Phoebe has 20 enlarged nodes in her neck. This is the first time that her entire neck has been affected and it is also the first time this many have been affected at one time.
The right side of her neck, which is usually the only affected side, has the largest node at 1.7 cm. But the left side has a node that is very close in size at 1.4 cm. Both of these are just tenths of a centimeter away from the size of the lymph node that was surgically removed in 2013.
Her immunologist said it is clearly evident that things have progressed to the point that we should start the immunosuppressant Sirolimus. That instead of Phoebe holding to her "normal", things are getting worse.
He went over the side effects to watch for, what he hopes the medication will do, and the schedule of blood monitoring that we will need to do while she is on this medication. And while at first glance the side effects gave me reason to pause, they are the same whether she is on the medication or not. We still have to watch for the same signs and symptoms, she still has a risk for infection, and she still has an increased risk of cancer.
But hopefully, just hopefully, this medicine will get these nodes to go back down to normal size and keep new ones from growing, hopefully she will not have the recurrent swelling, pain and fevers, and hopefully she starts to feel better all around.
We were supposed to start the medication today, but this afternoon we received a phone call from the pharmacy telling us that the medication needed to be ordered and that it would be ready tomorrow.
In a big way I am glad about that because I am off from nursing school on Thursdays, and I do want to stay with her for her first few days on this medicine to make sure she handles it ok and doesn't have any adverse side effects.