Starting the Drug EPI-743

We are starting the drug on Wednesday! Yes, the day before Thanksgiving.  For that reason, we are heading to the CC only for the day since we have a busy weekend here at home.  They have to administer the first drug at the clinic and then we must wait for 4 hours to see if there is an allergic reaction (that is part of the purpose of the study–to record allergic reactions, side effects, etc) and then we will head home as long as everything goes okay.  They will send a supply of the meds with us because we will not have to go back until week 6.  Until then, he will be monitored by our pediatrician.  I am so glad that we only have to go to the clinic 4 times, although the other 3 will be in the heart of winter, at least it will not be every week.  Many people are asking why we want to make the drive in one day for this first visit.  Well, let’s just say we already had lots of Thanksgiving weekend plans in place and on top of it, it’s my husband’s busiest time of year and he has a very full Saturday and Sunday schedule including Saturday Christmas rehearsal,  Saturday church, Sunday church and our first “home tour” Christmas concert Sunday evening. Plus Thursday and Friday are full of family things and I have a 15 page paper to write for my Master’s class (sounds like fun, huh?).  Usually we decorate for Christmas too since this is usually one of the last weekends with some free time before Christmas, but we have decided to decorate in stages this year as our weekend is already very full.  If we don’t put up all our decorations this year, that’s okay.  If we have a tree and that’s it, that’s okay. When your life gets so full, getting things done just isn’t as important as spending time together.  People have made too much of the trappings of Christmas and the gift buying.  I don’t want to stress myself out about Christmas because it’s not about the gifts or the decorations or the parties.   It’s about celebrating Christ’s birth together.  It’s about worshipping together and loving each other.

When you pray for Silas please remember him on this new drug.  Pray that he has a positive response to it and no side effects.

Happy Thanksgiving everyone!

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