We had some in-depth detailed discussions regarding the dosing and even got the master written instructions. Doug wanted counts in two weeks to see what the "correct" dosing would do to Emma's counts.
For completely unrelated reasons, we had her prescriptions sent to a pharmacy close to home rather than the hospital pharmacy. Newly written and sent to a different location. The bottles still don't match Doug's master sheet, and her Dexamethasone was short by 2 doses.
Each cancer is treated differently, and each phase (induction; consolidation; delayed intensification 1; interim maintenance; delayed intensification 2; and maintenance) contains a different cocktail of drugs. Those cocktails are then adjusted for the child's height, age, and weight and then can be adjusted or even substituted based on the child's reaction. Doses go up and down depending on several factors, and there are IV meds, intrathecal meds, oral meds. There are chemotherapy drugs and then drugs to counter the side effects of the chemo. They can affect levels of so many different proteins and blood cells and other bodily markers.
There are drugs that should be taken with food and drugs that absolutely cannot be taken with food. Some are taken twice daily two days a week. Some are daily. Some are weekly. Some are weekly except weeks when the child gets another drug. Some are monthly. Some are daily, but the dose varies one or two days.
It is wildly complex. I'm not making any of that up - it's Emma's real protocol right now.
So, according to doctor's orders, two weeks later we got a visit from Emma's home health nurse, Dylan Law.
This man is an incredible pediatric nurse. He loves his kids. He is patient and he listens to them. He will take whatever time they need. He is fairly quiet and will talk with them about their interests. He has jammed on guitars with another of his patients who is Emma's friend. We know kids that would only let Dylan access them, and so he went to the hospital for them. He gladly went to one child's home to remove a band-aid that the boy wouldn't allow anybody else remove.
Dylan doesn't tell those stories; but legends of Dylan circulate among his patients' parents. He shows up at Curesearch walk and Millie's Princess Run and motorcycle rallies in support of his kids. He will take care of kids who want him only - even on his days off. He has come from church on Sundays and left his personal life for a bit at the call of the kids who trust him.
Tommy loves when Dylan comes, because as soon as Emma's temperature is taken, Dylan will let Tommy shoot the thermometer probe cover off the thermometer over and over and over.
He regularly leaves a few empty tubes for Emma to play with - whichever colors she wants. If she is grumpy, he lets her shoot saline at him because it makes her laugh. Several months ago I forgot Emma's numbing cream which should be applied 20 minutes before the port is accessed. Dylan arrived, no cream... so he sat and waited and played with her until the cream had time to numb her up.
Thursday, when I had forgotten her numbing cream yet again, she decided Dylan was good enough at port access that she would just get it over with. She didn't even flinch - apparently when Dylan accesses her she doesn't feel the needle go in. It's a placebo effect, for sure, based on trust.
I am forever grateful for those who are driven to work in pediatric oncology. It must be a heartrending occupation so many days. It must be so frustrating to be so limited in what will work. The balance between toxicity and therapy is so delicate sometimes.
I am forever grateful for the nurses who gravitate toward pediatric oncology for the same reasons. I am forever grateful for Dylan's choice of profession. It would be such a tragedy if he were a plumber or a pharmacist.
