Tuesday, December 30, 2008

Along for the Ride

Eating breakfast at the Ronald McDonald house, Killian experienced a sudden pain crisis. The pain crept right past the long-acting pain meds (recently increased) and walloped him. We gave him all the morphine we could, on top of a steroid and antibiotics he was on -- which took the edge off but did not eliminate pain. 

At Beth Israel, the pain doc added a numbing patch. Everyone agreed that it likely had something to do with infection. Killian felt a bit better by the time he got back to McDonald House. Then, Killian said, "I found the infection." It had burst through the skin behind his ear.  Cally was amazing (Phil was still parking the car): she ran to get gauze and other first-aid items, a tie for Killian's hair and other stuff. She was right in the thick of it all day. 

We have lots of family-type friends visiting today. I think Killian liked the immediate distraction. We all did. 

Killian's had so many incidents with pain, dehydration and now infection that we feel like it's safer if we stay in the City over New Year's Eve and next weekend. It'll be nice that we're all here together. 

Tuesday, December 23, 2008

Our Christmas Miracle - Together at Home

"There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle." Albert Einstein

Monday, December 22, 2008

Thursday, December 18, 2008

Eat, Eat...

Killian and I were treated to dinner (and take home) again by Candle Cafe owners Joy and Bart. It was the most I've seen Killian eat in a week. If you're ever in NYC and want to taste the best vegan food you will ever put in your mouth - stop by Candle Cafe or their other restaurant, Candle 79 on the East side. Joy and Killian have a plan to do a children's cookbook -- Phil to photograph.

Killian's nutrition is, again, a priority. He's lost about 10 pounds, continues to grow, and started out lean in the first place. He's at greater risk of infection, and debilitating fatigue and blah, blah, blah... He's so sick of hearing about it. I remember so many conversations with cancer caretakers going the same way -- "he/she won't eat.... I don't know what to do." The exasperation, the futility... Sometimes you have to push nutrition. Killian's had feeding tubes before. Twice. I don't know if we push or let go. I don't ask this because I want an answer or advice. It's a search and there's no map. I mean to say there's no map we want to follow.

He started to have a little pain in the area being radiated. Normal, we're told, after three/four treatments. The pain is addressed by dealing with the inflamation. We'll start with Ibuprofen (rather than increasing his narcotics).

Tonight is Callys' first concert. I never missed one of Killian's concerts. I cried every time I saw one, starting with his first at age 4. This prompted him at some point to declare, "only women cry from joy." Cally is a very good musician. She has in incredible sense of rhythm and an uncanny ability to rip out arpeggios. Phil will get it for me on video. I will cry.

Tuesday, December 16, 2008

Settling in at the "Scottish Castle"

We're at the Ronald McDonald House in Room 604. As we'll be here for the next 5 or 6 weeks, anyone wanting to send mail to Killian (or mom) can mail to:
Mansfield, Room 604
c/o Ronald McDonald House
405 E. 73rd Street
New York, NY 10021
So far, the trip downtown to Beth Israel and back is pretty straight forward on the subway. We tried the Ronald McDonald shuttle today, but the timing didn't work and we annoyed the line of folks getting radiation following Killian's turn because we were 15 minutes late. We also found a woman who rode that shuttle with us EXTREMELY annoying. As Killian put it, "she talked constantly about all her problems -- as if everyone else on that shuttle didn't have their fair share." We started to sing Christmas Caroles in hopes of distracting her, but weren't very successful (mainly because we couldn't remember lyrics for beans!) A charity (Friends of Karen) and Dusty our neighbor have offerd to pay for some cab rides to and from RM House. We'll take them up on it once the radiation starts making fatigue a serious issue.

Accomondations are fine here, but we'd rather be home with Phil and Cally. Winter break starts next week and they'll come stay with us at RM House then. Being all together as a family is so nice.

Killian had sold some Grumpy Fish T-shirts to Forbidden Planet (a famous comic store in NYC) about a year ago -- when he was last here for radiation. He checked in with Matt, the guy who bought them, to see how they sold. Matt said they sold out quickly and folks phoned for more. It was great to imagine folks we don't know wearing Grumpy Fish around NYC. Maybe we'll see someone one day.

Killian receives his third treatment tomorrow.

Tuesday, December 9, 2008

Going on a Tumor Hunt

The mass in Killian's mouth now gives new meaning to the word "intrusive."  It shifted in his mouth, challenging eating and breathing. Dr. Harrison at Beth Israel has reconsidered a course of palliative radiation after seeing it yesterday. This will not be toward cure and will likely not be directed at any mass except the one in his mouth. But, we're on for a tumor hunt! We left the City very happy about it yesterday. We don't know how many courses of radiation (or how many trips back and forth to the City). Killian just wants it gone. We go for a planning session today. 

We were very nervous yesterday, before the visit to Harrison. Driving down there in aggressive NYC traffic, Killian randomly banged on the glass. It scared me: I jumped in my seat. I told him he can't do that and that the traffic was nervous-making enough. He said he was sorry, but added that "if I hunted and ate you right now, you'd be really gamey." Nervousness continued when we met with Harrison's fellow. He seemed to be leaning toward it being too risky.  Then Harrison (bless him) looked in Killian's mouth and said, "that has to go." Today will far less nervous -- even if Killian bangs on things.

Monday, December 1, 2008


We are alternately inching, then sometimes leaping toward difficulties. There are more episodes of various levels of discomfort for Killian, which really brings him down a dark hole. Phil and I try to stay upbeat, because he's only down during the moments he directly experiences discomfort. Almost immediately following these episodes he's playing, making music or art, engaging in conversation. We have to stay upbeat for his bounce-backs. Everyone does. Otherwise we are a village of anchors.

He rallies when folks visit. Don't stay away because you're afraid of saying the wrong thing. What can you say? Play cards, share music -- some kindly folks from Hole in the Wall accidently left a Wii system here and I can't wait to see all my friends do Dance Dance Revolution.  In our home there is no such thing as looking ridiculous. If it's not a good time when you want to visit or call -- we'll tell you.

Our spiritual energies are centered on his good spirits carrying through Christmas.