Day 246

Benji woke up this morning saying he “hurt all over.” He was teary, and down, and I could tell right away that two hours of school this morning was a bad idea. I asked him to dress in comfortable clothes and prepare for a morning at home.

Before Banyan left for school, I hit the Starbucks down the street–and so began our day of unexpected blessings. The car in front of mine in line at Starbucks belonged to a fourth grade teacher at Benjamin’s school. She paid for our order. After Banyan went to school, Benji and I went to the mechanic because our car’s battery was acting up. The mechanic was just telling me that they didn’t have what we needed, when a delivery truck pulled up with our battery in tow. After that, we stopped by the office, and one of the landscape architects that works with Michael had fresh raw brownies to give us, homemade by his wife. They fit my Paleo diet requirements and were the best thing I’d eaten in a long time. Benji loved them too.  Finally, we were gifted an amazing experience–tickets to a Rays’ game next weekend, including pregame passes on the field. So many blessings. I was filled up with gratitude.

There were many smiles and car dances as Benji and I headed north today. We stopped for a lovely picnic at a park along the way. Benjamin was feeling fine until we arrived at the All Children’s parking garage. I used to scoff at the phrase “anticipatory nausea.” Now I can fully see it happening to my son. I told him there was one more anti-nausea medicine–Ativan–that was designed specifically to tackle this kind of symptom. He refused it emphatically. He took Kytril when we sat down in the Infusion Center waiting room, while we put the numbing cream and dressing over his thighs. It seemed to work to calm him down.

The Infusion Center was crazy busy today. Still, it didn’t take long for the nurses to come and access Benji’s port and draw the blood that would give us the numbers we needed for today’s chemo. As usual, they accessed, flushed, drew and heparinized all at once. Benji and I put aside the model airplane we were building, donned our masks, pulled out our lavendar oil and held hands. Benji was amazing. When it was over, we waited for his CBC and resumed plane building, both wooden and paper. We soon abandoned the model and flew the paper variety exclusively.

Dr. Hale came to see us a little while later. There was little to discuss today, but he stayed with us for quite a while, helping Benji with his plane and just being a friend. The CBC had come back and Benji’s numbers looked great. The nurses were preparing to give Benji his Erwinia shots, and were bragging to Dr. Hale about what a rock star Benji is when the medicine enters his legs. Dr. Hale wanted to stay to watch the process. Today’s shots were #51 and #52. When the needles entered and the medicine flowed, Benji reached his Jedi status and breathed through the pain. No tears. No sound. I could see the respect in Dr. Hale’s expression. I am witnessing Benjamin inspiring people to find that ability within themselves, when things feel difficult and painful. Myself included.

We took our laps around the Infusion Center. Benji played jokes on the nurses, placing stickers on unsuspecting backs and playing the Gator fight song loudly for a nurse who happens to be a Tennessee fan. He was having a good time. We flew paper airplanes and joked with the nurses for the rest of the hour he had to be monitored. Soon it was time for Benji to be deaccessed. The nurses collaborated for an epic Friday dance, and we were on our way.

Benji’s tummy has hurt on and off all evening. I hope he will feel well tomorrow. We are planning to leave town to a place other than All Children’s Hospital for the first time since his diagnosis. If he feels up for it, we’ll travel to Gainesville for the first Gator football game of the season. We’ll see my sister and the boys’ cousins, and meet up with old friends. It will be a quick trip, as we have to be back at All Children’s Sunday morning for more Erwinia shots. But I’m excited for the possibility of adventure.

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