Today was like one long roller coaster. My stomach hasn’t quite recovered. Things are quiet and peaceful now, and Benjamin is soundly sleeping. For that I am grateful.
We woke up at 6am again this morning and Benjamin got straight into the tub, then back to bed for a couple of hours. The morning lab work continued to show a reduction in white blood cells, down to 15,400. This is a blessing, and less likely a result of hydration as the days go on. Benjamin needed no transfusions today either. His potassium and calcium are a little low, but those things can be easily corrected. So far, everything is going smoothly with this three day regimen of chemotherapy.
Benjamin’s pain was so great this morning that he agreed to oral morphine right away, then he got into his second hot bath of so many today. He was also able to relieve some pressure in his belly in the bathroom. All of these things offered him enough peace to take a long morning nap. Our nurse hung Benjamin’s first chemotherapy early. I was grateful to get it over with.
I’m glad Benjamin was sleeping during morning rounds. We discussed Benjamin’s pain, nausea, and counts. Then I asked if there were any results from yesterday’s lumbar puncture. The doctor on call this week glanced at the nurse practitioner then asked me, across Benjamin’s sleeping body, if I wanted to discuss it in the room or step outside. That question told me what was coming next. I stayed right where I was.
They found leukemia blasts in Benjamin’s cerebral spinal fluid. The doctor and nurse practitioner tried to explain the breakdown of cells to me but it wasn’t making any sense. I asked what it meant in practical terms–what’s next. The doctor said she could tell me what the normal induction protocol would be for leukemia in the central nervous system–it would include several lumbar punctures over the next couple of weeks–but she wanted to consult with Dr. Oshrine and the team and make sure everyone was on the same page before telling me what they’d recommend for Benjamin, considering his potential enrollment at NIH and his underlying CMMRD.
I felt myself getting angry. I wondered if this infiltration of spinal fluid happened during the recent spike in white blood cells. I’d been asking for lumbar punctures for weeks now, and was told the risk outweighed the benefit. I wondered if Benjamin’s recent nausea had anything to do with this. I wondered if we should hold off on Leucovorin, do neuro checks, when radiation might come into play, perhaps an MRI. I started a list of questions.
After Benjamin’s second chemo was hung, he woke up and vomited immediately. Once he was comfortable again he went back to sleep. I had a long stretch of time to think, to research, and to ask questions in the moms’ groups. I met with the pain team and the occupational therapy team to discuss ways to keep Benji’s pain under control that we may not have considered. We were also visited by nurses and volunteers who wanted to come and say hello, and package delivery folks bringing us kindness from our friends. When I was alone, I sat in the window and knitted, staring at Benjamin as he slept, wondering how this could be happening.
Michael came up as early as he could this afternoon, so he was present when Dr. Oshrine walked in with the attending physician and nurse practitioner. We took deep breaths. Dr. Oshrine, almost immediately, said that the findings in yesterday’s lumbar puncture were not a cause for concern to him. He said that while there were blasts in the cerebral spinal fluid, this classification is so nebulous that it isn’t considered actual CNS disease. Until very recently, these findings wouldn’t have changed anything as far as treatment goes, but one study suggested that additional lumbar punctures may prevent CNS relapse in the future. He said that the findings don’t in any way compromise Benjamin’s eligibility for the NIH trial, and that the CAR-T cells would target any and all leukemia cells with CD22 protein, even those in the central nervous system. He wouldn’t have changed his decision to delay the procedure either, given Benjamin’s history and persistent platelet deficiency. All of this was a big relief, and I wished it had been presented in such a positive light this morning.
Moving forward, Dr. Oshrine is scheduling Benjamin for weekly lumbar punctures with three different kinds of medicine delivered each time. This is less to treat the current population of blasts, he said, but more to prevent the development of actual CNS disease. The once weekly regimen is less frequent than the induction protocol suggests, but Dr. Oshrine was weighing lots of things when he designed the schedule. First, the impending decline of Benjamin’s platelets again adds more risk to frequent lumbar punctures. Second, Benjamin’s CMMRD makes the repeated use of Methotrexate undesirable (as evidenced by his toxicity episode last October). And finally, any remaining blasts in the CNS will be eradicated by future therapies–specifically the CAR-T therapy and the radiation Benjamin will need to get to bone marrow transplant. So, the idea is to use as little chemotherapy as possible to get Benjamin to NIH, because toxicity now could jeopardize his chances of participating in the trial.
As Dr. Oshrine was explaining this, he said words out loud that sank like a stone in my chest, and in Michael’s too: this trial is likely the last remaining therapy available to get Benjamin to bone marrow transplant. I had feared as much, barring some breakthrough with the PD1 inhibitor option. But it had never been said, and I never attempted to hear it. There are some things we can’t control, like how much CD22 protein is on the cells when we take our next sample and send it to NIH. But we can control, to a certain extent, how much chemotherapy is given, and therefore how much risk Benjamin’s organs are under. We have to do the best we can with what we have, and we continue to trust Dr. Oshrine to make those decisions with us, for Benjamin.
I was exhausted after digesting all that had just happened. Benjamin continued to sleep intermittently throughout the day, and I joined him for his late afternoon nap. We woke up for evening labs. Kathy and Gana came up for a visit and brought Banyan with them from school. The boys played a video game on their phones for a few minutes. Those few minutes were by far the brightest of Benjamin’s day.
The rest of Benji’s evening was really hard. He was in and out of the tub and couldn’t get a handle on his pain. He finally agreed to intravenous morphine, which worked quickly. While the nurse was administering it, she took a set of vitals, and Benjamin had a fever of 101.3. The doctor on call requested cultures from both Benjamin’s port and a peripheral vein. Benjamin was very upset to be woken up after midnight by Zander the phlebotomist. But he offered his vein like a champ, and went right back to sleep when it was over. His standard antibiotic, Cefepime, was hung. From fever to antibiotic, the process took over an hour. I asked for another temp. Totally normal. I expect both cultures to be negative in the morning.
So, we’ll be here for a while. Benjamin’s next lumbar puncture is scheduled for Wednesday, and we need to get his pain under control. Over the next several days our only goal is to make him as comfortable as possible. By the end of next week, Dr. Oshrine should be able to report to NIH, and we should know our next steps. It has been a roller coaster of a day indeed. But I was reminded today that there are many people on this roller coaster with us. We are grateful for this collective energy and love.