Day 729/101


We are still waiting for the final word from CHOP. I checked my email about a hundred thousand times today. Now that the work week has passed, we are prepared to wait until Tuesday for a decision, and a plan. Just in case, I’ll be checking my email a hundred thousand more times over the weekend.

Benjamin had his best day in weeks today. I was fearful this morning that this wouldn’t be the case. He slept for almost twelve hours, then woke up in pain, asking for a heat pack and a bath immediately. I was surprised and wasn’t sure what would unfold. But by the time he emerged from the bathtub, he was completely himself, spicy, happy, and feeling strong.

This morning’s lab numbers were very similar to yesterday’s. Benjamin’s platelets and hemoglobin seem to be holding steady for longer periods of time now. For the second straight day he needed no transfusions. His white blood cell count and leukemia percentage (23%) were about the same. The longer this stays true, the better.

We had plenty of happy distractions today. Aunt Sarah, Lilye, Lotus, Michael and Banyan were with us this afternoon. Benjamin decided he wanted to invent his own soda, so Michael brought him everything he would need and then some. We experimented and had taste tests in our room. A few days ago he would have cringed at the idea. He had very little pain today and he ate really well. It was such a relief to see him feeling so solid. Look at the boy in front of you.

Michael and Banyan stayed with Benji tonight so I could go fetch some potatoes he was craving. It was a strange experience to walk out of the hospital and into a crowded grocery store on a Friday night. I am much better at staying present when I’m with Benji than when I’m in the express lane. I couldn’t get out of there fast enough. The cold air was so welcome on my skin.

Benji has been asking some pretty big questions lately. They’re all age appropriate, so I try to answer the ones about death in the same voice as I answer the ones about Santa Claus or babies or anything else his inquisitive mind comes up with. He asks without fear and I try to answer the same way. I will always be honest with him. With both of my children. I love them so much.

Benji will be off of isolation tomorrow and C. diff will be a thing of the past. I’m thinking of how to transition him into more outpatient based care, regardless of the plan moving forward. If he continues to feel as good as he did today, then home is where he should be.

10 thoughts on “Day 729/101

  1. To a NEW YEAR.
    A full circle, for you all, I know, thinking of the strange miracle
    of being diagnosed when all of your tribe was focused on you.
    Thank you for all the lovely New Years Parties. Hearts are with you.

  2. You always express the right words, thoughts and feelings. This is such a journey you are all on. Thoughts of healing and love to you on this final day of 2016.

  3. I’m so happy to hear he is having such a good day! I check rainbowsintheclouds all day just to see if you’ve written something even though I know I’ve read the day’s post. Thank you for the daily post. I feel so honored to be able to follow this so closely. I hope he gets home again soon and gets to ride that scooter and make homemade sodas at home. Sending our family’s love to you Brave Benji and your beautiful family. Dori, Darrin, Caroline & Reese Fagan

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