“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.” ~Thich Nhat Hanh
Benjamin had such a beautiful window of clarity before we went to sleep last night that Michael and I decided in whispers to approach Dr. Oshrine again this morning. We thought that maybe, somehow, we could persuade him to persuade CHOP to accept Benjamin in their CD22 trial. We had it all worked out. We’d fly up to Philadelphia with Benjamin’s collected cells, then return here and keep him sustained with steroids for the duration of the manufacturing period. It was such a long shot. But we went to bed feeling a glimmer of hope, and a great deal of gratitude for the moments that inspired it.
We did not approach Dr. Oshrine this morning. The reality of Benjamin’s “clinical performance status” came back into clear focus in the middle of the night, when serious pain, shallow breathing and an insanely rapid pulse disrupted our boy’s rest. He was burning up. He had to use the bathroom and eliminated a large amount of occult blood in the process. His pain button wasn’t cutting it, and neither were the boluses our nurse administered. She called the doctor on call and increased his rate of Dilaudid. This did the trick, along with a dose of intravenous Tylenol. But we were shaken.
During morning rounds we discussed the plan to transfuse both platelets and red blood today. Everyone agreed that this was the right thing to do. We also talked about Benjamin’s recent request to go home, and the pieces that would need to fall into place to make that happen. I woke up to several messages and emails from people trying to help us in our efforts. People have been so incredibly kind, in so many ways. It’s really overwhelming.
Last night’s episode conspired with Benjamin’s depleted hemoglobin to make him feel exhausted today. He slept nearly all day, and we used the time to work with the Palliative Care team and our nurses to strategize a hospice transfer. After many phone calls, texts and emails between agencies, and an official prescription for end of life care, a plan fell into place. I was so thankful that it included the ability for Benjamin to receive platelet transfusions at home.
Hospice nurses will come visit us tomorrow and answer our many questions. If everything goes well and we are satisfied with the services they can offer us, they will get the orders for Benjamin’s medicines from our physicians, and start procuring the medical equipment he will need. They will set everything up at our house before we are discharged. We think this may happen Thursday morning.
Benjamin’s fever returned in the afternoon, and he received a dose of intravenous Tylenol. When it took effect he felt well enough to sit up in a chair near the bed. He had a craving for fried rice, which Kathy and Gana fetched for him, and he ate a few bites. He ended his longest stretch of wakefulness of the day with a bath. In the tub he asked me about getting his port reaccessed tomorrow. I told him that he didn’t have to go through that again, since he wasn’t getting treatment anymore. “But it’s still an infection risk,” he said. He is doing everything right.
We received two more gifts of incredible food today. Benjamin asked why there was a meal train again. I told him that it was because people know he isn’t getting treatment anymore, and that he hasn’t been feeling well, and they know what a crazy time this is for us. I told him that it was also because people are just generally so very kind. We are trying to answer Benjamin’s questions as they come, honestly and concisely. We will always be honest with him, and we will always be present.
Benjamin is getting his blood transfusion now, and is sleeping peacefully. We have a lot to learn tomorrow if we are going to take our boy home. I’m so grateful the option exists.