Today we reported for blood tests to see if Sully's levels are high enough yet to start his next wave of chemotherapy. He's been holding for 3 weeks because his ANC and platelet levels have not been high enough to begin. Inasmuch as cancer treatment is advanced, the general idea still seems arcane to me. The chemo drugs kill all of the cells including the good ones, and as a result there are recovery periods in between to allow the body to naturally build back the good cells. It is a delicate process of killing every Leukemia cell over the course of 3 years without compromising the host.
So far Sully has been a trooper, but he is nonetheless still a frightened 10 year old boy whose normal life has been uprooted by Leukemia. This morning was accompanied by his usual anxiety about getting "accessed" the procedure in which they tap a large needle into the medi-port that was installed under his skin months ago. He obsesses with me each time before we leave the house about putting the numbing cream on the area so that it has enough time to work by the time we arrive at the hospital. This part -- these recurring instances remind me that no matter how much we say this is the "new norm", there is really no such thing; it's really that we have just become oblivious to the affairs thrust upon us.
We arrived for his appointment, he sat for his finger stick and made his usual request with the nurse to prick the "side" of his finger. We returned to the waiting room and eventually the doctor came to see us and informed us that his blood levels were finally high enough to resume chemotherapy. After waiting for 2 hours we were summoned to a treatment room so that a nurse could stick the needle into his medi-port and attach the hose for the upcoming week of chemo. A young man arrived, not the usual nurse who handles the procedure. I could see some anxiety in Sully's face. On two occasions in the past in which he had a different nurse do this they messed up and the doctor had to come and handle it.
The man proceeded with the process, he talked to Sully kindly, but I sensed a tremendous lack of confidence in him, he seemed new and nervous. I'm sure Sully picked up on the vibe as well but neither of us made a fuss, we didn't want to insult him.
Sure enough he messed up inserting the needle, and before I knew it he had apologized and left the room. After the man left Sully started crying in a delayed sort of way. It wasn't from any pain, my sense is that he probably felt violated, like an object, like a pincushion; and the anxiety of having to be subjected to it again was overwhelming him. I reached over and rubbed my hand over the soft skin of his bald head. "What the hell" I said.
I reassured him it wasn't a big deal and that it was going to be fine, but it didn't prevent the shaking, and the tears from falling, or his eyes from turning red. When he cries it breaks my heart. It puts dots on this timeline of life and causes me to wonder how the hell we got here.
Soon the usual nurse appeared and handled the accessing. It was over in a pinch, and of course Sully reminded me why he only likes two specific nurses doing the accessing. I told him I would speak to the doctor and in the future we wouldn't let that happen again.
Tomorrow he'll be readmitted to the hospital and stay for a few days for this part of the chemo program. I stay positive in all my interactions with him and remind him this is not a big deal, it's just a job that we need to get done and before you know it will be behind us. He is attached to my hip more than ever now which results in some interesting experiences. He has no problem giving me advice after hearing me on a business call, he repeats humorous bits of other conversations that he probably should not have heard, and has been subjected to watching shows that he normally would not choose on the rare occasion I get to turn on television before retiring for the day. He's grown an affinity for classical music as a result of watching Mozart in the Jungle with me, an Amazon prime series, and was quick to explain the characters and adult themes to my fiancé when she was visiting. He cracks me up and continues to amaze me.
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