Day 284

Benji’s little wet cough persisted in the night. He complied with my requests to inhale deeply and get his coughs out, and by the morning his chest sounded completely clear, according to his nurses’ stethoscopes. It was another night with little sleep; Benji had the cough, a fever that required Tylenol, and twice, he woke up paranoid, asking our nurse if she was running saline flushes. He will need such a full body and spirit detox after this is over.

Dr. Wishnew is our oncologist this week, and she did proper rounds this morning. For the first time in many days, Benji’s body, assisted by Neupogen, has produced essential infection fighting neutrophils. His absolute neutrophil count (ANC) was 1000 this morning. This offers him a level of protection that no antibiotic can match. He’ll still take the Neupogen until his ANC shows an undeniable sturdy trend, and he’ll be on prophylactic antibiotics until he is fever free for at least a full day or two. Benji’s creatinine continues its decline toward normalcy. This morning’s level was 0.81.

Dr. Wishnew listened to Benji’s lungs and we discussed options for assessing any mucosal sloughing, which are limited for him for several reasons. The cough and oxygen levels will be closely monitored and a pulmonologist will be brought in as needed. I agreed to a noninvasive swab of nasal discharge to continue to rule out viral culprits, though I feel completely certain I know the cause of this cough, and hypervigilance is mandatory.

During Benji’s morning care routine on the couch, he picked at a wound on his leg I’ve been keeping an eye on. It’s been raised and red and not quite healing like the rest of his skin. With Benji’s prodding, it started to bleed like crazy. I believe the extra boost of neutrophils is progressing his healing, and this spot was a good example. His platelet levels were low again this morning–19,000–so with this bleeding event we went ahead with another transfusion. Our nurse also drew another vial of blood to test Benji’s coagulase enzymes, which came back perfect.

The Gastrointestinal team came in to assess Benji’s persistent stomach pain. I agreed to their additional soothing medication after learning that it works differently than the others he’s taking. Otherwise, the presence of these doctors was frankly annoying. “Would you say his rash is better, mom?” Um, YES. Aren’t you looking at him? “Is he still on the Methotrexate, mom?” Um, NO. Haven’t we gone over this?

Everyone calls me “mom” or “mama” here. It’s incredible how the delivery of that word can change from person to person. From a detached specialist who is obliged to check a visit off of her list, “mom” sounds so grating and cold. From a night nurse who is helping me give my shaking boy comfort, or sharing the job of cleaning midnight vomit, “mama” is a word said with the warmth of a favorite blanket.

Michael was able to spend most of the afternoon with us. My thoughtful partner brought my favorite loose leaf tea and a personal tea infuser for Benji. I was excited that Benji asked for a glass immediately; with his ANC at a healthy 1000, I could safely give him probiotic rich Manuka honey to help heal his mucosa. I put a heaping spoonful into his tea, and gave him a dose of glutamine mixed into one of his many beverages. I know for a fact this regimen will help him, if I can only get him to swallow these healers regularly.

I requested an appointment with the All Children’s physical therapist today but her schedule never meshed with Benji’s waking hours. Instead, at Michael’s insistence, I napped when Benji napped. I woke up to a visit from the opthalmologist, who seemed genuinely pleased with the work of the steroid drops we’ve been giving Benji. He’ll continue to visit throughout the week.

Michael left as playoff baseball began. Benji and I snuggled in to watch. His lips have been hurting him so badly all day, and his cheeks have been puffy from persistent mouth sores and desquamation. As we were lying there, he peeled the entire layer of black scabbing skin from his bottom lip before I could stop him. It hurt so badly, but I understand why he did it. The healing will begin again tomorrow and he will know not to touch this strange new skin. He pushed his pain button and fell asleep during the seventh inning.

I was given some good perspective on Stevens Johnson Syndrome (SJS) today by a mother whose son was diagnosed with it, ironically, on New Year’s Eve (the day Benji was diagnosed with leukemia). The boy with SJS didn’t have an underlying condition, just a simple reaction to an antibiotic that turned very scary very fast. He was in a medically induced coma for a month and nearly lost his eyes. He’s doing so well now. We shared photographs and stories and she gave me advice and encouragement. When she called me “mama,” I was certain she said it with pride.

4 thoughts on “Day 284

  1. Thanks so much for the posts. I hate all the pain Benjamin is going through and praying the process will continue to improve. Love and Prayers

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