Day 173

Today was the first day Benjamin has gone without medicine for nausea. I was so happy when he woke up and asked for an omelet instead of Kytril. He played hard and ate well, tiring only at the end of a very long day.

This afternoon, I had some blood work done. The boys went with me. Benjamin wasn’t on the blood mobile with me at the lemonade stand, and was fascinated to watch me. I have always had a needle phobia. He asked if it hurt. I was honest; I said yes, but that somehow, after watching everything he’s been through, it was easy now. He made me brave.

Michael’s amazing, beautiful, strong and inspiring 92 year old grandmother from South Georgia is in town. Her daughter came with her, Kathy’s second sister in a week to come for a visit. Tonight we all shared a delicious meal, and had a nice family photo session outside before dark. I am so grateful that they traveled all this way. I know it’s in large part because we haven’t been able to travel north for our usual Easter or Memorial Day visits. It means the world to me that our boys know both of their great grandmothers so well. They don’t even realize how atypical that is.

While we were in the hospital last week, Benjamin’s oncology team scheduled his follow up at the clinic for this Friday afternoon. I looked at the discharge papers yesterday and noticed it was with a physician’s assistant that we’ve seen only twice. Both times, she has crossed critical components off of Benji’s orders: she removed the specific gravity urine test prior to administering his Cyclophosphamide (we requested it anyway), and she eliminated a sodium acetate bolus that would have regulated his pH to begin one of his rounds of high dose methotrexate. I am still not sure why either of these measures were taken. She is a very pleasant person, but this is an important clinic visit, as we will be discussing the next phase in detail. We need one of our A-team. Dr. Oshrine is booked, and Dr. Grana has only tomorrow afternoon available.

We took the appointment. Tomorrow, we will head back over the Skyway to learn as much as we can about Delayed Intensification. I’ll be organizing my thoughts as I fall asleep. I’m glad it’s Dr. Grana we’ll be seeing. I know she’ll set my mind at ease.

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