be here now

I don’t have a lot to share tonight other than that we’re pretty scared and trying not to be. Words like “relapse” have entered the picture, and while there is no solid evidence of this so far, there are lab techs coming in on the weekend to try to complete in two days what normally takes much longer because they want to make sure Caemon’s JMML mutation is gone. They want to make sure the immature cells his marrow is producing aren’t leukemic. The doctors are guessing because no one can quite figure out what is going on with our sweet boy.

Today, Caemon weighed 17 kilos–approximately 37 pounds. He’s usually closer to 14 kilos. He is retaining so much fluid that he is hardly recognizable. He is uncomfortable, much like a very pregnant woman might be. Still, he felt better more often today than yesterday. He played in the morning and this evening, he played with playdough for well over an hour. He even recreated some of the foods he likes to make at home. Unfortunately, he’s not actually eating more than a bite or two of food each day.

He also can’t hold onto platelets. His body seems to have developed an immune response to them in that it may be attacking any new platelets that enter. The blood banks are working to find specially matched platelets in hopes that he can get a boost until his body starts making them. His neutrophils dropped today too, down below 500. He is neutropenic again. This can be the sign of an infection. This is honestly what we’re hoping for.

There are possibilities of viruses lurking, of other strange phenomena, and we’re clinging to that, but it’s so hard to know what we are facing. Tomorrow we’re hoping for results on his bone marrow, to learn how much of the donor’s marrow has engrafted. They can’t take any steps until we learn more about that. We’re just trying to live in each moment, to soak up every bit of him, to give him every ounce of strength we’ve got.

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27 thoughts on “be here now

  1. Kathy H

    Thank you, thank you for taking time to share. It’s better to hear what is than to hear nothing. I hope you get to hear what “is” going on soon!

    Play-doh is a wonderful invention. My grandson is addicted (seriously) to it. He just likes to squeeze and roll it. It relieves his stress, and it’s a great tool for the imagination.

    I don’t understand all of the details and terminology, because I’ve never studied leukemia, but you write about it in a way that I get the idea. Hang in there! This is a bump, just a bump …

    Reply
  2. Clemency

    I am so sorry that things are so tough right now. I’m wishing so hard for change and thinking of you all. Have the doctors mentioned the prospect of splenectomy as a way of raising his platelet count, if they think it is an autoimmune phenomenon? Or is his condition too fragile right now?
    -Clem

    Reply
  3. lezbemoms

    It is sweet to know that even in the midst of all of this, a little boy can still find time to simply play with one of childhoods greatest inventions.

    On the other hand, I can’t imagine what you as his moms are going through- how scary and I truly hope it resolves itself soon!

    Sending love and light.

    Reply
  4. Angela Trathen

    Following – blasts of healing love sent your way – may comfort find you in these wishes for peace sent to your little room in the big city – We got Croc on our minds and in our hearts – BIG LOVE –

    Reply
  5. Laura

    I will hold Caemon in my thoughts and send love to you in a wave of prayer. It will look like the fog rolling over Sonoma Mountain in the summer evenings. Cooling, soothing,refreshing,healing the heat of the day. Breathe it in and feel it envelope your body and spirit.

    Reply
  6. Sheryl Hott

    Anxiously waiting to hear things change for the better. Prayers and love are all around you. Keep doing the good you are doing.

    Reply
  7. Byucat

    Prayers aplenty from this southern Nana! I too hope this is just a small bump in the road to full recovery…Is there a way to mail him cards..if so I may of overlooked it and would love to send some, as well as to his amazing mothers. My heart and prayers go out to you all!

    Reply

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