Day 636/8


Today was Day 8 of Benjamin’s reinduction therapy. He has had chemotherapy in nearly every way possible today. Through it all his attitude has been sparkly and sweet. He has been patient and calm. He has kept the nurses happy and kept our spirits strong.

Since Benji couldn’t eat this morning, I tried to let him sleep in as late as possible. It wasn’t hard to do; neither of us slept well, between Benji’s 2am platelet transfusion and the pharmacy tube system sounding like a thunderstorm inside the hospital walls last night. Michael was already on his way when Benji woke up. Daddy was the very best distraction for a day without food.

We met with the team during rounds. Benji’s platelets got a nice boost from the transfusion, up to 46,000. His hemoglobin, ANC and white blood counts are stable. The number we are watching most closely now is phosphorous. It’s still on the rise, a common byproduct of the body rapidly shedding dying cells. The nutritionist came in with the oncologists and discussed the low phosphorous diet they are recommending for Benji. It’s not terribly restrictive; no dairy, no nuts, no processed foods, no legumes. No problem.

The oncology pharmacist organized Benjamin’s complicated new treatment plan and helped the nurses piece together the puzzle of how the day would go with no contraindications. First up was Benji’s lumbar puncture with Intrathecal Methotrexate. He was taken down to Special Procedures on a stretcher, with Michael and I walking beside him.

We met with the anesthesiologist while we waited for Benji’s spot in line for the surgical room. He told us that when he looked up Benji’s most recent anesthesia experience (last week’s lumbar puncture, colonoscopy and endoscopy), he noticed that Benji needed Phenylepherine to bring up a low blood pressure during sedation, and he wondered if this was a recurring situation. It was the first we’d heard of it. We really appreciated this anesthesiologist and his through, kind approach–but we did not appreciate learning this information a week after it happened. It was a good reminder to ask more thorough questions while Benji’s in recovery.

Michael kissed Benji and went to grab the pager. I walked our boy back to surgery, thanked Dr. Mayer, and held Benji’s hand until the propofol started to do its job. Today I told him to dream about riding a roller coaster. We were designing its loops and dives when he fell asleep.

We were paged in record time, and walked back to recovery to find Benjamin wide awake, eating Ritz crackers and making the nurses laugh. He was singing and joking and clearly feeling good. We were given a complete run down of the lumbar puncture, as directed by the anesthesiologist, then we went back upstairs to 7 South.

We put numbing cream on Benji’s legs to prepare him for his third round of Erwinia shots. Michael went to fetch Benji his low phosphorous lunch of choice while our nurse organized the sequence of chemo that would follow. Michael was back before the first medicine was hung from the IV pole.

We requested Kytril to be administered before anything else, to prevent nausea. Then came Benji’s Vincristine. It dripped over fifteen minutes. Benjamin was ready for the Erwinia shots next; he wanted to get them over with. So the nurses hung his Dexrazoxane, the heart protectant, which would drip while he got his shots, preparing him for Daunorubicin.

Benji was, once again, absolutely inspiring to watch as the needles went through his skin. His right leg hurt especially badly afterward. He wanted to walk right away. As we were leaving the room with our boy fighting tears, Dr. Oshrine was approaching. I nodded to Michael to stay with our doctor, to feel the comfort of the answers he gave me yesterday. Benji and I took our laps.

We returned to our room when the Dexrazoxane finished dripping. Our nurse was waiting with the bright red Daunorubicin. Dr. Oshrine and Michael were deep in conversation. Once the Daunorubicin was hung, Benji was ready for more walking. I was glad Michael had the opportunity of a private audience, as I did yesterday.

Benji and I came back to the room. He was tired and ready to rest. Dr. Oshrine stayed with us for a long time. He would have stayed an hour more. He wanted to be sure we had clarity and a chance to ask questions. We are slowly learning about the process of immunotherapy and bone marrow transplant. A big take away I got from today’s conversation was that Benji’s immune system will be severely compromised for months after transplant. It is very likely he will not return to school until fourth grade. I haven’t talked to him about this yet. It isn’t the right time, and it is still so far away. For now I will communicate with Southside about the best way to keep him on par for the year and connected to his classmates.

Dr. Mayer came in the room to tell us that Benji can’t start the Dasatanib Dr. Oshrine recommended until tomorrow. There are still folks who have to sign off on the orders. Benji’s roadmap is totally unique, and requires a lot of checks and balances. Dasatanib has only come under COG protocol for kids with the Ikaros genetic deletion in the last two months. Dr. Oshrine has overseen it during his fellowship in Philadelphia, and it has been used here at all Children’s for other more common variants. But Benji will be the first to have this roadmap here, with this diagnosis and this backbone of chemotherapy. This is why we are so grateful for Dr. Oshrine. He said to us, so sincerely, “We’re going to get him through this.” When he left the room, Michael looked at Benji and said, “Your doctor is a badass.”

Benji won Wednesday Bingo (again) this afternoon. He chose a new Yahtzee game as his prize. We played with Michael until he left for the night, then we snuggled in with a movie. Benji was asleep within minutes. His body sustained so much today. Aside from the new Dasatanib, tomorrow will be a light day, and I’m grateful for it. I’m also grateful for the many minds that made today’s crazy medical puzzle fit. We are one day closer.

5 thoughts on “Day 636/8

  1. Laura dear: I am shaken by all you and your family are going through and the road ahead. May you continue to have the strength you have to see it through. Love, Sonia

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