Saturday 10 May 2014

Days of daze

"Come now."

That was the text from Trish's mom as we were putting dinner in the microwave.

As we ran to the ICU, the hospital's intercom rang out: "Will the parents of Dominic Rooney please return to the ICU."

And yet, somewhere in the back of my mind I was still worried about the chicken we left sitting out in the communal kitchen.

When Dom turned up with PTLD this week, he had swollen lymph nodes and a mass about an inch long behind his throat.

Once he had the nasty reaction to rituximab and wound up in the ICU, an eye, nose and throat specialist came to give it a closer look.

The doctor had first seen him Wednesday. With precision comedic timing he walked in to the room Thursday, put his hands up and exclaimed "What happened?"

Now with a breathing tube down his throat and pumped full of morphine and other sedatives, Dom is a couple steps away from being in a coma. He needs to be kept asleep so that his body can recover. And yet he continues to frustrate the nurses by twitching his head, moving his arms and lifting up his legs. It means they can't venture far from his bedside.

It also reminds everyone he's a fighter.

They gave him an extra shot of sedative as the throat doctor got his fingers in Dom's mouth to feel the lump.

He came back Friday and did the same thing. "It's a bit smaller," he said, clearly glad to pass along the news. He doubts it's cancerous, probably a dead lymph node. We're waiting to hear how serious the PTLD is too, as it could be anywhere from a simple infection to full-blown lymphoma (cancer).

An hour later was when we went to have dinner. The doctor must have agitated the mass because suddenly blood was leaking from Dominic's mouth, thus the emergency text and hospital-wide summons.

After the initial shock we were able to go back and recover the chicken. Yes, I know, that was the detail you were most concerned about.

The blood in his mouth is clearing. It was dramatic but hardly a setback. The next stage is all about stabilizing him and eventually waking him back up. He still has fluid on his lungs and is on heavy doses of antibiotics in addition to all of the other drugs he was on as a bone marrow transplant recipient.

Some of the drugs are to combat the PTLD, which we've learned is as rare for him to have as the subtype (7-12 chromosome translocation) of AML that was diagnosed. There are seven known cases of PTLD in a bone marrow transplant recipient this young. The only four who survived got rituximab; the other three didn't.

In other words, as soon as his body is ready to try again, we're going to give him more of the drug that put him in the ICU. The doctors say he's less likely to have a reaction the second time, but we'll hold our breath just the same.

The chicken was delicious, by the way.


  1. Dom IS a fighter! Praying hard for your little man!

  2. What a roller coaster of a day. Thank goodness it all worked out and you were able to enjoy the chicken. I believed and trusted Dom would be fine. I wasn't so sure about the chicken.

  3. I can't even imagine being in your shoes (and gown). Continued thoughts, prayers and hugs. Wish we could do more.