Day 85

It was a good day. It was a great day. When Benjamin feels well, it makes all the difference in the world.

Benjamin had a tummyache this morning, but we caught it early, and his Zofran worked immediately. I think his tummy trouble is twofold; it’s a result of reacclimating to chemotherapy, and it’s a product of increasing the dosage of all three of his medicines. He had a nice breakfast, we dropped Banyan off at school, and we headed over the bridge.

Benji’s spirits were so high today. He was laughing and joking with everyone–the receptionists, the nurses, and Dr. Oshrine, who called him “increasingly colorful.” It’s quite an accurate description. Benjamin kept us all laughing during the entire appointment, prompting Dr. Oshrine to encourage me to write down the positive parts of this journey. I assured him I was writing daily. He approved; he said I could expect to look back on this chapter in our lives one day with a “strange fondness.” I already know what he means. There are so many blessings. And I really, really enjoy hearing Benji’s oncologist talking about looking backward on this chapter, without hesitation. There is never if. There is only when.

Benjamin received his Cytarabine, his port was deaccessed, and we were sent home. It was our quickest appointment to date; in and out in an hour and a half. The oncology team didn’t feel the need to conduct a complete blood count today. We already know from Tuesday’s counts that Benjamin’s hemoglobin and platelet counts are strong, and we know what his absolute neutrophil count (ANC) was at the onset of this cycle. We also know that beginning next week, all three counts will start to plummet. Benjamin may need another transfusion or two, and a hospital stay is never out of the question. So we enter this weekend in happy, grateful spirits. It’s our last weekend to function quasi-normally before a long period of severe neutropenia.

After a nice rainy lunch at home, we enjoyed a Skype session with Benji’s first grade class, courtesy of HopeCam. It was so sweet to see their happy faces today. Benji’s teacher, Mrs. West, also sent me a new plan for the fourth and final quarter of the school year, with assignments to check off daily. She has observed what motivates Benji and is putting it into action. It is already working. Benji accomplished everything on today’s list, including a reading unit on building bridges. We were excited to see our own Sunshine Skyway on the second page.

One of the unexpected blessings of this journey is that my boy, just seven, is learning a level of compassion and social grace that most adults could use. Every time we cross the bridge, we see children who look quite different from the ones he’s been Skyping with. We’ve seen giants and we’ve seen dwarves. We’ve seen children who can’t control their movement, and those who can’t move at all. We’ve seen families in pain and families in laughter. We’ve talked about the common bond they all share–love. They all need love.

As we drove back into Sarasota today, I noticed the gold trees blooming for the first time this spring. They are Michael’s favorites. The brightness of the flowers struck me, and the tears came. I feel so grateful for this life, for my husband and partner, and for each of the incredible young men we are guiding. This level of gratitude is such a gift. Strange fondness indeed.