Day 51

We went to the emergency room this morning.

Last night, Benjamin’s fever rose to 100.8. We thought we’d have to head north in the wee hours. We checked his temperature around the clock. At one point, my hand met Michael’s on Benji’s forehead, as we slept on either side of him. At about 2:00am the fever started to go down, and by 3:00am it was normal. We woke up giving thanks for Benjamin’s amazing body. It fought as hard as it could without compromising the sleep we knew he needed.

As the morning went on, Benji’s fever rose again, and by 10:00am it registered the 101F that guarantees a trip north. I was extremely proud of my boys for taking this news in such fine stride. The phone calls and bag packing began. I was kicking myself for not having done this sooner (I hadn’t wanted to jinx us). We hurriedly prepared for a hospital stay for three, and got Banyan ready for a weekend with Grammy and Noni. Our total temperature-to-truck time was 45 minutes. Not bad, all things considered.

As soon as we went through triage in the ER, we were given a room in “protective isolation,” due to Benji’s low immunity and high risk for infection. Everyone that enters puts on a mask and a gown. Lots of tubes and vials everywhere. It’s a daunting looking place.

Benji had a complete blood count drawn as well as a peripheral blood draw (after two pokes–poor guy) to rule out any infection in his port or bloodstream. He also had a chest x-ray to rule out pneumonia, an albuterol treatment to relieve his cough, and a swab to check for different viruses. His X-ray came back clear, and the nurse took the time to show Benji his port, and the line to his heart. His blood count showed that his absolute neutrophil count is still profoundly low, and his hemoglobin had dropped below the transfusion level. We were admitted, which we expected, and went back up to the 7th floor. We have a different view this time. No Sunshine Skyway, but we can just see the Rays’ stadium from our new window.

Benjamin’s blood cultures are negative for bacteria so far, though some strains take longer to show up than others. Until they’re negative for 48 hours, he’ll get prophylactic antibiotics. His virus swab came back positive for rhinovirus (the good old common cold) and nothing else. His fever persists; with such a low neutrophil count, his body has to work much harder to fight.

So, we’re in the hospital for a common cold. But because neutrophils fight infection, and Benjamin has hardly any neutrophils, all other possible sources of fever must be ruled out. Also, his hemoglobin and platelet numbers were lower than necessary for anesthesia, which he will need Monday for his lumbar puncture with Intrathecal Methotrexate. So he needs transfusions to avoid delaying chemotherapy. He got packed red blood cells a few hours ago. He’ll get platelets tomorrow.

We will stay inpatient at least through Monday’s lumbar puncture, intravenous Vincristine, and Tuesday’s PEG-asparaginase. Then, we can go home once he meets three criteria: his blood has remained negative for bacteria for 48 hours, he’s been fever-free for 24, and his neutrophil count is above 200 and rising.

Hospital stays like this are extremely common after an Ara-C cycle; they’re a near guarantee. Perhaps I was naive to think we could avoid one. Still, it’s hard not to second guess my every move. Did Benjamin get this cold from the clinic? Could Banyan have brought a bug home from school? Should we have skipped that trip to the library?

Of course it doesn’t matter. He could have picked it up anywhere, once his counts were suppressed enough. It’s another balance we will have to find: one between putting our boy in a bubble, and making his life away from leukemia as normal as possible.

As I walked to the 7th floor microwave to heat water for tea, I saw our old room, empty, with the door open. I probably wasn’t supposed to, but I felt compelled to walk inside and look out the window at the lights of the Skyway. The tears took me completely by surprise. I’ll never forget watching the New Year’s Eve fireworks from that window in total shock. We’ve learned so much. When we lived in that room, our neighbors were in protective isolation. We wondered why the nurses had to suit up and wear masks. Now, that’s our story. This isn’t our first time on the 7th floor, and it won’t be our last. We have a long way to go, but we will get there. We are getting there. One step at a time.

19 thoughts on “Day 51

  1. I follow your posts every night, I don’t like to go to sleep till I read about Benji’s status… Sorry he had to go to the hospital over the weekend, but know we pray for your family every day. I want to tell you what an encouragement you’ve been to me by reading your posts and how you handle things.. Lifting you all up for strength, and rest… ((Hugs))

  2. You know, Laura, you might be tempted to think we’re the ones lifting you up–so many of us keeping you going with words of encouragement and acts of support. More than a few times as I’ve been following along, though, the opposite seems just as true. Your positive attitude is a tremendous gift to the world. Your patience and dignity are inspiring; I’m grateful for the opportunity to follow your journey, as well as your example. Thank YOU.

  3. Hoping it’s still nothing menacing brewing, and that the meds and fluids and rest will work their magic. If you have to be there anyway, it’s nice that he can get his blood products now so hopefully no delays for next week’s big days.

  4. Good to know that it’s a cold that brought you to the hospital, but in Benji’s state of no immunity, everything must be attended to. I can’t believe that: (1) his little body can handle all these meds, (2) you made it fever to truck in 45 minutes, and (3) you have the time and emotional stamina to write these daily posts to us.

    Love, Sonia

  5. I was sorry to hear that you guys ended up at the hospital but glad that it is only a cold so far. I know that even a cold can be dangerous with no immunity but I hope his little body will fight it off. Thank you for taking the time to keep us informed. Love to all of you.

  6. You are and have always been such an inspiration to many. Benjamin is absolutely brave, beautiful and without doubt blessed! Your family is and will remain in our thoughts and prayers each day. We can only hope to shed some light on your days ahead as you have done for so many through the years. ❤️ You are not alone on this journey. We are all here with you.

  7. You’re such a good Mommy Laura. We pray for your family evernight. Your strength and love is inpiring! xo

  8. You are all just so amazing. I have a vision of you and Mike swirling around into superhero capes and placing one on Benji as you packed for the hospital. You are doing it. As you said, one step at a time, one day at a time. You’ve come so far and learned so much. Thank you for writing and sharing your story. You are an inspiration, an amazing Mother and a gifted writer.

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