Day 45

Benjamin continued to feel wonderful today. Our only “side effect” of leukemia was behavioral; six weeks of indulgence and attention, not to mention four weeks of steroids, can occasionally result in some less than stellar manners. I posted about some of his more impolite streaks in the moms’ group I’ve joined, and was answered with dozens of comments validating my concerns. Things will normalize (and luckily, his sweet moments far outnumber his spicy ones). One piece of advice that stuck was given to a mom from her nurse: “You’re the same parents, and he’s the same child. Treat him that way and forget the cancer.”

On weekends like this, it’s a bit easier to “forget the cancer,” at least for a little while. Benjamin felt so good that I think I truly relaxed for the first time all year. Michael’s mother and sister brought us a gorgeous Valentine’s meal with flowers and sweet gifts. As we ate, Gana told a story about a recent dream she’d had. It made me recall a dream of my own last night, one in which Benjamin woke up with bruises all over his body. I could see the bruises darkening in my dream. I didn’t share this at the table, but told Kathy privately in the kitchen as we cleaned up. She called it a nightmare. It was, of course, but I hadn’t thought of it like that–I hadn’t woken up suddenly, no cold sweat, no terror. It wasn’t a premonition. Just a sinking pull back into reality.

The dream started to make sense as I walked (and ran a little) over the Ringling Bridge at sunset. Benjamin has to wait two hours after eating to take his nightly chemotherapy. I looked at the time at the top of the bridge, and texted Michael with the go ahead to give the medicine. Michael called me back, because he’d noticed that the pill compartment for Sunday morning was still full. I panicked. I thought I remembered Benjamin taking his Septra this morning…or did I? What cup did he use to drink from? Was it before breakfast or after? I retraced my steps. I know for certain I came home last night and filled the pill box for the week, beginning with Sunday. I asked Michael if Saturday morning’s compartment was empty. It was. Relief–of course Benjamin took his medicine this morning, we just pulled it from the wrong compartment. But it was a wake up call, and last night’s dream was translated clearly.

I have to learn how to relax without feeling like I’m slipping on Benjamin’s care. The two must be able to coexist. The rest of my bridge walk was far from the meditative “church service” it usually is for me. I kept a fast pace, calculating everything in my head for tomorrow’s trip to All Children’s–Benji’s morning without food, a checklist of items for the hospital bag, questions for the doctor, remembering not to include too much Vitamin C in his post-procedure meal. I came home and packed my bag and my binder, preset the coffee, and mixed up a new batch of detox bath. I’ll take one of those myself before bed, with tea.

Tomorrow begins Week 2 of Consolidation. Banyan has Presidents’ Day off from school, and all four of us will rise early to cross the bridge in the morning. Benjamin will get his first dose of Cytarabine for the week, then get “sleepy medicine” for his lumbar puncture with Intrathecal Methotrexate. Back to reality. Back to strengthening. We will find the balance, together.

7 thoughts on “Day 45

  1. Your doing simply amazing Laura, such an inspiration. I’ve asked myself so many times if I could be as composed, as organized, patient, proactive, diligent, bright & positive as you’ve been. I am learning so much about gratitude and strength via your family’s journey.. Benji is in the best hands ❤

  2. You’re amazing, Laura! You’ll say anyone would do it for their child and you’re probably right, but don’t let that diminish your work right now <3

  3. I wondered what happens to children whose mothers and fathers and their families and friends aren’t as extraordinary as the Gilkeys are, which really applies to all of the rest of the world. I shudder to think.

    Love,
    Sonia

  4. Fierce warrior Laura – you are at the helm – steering, navigating, checking longitude and latitude. Breathe in the salt air of relaxation and peace. I wish you beautiful moments of true calm and light. Love you. Keeping the vigil of prayer that Benji’s procedure(s) and all treatments go well this week.

  5. You guys are handling everything just fine. Everyone is so strong handling this strange period life has given you. Praying next week you will have peace and comfort. Love you guys.

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