Day 28

Goodbye, dexamethasone. Goodbye, third breakfasts. Goodbye, extreme mood swings. I nervously bid you all farewell as we prepare for the next chapter in Benjamin’s treatment.

Tomorrow is a huge day. We head up to All Children’s for blood counts, followed by a lumbar puncture, intrathecal methotrexate (another chemotherapy medicine) and, the biggie, our next bone marrow aspirate. Benjamin will have “sleepy medicine” for these. The results of the aspirate are critical. They’ll be looking for the Minimal Residual Disease (MRD), or a presence of leukemia cells in the bone marrow greater than 1 out of every 10,000 cells. If we get an MRD below 0.01, Benjamin will be considered in remission, he’ll remain on the average risk chemotherapy protocol, and we will exhale for the first time this year.

In order to make Benjamin more comfortable during his Friday visits over the Skyway, I’ve started looking at ways to make t-shirts he can open for port access, rather than take off completely. The idea was conveyed to me by a friend who knows someone that made such a garment for her husband. We had some fun with designs today; Benjamin painted an ocean sunset on one shirt, and we ironed a gold tiger transfer on another. I’ll spend the rest of my evening trying to whip up tomorrow’s prototype, and load up the hospital bag with games, books, and this week’s questions for the oncologist.

Right now, as I toggle between this browser window and ones containing research on the medicines Benjamin will be given in the next phase, there is a party of epic proportions being hosted in my community. It’s a fundraiser I’ve chaired for three years and was co-chairing this year, until Leukemia came to live with us. The wonderful people that covered for me represent so many groups of people in our lives, each of whom has allowed us to care for our family without guilt or worry. We are deeply grateful.

We carry gratitude everywhere with us these days. We are grateful for the medicine that is healing him, though it may hurt his legs. We are grateful for the steroid that has readied him for this next chapter, though it may change his body and mood. We are grateful for the prospect of the word remission, though we know it’s just the beginning.

When she’d hug me, my grandmother used to say, “I love your bones.” Those are the words I am breathing in and out, with gratitude, as I visualize Benjamin’s bone marrow aspirate tomorrow.


11 thoughts on “Day 28

  1. Re a different t-shirt, once I fractured my right wrist and had to wear a metal contraption, part of which was drilled into my wrists, so that wrist and arm didn’t fit into sleeves of anything. I went to a tailor who put in a seam with a piece of material in each sweater or dress and that worked. You might try a tailor or seamstress. I can recommend the seamstress I use who comes to my home. Email me at my email address if you want this info. Love!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  2. May tomorrow come with answered prayers and good reports! Love and strength to you all. May God be present with you….

  3. Our thoughts and prayers are with you tomorrow and join your grandmother when she said I love your bones!” What a wise lady! You never know when something said in the past comes back with renewed meaning.

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