Day 33

Tom Petty said it best. The waiting is the hardest part. After two rescheduled phone meetings tonight, we learned that our oncology team is still awaiting the results of Friday’s bone marrow aspirate. We are supposed to receive them sometime in the morning.

The energy surrounding this news has been very interesting to experience. We remember the happiness we felt when we learned that the Day 8 Minimal Residual Disease (MRD) in Benjamin’s blood was 0.3. This was a great number for Day 8, but we didn’t know that until the moment they told us. We had no expectations–no framework for what was a good result, or an unfavorable one. We just knew that our oncologists were happy, and that after one week’s treatment, our boy’s blood went from 79% infected with leukemia blasts to 0.3% infected. That felt like a huge victory. Since then, we have easily held the expectation that his treatment would continue on this successful trajectory.

Holding on to this expectation becomes a little more precarious with each rescheduled phone call. Michael and I hold our breath when the phone rings with the St. Pete area code showing, but after the call, there’s no exhale. There’s just more waiting. We’re so focused on one number–one tiny, tiny number–that I fear we are placing more negative energy on this result than we should be. I couldn’t get to sleep last night, and I know I can’t let that happen. I miss living with the expectation of ease. I am trying hard to reclaim it. We have no reason to believe we will get bad news tomorrow. In fact, we have solid ground to stand on in our forecast of remission. The medicine has done its job beautifully to this point. For the last few days, Benjamin has felt really good, a majority of the time. His body is strong. Perfect blood. Perfect bones.

During the waiting, we continue to research. After a fun and productive morning of homeschooling, I made Benjamin a list of his “Super Foods,” a culmination of this month of nutrition study. We taped it up by the refrigerator so that he can check his cravings against the foods that feed his blood or fight his cancer. I also spent some time searching for ways to gently detoxify the body from a long stint on steroids. I naively expected the effects of the dexamethasone to just gradually wane. I didn’t take into account the significant withdrawal people usually experience after stopping this drug. There is more time between Benjamin’s requests for food now, but the requests are urgent, and emotional. There is extremity in his mood swings as well, both the highs and the lows. He feels badly after a patch of irritability or anger. We make sure he knows that we understand these patches aren’t him. We are thankful for this medicine that is doing its job, side effects and all. We remind him to use kind words, and we move on.

My sister and nephew played hooky today and came down for a quick visit. It was so nice to have them here. Benjamin laughed a LOT. It was the first day I can remember since diagnosis that he hasn’t needed a nap. Aunt Sarah is an art teacher, and brought some beautiful liquid watercolors. They painted bright rainbows and starry skies. Benjamin’s eyes sparkle when he’s being creative. We scooped Banyan up early, and the boys enjoyed a gorgeous afternoon playing outside with our wonderful neighbors. Grammy and Noni brought over another delicious meal to share with us. We are loved, fed, laughing, learning, playing, and making art. We have so much to be thankful for.

9 thoughts on “Day 33

  1. Sounds like everyone had a great day. Coming off steroids is very emotional. When they try to lower mine I tend to be very emotional. Crying and sometimes being very argumentive.

  2. That rainbow painting sure is a beauty..just like that smile! Good news headed your way tomorrow…..
    *perfect bones, perfect blood*

  3. Laura, as we mentioned we read every night your blog to the kids; sometimes at dinner time and sometimes at bedtime. Tonight it was at bedtime. Mateo and Esperanza were with the lights off and I read it to them. Once we finished they both asked questions and we talked. After that we all thought about Benji and his beautiful bones and sent him all the love and positive thoughts he needs now. With much love, The Cubillos family.

  4. Mel Brooks at 88 had a wonderful one-hour comedy show on HBO a few days ago. One of the songs he sang, which he wrote, was “Hope for the best; expect the worst.” Not a bad motto for life.


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