Day 691/63


Benjamin’s fever rose and fell throughout the night, and into the day. At morning lab draw, our nurse took a blood culture. Nothing has come back positive for bacterial growth. He had a sore throat most of the day, very little appetite, and a cough. He’s fighting a virus.

At shift change an hour later I felt so happy. Benji’s platelets finally stuck. 17,000! It was so encouraging that I overlooked the 50% blast number. I told myself that if the spleen was starting to function well enough to store platelets again, then maybe it could do the job of filtering his blood and finally getting rid of these blasts. His ANC and white blood cell count each rose very slightly. He is on his way out of the nadir period from the Etoposide and Cyclophosphamide. Soon, another disease management decision will need to be made.

Every time our nurse used the computer today to update Benji’s chart, I asked her to check and see if his flow cytometry was back from Washington. Benji and I had just started watching a movie when her swipe yielded results. I don’t know what all the words meant, but I saw one line that read much differently than I’d wanted it to. CD19 decreased intensity overall, absent on a major subset.

The nurse left, I paused the movie, handed Benji his iPod and went to the bathroom. My stomach was holding everything. All of this. I emptied its contents and breathed deeply. I returned to my side of the hospital bed. I wanted to email Dr. Oshrine right away to ask him what this means, but I resisted. I put down my phone and held Benji’s hand instead throughout the film. Being present for him is still the most important thing. My midsection was all tangled up, but I was present.

I sent the email after the movie ended. I was trying hard not to spiral into the land of conclusions. I wondered if the Blinatumomab was responsible for destroying the protein. The CD-19 was still present on all cells when Benji’s last bone marrow aspirate was conducted, and now, it isn’t. Absent on a major subset. I assume this means the CAR-T trial is no longer an option, but I guess I could be wrong. I need to hear it from Dr. Oshrine. He has emailed the results to CHOP and will talk with me tomorrow about what this means. I hope they can still accept him. I hope there is a kind of dual therapy or protein manipulation that can be done. I hope. But I need a plan.

I look at the boy in this room with me and see his skin and his smile and his eyes and none of this makes any sense.

Benji finally ate something when Michael arrived: per request, a Nutella sandwich on butter bread. As soon as my husband’s strong presence was in the room I felt like collapsing. I closed my eyes for a few minutes. My belly still hurt, but it didn’t feel like stomach pain. I swear, it was in my womb.

Kathy and Gana brought sweet Banyan and dinner for us and stayed for a nice visit. I was so happy to see my older boy’s face. I’m grateful he has a few days off from school and can spend some more time with us. Benji felt great when his family was here. He played with his new remote controlled cars and ate half a cup of soup, and only felt a little warm.

After everyone left and Benji took his nightly bath, his fever rose to an uncomfortable degree. Our nurse gave him Tylenol. He also had some urinary discomfort, and his cough is worsening. He is protected by antibiotics and antifungal medicine during this profoundly neutropenic phase. I hope to exit this stage free from infection and armed with a plan. I hope.

Michael texted me to let me know he got home safely. We agreed not to let fear control our emotions. There is no time for that. Our job is to be present, and to guide our children, both of them, along their paths, wherever they may lead. We can do this. We have shifted course before, and if a shift is in store for Benjamin now we will do it again. We will continue to do the best possible work we can do to help him heal.

10 thoughts on “Day 691/63

  1. Spleen improving, good. While you are waiting on word from Oshrine and those in the know…. I am holding you high, knowing your path is graced. Beaming healing to Benji, and love and strength to you, as always. <3

  2. Rainbow in the clouds, Laura….You know what Maya said and I am glad to see your references to hope. Let your rainbow always guide you so you can feel hope and keep it present within you like you did in this post. Benji’s platelets stuck to 17,000!! The spleen is healing. THIS is your rainbow today! Sending our love to you, Michael, & the boys xoxo

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