevin was on higher doses of Prednisone and Tacrolimus. The doctor said he may have to go back on it, if for some reason the Prednisone and Tacro needs to be increased again. He also stopped taking Ativan a few weeks ago and now takes Melatonin when he has an exceptionally hard time sleeping at night.

Here is a current list of Kevin’s meds:

Tacrolimus (Prograf) – 1 mg Daily (0.5mg taken AM & PM)–Immunosuppressant to prevent rejection.

Acyclovir – 1600mg Daily (800mg taken AM & PM) – To prevent viral infections.

Amlodipine – 10mg Daily (PM) – Treatment for high blood pressure.

Metoprolol – 25mg Daily (12.5mg taken AM & PM) – Treatment for high blood pressure.

Pantoprazole – 40mg Daily (MID) – To help stomach/heartburn.

Prednisone – 5mg Daily (AM)– To manage GvHD.

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

Vitamin D – 25 mcg Daily

Insulin Aspart (Novo Rapid) – Base of 7 Units at breakfast, lunch and supper PLUS corrections dose.

Insulin Glargine – 20 Units at bedtime.

Hydromorphone – 4mg PRN – For pain.

Loperamide -2mg PRN – For diarrhea.

Melatonin – 5mg PRN- To help with sleep

The best thing that happened since my last update….. *drum roll*……. WE ARE NOW GRANDPARENTS to a precious little baby boy, Breyson! He was born on August 21, 2015 and has filled our life with indescribable JOY! I can’t even handle how adorable he is!!

 

Today Kevin says that he can really feel the effects from the Prednisone decrease. He is shaky and is having some stomach issues. We are watching closely for skin GvHD and any other red flags. So please keep Kevin in your positive thoughts!! =)

September is Blood Cancer and Childhood Cancer awareness month and the main cancers that children battle are blood cancer. Please make sure that you donate blood, if you can and get on the stem cell registry, if you can. Many blood cancer patients rely on blood and stem cell donations to survive. If you would like more information, please visit: http://bloodyawesomejourney.com/how-to-donate-stem-cells-and-blood/ You can also take our Bloody Awesome Challenge!

Blood Cancer Awareness

Thanks for stopping by and for all of the love and support we have received over the last 2 years! Science can only do so much and we couldn’t get though all of this without you! xoxoxo

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