Childhood Cancer . Childhood Leukemia

Friday, Dec 4, 2015 (Day 29 post CART cell infusion…7th day in PICU, 15th day in the hospital)

On December 5, 2015 by
Friday (Day 29 post CART cell infusion…7th day in PICU, 15th day in the hospital)
In the recap of the previous day during this morning’s rounds, it was advised that BJ’s heart stopped beating for 8 seconds (instead of the 5 that was reported yesterday). They ordered an echocardiogram this morning, and it showed BJ’s heart function is normal. Every test ran since that episode was normal.
BJ seemed more alert this morning, but he is still not able to talk. He was having some trouble swallowing last night, but it seemed a little better this afternoon. Speech therapy came to check his ability to swallow, and saw a delay in the swallowing trigger. Neurologists also came to do an assessment again today, and requested an MRI on BJ’s brain with and without contrast. Physical therapy came also came and put him in a wheelchair to sit up for a while, and see some different scenery. He seemed to enjoy getting out of the PICU room again for a while. Getting out of bed and into the chair, sitting up, and getting back into bed exhausted him.

BJ was moved out of PICU around 4pm today, and back to the bone marrow unit. We were glad to get back to a more comfortable place, in a room with a window, and where we both should be able to get a little more sleep. As soon as the nurses were getting him settled back in his old room, Radiology called for him to come down for the MRI. His doctor tonight came in later and said that the MRI showed some white matter disease, and a very small amount of blood on the right side of his brain. It also showed a very small amount of blood in the 4th ventricle in his brain. She said that Neurology will be in consult with the Hem/Onc team tomorrow, and will be able to explain any significance to the findings. It is very important that we keep his platelet count up, keep his blood pressure normal, and make sure he doesn’t bang his head on anything.

BJ ate a few bites of applesauce tonight, and drank some thickened Gatorade. He did great swallowing both. Later, he acted like he needed to say something, so I handed him his white board. With a trembling hand, he wrote “Is everything ok?”. I said, sure baby…everything is fine, and smiled. Then he wrote “Are you sure?” I need his head in this game. I need every focus he has to be on fighting, and rallying, and reclaiming his body from this hospital bed. I can’t tell him how scared I am at his climbing white blood cell count and blast percentage. I can’t tell him that the doctors are saying that right now, they are waiting to see which side will win. So I tell him that everything will be ok. He has always trusted God’s plan in his life, and that’s what we have to continue to do. He shakes his head in agreement. Then he reaches out two shaky, incredibly skinny arms, and looks at me with those eyes, and I lean in to hug him, and quietly pour out the rest of my soul in his shoulder.
Written by

I'm a mom with a heart split between my child on earth and my child in heaven.