minute by minute, hour by hour

Today has been one of the hardest days we have had in some time. Caemon is retaining a huge amount of fluid, so much that he doesn’t look at all like himself. No one knows why this is happening, only that it is, and he is incredibly uncomfortable.

Today, he also had his bone marrow biopsy, the first since his transplant. We won’t know any conclusive results for awhile, although we may have some information about some immature cells tomorrow. Those immature cells are called blasts. They are the ones that can also be leukemia cells. However, Caemon is also being given a medication sporadically that tells the bone marrow to spit out whatever it has produced, and this means, it spits out both complete cells and immature cells. Therefore, this is not necessarily a concern. Not necessarily.

Tonight, both his oncologist and the attending physician in the bone marrow unit came by with two nurse practitioners. Jodi was still on her way back from school, and it was a terrifying moment as they stood and brainstormed what might be causing this downturn. They volunteered all kinds of scary scenarios, but none of them necessarily seemed right. It just boils down to the fact that no one knows what is going on other than that Caemon’s body is holding fluid, and it’s eating up platelets as though they are a foreign body. They have a number of supportive measures they’re pursuing, but for now, we have to just watch and wait and hope that somehow he resolves this. For some reason, I think it will, for as easy as it is to go down some pretty scary paths, the truth is that his body is still recovering and that a lot can be happening.

Our social worker friend and our nurse today both reminded me over and over to take things minute by minute, hour by hour because we cannot do much else right now. We just have to watch over our poor swollen little crocodile, make sure he gets everything he needs, and hope hope hope that we move past this soon.


20 thoughts on “minute by minute, hour by hour

  1. These are the moments as you well know where faith in the magnificent human body, faith in your love, and faith in change are the hardest but most crucial ideas to remember. You are not alone. There are dozens upon dozens of friends and family loving you and holding you in their hearts, myself included. I love you!

  2. What a rough day, poor baby … how miserable. What a trooper.
    I agree the human body can do amazing things, and medical knowledge these days is incredible. It blows my mind to hear that these medications even exist that are so smart.
    You do indeed have a big team on your side, inside the unit and out here reading.
    Love and light every day! May tomorrow bring answers and may the fluid resolve and bring back the recognizable Croc.

  3. Holding you in our thoughts, moment by moment, day by day. Your strong little crocodile will fight his way through this latest challenge, he’s amazing, his Momma’s are amazing xo

  4. the other day, we told jude and ziggy to go pick out their clothes for the day. independent of each other, they went to their respective dressers and pulled out their croc shirts. they are most definitely going about their days in solidarity with their brother, caemon.

    h & i send so much love to you all.

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