Day 299

Benjamin began long term maintenance today.

(I notice I have a tendency to isolate this fact, like it needs verification. It is still sinking in.)

It was a super early morning. We all left when it was still dark outside, and we were a sleepy crew. By the time Banyan and his friends had boarded their schoolbus, Michael, Benji and I were already at Benji’s first appointment. There wasn’t enough coffee in the truck.

First on today’s docket was a follow up with Benjamin’s ophthalmologist. He was very pleased that Benji’s eyes sustained no scarring from his Methotrexate toxicity. I’m so glad we insisted on their consultation. Benji will now only take his eye drops on an as needed basis, and follow up in a couple of months.

Next, we went over to the clinic. We checked in, got Benji’s vitals, had a quick meeting with the nephrologist, and settled into our exam room. Benji was already extremely hungry. The Child Life representative came in before Benji was even accessed with his first surprise package of the day, a “Love Bundle” from The Children’s Cancer Center with several awesome and age appropriate toys. They kept Benji busy until his port was accessed and afterward, during the long wait for chemo.

Michael and I could see the effect of Benji’s recent hospital stay as he was getting accessed, having his line flushed with saline, and his blood drawn. Even before he was admitted, these once routine acts were becoming harder and harder to bear; but now, there is a difference in the fear he pushes through. It feels like a much larger monster is in the room with us in these moments. Benji still defeats his foes soundly, using his breathing, oils, and holding hands. But he is weary. Fortunately, he is in maintenance now, and will not be accessed for a full month. I hope the weight of that time and the respite on his body will allow the concept of “maintenance” to sink in with Benji, too.

Dr. Oshrine was our attending oncologist today. We had a feeling he would be. Dr. Moore’s visit last week was a calculated one. Such an event mandated that Benji’s primary weigh in. Today reinforced that Dr. Oshrine is still our guy, albeit unofficially. Benji was happy to see him, and said “increasingly colorful!” as soon as his favorite doc walked in (these are the words Dr. Oshrine uses to describe Benji). It was reassuring to reconnect with him and hear his answers to many of the same questions we asked last week. We talked about the plan moving forward and made a few clarifications. He gave Benji an examination and paid careful attention to his recent symptoms, though nothing raised a red flag for him. Before he left, we felt compelled to tell him why we had so strongly requested he oversee Benji’s path ahead. I was grateful for the opportunity.

During the long wait that separates the doctor’s orders and the chemo’s arrival from the downstairs pharmacy, Benji received his second surprise package of the morning, this time from our favorite baseball team. The Rays had been keeping in touch with us through Benji’s hospital stay, as we had to turn down tickets to the team’s final two games. In one of our email exchanges, they offered to send one of the team mascots, DJ Kitty, to the seventh floor to cheer Benji up. I declined, as he was then in no shape for visitors. But I told them how much we appreciated the offer, and that Benji loves DJ Kitty so much he plans to dress like him for Halloween. Today’s package was full of DJ Kitty gear to get Benji ready for the job: hat, shirt, backpack, bobble head, snow globe and signed cards. I can’t really say enough about this baseball team.

Benji received intravenous Kytril to prevent nausea, followed by his first chemotherapy medicine of the day (and of maintenance), Vincristine. He could taste it flowing through him. He hated it. We distracted him with Uno. It was a short administration and soon we were free to go down to surgery.

Benji had a long wait for his procedure today, more than two hours. The nurses were superb and helped us take his mind off of his hunger and nerves. He was experiencing back pain, perhaps from the Vincristine, though that would be a little early. Perhaps it was anticipation of the lumbar puncture to come.

Finally, Benji was wheeled back to the operating room. He said goodbye to Michael at the double doors, and I walked back with him. I saw Dr. Mayer as soon as I walked in. She would administer his Intrathecal Methotrexate today. It was the first time we’ve seen her since Dr. Oshrine solved the mystery that eluded her on the seventh floor. She looked at me with compassion and empathy, both multiplied a hundred times when she looked at Benji. She said how sorry she was that he had to go through what he went through. I accepted her apologetic eyes. It was not the time or place to talk about the past, or what should or should not have happened. That will come. I was holding Benji’s hand. He was beginning to shake with fear. Dr. Mayer put a hand on my back and told me I was a good mom. It was a strange choice of words, but given the context, I know she meant more than she said.

I leaned down and placed my forehead on Benji’s cheek and talked to him calmly as the propofol began to put him to sleep. His nerves settled. The OR nurses, women I didn’t know, rushed me away with a “Bye, Mom,” insisting Benji was asleep. I told them I liked to wait for his telltale yawn. It didn’t come, and I was shooed away as they began occupying their assigned roles. Sure enough, just as I neared the door, I heard one of them say, “It’s okay, buddy.” I knew he wasn’t asleep yet. I stayed and said I love you loudly. His yawn followed.

Benjamin was very sleepy when he came back from surgery. He woke up and went immediately back to sleep for a long, deep nap. We let him rest. He clearly needed it.

By the time Benji was ready to leave, we had been at the hospital for ten long hours. We stopped to pick up the medicines he would begin tonight: Prednisone and 6MP (tomorrow I’ll pick up the rescue drug Leucovorin). Gana brought Banyan to us as we arrived home, and we all shared a pot of soup. Benji has to take his 6MP no less than two hours after eating, so tonight was our first night back “on the clock” after dinner. This made for a late bedtime, but we took advantage of it with the first few innings of The World Series. Maybe the Rays will make it there next year.

There’s a full moon tonight, an auspicious time to fulfill intentions. I’m so grateful for Benji to be entering this maintenance phase. I spoke with his sweet teacher tonight. She was so concerned and so accommodating. I told her that he may or may not go to school tomorrow. We will see how he feels in the morning. I’m learning to take this recovery, this life, one day at a time.