Day 276

The morning was so uplifting. The afternoon was so dizzying. Now, as I settle in for another night up here on the seventh floor, I am going inward. I am trying to regroup. We have work to do.

We slept well last night, and woke up to happy news. Benji’s Methotrexate levels decreased from 0.22 to 0.13. His creatinine also decreased a little, to 1.95, and his platelets got a nice boost. He is still profoundly neutropenic, but at least today there were white blood cells on the radar; his absolute neutrophil count (ANC) was 39. I’ll take it.

Michael and Banyan literally drove through a rainbow this morning on the Sunshine Skyway. Of course I took this as an amazing sign. Benji hasn’t smiled in days, but his spirits were visibly lifted by the presence of his daddy and brother. His eyes looked brighter. He played Memory with Banyan and seemed to enjoy watching football with him. It was nice to have Banyan’s big energy in the room.

Banyan went with Aunt Sarah to retrieve more milkshakes in hopes of enticing Benji to eat. While they were gone, Dr. Stapleton, the weekend oncologist, came into the room to discuss the plan moving forward with Michael and me. She recommended the highest dosage of Leucovorin for today, to be administered twice. When she told us that she’d consulted with Dr. Oshrine, it gave us relief. We had a chance to voice our extreme frustration over the events of the past several days. I can’t talk about how grateful I am for his visit yesterday without tears.

Benjamin was in the bathtub when Kathy came to visit this afternoon. She brought lunch, clean laundry, and soft towels for Benji’s sensitive skin. The nursing team came in a little while later to discuss Benji’s port reaccess. His dressing had peeled up a little bit, making an opening for air to reach the needle. It was time. Our plan included premedicating Benjamin with Benadryl for skin comfort. While the medicine dripped and the room was full of family, I took a long hot shower.

The weekend nephrologist came in while the nurses were preparing to deaccess Benji’s port. I had so many questions for her, but before I could ask them, she delivered news that knocked the wind out of us. Benji’s blood culture from yesterday tested positive for gram positive cocci clustered bacteria. The most common of these is staphylococcus.

This could mean many things, on a spectrum of scenarios so extreme it’s counterproductive to consider them without proper information. It could be as innocuous as a contaminated culture, it could be an infection of the port, or it could be an infection in his bloodstream. A peripheral blood draw was taken to confirm or deny the third possibility. We won’t have answers until today’s port culture and peripheral culture have time to grow.

The nephrologist also said that Benji’s urine came back with protein and blood in it. This was from a sample I had to beg to send out yesterday. The peripheral blood test is another one I feel should have been done sooner; in February when Benji presented with a fever it was done immediately. And yesterday’s blood culture, the one that came back positive, was almost not even done. The routine morning draw had “dropped off” of the orders. It was only conducted because we requested it anyway a few hours later, when we were awake enough to think straight. These little omissions are cumulatively frustrating, to put it extremely mildly.

The nephrologist left after having answered my other questions. Kathy and Banyan said goodbye to everyone and went back to Sarasota to get Banyan ready for his week at school. Michael, Sarah and I sat in silence while Benji slept, untethered to his IV pole, waiting to be reaccessed. It was hard to speak. A positive culture has been one of my biggest fears. Tomorrow will be an informative day.

The nurses came in to access Benji and dress his port. It was a difficult process, as his skin was moist and painful and not much was adhering to it. They tried several different methods with various tools. Many times one nurse would leave the room and come back with new supplies. They did the best they could, but the process took way too long with Benji’s needle exposed as it was.

By the time Michael left, I had collected myself enough from today’s bombshell to realize that we must infuse only positive energy into Benji’s atmosphere from here on out. There have been so many negatives lately. I walked Michael out and we talked about how to proceed from here, with our speech, our energy, our intentions. We held each other for a long time.

A dermatologist finally visited Benji’s room tonight at nearly 9pm. It was a relief to see him and he gave us solid advice on caring for Benji’s massive skin irritation. He also said the rash alone could be enough to cause Benji’s fever. I hope that’s the case.

When Benji was trying to get comfortable in bed tonight, he hit his pain button multiple times. He was hurting so badly. His shaking has increased, with or without the presence of fever. And he’s so down. It’s really hard to watch.

Sarah decided to stay another night once she found out about the positive blood culture. I am so grateful for her grounding presence during another super hard day. This morning I thought I could see that corner I’ve been searching for, and this afternoon we just hit a wall.

Still, I know this is just one more obstacle our amazing boy will overcome. It has been challenging to keep the energy light and happy in this room, but that’s what must happen now. Only love and positive intentions must surround Benjamin’s healing body and mind.

5 thoughts on “Day 276

  1. I was so sorry to hear this news. I wish he could get some pain relief and some rest. Love and hugs to all of you.

  2. I opened this and saw him sitting, playing, and an spontaneous “Yay!” came out.

    Light and happy coming your way…

    Glad you have such a good team in your family. How wonderful you have your twin with you. through this.

  3. Faith is things hoped for but not seen–believing in love and positive things to keep happening–love and prayers 🙂

  4. Sending you all light and strength to get through this. Surrounding Benji and his room on the 7th floor with healing vibration and love.

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