Day 730/102


We’re watching fireworks over the Skyway from the seventh floor, just like we did on New Year’s Eve two years ago, after our world was turned upside down by Benjamin’s diagnosis. I am relieved to sit with this blank space in front of me. I have been on edge all evening and I need to return to gratitude. There is so much to be thankful for tonight.

At the top of the gratitude list tonight is the fact that Benjamin continues to feel better and stronger every day. He had a terrific day today with only a few moments of belly pain. He ate very well. He is negative for C. diff and off of isolation. He walked around the floor today, played in the play room, laughed and had fun. His lab numbers were improved all the way around this morning with a blast percentage lower than I’ve seen in far too long–10%. For the third day in a row, he wouldn’t need any transfusions. Clinically speaking, Benjamin improved today in every category.

Benji was feeling so much better that I felt I had a solid case for a weekend discharge. Everything is more stable than it was last weekend when we went home. But we were denied. Benjamin is still profoundly neutropenic with an absolute neutrophil count of just 80. The team felt that it wasn’t worth the risk of going home and increasing his exposure to an infection right now. If CHOP says jump, we need to be ready to say how high. I understand their reasoning and I guess I even agree with it. But I had my hopes up–clearly a lesson I should have learned by now.

Even without the discharge, today we were tasked with moving everything out of our room. Benjamin has been off of antibiotics for C. diff and asymptomatic for 48 hours. In order to be off isolation, we had to leave the room so that it could be “terminally cleaned” by the housekeeping team. We also had to bleach everything that could possibly be bleached before it could reenter the room. The whole process took several hours, but I was grateful for the work to do. It kept my mind occupied, and if it prevents the dreaded bacteria from returning, then it will be well worth it.

We had sweet visits today from Kathy and Gana in the morning and Michael’s cousin Melissa in the afternoon. In the evening, it was just the four of us. We got settled back into our squeaky clean room and ordered a nice dinner, which Benjamin devoured. To commemorate the second anniversary of Benjamin’s diagnosis, we gave rainbow stars to every other family spending New Year’s Eve on 7 South. But mostly, we just enjoyed the normalcy of us.

Michael and Banyan are staying long enough to ring in the new year with us in just a few minutes. The fireworks are increasing in their beauty. I think I’ve been on edge because I just can’t believe we’re here tonight, two years later. I can’t believe all that Benjamin has had to endure. It’s crazy, really. And I know that whatever is next for him will hold unprecedented challenges. We will walk proudly by his side as he meets these challenges and overcomes them, one by one.

I am so deeply proud of my tribe, and of the love that has underscored each of these last 730 days. It is a solid and mighty foundation. I don’t know what will happen in 2017, but I know that this big love will be there for us as it unfolds. I am grateful to be in the presence of it tonight.

10 thoughts on “Day 730/102

  1. Happy New Year to you all. I am so very proud of you all today and everyday. So thankful he’s feeling better. Love you

  2. Yahoo!! 10%… !!
    Praying for a perfect clear path and that every day is like today.
    Happy New Year!
    Much love from All of us!

  3. Happy New Year to the most inspirational family I know! BIG ❤️…..
    Are we doing Words of the Year? ❤️

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