Optomistic News about the BK Virus

Last night Daniel's nurse, Amy, called. They are changing some of Daniel's meds again. He is going to start a medicine called leflutamide. It fights the BK Virus! Apparently when I asked about 'is there a cure for the BKV' and the answer was no, they assumed I was talking about the tumor part of it. I was just talking about his body fighting the virus before it gets that far. So we will be starting it, early next week (it's not a common drug, so our pharmacy probably has to order it). We give him high doses for 5 days, drop down his Cell-Cept for those 5 days (that is the anti-rejection medicine) and then after those 5 days he stops the Cell-Cept and we lower the dose of laflutamide. The major side effect of laflutamide is that it damages the liver. So we will have weekly lab draws while Daniel is on the drug monitoring his liver counts, laflutimide level, white blood cell and of course, creatinine levels. So I am VERY excited about that! This drug is really new (last 4 years) and so Stanford has been monitoring the BKV for a while. It is one of the 3 common viruses that surface after transplant. Amy said with this drug and the aggressive attack they take, they have a high success rate of 'killing' it! Laflutamide also acts as an anti-rejection drug, too. So we don't have to worry about that. Anyhow, we will be doing Daniel's biopsy soon (first 2 weeks of May sometime) and we pray the BKV will not show up in his kidney tissue.
Daniel's tonsils are healing good. The first 6 days were VERY frustrating and nerve racking! He wouldn't eat ANYTHING (otter pops, ice cream, etc) or DRINK anything! That was more frustrating to me! I would have to hook him up to his pump, which limited his movement. Then I'd try bolus feeding him (I'd hand pump liquids in his tube) and that would cause stomach cramps and diarrhea. I think it was a shock on his digestive track. Yesterday I bolused 30 mLs (1 ounce) every 15 minutes. I am SO ready for this week to be over! Kevin's been in Vegas for 2 days and I am ready for some help! :-) He comes home late tonight.
On another note, Denise and her kids came over last night and brought the movie Bolt with them. We did our movie night picnic with super nachos and watched a few movies. Bolt is a REALLY cute and funny movie! I would highly suggest it! Thanks, Denise and family, for adding some fun into this week! Have a great weekend!