Day 758/130


Everything seemed to take forever today. I don’t know how much of this is based in reality and how much stems from my own anxiety. Benjamin has received his three doses of chemotherapy, but the first wasn’t hung until almost 9pm.

Benjamin continues to sleep quite a lot. It’s his escape from pain and it’s fine with me; I’m sure his body needs it, and when he’s sleeping, he’s comfortable. I just miss him. He was sleeping at shift change when I saw his labs, indicating that his white count had doubled overnight, and 92% of those cells were leukemia blasts. I wanted his chemo to begin right away.

Benji’s chemo orders were written and ready to go last night. We just had to wait for his scheduled medicines to finish for the morning, opening up a window of time long enough for prehydration and the urine test that would follow. While we waited, the pain team physician came in to check on Benjamin’s support medicines. She’s been following reports of Benjamin’s intermittent moaning and felt strongly that it was time to introduce a patient-controlled analgesia pump (PCA). As much as I hate the idea of him needing one, I agreed completely with the suggestion. I told her I would discuss it with him when he was awake.

Kathy and Gana came to visit today. They stocked my little fridge with treats from home and sat with me while Benji slept. Dr. Grana came in for rounds while they were here. It’s been a while since we’ve seen her. She gave Benjamin a gentle exam and looked so truly sorry to see him in pain. She really is such a kind woman.

Michael spent the afternoon and early evening with us. Benjamin continued to sleep for most of the day. When he woke up, Michael helped me get him comfortable and clean in a nice warm bath. I talked to Benji about the pain team’s PCA recommendation. I explained that it wouldn’t give him any medicine unless he pushed a button, and the button was totally his to control. No one had to ask him if he wanted it and he didn’t have to ask anyone’s permission. He looked up from his bathtub sanctuary and said, “I could really use that right now.” I asked our team to execute the pain physician’s orders.

Benjamin’s urine had to meet specific gravity requirements to begin chemotherapy. We started trying to collect a sample in the early afternoon. The first time I woke him up and asked him to try to pee, he groggily opened his mouth for me–he’s so used to people waking him up with thermometers. Throughout the rest of the day we tested three different samples in two different labs and gave Benjamin two additional boluses of fluid. He was just a hair over the requirement each time. Finally, at evening shift change, the doctor on call approved the specific gravity with certain urine output parameters. It would be two more hours before chemo was hung. At the same time, Benjamin finally received his PCA–more than four hours after we’d requested it.

Throughout these delays our nurses were totally on point, doing everything possible to expedite things and keep Benjamin comfortable. Still, my frustration underscored a deeper feeling that with the decline in Benjamin’s condition, there has been a decline in urgency, or in forward motion, or creative thinking–or all three. I am fully aware that this could be partially if not entirely in my head. Still, Michael and I talked about several points to outline in an email to all parties involved. We need everyone on the same page, now more than ever.

Benjamin held my hand while all three chemotherapeutic agents were running through his veins. May these medicines be swift, safe, and powerful. May they succeed in the job they were sent to do: offer Benjamin relief and reduction of disease for long enough so that we can get to Maryland without delay. We are so close.

11 thoughts on “Day 758/130

  1. Yes…… meds were sent to heal
    I see them working like an eraser
    Maybe it’s just the weekend crew….
    Just a little less invested… you know … just like his wacky
    labs on the weekend
    I Believe…..❤️

  2. The waiting is always the hardest part. Our minds have so much time to think while we wait. Sending healing thoughts and love ❤️

  3. My heart aches that Benji is in so much pain. He is in my daily thoughts and prayers. Sending hugs!
    Amy Pedler xoxo

  4. Sweet family, sending you strength, and hope, and love ~~ and prayers for a return swift attentive creative input from all your best problem solvers. <3 Such a different place than a few months ago when we you all last. He has pulled out of some scary stuff before. NIH, transplant, the road is long and I hope you are on it soon. I hope he gets onto the next phase, and you get to revel in a head full of golden curls on a healthy boy again real soon.

  5. We continue to pray daily that you each find your inner strength & peace & that the meds work well for Benji so that he can get to Maryland for his transplant!!!

  6. Big Hugs… In Awe of you and Benji’s strength. Praying the medicine works quickly and perfectly.
    So much love for all of you.

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