Imagine pouring poison in to your child’s cup and telling him it won’t hurt him. It leaves a Munchausen By Proxy taste in one’s mouth.  That’s how I feel about Chemo after today. Give the child poison! It will make him feel better?

We are starting to see some signs of wear and tear on this boy of mine. He got out of bed only once today. His “tummy tastes funny.” Today he had one bite of a donut, a soft pretzel, a few fries and 8 saltine crackers. He’s losing weight. More weight. The one smile I got out of him was when the phlebotomist came to our room to draw my blood for stem cell testing.

I made a big deal out of it; made sure he could see her doing to me exactly what had been done to him. Mind you, I despise having blood drawn. I always look the other way, tense up and envision metal.  After everything I have seen this child go through the last ten days, I felt NOTHING as she stuck me and I watched the blood leave my body. Two big sanguinary vials which would normally make me gag.  Ashton grinned at me.

Ashton is very in tune with Beads of Courage. He gets a yellow bead every 12 hours for his chemo and he got two red beads today for blood and platelet transfusions. He also got a Rainbow Bead (his third). A Rainbow Bead means you had a Terrible, Horrible, No Good, Very Bad Day (to quote Judith Viorst’s reknowned children’s book written in 1972). The first two Rainbow beads were for 1. The Day We Found Out Ashton Had Cancer and 2. The one-level under Code Blue visit to the ICU. No more RAINBOWS. Damn it.

Everyone says I’m strong. I can tell you that when the lights go out and I’m alone, I am anything but strong and I wonder how all those people on the expressway I see from our window keep getting up in the morning and continue to live their regular lives. Do any of them have sick children? I wonder about everyone’s inner struggles.

My mom sits on the couch in the room with me and I feel miles away from a connection with her or anyone. I am numb? That was on the Quality of Life questionnaire I filled out today. “Do You Feel Numb?” Yes. That’s a definitive yes. Do I feel isolated and alone? Am I worried my child will die? Yes. Someone died on this floor YESTERDAY. Yes. I am afraid.

Today gave me a glimpse of what is to come. I am primarily afraid I will implode from holding in my fear. Being numb can only serve me for so long. I pray all day long in my mind. Mostly the Our Father. Or, I pray to Mary:

Hail Mary, Full of Grace, the Lord is with Thee. Blessed art thou among women and blessed is the fruit of thy womb, Jesus. Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death. Amen.



One Comment

  1. JT

    Prayers are with you both. I went through Leukemia twice as a boy and I know exactly what Ashton is going through. Keep on being positive and take one day at a time. That is all you can do. I am now 37 with a child & wife so I will be praying that little Ashton will have a long and wonderful life ahead of him too!! Be strong and keep on fighting!!!! We are thinking about you.

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