Day 756/128


The construction crew of the new hospital research building worked all night long last night, pouring the concrete slab on the top floor. Every time Benjamin woke up to urinate, or something beeped, or someone came in to check vitals, I’d glance outside and see men in hardhats dangling from harnesses or climbing up ladders, silhouetted by the bright construction lights against the night sky. They worked straight through sunrise.

Benjamin’s lab numbers continue to hold steady, thankfully. They were almost identical to yesterday’s. Just after shift change, he woke up and urgently had to use the bathroom. It was a monumental event. I was grateful to have been able to collect a sample to test for occult blood. I wasn’t a bit surprised when it came back positive.

I drew a bath for Benji and let him soak while I cleaned up the evidence, then helped him back to bed. The patient care technician had brought in a scale to weigh him, as she does every day. It was directly on his path to the bed, and it would have only taken a few extra seconds to stand on–but there was no way he could do it. He was begging to lie down. He felt as bad as I’ve ever seen him feel.

The bathroom episode exhausted Benjamin. I settled into bed next to him and held his hand as he fell asleep. Our sweet friend and custodian Thelma came in to say hello, even though we were not on her rotation today. She looked at Benji and said, “The Lord is able. The Lord is able.” A few minutes later a counselor from palliative care came in. She looked at Benji and said, “I’m a believer in the word hope.” I was grateful for the support of these women but they made me wonder–were their visits coincidental? Or did they know something I didn’t? Were the results of the CT scan made visible to others before they were made visible to me?

Of course not. It doesn’t take a rocket scientist to see that Benjamin is in a lot of discomfort, or that his disease has progressed to the point of needing a feeding tube. It doesn’t take a genius to notice that our blinds are always closed now, and that the inhabitant of this room isn’t tearing down the hallways trying to shoot Nerf guns at the nurses anymore. They noticed, and they care. That’s all.

I kept watching the clock, nervous for morning rounds, nervous that Michael wouldn’t arrive before the team did. But he walked in just in time, and he made Benjamin smile–the only smile I saw all day. The attending physician and our nurse practitioner came in a few minutes later, wheeling in their computer to show us the scans.

First, Dr. Metts told us that Benjamin’s cerebral spinal fluid looked exactly the same as it did last week. The plan is to continue to treat him weekly with triple intrathecal chemotherapy to protect his central nervous system. Then Shari pulled up the pictures from the CT scan. They showed leukemia infiltration everywhere. Benjamin’s spleen is twice its normal size now, and his liver is huge. His kidneys, lymph nodes and appendix have also been affected. The images were devastating, and they explain everything he’s been feeling.

Miraculously, Benjamin’s organs are still functioning properly. His kidney enzymes and liver enzymes are still within their normal range. So far, none of this organ infiltration precludes him from eligibility in the clinical trial. The biggest obstacle we have to overcome is time. Dr. Metts and Shari left us with a promise that Dr. Oshrine would be touching base as soon as he had information to share from NIH. They also said that Benjamin would be getting nutrition in his feeding tube immediately.

I climbed back into bed with Benjamin and held his hand again. After a while he unlaced our fingers and moved my hand over his organs, resting it where he needed its weight and warmth–spleen, liver, belly. I pictured his perfect body when he was born, with its perfect organs, all pink and perfect and new. I tried to imagine white, healing, powerful light coursing through his organs now, taking away all that is hurting him. I tried to take the pain myself. I wanted to feel it in my hand, radiating up through my arm and into my body. I tried really hard. I couldn’t feel a thing.

Benjamin slept on and off throughout the day. He doesn’t love his new feeding tube. It hurts when he swallows. We waited all day for nutrition. There is so much beyond our control right now; when things we can control are mishandled, all of my anger bubbles up. Benjamin had his tube placed yesterday, and everyone knew he’d be getting nutrition todayThere is no reason those orders shouldn’t have been written last night, ready for our nurse to give this morning. Instead, Benjamin didn’t get his first batch of liquid nutrition until 4pm. I’m researching alternatives to the rather grossly composed Pediasure, but for now, I’m thankful for the calories. I hope they make him feel much stronger tomorrow.

Dr. Oshrine came to see us in the afternoon. He has been keeping NIH abreast of Benjamin’s progress, and was given a tentative date of February 13th for Benjamin to come to Maryland and begin the enrollment process. With today’s scans showing progression of the leukemia into Benji’s organs, Dr. Oshrine said he was going to contact them again and ask for any possible expedition of the timeline. He emailed me on his way home and said that he’d heard back from them, and the timeline isn’t flexible. It’s a manufacturing constraint. Just like repeating the apheresis at their facility, we have to play by their rules. There’s nothing we can do.

Still, I emailed them as well, and will continue to do so every day. In the meantime Dr. Oshrine will decide on another interim therapy to keep Benjamin’s leukemia at bay. We’re not sure yet if he will receive more of the same agents he’s been getting or something new. There will be many things factored into the decision. Benjamin’s organs must be protected. Once we return from Maryland and the cells have been collected, we will have steroids at our disposal again, which will almost certainly work to reduce Benji’s blast count and relieve his pain.

Dr. Oshrine will follow up with us tomorrow as to when we should send another flow cytometry sample to NIH. I signed more consent forms today and he will finish the package with a medical summary. If all of these pieces fall into place, I’m hoping to be able to make travel arrangements soon. But I’m not getting ahead of myself. One day at a time.

Our primary focus right now is Benjamin’s comfort. He agreed to a dose of morphine for breakthrough pain this afternoon and slept until evening. He vomited only once tonight. I can’t imagine how uncomfortable that must have been with the feeding tube. I held my tears for the millionth time, instead telling him everything will be okay. We put him on a little bit of oxygen to give his lungs a break; they’re working extra hard, being pressed on by his swollen organs. He is sleeping soundly now.

As always, we have much to be thankful for. Despite being infiltrated with leukemia cells, Benjamin’s organs are all functioning properly. His nausea is being more efficiently managed with the addition of Phenergan. He is finally getting some nutrition. Most importantly, the scans did not show us anything that shut the door on the clinical trial at NIH. I am choosing hope over fear tonight.

25 thoughts on “Day 756/128

  1. You are both so strong. May you sleep peacefully tonight and wake up to a better day tomorrow. Sending my love and hope to you.

  2. Jenna has been tube fed since birth and we have had good success with Functional Formularies pre-packaged nutrition (organic) and Real Food Blends. Depending on his tube size, it may need thinned a bit to travel easily with a pump, but hopefully you could use it as-is.

    So much love and light to all of you ❤

  3. The door to Maryland is open. Keep visualizing that door, one day at a time, one step closer…. You are almost there! xoxo

  4. I just wanna hug you both and make this all go away. For every single human being. No cancer ever again. My heart is aching for you all. There is hope in the lord…a strong tower of strength. God be with you and guide you. God hold them up in your palm and heal Benji now in Jesus name!

    Big hugs Laura!!!!

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