It was bright and early when the four of us left the house this morning. Benjamin was hungry, but he couldn’t eat in case he made counts for today’s lumbar puncture. I abstained from breakfast in solidarity, and Michael and Banyan waited until they left the house to eat. Benji hoped he wouldn’t make counts. He doesn’t love lumbar punctures. We reminded him that delaying treatment would just delay its end. We hit the road.
Benji had the first appointment of the day today at the Hematology Oncology Clinic at the All Children’s Outpatient Care Center. We opted to check his blood counts via finger poke. This way, if his absolute neutrophil count (ANC) was below 750, we could avoid the inherent risk that comes with being accessed.
While we waited for the results of Benji’s complete blood count, Dr. Oshrine came in to see us. He’s been on vacation and I was grateful for his return. Benji was too, and he asked his doctor for a hug almost immediately. We went over many things, including the roadmap for Interim Maintenance 2. I showed Dr. Oshrine the calendar that the clinic nurses had prepared for me. He disagreed with the plan to give Benji all four medicines on day one of the phase, saying that Erwinia can reduce the efficacy of the IV Methotrexate. He consulted with Dr. Moore who agreed with him, and they changed the schedule. I told him again how happy we were to have him back.
Our nurse came in during our consult. We expected her to have Benji’s counts back, but instead she had to do a second finger poke. The lab said the first vial didn’t have enough blood in it. Benji took it like a champ of course, but gave me a bit of an eye roll on the side.
Dr. Oshrine left, and Benji and I waited in the exam room. Michael was waiting in Sarasota to find out whether he’d be driving north for a lumbar puncture or staying at the office. Finally, Dr. Oshrine came back in with a piece of paper in his hand and a big smile on his face. Benji’s amazing body had done it. His ANC was 809, a huge jump over the weekend. I texted Michael with the go ahead to drive north, and put a Scopolomine patch behind Benji’s ear. He was cleared to begin this last phase of frontline treatment without delay. He was mildly disappointed. I was very pleased. I praised his hard working body.
Benji’s nurse came back in to access his port. He did such a great job through the flushes, using only lavender oil today. She had to draw more blood for his chemistry panel. As she was cleaning her field after accessing, she accidentally threw Benji’s blood into the waste bin. It was an honest human error, but it meant another flush for Benji and another vial of blood drawn. Two finger pokes, a chest poke, and two blood draws, and he hadn’t even had any medicine yet.
With the rescheduling of the Erwinia, today’s medicines got rearranged to try and get Benji home a little sooner. We just had to wait for the pharmacy to send up Benji’s Kytril and his two intravenous medicines, Vincristine and Methotrexate. They arrived shortly after Michael did. Benji was so happy to see his daddy.
There were no problems with the Kytril or Vincristine, but as soon as Benji saw the neon yellow Methotrexate in the syringe, he looked afraid. He remembered that color in his urine and in his vomit during many painful nights on the seventh floor in May and June. He knows how it makes him feel. I gave him the mathematics to try and make him feel better; the dosage of the Methotrexate during this phase is considerably lower than it was then. The medicine was pushed through his port over a minute or two, not 24 hours. Still, he could taste it and feel it immediately. I didn’t tell him the dose will escalate every ten days. When the syringe was empty, we walked slowly down to surgery, Benji holding his tummy.
By the time we registered Benjamin for surgery he was feeling much better. He and Michael had an epic game of trash can basketball. Benji’s name was called relatively quickly, and we went back to pre-op. The nurses remembered his aversion to pre-drawn saline and his preference to be heparinized and deaccessed while he was still asleep. We met with a new anesthesiologist who joked with Benji for several minutes before they wheeled him back. Benji said goodbye to Michael and I walked him into he operating room.
Dr. Moore was scrubbing up to do today’s lumbar puncture. It makes me very comfortable to see him in the OR now. He knows Benji’s lumbar puncture history better than anyone. I told him now happy I was that Benji had made counts. He looked at me knowingly and said it wasn’t the first time Benji had surprised them all. We talked baseball with the anesthesiologist until Benji fell asleep. I kissed his head, uneasy that his body was twitching a lot as I was leaving. I expected a high dose of propofol.
Michael and I grabbed coffee and snacks and went back upstairs to wait. The rain fell outside the window. It seemed like it was taking a long time. Finally we saw Dr. Moore exit the double doors from surgery. He said that everything went well, but that Benji’s spinal fluid was slow to come out today. He said it happens sometimes, but that the medicine went in just fine and there was no cause for concern. Michael and I looked at each other. It was hard not to worry.
Soon we were buzzed back. Benji was still sleeping when we got to the PACU. He woke up slowly, very groggy. I asked the nurse to look up his propofol dosage; he’d gotten 400mL, more than double his dosage from the last puncture. At one point in recovery he looked at us, teary, and said “I didn’t wake up good.” He wanted to go home. They brought him a wheelchair and we signed his discharge papers. We noticed two bandaids on his back instead of one. He’d been punctured twice. We watched him carefully, but no back pain or headaches would follow.
Just as we entered the parking garage, Benji looked panicked and asked for a bucket. We looked around; there was nothing in sight. Michael quickly took him to the corner of the garage, and I rifled through the hospital bag for the plastic cafeteria bag our snacks were in. I dumped the snacks and got the empty bag to Michael just in time for him to catch the neon liquid. I ran back in to get water for Benji while Michael loaded him into my car. I was so thankful for my partner. We caravanned home, incident-free.
We took the rest of the afternoon and evening very easy. Banyan went home with a friend, and Benji’s teacher sent home a folder of work for him with our neighbor. I decided it could wait. He has done enough today. He started to feel better as the day grew dark, and was able to eat dinner. Later, as we were snuggling in bed with both dogs, watching Chris Archer pick up a win for the Rays, Benji sighed and said, “home sweet home.” I felt the same way.