Antibody Therapy - Day 2

We are two days into Cameron's first round of Immunotherapy and so far he has tolerated it reasonably well. I was warned that the medication that he is receiving will make him feel awful, flu-like with a lot of pain.  What they didn't warn me about was that my child would look like a spotted blow fish after a couple of hours of treatment.  One of the common side effects is a rash, Cameron has taken it to a whole new level.  The poor child is covered in itchy red spots that subside with the help of an antihistamine, but reappear long before his next antihistamine dose is due.  He is also retaining quite a lot of fluid, he looks like a puffy little marshmellow and I really have to restrain myself from pinching his chunky little cheeks! 

In all seriousness though, he does seem to be in pain, but it appears to be well managed by his continuous morphine pump (PCA) and nerve pain medication.  He slept from 10am yesterday until about 8am this morning, only waking occasionally to take a few sips of formula and then drifting off again.  The sleep seems to be getting him through this and his regular antihistamine doses really help keep him sedated.  When he woke up this morning, he told me that he had lots of "owies" and asked me to kiss his toes to make them feel better.

Although some bloating is normal, he is being watched very carefully to make sure that he doesn't retain too much fluid.  Excessive fluid retention can affect his lungs which can be extremely serious.  His blood pressure is also being closely monitored as the medication can cause it to drop dangerously low.  Thank goodness we have some fantastic nurses and they are very much on top of everything.  Cameron's vitals are taken every 15 minutes for the first hour after he starts the medication and then every hour after that until the infusion is completed. 

The recommended time frame to administer his medication is over 10 hours (every day for 4 days), however, if for some reason he has a severe reaction to the medication, the infusion can be paused or slowed down to go in over 20 hours. Whatever is left over after the 20 hours is up can not be administered. Cameron was able to stay on course yesterday and got all of his medicine in the 10 hour time frame.

He seems to be doing just as well today, and is currently napping peacefully.  Hoping that the rest of our stay will continue to run smoothly.