Day 293

Benji will be entering long term maintenance on Tuesday.

I need to just let that sink in for a moment. Regardless of how he got here, Benji’s frontline treatment is over. No more long days in the Infusion Center. No more shots in his legs. No more bright red or neon green liquid flowing through his veins. No more clumps of hair on his pillow. No more weeks of three and four trips to the clinic. And, good Lord willing, no more nights in the hospital. He will still be in treatment for the next thirty months, and he’ll receive chemotherapy of one kind or another every single day. But the most intense and most toxic parts of his treatment are behind him. From now on, it will be smooth sailing. Hear that, Universe?

Michael went to work for a couple of hours, then joined Benji and me at home so we could travel over the Skyway together. Before we left, I checked Benji’s blood pressure. I had a mighty scare, as one arm showed a pressure significantly higher than the other, with numbers I knew were dangerous. I brought the cuff with me to check it against the nurses’ machine. I’m glad I did. Both the clinic nurses and my friend Tracey in the Infusion Center gave me some tips to be sure I was getting an accurate reading. When we checked it again in the clinic, both my machine and the nurses’ machine gave a nice, normal result. No medication was needed.

We went into exam room eight. Benji’s nurse came in to warm his finger and prepare him for the poke that would yield enough drops for a complete blood count (CBC). A poke in the finger with a needle doesn’t even make Benji blink anymore. His counts were perfect today; a solid absolute neutrophil count (ANC) and healthy platelet and hemoglobin numbers. His nurse went over the many medications we have added to Benji’s medical record since we last visited the clinic. When she was finished, she told us that Dr. Moore would be in to see us soon. Michael and I looked at each other. Dr. Moore? We could not have been more clear in our request to meet with Dr. Oshrine today. We told our nurse as much. She left the room to clarify, and returned to tell us that the team had discussed it, and since Dr. Moore was Benji’s primary oncologist, they felt it was most appropriate for him to see us and discuss our next steps.

Michael and I understand this logic. It makes good sense, from a medical standpoint, to assign each patient a primary care physician and have that person see his patient as often as possible. It’s called continuity of care, and it’s a concept in which I fully believe. But up until this point, we’ve always had the big conversations with Dr. Oshrine. When Benji showed positive MRD after Induction and our world was spinning, it was Dr. Oshrine that took the time to walk us through his “very high risk” protocol and help us view it with gratitude. It was Dr. Oshrine who has indoctrinated us into each new phase of treatment and explained their specifics and what we could expect. And when Benjamin experienced a mysterious handful of symptoms that put him in the hospital for over three weeks, it was Dr. Oshrine that properly diagnosed his Methotrexate toxicity, just because he cared enough to stop in and say hello. If Dr. Moore is Benjamin’s primary physician, then where was Dr. Moore for those twenty-four days?

This was the first of many tough questions we threw at Dr. Moore when he walked into the room. Again, I was so grateful Michael was with me. He was able to open the conversation by clearly, calmly, and directly expressing our frustration to Dr. Moore, not only about his absence at the hospital, but about a situation we feel was mishandled in many ways. We had to speak carefully, as Benjamin was very present in the tiny space. But it was important that Dr. Moore hear us. If he is going to be our main man moving forward, we needed to be sure he fully understood where we were coming from.

Dr. Moore absorbed our words and responded with a professional mix of apologetic empathy and confidence in the path ahead. I was reminded of our first meeting on New Year’s Eve, when he walked into that little room with no windows to find Michael and me in complete shock, and of the subsequent days, and the care and time he took to explain every detail to us. He made us feel through his confidence then that Benjamin was in excellent hands, and that’s what his intention was today as well. He too was aware of our need to filter our words for Benjamin’s ears, and told us that a formal meeting would be set up for us to review the events of the past few weeks with the team. With that knowledge, we were free to direct our arsenal of questions toward the future.

I referred to my carefully written list, and Michael asked with his intuition; often these two methods resulted in the same questions. We wanted to know about other protocols, other hospitals, other toxicities the team may have missed. We wanted clarification on the “proven benefit” of the second Interim Maintenance Phase. We wanted to know about high dose Methotrexate vs. the escalating method, and what the risk would be of Benjamin missing his final two doses. We talked about the role of Leucovorin and hydration and Neopogen and various tests along the way. We discussed Benji’s blood pressure and other residual symptoms that precipitated our request for appointments with specialists. Most importantly, we wanted to be sure we were still in the most appropriate place for Benjamin to receive the care he needs. Dr. Moore answered every question with the confidence we were hoping for. We were assured that our team wholeheartedly and unanimously agreed on the right solution for Benjamin’s treatment. Other facilities and hospitals have been contacted for input. Moving forward, the path is clear.

Benjamin will forego the remainder of Interim Maintenance 2 and will enter long term maintenance on Tuesday. There is a chance that removing these final two escalating doses of Methotrexate and accompanying Erwinia shots may place him at a slightly higher risk for relapse. But there is also the possibility that the nine days of unintentional Methotrexate exposure Benjamin received has eliminated any risk of relapse, regardless of missed doses. I hope we never know the answer. Either way, administering the final escalating doses, even with rescues in place, could potentially damage his kidneys to the point that no more chemotherapy could be tolerated. Obviously, this is unacceptable. The risk benefit analysis was an easy one for the team. The only problem they needed to solve then was how to handle the Methotrexate Benji will need in long term maintenance.

Unlike other chemotherapy medicines for which there may be alternatives in case of reaction, Methotrexate stands alone in its category as a DNA antimetabolite. It is the backbone for long term maintenance on the Children’s Oncology Group protocol and in every other established collection of recommendations for acute lymphoblastic leukemia based on clinical study. It is irreplaceable. Fortunately, the dosages Benji will get during long term maintenance are tiny fractions of what he has endured during each of his Interim Maintenance phases. Once a month, he will get a lumbar puncture with Intrathecal Methotrexate. Even though the medicine will be absorbed in his spinal fluid and not in his blood, he will get a rescue of Leucovorin in case of crossover. He will also get an oral dose of Methotrexate once a week during the other three weeks of the month. These doses will not need rescue, but we will follow the first few with blood tests to see how his body clears the medicine. The other components of long term maintenance are monthly intravenous Vincristine, five day pulses of Prednisone each month, and nightly 6MP until the end of treatment.

We received our long term maintenance roadmap and our next appointments, and we were free to go. We stopped by the Infusion Center to say goodbye to our favorite nurses. I had been concocting plans for ways to celebrate Benji’s final shots with them; now, the shots won’t happen. And that’s okay. Benji is on the path that leads to healing. When we were in the clinic, the vibe was somber, almost reticent. When we walked into the Infusion Center, things felt vibrant. The nurses were so happy to see Benjamin after hearing what he had been through. The difference a little love makes in a medical setting is astounding.

We grabbed Benji’s lunch of choice on the way out of St. Petersburg and headed home. Benji took a rest with Michael while I went to retrieve Banyan from middle school. Banyan immediately asked how Benjamin was doing and what came of our meeting today. He has been so thoughtful lately. We all converged at our dining room table this evening with Kathy, Gana, and Aunt Becky to celebrate Gana’s birthday with a delicious meal and a fantastic cake. It was nice to be with our loving family, each of them so genuinely happy to have us home. We are so fortunate.

As I reflect on Benjamin’s frontline treatment and the patterns that have emerged these last ten months, I am reminded that the end of every phase has revealed a different struggle, and an unparalleled intensity. One of the moms in my online group shared that her oncologist is fond of breaking it down like this: the body handles the chemotherapy until it can’t handle it anymore, and that’s when, theoretically, the leukemia can’t handle it either. Perhaps Benjamin’s triumph over this latest obstacle fulfills that prophecy. This is what I choose to believe. Benjamin is entering long term maintenance having been pushed to his absolute limits, but he has defeated each of his mighty enemies with bravery and grace. He has a body full of new and healthy cells ready to serve him and his highest good. And so it shall be, as we move forward with clarity.

7 thoughts on “Day 293

  1. Wow!

    And just to make sure, there was a party lined up at your home to make sure the celebration would happen.

    Congratulations, to you and Benji.

  2. Tears of gratitude that you are moving forward in long term maintenance !!! Love and blessings to you all! Benjamin, I’m so proud OF you and FOR you!! A great future is ahead!!!

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