waiting game

We are in about Day 23 of Caemon’s most recent round of chemo. His treatment stopped on Day 8, so for the past two weeks or so we have been waiting for his counts to drop and then climb. They have started to inch up bit by bit. His platelets seem to recover most quickly, so they are on the rise, as are a couple of other counts. However, the cells that everyone is watching now are the neutrophils, and they are taking their time. Our doctor reminded us last week that he didn’t recover until Day 28 last time, so he is right on track.

Why does this matter so much? If Caemon’s counts recover, and if his neutrophils reach a “safe” level, we will get to go home for a few days before we are admitted for transplant. We all need this reset desperately, but our boy particularly needs some time free from tubes and beeps and a hospital bed. This next admission–the big event–is going to require him to be confined to his room for the duration of his stay. There will be no more playroom or wandering the halls to visit the nurses. This will be hard on our boy who loves seeing his surroundings, which is why it is so important that we have a few days of relative freedom.

In just nine short days, Caemon is going to be admitted as a bone marrow transplant patient. His conditioning regiment of chemo will begin, and will begin this process of taking the ultimate step toward saving his life and beating this disease.

9 thoughts on “waiting game

  1. Yes and amen! He’s slowly but surely coming out strong! So glad to know all is going well…

    Best wishes! I hope you can go home!


  2. Reading everything you write and I feel your words. I know what you mean about the village-family, described in your previous post. More than anything my volunteer work at Oakland Children’s fills me with a sense of being part of a perfect city for children; which is as a family. Just know that on the other side of your experience are people like me who love you for letting us be so close a part of your world. Here too is hoping that you get a few days if respite before the big day.

  3. Thank you for the post; I am reading everything. Your previous one about the hospital as a family who love Caemin. I can tell you that my time at Oakland Children’s feels like being part of a perfect city for children where parents such as both of you open your hearts to the people around you and let your light and that of Caemin shine into the other side of that world: nurses, doctors, volunteers…who you let love your boy. Now you let it radiate out beyond your experience for all if us to read. Thank you so much. Here too is a wish for a respite at home before the big day.

  4. I’m praying for some home time for you. I know it will make a world of difference. Sending lots of love and positive energy as you enter the next phase of his treatment. xo

  5. We are praying for Caemon every day. Zahrah likes to send positive thoughts to Caemon weekly, or as often as she thinks of him, which is frequent. It feels like he is going to come out of this very soon!

  6. Clicking my heels together for you to go home! And everything else I can do to send all the love, light, and healing energy your way. The mountains are in sight…

Thank you for your replies. We appreciate every comment.

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