Our intention was unmistakable. A clear path toward Benjamin’s perfect healing. Today we heard the words “no clear path,” and “imperfect options.” I realized today that we aren’t waiting for a path to appear before us. We are already on it. With every decision, every appointment, every blood draw, every heat pack, every vomit and every bath in the middle of the night, we are helping Benjamin find his way over and under and through the obstacles of this path. It is not a clear one, and it certainly isn’t perfect. But it is ours, and we will take every step with love.
Michael, Banyan and I got ready quietly this morning and let Benjamin sleep in as long as possible. His spleen hurt when he woke up, and he was nervous about the day. We gave him Kytril and put numbing cream on his chest, then took Banyan to school and hit the Skyway. Benjamin was still tired. He slept in the front seat. I was so distracted I nearly forgot to take a photo of the yellow bridge cables that we have documented at every passage.
We waited quite a while in the clinic today. My stomach was an absolute wreck. When we finally got back into the exam room, I saw a letter on the counter from Dr. Oshrine. It was the one we need for Benjamin’s school to keep him enrolled in the hospital homebound program. It was very thorough, and it made me a little sad. We encourage all of our patients to remain active in their pursuit of education through the entirety of their treatment. I hope to return to some schoolwork tomorrow. We had to cancel a visit from Benjamin’s teacher yesterday because he felt so poorly. He is so bright, and I know he’ll catch up as soon as he’s ready.
Benjamin thoughtfully asked our nurse if he could just have a finger poke for his CBC, and only get his port accessed if he needed platelets. The answer, much to his relief, was yes. I asked her if Dr. Oshrine had discussed possible treatment today, as that would require accessing; she said she wasn’t aware of the specifics of the plan, but she knew he only wanted a CBC drawn for now. We weren’t sure if we’d see our number one doctor today. Our appointment was with a physician’s assistant. We were so grateful when Dr. Oshrine walked in with her. At this point, there is no one else in the building that truly understands all of the nuances of Benjamin’s care, nor anyone who has invested nearly as much time in finding opportunities for his treatment.
Dr. Oshrine told us that he didn’t have the results back from NIH, but that he expected them later this afternoon. He said that in the meantime, he’d been contacted by CHOP, who had conducted a meeting about Benjamin’s case. They reviewed everything with Dr. Oshrine and offered Benjamin a spot in their CAR-T clinical trial, but not for CD22–for CD19, the trial he was initially ineligible for. This came as a complete surprise to all of us, Dr. Oshrine included. Their rationale was that they could see from Benjamin’s most recent bone marrow aspirate that he has populations of both proteins, and they know that the CD19 trial works. CD22 is so new at their facility that they aren’t as confident in the results, even though Benjamin has a stronger density of CD22 than CD19.
If the peripheral blood sample we sent to NIH turns out to have enough of a CD22 positive population to make Benjamin eligible for that study, Dr. Oshrine is still leaning toward recommending that option. NIH has been conducting the CD22 study for a longer period of time and feels more confidence in the study. But the CHOP offer made things more nebulous. Throughout the day, we have learned to see this news as a positive development. It gives us another option, which gives us more hope. But the words Dr. Oshrine used and the tone in which he used them were hard to swallow.
Up until now there has always been a clearly preferable direction we should take. Dr. Oshrine could recommend a course of treatment with total conviction. But now, there seems to be a fork in the road. We know that there are populations of leukemia cells that are negative for each of the proteins we’re looking at. Whichever trial we choose, we will do so with the knowledge that there is a population of cells that will not be targeted, and that will probably proliferate. We must find a way to reduce those populations as well. Unfortunately, participation in one CAR-T trial typically excludes someone from participating in another. A multi-protein approach would be ideal, and is probably reasonable in immunology’s near future. But it’s not an option now.
The ultimate goal is still bone marrow transplant, which Dr. Oshrine cannot execute in good conscience until Benjamin’s marrow is less than 1% infected with leukemia. His last aspirate showed 44% infection. That was more than two weeks ago. We know it’s higher now.
This fork in the road assumes that Benjamin is eligible for the trial at NIH. We don’t know this to be true yet. We did not hear from Dr. Oshrine again today, so we can assume he doesn’t have enough information to relay to us. I expect a phone call in the morning. He knows how anxious we are and he certainly knows that Benjamin needs treatment very soon. Benji’s blast count today had essentially doubled since Monday, explaining the pain in his spleen. So many leukemia cells trapped there. His platelets and hemoglobin are holding very steady though, which is a major blessing. We discussed the possibility of a lumbar puncture to treat Benjamin’s cerebral spinal fluid and rule out any leukemia in his central nervous system. With the current platelet count Dr. Oshrine agreed this was a good idea, but we have to wait until we decide on CHOP vs. NIH, as they will have recommendations for timing. Benji’s absolute neutrophil count increased even more since Monday, so we can discontinue the antibiotics he’s been on for so long. Hallelujah. I am so ready to give his belly a break.
I was deeply thankful for Michael’s clear headed presence today (and always). He asked questions that I wouldn’t have asked, and got to the heart of the matter of the protein-negative populations of cells. He and Dr. Oshrine also discussed Benjamin’s polyps and the viability of a potential scope during his next procedure. Platelets permitting, this can be done. We all discussed Benji’s continuing stomach pain. Dr. Oshrine thinks it is most likely a result of Benji’s enlarged spleen putting pressure on his other organs. I hope he’s right.
There have been no more vomiting episodes today, thank goodness, and Benji ate breakfast, lunch and dinner. He slept on the ride home, his bald head beading with sweat. He spent his afternoon in ebbs and flows, moments of pain and restfulness and moments of activity and enjoying what he loves. He played baseball in the street again today. This time Michael was his pitcher, and he hit home run after home run. Later, after Banyan came home, we went back to our spot on Lido Beach and let Benji cast out a few lines at sunset. After each activity, Benjamin’s body hurt badly, but he knew just when to walk away.
As we left the beach with the sunset behind us, Benjamin was holding his spleen with tears running down his face. I told him (for the millionth time) how proud I am of him. He was brave enough to try, and brave enough to stop. Those are two hard things to do. I told him that I know how tough he is, but that it sucks so bad that he has to go through this. I told him that every night I try to imagine what his body must feel like, but I know I can’t come close to understanding. I told him I was so sorry, and so, so proud.
11 thoughts on “Day 742/114”
So so sorry, and so so proud…I’m in on that too, for all 4 of you. I love you.
You are all brave, and we are all proud.
Month is not over yet, hoping the clearest path to perfect healing will still present itself.
Hoping for news from NIH to set a path for Benji.
So so proud of all of you ❤
You all have so much amazing strength. I am proud of you all. Sending Love and Prayers
If I could take his pain I would
If the courage between the four of you
could be bottled…. Oh my
Love and Prayers
I awoke very discouraged this AM – no particular reason – then i read about Benji as I do every day and properly beat myself up for such a stupid attitude – thank you Benji for being such a great example even to an old man like me – i am praying for you every day.
Always proud of you all. Count me in to walk the path with you all. Love and prayers.
Continuing to pray for you all everyday…you are so amazing, strong and brave…and I think, an inspiration to others going through similar heartache—God Bless you all. We love you! Benji is in our hearts and prayers daily…