Day 500

day 500

Day 500. My God, that sounds like such a huge number. In 500 days, Benji has had:

• 1 surgery to place his medi-port
• 3 bone marrow aspirates
• 18 lumbar punctures
• 18 doses of intrathecal chemotherapy
• 60 doses of intramuscular chemotherapy (shots)
• 66 doses of intravenous chemotherapy
• 317 doses of oral chemotherapy
• 153 doses of steroids
• 314 doses of antibiotics
• 19 blood transfusions (platelets and red blood)
• 95 (northbound) trips over the Sunshine Skyway
• 55 nights in the hospital

…and one guitar recital.

Today Benjamin took the stage for the first time with his new instrument and his fabulous guitar teacher. His palms were sweaty, but his nerves were in check. He knows how to do hard things.

Benji was the fifth to perform. His name was called and he walked up to his seat, took a bow, and got into position. He played “Twinkle Variation A” perfectly, and looked mighty handsome doing it. Kathy and Gana joined us for the performance and Gana took this great photo from her vantage point. I was so proud of him, and so proud for him. I hope this is the first of many concerts to come.

We all went out to a delicious lunch after the show, then the boys went home while I grocery shopped for the week. By the time I came home and put everything away, it was quite late in the day. There were only a couple of hours of sunlight left. I had a big pile of laundry to fold and food for the week to prepare and all sorts of chores waiting for me, but instead, we decided to make another beach run with our new paddleboard.

It was a wise decision. The first time I paddled out was a little rough. The waves were higher than yesterday, and I was working hard to keep my balance. When I finally got out past the break point, a giant stingray swam right underneath my board, which was absolutely amazing. The second time I went out, Benjamin joined me. It was a little easier, and we went a little further. He was asking me all sorts of beautiful questions, like where oceans come from, and whether sea turtles follow the sun or the moon. He was an excellent companion. The third time I went out, the waves had died down completely and I was able to go much further out than I had before. I followed the sunset until I couldn’t follow it anymore.

I looked behind me at Michael and Banyan and Benji playing in the water. I looked in front of me at the sun dipping down below the horizon. I looked below me at this amazing gift from my family, and the water beneath it supporting my body. I said thank you, out loud, into this beautiful moment, over and over. It was my fervent prayer. Thank you for this place. Thank you for these people. Thank you for their health. Thank you for this love.

Benjamin was super tired again tonight after the beach. He felt fine when he woke up this morning, which was a relief; but we went to a birthday party just before the guitar recital, and he told me he didn’t feel well there at all. The feeling comes in waves. I believe it’s the steroids. He fell asleep well before it was time to take his medicine tonight. I’ll be waking him up in a few minutes to swallow his Septra and 6MP.

500 days is a long time. Benjamin’s body has been through so much, and there is so much left to go. He has learned how to live this new life with grace and strength. I have learned to coexist with the fear. With thank you as my prayer, I can keep my balance.

2 thoughts on “Day 500

  1. So sorry for your friends loss of her child. Enjoy your new toy because you deserve it. It’s hard to believe its been 500 days, how time flys and so proud of Benjamin and his strength. His strength comes from having the lovely/concerned family he has to support him. Thanks for the posts and picture. Love and Prayers

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