Monday, April 27, 2009

Bad Scans

Killian was in an MRI machine for 3 hours Thursday night. We decided that was a record length for scans. He says he made a video game in his head. Each video game was improvised and each was different, timed to the loud clicks and beeps of the MRI taking pictures. The cycle of each image being captured went longer than his made-up video games though. "I got bored with each game before the imaging was done.” I found out about his mind games because I asked him “how do you get through this shit?”

I certainly thought it stunk that Killian was in an MRI for 3 solid hours that night….the results of the scan stunk of black soul id garbage. We asked Killian what he wanted to know. He asked about the arm (“it’s disease, in the bone”) and the head (“yes, there are spots on your scalp”), but that’s all he wanted to hear. He hit some things and raged at the unfairness. Then, he said “stressing out is not helping,” cursed some more and then took some Atavan. Then Phil, Killian and I picked up ukuleles and played Tonight You Belong To Me. Killian nailed the harmony. I love his voice. I told Cally as soon as she got home from school. I asked if she had any questions or wanted to talk. She said, “I just want to be with my brother, then go to Dusty’s pond for a swim.” It's 85 degrees today. Killian wanted, more than anything, to eat the hushpuppies from the fish farm near Jump-Jump’s in North Carolina. They were the best he’d ever had, he said. Difficult request to fulfill, given we’re in the Catskills. Instead, we will meet Jim and Sharon for inferior Yankee hushpuppies at Hickory Barbeque. We are celebrating Mandy and Derrick’s engagement, a small miracle for which Killian feels he was pivotal. He’s not wrong. It’s all connected.

Wednesday, April 22, 2009

Riding the Wave

The Listening Party was exuberance in action. The weather could not have been lovelier. Kathy came over and gave Killian some acupuncture before the event. When we got there, Cat and her crew had the place decorated so beautifully. Everywhere I turned, there was someone I was thrilled to see, or a gorgeous plate of food (thanks Mom, Anne Marie, Mary, Christine, Candle Café, Lisa Protter, Margaret, Cara and anyone else who made food). The joy in the room palpable—I’m bottling it with Angelica oil and selling it on Etsy. We’re sure that good things will happen for Killian’s project, Phil and I are most pleased that so many people had the opportunity to hear Killian talk about Integrated Therapies. Killian spoke beautifully about the role nutrition, acupuncture, reflexology, etc. has played in keeping him feeling good. He is whole, and full of life—and this is evident. He talked about how these therapies make him feel like he has options and that his dream is that more people “open their minds” to other forms of healing.

After the party, Killian hung out with Molly, Crash and Liam (who actually broke out the trombone for a little jam). Killian looked both exhausted and thoroughly happy. We left the next morning, with Kathy R. giving us a ride. I caused stupid inconvenience by leaving my cell phone, wallet….basically everything back at the house (“hello Barbara, this is Freud calling from your cell phone—might you be needing this device?”) We waited at the Shell station on 28 for Phil to meet us with my neglected items, when I saw Peter. He’d offered weeks ago to take over dealing with record companies about Killian’s project, and was still hot on the case. I’m not able to process business these days. This is SO unlike me. Instead, all I remember from our conversation is that Milo (his son) had a bad soccer loss and took it really hard—which struck me as odd as I always thought Milo was impervious to such losses.

We had such a great ride down with Kathy. We listened to Anne Peebles—I didn’t know she wrote Come to Mama, I just knew KoKo Taylor’s version of the song and had assumed she wrote it. I began to wonder (this is when I pulled Kathy into a fantasy band) if we could pull off a collection of lullabies for children, culled from really intimate blues songs like that one. It took dropping me off in the rain at Beth Israel to pull me back into current reality. Once we were in the radiation clinic, Killian was congratulated on his last treatment. “What???” Apparently, the dose of radiation per session had been increased, thereby shortening the duration of the treatment plan—except no one told us. We had too many other medical plans to leave straight away, but Killian’s first question was still, “can I go back to school tomorrow?” Tomorrow he has scans, plus I’ve tried all week to arrange a surgical visit for a little outpatient thingy he needs done—no luck though. SO, after some this-a and that-a, we’ll be home Friday. Yahoo!!!

Wednesday, April 15, 2009

Somewhere Else (Listening Party)

This Sunday, April 19 at 11:00 a.m. is the first time folks will be hearing songs from Killian's recording project, Somewhere Else. So many amazing musicians have contributed their time and talent to this project, which will benefit the Hope & Hero's Integrated Therapies Program for Children with Cancer. Bless them, bless everyone else who is helping to make this happen, and bless Ralph Legnini. I will be thanking you all for some time to come. Gratitude is grace.

If you're in the Woodstock area and I neglected to invite you, c'mon by (it's at the Center for Photography at Woodstock). rsvp by commenting on this blog entry. Whether you're in the area or not, please become a fan on Facebook by following this link:

Friday, April 10, 2009

14th Street's Not the Same

Killian says something else is going wrong with his arm. Yesterday he had 2 pain crises: one in the middle of 14th Street, where I gave him Roxonol and where Cally cried as much as he did. Throughout the rest of the day, she had as many physical issues as he did—the race was on. And, every incident seemed to be in public (like slamming her finger in the bathroom door at Candle Café). I understand, it’s her birthday and she should be the focus. I said (when we went to rest up from the drama at the Payless Shoe on 14th St.), “you’re having to deal with some things that no 9-year-old should have to deal with.” Still, it’s her birthday and the week should have been dedicated to her (statues erected too.)

I asked Killian if he thought the pain in his arm is disease. He said he didn’t think so. I asked if he wanted scans before radiation is done. He said he did. I waited a few hours and asked again, “are you sure you want scans before the party for your album?” He said he just wanted to know what’s going on with his arm—only his arm. I’m not even sure Dr. G. would order an xray and then MRI of just his arm. Phil and I have emailed her and we’ll see.

Monday, April 6, 2009

Prepare the Rubber Duck!

Cally came to Ronald McDonald House with us this week. She loves it here--loves doing crafts with the other kids and hanging in the community game room. After Killian's treatment, we went looking for rubber ducks for her birthday party this coming Saturday. I'm not sure how the whole rubber duck craze started. I feel like I'm missing something, that someone will fill me in on what it all means. I assuming it doesn't have some salacious significance I'm not clued in to--they look too cute for that. Some woman holds the world record for having over 2,000 distinct duckies in her collection. Still, not sure I get it.

Though we searched quite a bit, we did not achieve a high degree of duck variance. However, we did find ducks that light up and change colors like they are their own mini discos. Please post to the blog if you know anywhere to buy rubber ducks in Manhattan.