One week ago tonight, Derek spent his first night in the Lucile Packard Children's Hospital at Stanford. He began the clinical trial on Tuesday with the first dose of the study drug Selinexor. In the last week, there haven't been
any dramatic changes, though his abdominal pain disappeared completely, the swelling around his left eye has lessened, and his left cheek mass has reduced in size slightly. He has developed numbness on the right side of his face that is irritating. They didn't expect any immediate changes, though they did expect some nausea, loss of appetite, drowsiness, and altered electrolytes. He has experienced those symptoms very mildly. He will receive dose three of Selinexor tomorrow. Overall, he has tolerated the medications well.
Also tomorrow, they will be placing a Hickman central line in his chest. Placing central lines in Derek has proven difficult in the past, so I covet your prayers that the procedure will go well and that they will easily succeed. Because he has had a portacath and three previous PICC lines, there is a bit of scar tissue in his veins that may present some challenges.
In the past week, we have experienced a lot of homesickness. It is definitely a challenge to be where we know almost no one and to be separated as a family. Thankfully, Derek has an iPad, and my nephew loaned our family his iPad so we can FaceTime frequently. Various friends texted video greetings and pictures over the weekend that helped fill the voids. We also had some visits from two friends that have been enjoyable.
Another challenge that always exists for us with any hospital admission is the lack of outside time. We enjoy the outdoors so much, and being stuck in a hospital room is hard. Over the last few days, we had a little visitor outside our window that gave us a taste of nature even in a hospital room. A little black squirrel likes to sit on the wooden fence and preen, nap, and stretch. We've enjoyed watching his cuteness and hope he returns often.
Thank you all for your continued prayers. Knowing you are lifting us up in this way is so meaningful.
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