We went back up to MDA today to sign consents and start Kev’s
new treatment – a combo of Dasatinib and valproic acid (Depakote). Dasatinib is an approved Leukemia chemo and Depakote is a common anti-seizure medication. The study investigates the use of the chemo with high doses of Depakote. There is preliminary evidence that the Depakote enhances the effectiveness of the chemo drugs. (Luckily the insurance company agreed to cover costs - $7000/month!) Kev has taken Depakote before (for its anti-consultant properties) back when he was having seizures. The protocol is very simple – both drugs are oral meds he can self administer. He needs to get blood checks weekly, but we can do them locally at St. John’s. Once a month he needs to go into MDA for an evaluation and every 8 weeks he goes in for scanning. If everything goes well we will not need to travel back to MDA for another 4 weeks!
The anxiety problems seem to be all in the past. He now has
Ativan to use as needed and he claims it works great – makes him feel very relaxed and peaceful.
Kev’s folks came out to stay with us for the past week, which allowed me a few days off to watch the kids in their big sailing regatta of the summer. It was really nice to get out and spend some time in the “normal” world. Although it was somewhat bittersweet – usually I’d be on the water with Kev. He always enjoyed watching them sail and overanalyzing their tactical decisions. But I took a bunch of photos and the kids shared the stories each night. Here are a couple of my favorite pics:
Nick hiking out
Kelden relaxing between races
Posts
2 comments:
Great pics and I'm glad you guys have a solid forward plan. I do love the way you described Kev's last experience with Depakote as part of his "anti-consultant" meds. Intentional error or a Freudian slip? ;-)
He is always over-analyzing things. Drives his few friends crazy!
And those scars on his head, some of those are almost 30 years old. I know because I put them there!
tuckerkeith@hotmail.com
Post a Comment