no magic “reset” button

As much as we had hoped for a trip home–and were planning for one tomorrow–it looks like we are staying right where we are. Caemon had his bone marrow biopsy and lumbar puncture (spinal tap) yesterday. He went through his procedure very well, and the doctors had planned to send us home today. His neutrophil count was on the rise, and while not at the usual number for going home, they felt confident that he would be fine and would benefit from the trip home.We started packing in anticipation of a speedy departure today so that we could enjoy our time at home.

Then, last night, Caemon spiked a fever. We are staying right where we are. Caemon was started on broad spectrum antibiotics again, blood cultures were drawn to try to detect any infections, and our trip home was put on hold (although we know very well that it has, at this point, been cancelled). In a moment like this, when we all needed that reset, it is hard not to feel that disappointment. The next step on our journey is another long one, so to have the opportunity to refresh ourselves and have some time together as a family was important. Caemon particularly needed it. He has been struggling with being in the hospital for so long and has started to melt down far more regularly, which is not a typical Caemon characteristic.

But despite all this disappointment, the fact is that we are where we should be. Because he is severely neutropenic, and because he does have a fever, we need to be somewhere where he can be treated, where he is safe. It may not be our ideal, but how fortunate are we to have the wisdom of modern medicine to help us through a time like this–a time which used to be far more life-threatening for leukemia patients.

As a family, we will find our reset button. Monday and BMT and a whole new outlook for Caemon are still on the horizon. We have that.

7 thoughts on “no magic “reset” button

  1. That’s so disappointing. I’m so sorry you don’t get to reset at home but so glad that Caemon is in a loving place where everyone is taking care of him. Sending strength.

  2. Yes, a toughy. But you are right, you are where it is safest for Caemon and that is vital. Sending lots of love to you all. How lucky you are to have a close and loving family to help you through this time.

  3. You are in a sacred circle, in a sacred space on the planet. This wind and rain will cleanse and clear the path ahead. Everything is coming together as it should. We’re all with you.

  4. Hi Timaree and Jodi and Caemon,
    Carol’s writing has inspired us to want to be involved in Monday’s important event, so about a dozen of us are going to be doing a Gathering of Light ceremony for Caemon on Monday about 4:00 PM in our local Unitarian Universalist sanctuary. We hope to take a picture somehow and post that for you all to see. Our minister friend will be leading the ceremony, she has performed lots of interfaith ceremonies, and is a very loving and spiritual Woman. We’ll be with you on Monday sending lots of light!
    Linda, Roger, Shannon, Bill, Tyler, and Jared (who remembers meeting Caemon last summer!)

  5. I’m so sad to be reading this. I know that Caemon is where he needs to be at this time. I was just hoping that you all would have gotten to go home. I hope the fever is short lived. Thinking about you tonight and tomorrow you all will be in my thoughts and my heart will be holding you all tightly.

Thank you for your replies. We appreciate every comment.

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