Day 717/89


Today was a very good day.

It didn’t start that way. We were up before 5am with Benjamin in great abdominal pain. He asked for heat packs and cold packs and tried to get comfortable, but couldn’t. The episode resulted in vomiting before sunrise. We finally got back to sleep, and I slept right through shift change.

When we woke for the day, one of our favorite nurses was in the room. I felt grounded as I walked to the computer to check the lab results. No expectations.

The numbers were wonderful to see. Benjamin’s leukemia percentage and total count were back down, lower than any day last week, to 26%. His platelets and hemoglobin each remained above their transfusion levels, so he wouldn’t need any blood products today. The next few days will tell more of a complete story. But in this moment, we are heading in the right direction. It was a nice, deep exhale.

We saw Dr. Moore early this morning. We discussed Benji’s tummy pain and the refreshing lab work. Then he asked me a strange question. “How badly do you want to go home for a little while?” as if there were some sort of spectrum of which I was unaware. I motioned toward Benjamin, who had his headphones on, and told him I didn’t want it mentioned if it wasn’t an a real possibility. He said that if we wanted to go home badly enough, they could try and make it happen.

Dr. Moore painted a scenario that might look something like this: Benjamin gets his final dose of Inotuzumab on Wednesday and stays in the hospital through the watchful days that follow. He would then get discharged Saturday morning with a hefty dose of platelets and plan for readmission on Monday. I expressed a little skepticism that this could actually happen. He said that of course, they wouldn’t do anything that wasn’t safe for Benji. But now I know it’s a possibility, depending on the way things go this week.

I was surprised at how romantic I found this whole notion, and how hopeful it made me, which in turn made me a little angry with myself. I know that it truly doesn’t matter where we spend Christmas. But I couldn’t help fantasizing about the fresh air, the fresh tree, the last minute decorating, cramming in all of our usual traditions into one magical weekend–and waking up in our own house on Christmas morning.

Then I thought about how hard it would be, especially for Benjamin, to have to return to the hospital again the next day. I keep thinking about the word from the movie Shawshank Redemption —institutionalized. Aside from one glorious week, this has been our home for exactly three months now. Would a taste of home be worth the ache of having to coming back here? Yes. Yes it would. But we’ll just have to see what happens.

When I shared the conversation with Michael later, he wisely reminded me to wait for Dr. Oshrine’s counsel before getting my hopes up about anything. We have no idea what is happening this week and we know better than to have expectations. If Christmas is to be here this year, it will be wonderful. We sure have made a festive little home in our room on the 7th floor.

We seem to have found a pretty good rhythm with the Marinol. Benjamin takes a dose when he wakes up in the morning. It lasts for about six hours. In the afternoon and evening he can take up to two more doses if he needs to for pain and nausea management. The drug was already working beautifully when Michael and Banyan walked in with the Sunday donuts. Benjamin ate half of one, then settled into a nice, happy, spirited morning. He was laughing and playing wildly with Banyan. Many nurses commented on how nice it was to see him like this again.

We enjoyed visits from our dear friends today and also from Sarah and Lilye. While our friends were here, Benjamin actually walked to the play room for a while–the most physical activity he’s had in days. It was wonderful to watch. When he’d had enough, he said so, and returned to his bed. The Marinol was wearing off. Our friends left, and Benjamin started feeling pretty poorly again. Soon the pain resulted in more vomiting. He bounced back from the episode quickly and took his next dose of Marinol, which worked like a charm. He was able to visit with Sarah and Lilye and even eat a little something before falling asleep for a long late afternoon nap with his daddy.

Despite the moments of nausea and belly pain, Benjamin had a sweet Sunday with substantial progress. I can’t predict the numbers or how Benjamin will feel day to day. But I do know that we will celebrate his ninth birthday later this week. We will welcome family and friends for visits. And we will spend Christmas together, wherever we are.

11 thoughts on “Day 717/89

  1. News worthy of celebration ….
    Sending love and healing to your sweet little house
    on the 7th floor….
    I Believe ……❤️

  2. I see your point but I think it would be SO GOOD for all of you even if it is brief. You will make it feel like Christmas wherever you spend it but it sure would be even sweeter to spend it at home! Here’s to a week full of more nice deep exhales, no expectations, wonderful numbers, and laughing and wildly playing!!! xoxo

  3. Oh how I longed to read this. Thank you Laura! I can see the pics now of your family by your tree! Praying for the right decisions to come and more healing In the morning

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