The new central line (CVC) is anchored in a vein near Nick’s heart and has two ports that hang from short tubes (lumen) outside his chest. A heavy-duty clamp called a “bulldog” is attached to each tube ready to use in case there is a leak. Really? “What kind of ‘leak?’” I question. “Well, blood of course, but we don’t anticipate that ever happening.” I need more information. “He could bleed to death? Could the whole thing get pulled out? Show me again how to use the clamps.”
We use the simplicity of a safety pin poked through a piece of strong water-proof tape wrapped around the lumens and then pinned to his clothing to “Avoid pulling on the tubing!” This thing needs a manual.
Each port is used to take blood or give him stuff like blood, platelets and chemo, so a silver lining to this god-awful contraption is now there will be less pokes. I should use a happy face here – Nick is thrilled! His arms are colored blue, black and green, depending on when the last needle poke took place. But the concept of having this thing anchored near his heart and hanging from outside his chest makes Nick’s “tummy wiggly.” It helps he has seen that other kids also have it.
I take a late night walk about the sleeping ward. My fists clench and unclench. WHY? WHY? WHY? I want to break something. I want to punch and rip and tear until I can’t stand up. I punch at the air, and then feel stupid because what if somebody sees me? But I’m just another cancer-parent losing my mind.
Frankie and his Dad left for home yesterday. It started as my idea because all of us don’t need to be here. Fourteen-year-old Frankie, especially, doesn’t need to be sitting around on his butt, stuck in this hot little hospital room, surrounded by the craziness. It’s too hard worrying about both kids; I can’t deal with what this is doing to my oldest as well.
I can do this by myself – I’m better at this by myself. Frankie needs to go to school, our little farm and animals need to be cared for and FH (my husband) needs to pick up some employment.
A new protocol called the New York Regimen or “Big Guns” chemotherapy begins tomorrow and our main oncologist (cancer doctor) Dr. Kent says Nicholas will get very sick before he gets better. We’ve heard that before. Now how sick is very sick?
This doc has a kind way about him. It’s good to see his handsome face and clear eyes, but I hate his words. “We have to take Nicholas really low before this disease will go away.”
He pauses, waiting for another one of my questions, but it occurs to me that the three walls I can see are bare. I want to turn around and look at the wall behind me, because I’m wondering what you put on the walls a room with the purpose of telling bad news to families with sick kids.
He continues to speak and tells me the plan is to get Nick into remission. And they know by the cancer’s aggressiveness, its lack of response to the first chemotherapy, that a bone marrow transplant is necessary. “It’s the type of cell that’s mutating: the “T” cell. It’s like a general cell that tells other cells what to do.” I want to remind Dr. Kent that less than a month ago we were told “If you’re going to have cancer, then leukemia is a good cancer to have.”
I look at the wall behind me when I leave. It’s bare too.
The pets waiting at home.