Life With Steven: Cycle 4, Day +25: Pomp and Circumstance

Steven's last official day as a patient "on-treatment" at St. Jude was a busy one.

First order of business was a test of his pulmonary function-- a decrease in his ability to fill his lungs was noted, it will be followed up again when we return for our followup visits.

Next, Dr. Gajjar's nurse Tracy found me to tell me the results of Steven's lumbar puncture on Friday were clear, so they gave the A-OK to go ahead with removing his line.

To celebrate Steven's official end of treatment, Angie (child life) and Tara (neuro-oncology nurse) presented Steven with a silver necklace with a star, on the back it says SJEOT, standing for St. Jude End-of-Treatment.

We left to go get Steven's central line taken out. Steven wasn't supposed to eat anything after midnight, even though he receives no anesthesia to get his line pulled, there is a small chance the line could break when they pull it, they want to be ready to perform surgery at a moment's notice if that happens.

They were backed up, and we waited 45 minutes, during which time Steven was agonizing. We finally were put into the procedure room, and Steven removed the tape from his line dressing.

Dr. Mark, the behavioral medicine doctor came in with his associate to work with Steven. Dr. Mark has worked with Steven previously to help him with the chicken pox vaccine and with one of his lumbar punctures. He uses different techniques to get Steven to relax.

Steven closes his eyes and the nurse inspects the spot where the line comes out of his chest, looking for the single stitch they put in to hold the line in place. The nurse snips the stitch and Steven can't even feel it.

The nurse gets a firm grasp on his line and prepares to pull.

The line protrudes from the center of his chest, and is threaded just under his skin to just below his right collarbone, where it is inserted into a vein near his heart. The nurse places one hand firmly over the spot near the collarbone where the line goes into the vein, her other hand firmly on the external portion of the line and pulls, hard. There is some resistance, then the line breaks free and comes out.

This is Steven in a state of shock. As anyone can imagine, it felt very weird to him to have his line yanked out. He was in shock, and immediately dissolved into tears, at which point I set down the camera and ran to comfort him.

The tears were short-lived, his relief at having this over with was palpable, and a few moments later he was smiling.

Steven left the procedure room, with his line in a plastic bag instead of taped to his chest, and we went down to the school to see Miss Brooke, his teacher.

Steven, Dylan, and Trey played Mouse Trap after finishing up their poetry assignment. Dylan is to the left of Steven, he is one of the three other little boys we've met at St. Jude with the same sort of tumor and who is doing the same trial as Steven. The little boy in front, Trey, has sickle-cell anemia, and is from another family living near us at Target House who we've become friendly with.

After school Steven got an echocardiogram. After his second cycle of chemo, an abnormality in his heart rhythms was detected, it will be followed at each of our followup visits.

Steven's final appointment of the day was with his speech therapist. Steven has been in speech therapy since he was two, he has a very nasal voice that is related to his cleft palate. They are working with him on ways to improve the nasal quality of his voice.

We left the hospital after his speech therapy appointment with the faint strains of Pomp and Circumstance wafting through our heads.

We went to go pick up Sean, when we got back to Target House, a family we met at the church in Memphis, the Strauser's, came by with their three boys to meet with us and to help us with shipping some of our boxes back to California.