Day 757/129


Benjamin was sitting on the toilet at 3am. He had just vomited and the basin was still full at my feet. His head rested on my belly while I held the tubes for his IV fluid and liquid nutrition up off of the floor with one hand, and scratched his back with the other. We were both exhausted after a late night fever brought nurses to our room at 1am to do a port culture, but Benjamin was exhausted in a way I can’t possibly understand. Both pumps were beeping, and the whirring of the liquid through the tubes was deafening, suddenly. I was spinning in the energy of it. Everything just felt so awful and so surreal. How did this happen.

Benjamin was feeling it too. As I was helping him get back into bed, he asked, “How do kids with cancer die if air is still going through them?” I had never felt my stomach drop so quickly. He turned a question I’ve been dreading into one that was so beautifully him, so mechanical and pragmatic. I answered honestly. I really don’t know. He nodded quickly, letting me know that my words were enough. Everything’s gonna be okay, I said again, quietly. He nodded again, with an expression that said, I know, Mom.

Benjamin’s fever was short-lived, and his cultures came back negative. He only needed supplemental oxygen at the beginning of the night. Still, we slept with the monitors on. He woke up in pain at sunrise and asked to take a bath. He used to take so many; now, the feeling of getting up from the bathtub makes him feel so terrible, he sacrifices the comfort of the warm water more frequently than he accepts it.

I waited for shift change before joining Benjamin back in bed. His white blood cell count declined a little, to 3600. He has zero neutrophils right now–no immunity. All other numbers held steady. I was grateful for the lower white cell count, but I know that the leukemia cells that have infiltrated his organs aren’t reflected in that number. We have to act more quickly now.

Dr. Metts proposed a solution during morning rounds, after discussing Benjamin’s case with Dr. Oshrine last night. Their roadmap includes a triple-agent chemotherapeutic approach, using medicines Benjamin has seen before and tolerated well. Tomorrow he will begin this regimen with Cyclophosphamide, Vincristine and Cytarabine, and he will continue the Cytarabine daily through Tuesday.

I sent Dr. Metts a couple of articles I’d come across recently describing patterns of chemotherapy resistance in people with deficient mismatch repair genes. These were compelling, but not enough to change course. I reminded myself that Benjamin responded well to these medicines together twice before; during Consolidation and Delayed Intensification. I have to trust their recommendation and hope that this combination works quickly and effectively to target the leukemia in Benji’s organs as well as in his marrow.

The palliative care team came in to check on us this morning and to adjust Benjamin’s support medicines to offer him more relief from pain and nausea. Benjamin was in significant discomfort and was moaning intermittently while they were here. They tried to encourage him to take breakthrough medicine, but he wouldn’t do it. He was afraid that anything “extra” would make him vomit again (even if it was designed to do the opposite). We agreed to increase the strength of his Fentanyl patch and reduce the interval of time between Phenergan doses. The changes were’t put into play until early evening, but they seem to be working.

Sleep is Benjamin’s most effective escape from discomfort. After refusing the breakthrough medicine, he closed his eyes and rested again, holding my hand. In the quiet, I thought about the cryopreserved T-cells Benjamin already bravely agreed to harvest. I understand the value of clinical trials, and why it is so important that they be conducted by stringent standards. It just seems so unfair that the cells we need to heal our boy are already collected, just sitting in a vault somewhere at Moffitt, not being used. It feels like a colossal and tragic waste of time.

Benjamin attributed some of his nausea to the Pediasure flowing through his feeding tube. It has a fake, powdery smell, like vanilla cardboard. The term the nurses use to describe it is “the feeds.” It sounds like something from a zombie movie. I was determined to find a better alternative. After several recommendations from friends and other mothers with children who have had feeding tubes, plus a little online comparison, I decided on Liquid Hope.

I asked for a consultation with the dietician on staff to ascertain the best way for me to get the new formula. He was very little help, bless his heart, except to say that the company wasn’t on the hospital’s vendor list. I would be better off ordering it myself and having it approved, which he said would be no problem. I ordered six pouches and expedited shipping. He did say that in the meantime, they had access to a formula called Compleat that was derived from real food. He said that if it were his kid on the feeding tube, he would give him the Compleat over the Pediasure. Well then why didn’t you give it to Benjamin in the first place. We made the change today, and look forward to trying the Liquid Hope when it arrives next week.

Sarah and Lotus came to visit today on their way to an art festival in Sarasota. Benjamin slept for much of the time they were here. The best he felt all day was after an afternoon emesis; he was awake and alert and comfortable. It only lasted a few minutes, but he was happy to spend those minutes playing a game on his phone with his cousin. When it ended and he needed rest again, I joined him for an afternoon nap.

Banyan stayed home from school today. The boy rarely gets sick, and when he does, it passes quickly. Michael stayed home tonight to take care of him and hopefully stave off catching a cold himself. As much as we all want to be together, we have to protect Benjamin’s immune system right now at all costs. We expect to be reunited this weekend.

The outpouring of love and energy from our family and friends has been uncesasing. Collectively it continues to carry us in and out of these strange and difficult days. I am grateful that Benjamin will receive medicine tomorrow that might offer his organs some relief. I can’t wait to see his sparkle again. 

Everything’s gonna be okay.

I know, Mom.

16 thoughts on “Day 757/129

  1. We have been unceasingly frustrated that the hospitals only carry “fake food” formulas from the big names like Nestle but not the real food blends. It’s infuriating and makes me guess Big Money is more at play than the real health of patients. Grrrr. So glad you have Liquid Hope coming, but hate that this is ONE MORE THING you have to manage when it should be part of your medical support team.

    Big love to all of you. ❤

  2. we don’t weigh in often but wanted to say that as always we’re following your journey, praying and sending strength as best we can. peace –

  3. Will stop and see your sister at the art fair on my walk today. Thinking nothing but healing and love for Benji.

  4. You will see his sparkle…….
    Just has a little tarnish on it right now
    Love and prayers
    I Believe…..❤

  5. We are so impressed by your love and strength. Know that we are sending love and praying for a miracle.

    Isaiah 66:12-13. For this is what the Lord says: “I will extend peace to her like a river, and the wealth of nations like a flooding stream; you will nurse and be carried on her arm and dandled on her knees. As a mother comforts her child, so will I comfort you: and you will be comforted over Jerusalem.

    Philippians 4:13 I can do all things through Christ who strengthens me.

  6. I attended a prayer meeting this morning and we prayed for Benji and Laura especially – but the whole family. A verse came to mind as i read this post – 2 Timothy 1:7 For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.

  7. Benji is such an amazing lad….takes after his Mother and Father & all the Gilkey clan….super strong, with an enduring love and patient spirit….God Bless you–we continue to pray for peace & strength for you all

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