Day 229

I woke up before the sun today to help Banyan get ready for yet another adventure. He was invited to drift down the Rainbow River in an inner tube, watching the fish through his mask in the crystal clear water and picnicking with his boys in this last week before middle school. It was a wonderful opportunity and I’m so grateful for his friends and their generous parents, who have all taken extra steps this year to make sure Banyan feels included, even when his brother can’t be. Benjamin is accessed and can’t be in fresh water right now, so we stayed behind. He was disappointed, but understanding. I promised him a pilgrimage to the best springs in Florida when he gets the all clear.

After dropping Banyan off, I met my friend for a sunrise bridge walk that was sorely needed. Benji woke up when I returned, and Michael left for work. I was concerned immediately. Benji’s color was way off to me. Not yellow, just off. His energy level was extremely low and he said that his tummy hurt. I thought he might be hungry, but as we were discussion breakfast options, he hurried to the bathroom and vomited.

This is unusual with the Erwinia/Vincristine combination, and we’ll definitely be discussing it with his doctor tomorrow.  I put a Scopolomine patch behind Benji’s ear and offered him Kytril, which he declined. Fortunately, it was an isolated incident. I was reminded that we are nearing the end of this phase, with less than two weeks left. The end of each phase is often the most difficult on the body.

Although Benjamin’s nausea dissipated, his energy remained low throughout the morning. He had been looking forward to going to a friend’s house this afternoon to play Monopoly. I was hoping we wouldn’t have to cancel. We played a practice game at home to keep things low key.

Just before lunch it was time for Benji’s Pilates lesson. He didn’t want to go, which is highly unusual. I insisted we try, if only for a few minutes. I told him how strong it was making his body and how much he’d improved in recent weeks. He was brave enough to put himself in the room, but after only a few poses, he called it quits, and I didn’t push it. He looked exhausted. I explained to Christina that Delayed Intensification is designed to drop his blood counts, including hemoglobin. She was very understanding. We’ll try again soon.

After lunch, Benji started to feel better and stronger. I think he just needed a slow morning of rest and Monopoly. By the afternoon, he was quite eager to visit his friend. I dropped him off, and gave his friend’s mama the low down. He’s accessed, so no rough play, not a lot of running, no quick movements, no water play–oh, and no grapefruit. I realized it was the first time I was bringing him to a friend’s house that doesn’t live on our street in many, many months. He is capable and knows his limits. And I was a phone call away. Still, it felt like a big step.

As I drove away, with Banyan at the river and Benji at his friend’s house, I expected to feel liberated. I had nearly three hours alone. But I didn’t feel liberated. I felt lonely. I missed my kids. I think this was probably exacerbated by knowing that the school year is right around the corner. Change is coming. I did get a lot accomplished; I stopped by Benji’s school and made sure everything was squared away for his Hospital Homebound program to begin 2nd grade. I did some school shopping, bought a set of knitting needles, dropped off dry cleaning, did the dishes. Still, it irritated me that I couldn’t let go and fully enjoy the time I had to myself. I was grateful when the mothers with my children sent me beautiful pictures of their happy faces.

Tomorrow Benjamin will get his second set of Erwinia shots in this round of six. He’ll get another complete blood count. Barring transfusions, it should be a pretty quick visit.

The emotions in the air right now are charged and conflicting. There is the unspoken sadness that comes with the end of summer. There is the excitement of a new school year on the horizon. Banyan is leaving a comfortable two year run with the same classmates, and entering the huge, insane world that is middle school. Benji knows that he will be in a new class, with new friends, and the teacher he’s been hoping for; yet he also knows that he won’t be at school very often, at least for the first few months. There are nerves and jitters. There is possibility and hope. We try and live in the moment, and hang on to these late summer days.

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