Day 680/52


Benjamin’s path has been made clear, and it leads to Philadelphia.

Our morning began with an encouraging lab report. Benjamin’s platelets would need transfusion, but his white blood cell count came down also, and his blasts decreased to 48%. I thought it was probably just sample bias, but it was still refreshing. Yesterday’s number (80%) felt so daunting. This felt manageable. This felt like good news. Gratitude is perspective.

Shortly after he woke, Benji needed to get up to use the bathroom. When he did I noticed that the dressing on his back from yesterday’s bone marrow aspirate was saturated with blood. I made sure he didn’t get up too fast, but he still very nearly passed out on the way to the toilet. He recovered, but his body was flushed and hot and his skin was as pale as I’ve ever seen it. His hemoglobin was fine this morning, so I suspect it was a byproduct of lying down for so many hours and losing blood pressure through anesthesia. He’s never bled nearly that much from an aspirate either. We knew the needle would have to go deep to collect enough marrow.

Benji’s near-fainting episode left him feeling yucky most of the morning. Our nurse came in and changed his dressing, then delivered a fresh bag of platelets. We watched a movie together while he got his transfusion.

Michael was able to come up after lunch today. He brought a care package we’d received from my cousin in Japan. We had so much fun opening the little things inside. Sarah, Lilye and Lotus arrived a little while later with Jamaican food for us and for the nurses. Michael and I were able to duck out and give a quick interview to a local news station about Sunday’s blood drive and bone marrow donor registry in Benji’s honor.

Even after the platelet transfusion and a second dressing, Benji’s aspirate site still bled. Our nurse ordered a topical thrombin to help coagulate the area. It didn’t work. Finally they requested another blood count, and his platelets had only risen from 7,000 to 10,000. Another transfusion was ordered for this evening.

Michael and I wanted to be sure Benji isn’t experiencing platelet refractoriness. While we were talking about it with the nurses outside Benji’s room, Dr. Mayer joined our small group with a large stack of papers in her hands. With Benji cared for and entertained, we took a walk with her and our nurse practitioner. We knew Dr. Mayer had the aspirate results. She asked us to follow her into a closed conference room. Michael and I both sank a little. We’ve been on enough walks to closed rooms. We don’t like them.

Our spirits soon lifted. Yesterday’s aspirate revealed the same kind of leukemia cells that have always been there. They are a resistant bunch, but they have not mutated. They are all still CD-19 positive. This means that Benji is indeed a candidate for the CAR-T cell therapy trial, and that we are going to Philadelphia, where the trial was born.

Dr. Mayer said that the plan was to end the Blinatumomab today. The immunotherapy had targeted Benji’s cells, but it wasn’t effectively killing them. It may have even been eliminating other healthy cells. Once he’s been off of the Blinatumomab for 24 hours or so, they will begin a five day regimen of chemotherapy that will keep the leukemia at bay until we can mobilize to Philadelphia. The chemo will be cyclophosphamide, which Benji has had before, and Etoposide, which he has not. Cursory research has told me that neither of these are in conflict with his CMMRD. Dr. Oshrine wrote the orders for this chemo and I am confident he has conducted all of the proper checks and balances, genetically speaking.

The five day course of chemotherapy here will drop Benjamin’s counts, making him susceptible to infection and to many more transfusions. It could also make him feel pretty badly. But it will buy us the time we need. Dr. Oshrine already emailed us the approval from CHOP to welcome Benji to the program. Now we just need to send them his medical records, whatever slides they need, and set up his initial appointment and T-Cell harvest.

Of course we’re anxious now to buy plane tickets. Dr. Mayer warned us not to expect to fly up there in a week. She said sometimes initial appointments can take more like three months to secure. Michael and I looked at each other and smiled. We’ll get this part taken care of. He’s been waiting for something like this to tackle.

Another piece of encouraging news from the aspirate was that Benji’s bone marrow is only 70% infected (again, perspective). We really expected a higher number. I like being able to focus on the healthy cells that are still there, working hard for the greater good.

We thanked Dr. Mayer for thinking and working so creatively. I thought about Benji’s blood that was sent to Ohio yesterday to test for the newly discovered kind of refractory leukemia. Our nurse practitioner told Dr. Mayer that Dr. Oshrine had ordered the test. Dr. Mayer smiled proudly and told us how highly she thought of Benji’s favorite doctor. We couldn’t agree more.

We got up from the conference room table with everyone hugging, feeling happy and relieved. I noticed the picture that had been hanging behind Dr. Mayer as we’d been talking.  A path through the woods.

Kathy, Gana and Banyan had arrived while we were in the conference. Our absence, combined with the impending removal of Blinatumomab, required an immediate explanation. Everyone left the room except Banyan and Benji. We told them the news, and delivered it honestly. Benji knew he was here because his leukemia had returned. We told him this new medicine wasn’t working, and the medicine he needed was in Philadelphia. We explained that they would remove his very own cells and use them to make a new treatment, and we were grateful that we could go to Philly and get it. He was excited to get to go on a plane, to get his peripheral IV line out, and to eat a Philly Cheese Steak. NO fear.

Everyone else came back into the room and we explained as best we could. We’ll go to Philly for a few days for Benji’s initial consult and harvest. We’ll come back here for the month or so it will take to make the medicine. During that time Benji’s disease will be managed here at All Children’s; whether that will be inpatient or outpatient has yet to be determined. When Benji’s medicine is ready, we will return to Philly for administration. I believe this will be a month or so, but we don’t know exactly just yet. Michael and Banyan will come to be with us as much as school and work allow. Then we will return to our home at All Children’s for Benji’s bone marrow transplant and follow-up care.

We enjoyed burgers and balloon animals with our family, then we said goodnight. Benji received his second platelet transfusion of the day, and his 40th overall transfusion of blood products. His peripheral line was removed, and his aspirate site was redressed again, this time with a pressure dressing that should finally do the trick.

Tonight will be our 102nd night spent here on the seventh floor since Benji’s diagnosis. We know these nurses, doctors, technicians and housekeepers so well we know the names of their children, and what they bring for lunch each day. It will be very strange to go to a new hospital. Benji and I wonder if they will access his port differently, or use the same adhesive remover, or any number of other things we’ve gotten so used to. But we are both excited, and for very different reasons. He can’t wait to get on an airplane and see a new place in the world. And I can’t wait to get him the medicine he needs. I am so grateful we live in a time and place where this new therapy exists. I’m so grateful for a clear path.

7 thoughts on “Day 680/52

  1. Here’s to the Perfect Path… to Hugs, Feeling Happy, Relief and Philly Cheese Steak!!
    Lots of love to you all!

  2. Glad you are in good hands, and his individual situation is a fit for a place with a new option and highly trained people. I hope Benji has a great trip to the city of Brotherly Love. Fitting, huh?

  3. I am so happy to hear you have a new path. This sounds very promising! Continued positive thoughts for your family.

  4. Tell Benji he has gotta try one from Pat’s and Geno’s – right across the street from each other so there is a big cheesesteak rivalry going on there so let us know who Benji crowns superior! I am a fan of provolone over cheese whiz, but, hey, they are all good!
    I’m so glad this path has opened for you and excited that it will lead to healing! Benji will be running up those famous steps like Rocky before you know it!!

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