Day 670/42

We’re all moved in up here on the 7th floor. I hope to get some sleep tonight, but my heart is beating too quickly for that to happen just yet. Benji’s new immunotherapy medicine, Blinatumomab, will be hung for the first time at 5am.

I woke up this morning and realized pretty quickly that I needed an attitude adjustment. I snapped at Banyan, which was the last thing I wanted to do. Michael took Benji to the office with him so I could pack for our month long stay, and the heavy sadness was unavoidable. I didn’t want to leave. And I didn’t want Benji to need what we were leaving for.

As always, gratitude is the answer. It is a blessing that another path exists for Benjamin when the one he was walking ended. It is so new and so promising. I gave thanks for the minds that conspired to create it. I put fresh sheets on the beds and cut flowers for the table and left a lasagna in the fridge. I left some of my favorite music playing when I kissed the dogs, locked the door, and left.

I met Michael, Benji, Kathy and Gana for lunch, then scooped up my boy, put numbing cream on his port, and drove north. I decided to tell him in the car that the new medicine he’d be getting would harness his own immune system to fight his leukemia. I thought it might have a positive affect on him, energetically. He was much more concerned with the particulars of accessing and the peripheral IV line he’d need. As for the medicine–he clearly doesn’t need to know how it works. He was getting his game face on.

Benji walked slowly from the car to the clinic. His legs are sore. We waited in clinic for quite a while, then Dr. Moore came in. The visit was a short one. I didn’t get any new information, he just affirmed what I already understood.

Our nurse came in a few minutes later to access Benji’s port. He started procrastinating immediately. He was scared, but Sarah is one of our favorite nurses, and she was confident and calm. Benji took a while to get there, but he achieved his sweet place of peace. Sarah accessed him easily and successfully on the first try. That’s two in a row. It’s a major confidence booster.

Benji’s blood was sent to the lab, and we answered the usual questions. Our nurse learned that Benji would need a peripheral IV and offered to do it in the clinic, rather than wait for the upstairs team to do it. It was Benji’s choice. He was very thoughtful about it and asked so many great questions. He decided, bravely, to go for it.

Sarah was wonderful and called the 7 South nurses to discuss the best place for the line. Benji was so nervous, and so brave. He found his mind control again, through tears and shallow breaths. The needle entered the vein, but the catheter bent, and there was no blood return. It didn’t work. It had to be removed.

One of the hardest things to watch is Benji’s bravery turn to crestfallen betrayal. He shakes it off quickly, but I know the sting lasts.

We were free to go upstairs. We were admitted half an hour before shift change. We got a great room with a bathtub on the side facing the Skyway. Benji has excellent nurses for both day shift and night shift. I had far more questions for them than for Dr. Moore. So much has to be carefully timed and placed in the first 24 hours, and vital signs are constantly monitored. There has been a binder created for the nurses that outlines all potential management guidelines. Benji even has to sign his name each day to check for neurological changes. One nurse admitted that our room was also chosen because of its proximity to the nurse’s station.

The amount of leukemia blasts in Benji’s peripheral blood has risen to 24%. I don’t know how packed his marrow is now.

Michael and Banyan brought us dinner and collected our gear from my car. We made the room our own again. Right before they left, the IV team came in to try again. This time it was a male nurse who had a reassuring confidence about the process. His demeanor and Michael’s presence both helped strengthen Benjamin. I held his hand, cold and sweaty, while he found his bravery. The line went in so perfectly that Benji asked for the nurse’s schedule so he could request him the next time around.

Michael and Banyan left, and Benji fell asleep almost immediately. I chatted with our night nurse in a whisper. Benji got a heavy dose of intravenous Dexamethasone while he slept. He’ll have another one at 4:30am. These steroids will help manage the inflammatory response the cytokine release will initiate. Then, at 5am, the nurse will draw Benji’s labs, and administer his first dose of Blinatumomab. The first few days will be about a third of the maximum dose. If he tolerates that amount, the dose will be titrated up, and he will receive this medicine continually for 28 days.

If Benji is going to experience any ill effects, they will probably happen within the first day or two. No one expects anything to happen right away. But I still asked our night nurse to wake me up when she administers the medicine. If this immunotherapy is going to work with Benji’s body, then I intend to pour all of the energy and prayer and love I can into its success.