Day 93

Home is my happy place.

I had a lovely time last night, but I woke up this morning excited to spend the evening at home with Michael and our boys. We usually head north to Michael’s grandmother’s house for Easter festivities. While I will certainly miss her, and our extended family, and the wisteria and dogwood blossoms, I am feeling super grateful to be able to host an Easter meal here at our home. I am ready to celebrate healthy new growth, rebirth, and new beginnings.

We brought Benji with us to Banyan’s second basketball game today. We kept our distance from folks we didn’t know well enough to ascertain their health status. Banyan’s team was again victorious and we had a great time. Grammy and Noni joined us for lunch afterward at the venue where the “Bags for Benji” Cornhole Tournament was held a few weeks back. We scoped out a table outside, away from everyone, and wiped down the surfaces. Hands were washed and sanitized many times. We said no to the germ-y arcade and putt putt golf course, but allowed the boys to drive a bucket of golf balls out into the spring air.

I have such mixed feelings about our new reliance on hand sanitizer and antibacterial hand wash and antibiotics. I am convinced that the evolution of so-called “super bacteria” is a direct result of our overuse of these products. And now I have no choice but to use it all the time, thereby contributing to the problem. I was just reading today about another new stomach bug that is resistant to antibiotics. Super. Bacteria scares me right now at least as much as leukemia does, especially because Benji’s resistance to it is nearly nonexistent right now. And, if I’m being totally honest, it scares me because it’s somewhat within my control. We are making choices and compromises. We are protecting him without putting him in a bubble; he continues to feel so energetic and strong and active. But somewhere, on one of these surfaces we are wiping down, or deep within his gut, or resting innocently on his skin, there could be a bacterial culprit that lands us in a dangerous situation. We just have to continue to trust, to follow our instincts, and mainly, to follow our boy.

We know that the Cytarabine that Benjamin endured for two weeks is working. Tonight, he asked Michael for back scratches. This is a nightly request. After just a minute or two of scratching, petichiae erupted all over Benji’s back. This is a sure sign that his platelet count is dropping. According to the physician’s assistant we saw Thursday, this current chemo cocktail will make Benji’s absolute neutrophil count (ANC) drop faster than his platelets or hemoglobin. So, our guess is that his immunity is effectively gone already. Transfusions may come sooner than later. We choose gratitude over fear. We’re thankful that his body is doing exactly what it is supposed to do right now.

After a monumental pre-Easter grocery run, I settled into our cozy nest for the night. The boys have been watching basketball while I’ve been preparing food and boiling eggs for tomorrow. A lemon ginger bundt cake is in the oven for tomorrow’s breakfast. A leg of lamb is seasoned and waiting to roast for dinner. The boys have set their Easter baskets outside for the bunny to fill. We’re all home, everyone is happy and strong, and I couldn’t be more grateful.

5 thoughts on “Day 93

  1. sending strength to the immune system and protection! can he take probiotics? keeping the gut, where most of our immune system is, healthy. great foods you are making. that is so very important. same with me. I know the transition to using these products is hard. ❤️

  2. Miss you all so so much!!! But I’m thankful that b has you and Michael to protect, love, and guide him through this journey. Please give both B’s big hugs and a big “Happy Easter” as well!!! <3

  3. What a blessing to hear even if u guys couldn’t make it up this year to see us! Missing u guys lots but hope all keeps going well for our big strong man & God gives his parents the extra strength to make it through this. Happy Easter along w/ hugs, kisses, love, & prayers!!!

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