More Twists and Turns

We made our decision…methotrexate and prednisone is it. Prednisone is the only therapy we know he responds too, and methotrexate is much less toxic vs the other chemo. This combo is unlikely to cure him, but it will buy us time for his body to recover further from the toxicity of the ineffective 2-CDA. It buys time for the genetic tests to come back which may change our treatment course. It also ensures we haven’t just hit him with a sledgehammer (clofarabine) should those tests show he needs a bone marrow transplant.

We are at peace with our decision.

We get the call from our doctor the blood test for the fungal infection is a false positive, so it is back to the hospital to get the chemo.

They are preparing Jenson for the methotrexate by hydrating him with fluids. A couple hours later Jenson says, “I can’t yawn. It hurts here.” He points to his right lower rib cage/stomach area. He tries to yawn again and repeats the same thing.

Oh great – yet another twist and turn.

The doctor on the floor comes in and orders x-rays before they will start the chemo. X-rays have become our least favorite thing in the whole world…literally #1 on the list. He is SCREAMING as we enter the room.

“No mommy, help me. No do let them do this,” he says to me. Those words pierce right through the heart.

“Need daddy and Sydney too,” he says.

I reply calmy, “Daddy is with Sydney now but they are coming to visit you. So when we are done, we will go see them."

My job is to convince him to stop crying as people he doesn't know contort his body in crazy positions so this huge machine above his head can take pictures. I deserve hazard pay because it takes years off your life. I HATE x-rays!

When we finish we go see Daddy and Sydney in the room.

About an hour later, we do our standard family shift change - Sydney and I leave for home around 7:30pm while Doug makes his bed for another night at the hospital.

I call Doug around 9pm. The x-ray results are fine, Jenson is in less pain, and they are starting the chemo soon.

This morning when I arrive at the hospital, I see a large bag of liquid that
resembles urine hanging from his medical pole. Methotrexate apparently looks like a giant bag of pee. It is given for 24 hours straight. You don’t get to leave the hospital until it completely clears the body (which is typically 3 days but can take up to 10).

Jenson is still mad at me for the x-rays yesterday.

So far no chemo complications, but we know to take it one day at a time because each day brings it’s own adventure. We are praying for some straight open highways for a while.

Kristin