Day 759/131


Rhythm. A word and an idea I’ve always loved. Tonight, our rhythms feel very off. I’m listening to Benjamin breathe through an oxygen mask while he sleeps. His breaths are short, staccato, labored. He has a fever and his resting heart rate is entirely too high. He got a chest x-ray just before midnight, and I know what it will show–his lungs are being crowded by his overflowing organs. I should be planning to sleep soon, but I can’t stop staring at the monitors.

Last night, Benjamin was given lasix to help empty his bladder and restore his fluid balance. We were up every hour to pee. At 4:45am he agreed to push his pain button, releasing a very low dose of Dilaudid into his port. At 6am he vomited. The two events were not related, but he connected them, and was reluctant to press his pain button for most of the morning. I was relieved when he agreed to use it later and realized it did not make him sick; since then, the PCA has been an empowering tool, allowing Benjamin pain relief on his own terms.

The morning lab report showed another near doubling of white blood cells. I reminded myself that yesterday’s chemo may take a few days to work. Also, the lasix removed any excess hydration from Benjamin’s body last night. This morning’s blood draw was conducted with a far less dilute sample. I know all of the factors at play, but I’m still so ready to see that number come down.

My dad and stepmom have moved from Alabama down here to Florida. In less unusual circumstances this news would have taken center stage over the past week. They were able to visit today and be home in an hour, rather than twelve. Benjamin slept through most of their visit. It was really nice to sit with them. It’ll be much nicer when it’s not in a hospital room.

Benjamin really misses Banyan. He asks me to FaceTime him, even though he doesn’t want to be on camera; he just wants to see his brother’s face, hear his voice, his laugh. Banyan has dutifully steered clear for several days to avoid passing along his middle school cold. We hope to see him tomorrow. I miss him too.

Michael was able to spend the afternoon with us. While Benjamin slept, Michael worked, and I drafted an email to Dr. Oshrine. Reading back through it now, it sounds a little ridiculous. But we have to try everything we can. We have to make sure every option has been exhausted, every avenue explored. We decided to sleep on it and revisit it in the morning.

There have been glimmers of hope today. Benjamin received a platelet transfusion and another dose of chemotherapy and we are thankful for both. He has drank more by mouth today–a good bit of water and a sip of apple juice–than he has in quite some time. He was awake for a little while this evening and played on his phone and even watched a few minutes of television. He is so cooperative with everything the nurses ask of him, never complaining but voicing his concerns clearly and thoughtfully. He has moments that are so him–like the sudden need to know, when waking from a sound sleep, “How do you get to the Statue of Liberty anyway?” These small things have the ability to bring me big joy right now. When he was finished with his window of wakefulness, he pressed his button, and went back to sleep.

Benjamin’s heart rate has increased as the evening has progressed. Last night he only needed supplemental oxygen for a few minutes; tonight he has needed the mask continuously. His fever prompted the doctor on call to switch his antibiotics to offer him different coverage against infection. We are waiting for the results of his x-ray and his port culture and I am constantly watching this monitor, hoping that as his fever breaks, his heart resumes a slower, more peaceful rhythm.

16 thoughts on “Day 759/131

  1. God I hope and pray tomorrow is a better day for you.. I’m envisioning his breath deep and steady. That chemo treatment is working and the leukemia is shriveling up and disappearing as he sleeps.

  2. So grateful your dad and his music are closer to you and Benji now ❤️ Praying this AMs numbers will reflect what the chemo is hard at work doing. You are so so brave Benji ❤️

  3. I’m pained to read this and my eyes burn just thinking about your absolute exhaustion. I’m praying for the chemo to work extremely far and hard. I pray your dads music brings you both peace and joy

  4. Sending you all so much love, Laura.❤. You are in our thoughts and prayers constantly. I love how you and Benjamin scour every corner for answers. You’re both amazing people.

  5. He, you and your family are all fighters. We are so very proud of him and you for sharing this. Your gratitude and complete honesty are inspirations to all who read this. You are in our constant thoughts and prayers. It is my sincere belief that Jesus is very close to both of you. Hold tight.

  6. Wonderful to be with you and steal a kiss
    from Benji’s sweet skin. With y’all …….with every
    I Believe…..❤️

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