Day 666/38


Huge ups and huge downs today. I’m choosing to focus on the ups as much as I can. The downs are starting to make me feel numb. I don’t want to feel numb. Gratitude is so much easier.

Benjamin’s Make-a-Wish Foundation wish came true this morning. It took me so many months of his treatment to accept the idea, and I’m so grateful I did. When Benji relapsed I contacted the sweet volunteer who was helping coordinate Benji’s wish and put everything on hold. When we learned how few days we’d have together outside the hospital for the next several months, I asked her to go for it.

Benji’s wish was to go camping and fishing all over Florida. He asked for a pop-up camper to make that possible. What he received was so much more than we ever dreamed would happen. The Make-a-Wish Foundation worked with North Trail RV in Fort Myers to gift our boy a 26′ camper trailer. It is gorgeous. There are bunk beds for the boys and appliances for cooking and all sorts of awesome amenities. Benjamin was completely surprised. I know there are a lot of people–many in our own community–that support the Foundation and I am so grateful to each of them. I have released any guilt or misgivings I had about accepting such a gift. Instead I feel nourished by the knowledge that such kindness exists, just to give Benji’s rough road a smoother ride.

Michael made the last possible reservation at a campground in a beachside state park on the east coast. We spent the afternoon loading up Benji’s new toy and shopping for supplies. While Michael and Banyan were in one store, I waited in the truck with Benjamin. That’s when Dr. Oshrine called.

Benjamin’s bone marrow is 60% infected with leukemia cells. I knew as soon as I heard Dr. Oshrine’s voice that it was not good news. He admitted that the increase in Benji’s platelets and neutrophils yesterday had made him optimistic. He wasn’t expecting this high a number. I asked if the marrow had been sent to flow cytometry, and it had. There is no doubt. Morphologically and through the cytometer, 60% of the cells in Benji’s marrow are leukemia cells.

I talked to Dr. Oshrine for a long time, sitting on the curb outside of the truck and outside of Benji’s earshot. There is no point in Benji knowing this information right now. His treatment plan does not change. In fact Dr. Oshrine said how much this reinforces the theory that the next phase, immunotherapy with Blinatumomab, is the right path for Benji. Chemotherapy is no longer working for him. After twenty two months of trying, that option has ended.

The burden of disease is much higher than any of us wanted. Blinatumomab works by engaging the body’s own T-Cells to fight the leukemia cells. The higher the level of disease, the higher the inflamation response, and the higher the release of cytokines. Cytokine Release Syndrome can be a severe complication of this therapy. There are also neurological toxicities that can happen that I can’t bring myself to research yet. But Dr. Oshrine explained that Benji would have preventative and supportive measures, like carefully timed anti-inflammatory steroid use, to try and ameliorate potential toxicities. He expects some cytokine release. It’s now a matter of managing it.

I asked Dr. Oshrine if he had treated someone with Blinatumomab who had as high a disease burden as Benjamin. He has, successfully, but in Philadelphia, not at All Children’s. This upcoming phase–much like Benji’s disease–has gone from relatively straightforward and common to complicated, unique, and, frankly, terrifying.

Dr. Oshrine left me his unreserved blessing to go camping. He is not concerned a bit with the possibility of disease increase between now and Tuesday. His timing and treatment plan remains the same, though he did ask us to resume Benji’s allopurinol to lower his uric acid, and to be sure Benji is well hydrated. He also left me with a moment of gratitude. He said that a decade ago this treatment option did not exist. It is now the medicine in which we are putting our faith. We must believe it will work. We must expect a smooth infusion and as low a cytokine release as possible. The fact that the medicine is engaging Benjamin’s own cells to do the work is encouraging. I can put my faith in him. I know how to do that well.

We drove through the sunset and arrived at our gorgeous, waterfront campsite after dark. Benji is tired but oh so happy. The fishing here is supposed to be second to none. There are a million stars in the sky and a cool breeze in the air. On the way here, Benji said, “I think you guys picked the perfect time to go camping.” Yes, love. We think so too.

6 thoughts on “Day 666/38

  1. Sweet friend, I am sending you all the strength and love possible. Brave Benji, we all have faith in the healing power of your cells. Stay strong.

  2. The Make a Wish Foundation gift sounds amazing! Also, I’m impressed that Michael can drive such a large vehicle. Banyan is growing so tall. My thoughts are with you for the next phase of treatment.


  3. Oh baby. We are lighting all the candles for the success of this next protocol. Big love from Miami, always. ❤️

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