A Brief Reprieve, a Bad Day, and (maybe) Graceland

A brief reprieve, a bad day, and (maybe) Graceland

Steven is just about to finish his second week of radiation. Tomorrow he receives his 10th (out of 13 total) treatments to his whole brain and spine. Starting next Thursday, a week from today, he begins the second phase of his radiation treatments, focused radiation directed only to his tumor bed. There will be something like 19 total treatments of focused radiation, then we get to come home for 4 weeks or so. It's still up in the air whether or not we will have to return right before or right after Christmas, but it looks like a sure thing that we will be home for Thanksgiving.

Steven is weathering his radiation treatments very well. The people who go in and line up his spine seem to have gotten the hang of it, and typically it doesn't take longer than 45 minutes total. He emerged from his first few treatments flushed, like he had a sunburn, and would feel really tired for the first 2 hours or so after, but those symptoms have lessened and now he's handling it like a pro.

We had an all-too-short reprieve last weekend, a flight from Memphis to San Jose in CA, for the Jordan and Kyra Memorial Golf Tournament in Aptos. The Jordan and Kyra Foundation raises funds to support pediatric brain tumor research, and was started by my niece Kyra's uncle David after her death. Ironically, we had signed up for the tournament in August before Steven was diagnosed. After his diagnosis, the foundation generously offered to comp our rooms at the resort and to pay for plane tickets for Steven and me.

The weather was beautiful and hot, it was warm enough to go in the ocean. Steven had a wonderful time and got to play golf, and most importantly, we were reunited as a family again. It was almost possible to pretend that things were "normal" again and that we were spending a warm fall weekend going to the beach. Saying goodbye to my husband and my 6-year old son when they left to drive back to San Diego on Sunday was a horribly painful experience for both Steven and me-- my 6-year old sobbed and clung to me and wouldn't let go for over an hour. Monday morning at 6 am, Steven and I left to return to Memphis for a late afternoon radiation appointment at St. Jude's.

Steven began the planning for his focused radiation, a 2 hour session, this time in the CT scanner. They tell us they need IV contrast for the CT scan, and they schedule it late in the day, 4:00. Contrast means we can't eat all day, so we don't.

They take him off to get an IV for the CT scan. Steven has a needle phobia, and his fear of IV's is astronomical. We go off to the room where they insert IV's for contrast. A woman from Child Life accompanies us, bringing along her bag of distractions for frightened kids. A matter-of-fact male nurse comes in and attempts to insert an IV into Steven's hand.

Twenty minutes later, despite being stuck once with a needle, the IV is not in and he is sitting in my lap, screaming, sobbing, kicking, and struggling with two nurses on either side trying to calm him. The male nurse slams his equipment down on the table and stalks out of the room, saying, "I won't do this. This is torture."

Another woman comes in and attempts it again. Despite more of the same screaming and panic, she manages to get the IV in, but when they try to flush it, his skin bubbles up and they need to take it out. By now, Steven is screaming uncontrollably, all hint of rational thought gone, I'm crying, and the nurses don't know what to do. The radiation oncologist comes in and says they can do it without contrast. Steven and I go to the waiting room and I hold him for 20 minutes until he stops shaking.

They make a mask for his face, kind of like a hard mesh that softens when they get it warm and wet, while its wet they place it over his entire head and screw it into the table and it hardens in the shape of his head. They cut a hole for his mouth, and he bites into a mouthpiece, very similar to what the dentist uses when they make a mold of someone's top jaw.

The mouthpiece has LED's on it, and there is something that detects the position of the LED's. The purpose of the mouthpiece is to detect whether Steven's head is in the correct position for radiation, and to detect any small movements of his head. It is a new experiment, and Steven is the first person to try it out. They have selected Steven because of his wonderful ability to hold completely still, even under great discomfort.

Steven has a bad cold, runny nose, and cough, and for all practical purposes can't breathe through his nose, so having a mesh mask covering his head and a mouthpiece filling up his mouth isn't particularly pleasant for him, he makes little noises without moving when he needs to blow his nose or cough, I hear him and signal the techs to come in and remove the mask and mouthpiece periodically so he can cough and blow. It's long and arduous, but again, he handles it all like a pro.

Tomorrow, more pictures with the mouthpiece and the mask, and the beginning of our first weekend alone in Memphis. Maybe we'll go to Graceland, just like that Paul Simon song, me and my 9-year old travelling companion...

- Kathleen