Day 743/115

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Our path looks much more clear today. The National Institutes of Health considers Benjamin a viable candidate for their CAR-T clinical trial targeting the CD22 protein. It’s such a relief to write these words. I feel like I can exhale for a minute.

Benjamin woke up at 4:30am in pain and needed a hot bath. The relief was quick and effective. Michael took Banyan to school so that I could stay with Benji, and we slept until almost 9am. He felt comfortable when he woke up for the day. We enjoyed a quiet morning. He was watching one of our favorite movies (Matilda) when Dr. Oshrine called just before noon. I took a deep breath.

Dr. Oshrine said he had gotten the results from NIH and discussed everything with their team. The flow cytometry of Benjamin’s latest blood sample showed a “dim to moderate” expression of CD22 protein on 98% of Benjamin’s leukemia cells. It’s not perfect, because the protein isn’t present on 100% of the cells (which we knew) and it isn’t a strong expression. But it’s there, on a vast majority, and for this reason Benjamin is being considered for the trial. Interestingly, the cytometry also showed that the expression of CD19 is even more heterogenous now, meaning there are more negative populations than there were before. Our choice was clear. Dr. Oshrine spoke with conviction. The NIH trial is our best option to get Benjamin to transplant.

NIH gave Dr. Oshrine a timeline of 3-4 weeks before Benji could come to their facility for apheresis. In the meantime, Benjamin will have a lumbar puncture on Tuesday with intrathecal methotrexate, and to make sure the leukemia hasn’t infiltrated his spinal fluid. Then on Wednesday, Thursday and Friday, we will return to our friends at the Infusion Center for intravenous Cyclophosphamide and Etoposide to keep the leukemia at bay until our departure.

I asked Dr. Oshrine if anything would prohibit Benjamin from being eligible for the trial. He said that a plethora of things could potentially make him ineligible, including infections or organ toxicity, both of which Benji is at risk for every time he undergoes chemotherapy. But Benjamin has tolerated everything so well so far. Dr. Oshrine said that Benjamin has been “solid as a rock.” We have no reason to expect anything different now.

We can’t make travel arrangements just yet. Dr. Oshrine and NIH ended their conversation with an agreement to touch base in two weeks, after Benjamin’s next round of treatment has taken effect, and probably after another flow cytometry is collected. When I hung up with Dr. Oshrine I emailed the physicians at NIH and thanked them profusely for their consideration. I think I sounded a little too grateful. One of the lead physicians called me and made sure I knew this was not a definite enrollment. Their timeline of 3-4 weeks isn’t only logistical, it’s because they want to give Benjamin even more time away from Inotuzumab to make sure it doesn’t continue to dampen his CD22 expression. Right now, nothing is making Benjamin ineligible. But if a flow cytometry in two weeks shows a stronger CD22 negative population, they may reconsider. I told her I understood all of this completely, but we were grateful nonetheless. Yesterday, we didn’t know this option would be on the table. Today, it is our clear choice. And we can move forward.

Before I told Michael or any of our family the news, I asked Benjamin to pause Matilda and told him we had a plan. As soon as I said it looked like we were going to NIH, he started to cry. It was such a different reaction than the gratitude I was feeling that I think I actually gasped. He was crying because he knew this meant he’d have to have another catheter placed for apheresis. Of course. I told him that sometimes I forget to look at things from his perspective. I stopped the rest of the plan and we talked about that part of it for a minute. I asked him if we learned anything from the first procedure that might help him through this next one. He said that the removal of the catheter was the worst part, so we decided to ask about some local anesthesia. Just this little decision calmed him down. I wish we could use the cells we collected here, but we can’t–it’s a hard and fast policy at NIH and we have to accept it. I told him that of course it’s okay to be upset, but asked him to try and also feel thankful for this new plan, because it is clearly the best option for him. He’s just being asked to do yet another really hard thing. I know it’s got to be mentally, physically, and emotionally exhausting. Good thing he’s solid as a rock.

I told Benji the rest of the plan, including what next week will look like, then shared the news with our thankful family. Benjamin and I completed a decent amount of schoolwork then went out to run a couple of errands. Our adventure was cut short. When he feels well, he wants to do so much, but when he starts feeling pain again, his need to be home is urgent. This pattern continued for the rest of the day. Pain medicine, then playing with friends. Feeling awful and taking a nap, then riding his scooter and tossing the football in the street. Vomiting, then happy and hungry. We’re following his lead.

There are still so many things that must fall into place before Benjamin receives CAR-T cell therapy at NIH. But we have a plan, and the choice was a clear one, and I am so, so grateful.

10 thoughts on “Day 743/115

  1. Laura,

    So glad to hear this news! Continued prayers for strength and I am looking forward to your post in four weeks that you are on your way to NIH.

  2. Oh I just love this picture of Benji tossing the football and living outside the hospital. So happy that things are starting to take shape as far as his plan goes. We will be in clinic on Tuesday as well. Hope to see you and give you a BIG hug!

  3. Yay! Being considered is the first step and the door has definitely opened!!! Let’s hope that the next few weeks continue forward and guide you effortlessly right through that door. Always with you xoxo

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