The naproxen doesn't even help take away her pain anymore. It never decreased her swelling, but it used to always relieve her pain.
Yesterday we went to her pediatrician, and I must say, there is nothing worse than hearing "I don't know". Something clearly triggered this flip, but they don't know what caused it, how long it will last, or how bad it will get.
What they do know is she is swollen, pale, in pain, her eyes are sunken in and both sides of her necks have growths. The situation was described as a train starting to barrel down the tracks with no known way to slow it down or stop it.
Since her immunologist usually handles all her the labs and is the main doctor in charge of her care, the pediatrician didn't want to draw labs and not draw all the right ones. So today, we went to her immunologist.
Her immunologist ordered a bunch of labs to check her her liver and kidney functions, her CBC, her platelets and a bunch of other things. He also ordered an ultrasound so we can get an idea of the size and amount of growing nodes in her neck...especially since they have been there for many months and as her last biopsy proved...just because they look and feel small on palpation, doesn't mean they actually are.
We also discussed a medication that her immunologist at CHOP suggested. Our local immunologist was hoping to have a specific diagnosis and better plan for treatment, but he doesn't like the way Phoebe looks or that things are getting worse rather than being "her stable/normal".
So the labs were drawn today and she goes for her ultrasound on Monday. Pending the results not showing anything alarming, she should be starting treatment on Monday afternoon/early evening.