Tuesday, November 25, 2008


We have been receiving meals from friends. A consistent outpouring that has really lightened the load. Killian has requested that I cook for Thanksgiving, though. It makes me happy that he's requested specific dishes he feels are traditional musts (chestnut stuffing, my gravy, a turkey from a local turkey farm...)

Lucia and Cally had the "ultimate sleepover" this past weekend. Everything was precisely timed, as there were so many activities they needed to cover. They included Killian in the sleepover. He received a facial and danced at their dance party, but declined their offer of a makeover.

He's been feeling pretty good. We have a wider variety of pain meds at our disposal and feel confident that we can get through Thanksgiving without pain. We're also hoping for a stay from the bleeding and hospitalizations. We will give thanks regardless. We're thankful for all who read this. We're thankful for the love that visits us daily. We're thankful for the music, music, music that connects us and helps us boogie. 

To replicate the sleepover vibe: listen to "Idiot Boyfriend" by Jimmy Fallon while enjoying a facial mask with chilled cucumbers over your eyes. Niiiiiiiice.

Tuesday, November 18, 2008

Benefit Recording

Killian is pouring his energy into recording a bunch of songs. Ultimately, he wants the recording to involve as many well known musicians as possible so as to bring financial benefit to the Integrated Therapies Program for Children with Cancer at Columbia Presbyterian ( http://integrativetherapies.columbia.edu/PandF.html ). Killian has been a true pilgrim for the Program -- helping children (and some doctors) open their minds to the role that nutrition, visualization, acupuncture, yoga, massage, aromatherapy and alternate therapies can play in not only fighting cancer but also living a full life. He's advocated that these therapies are essential and should be available at all hospitals, regardless of patients' ability to pay for such services.

Ralph Legnini (E Boy Music) is producing this recording. He's getting tracks of Killian on ukulele, fiddle and some singing during the periods when he feels good. Ralph lives about a mile from our house. 

Today Killian said he had a dream that he suddenly owned lots of pairs of boxers that were brightly colored and in him dream the acquisition of brightly colored underwear made him happy. We'll try to interpret this dream later.

Thursday, November 13, 2008


We're back home. It's far better than hospital -- in some ways. It jags the nerves to not have a nurse button within reach when Killian is in pain.  We are not without resources at home for pain management, it's just that button, for some inexplicable reason, provides a measure of comfort.

Today, Killian recorded "Blue Skies" at Ralph's studio. He started to work on another song and had a pain episode. I know they'll happen any time, anywhere... I just wish I could in some way prepare.

Neighbors and friends are bringing us food, flowers, and all kinds of support. It is so helpful and so appreciated... crowd surfing the mosh pit of cancer. 

Tuesday, November 11, 2008

Taking Lollipops Home

So, tomorrow the game plan is to leave Columbia Presbyterian in the morning. The big event is a shower for Killian. I will kind of miss the punked out, wild man hair style. He will not. Killian cannot wait to get out of here. We've had a steady stream of pleasant visits, but he's itching bad to get back to some kind of normal. Some kind of normal.

A healthcare professional will visit us daily starting Thursday. We're not sure about school. He will continue to work on school stuff with Markus.

To add to the concoction of drugs keeping pain at bay, we now have the Fentanyl lollipop. As the doctors were warning us to hide these dangerous candy-posers from little Cally, I remembered a conversation I'd had with Breon. She was asking if I had hid Killian's drugs. Somehow it hadn't occured to me (the ultimate troubled teen) that his wide variety of opiates might prove a bit tempting to his teen friends. For those reading this blog: you will never find Killian's drugs, so don't even try. Help yourselves to the chocolate milk though.

Monday, November 10, 2008

Unwarp Successful

The Head/Neck folk came in this morning and undid Killian's compression bandage. He was scared, as were his dad and I. However, all went well with taking the pressure off the wound. The hole in his neck is sealed with necrotic tumor tissue and his bleeding appears to be stabilzed. The bleeding from the tumor base in his mouth is also stablized. He's roaming about the hospital now, looking for an escape route. I hidden his shoes, just in case he finds one.

Sunday, November 9, 2008

Unwrap Tomorrow

There was a lot of bleeding from the remaining tumor tissue in his mouth yesterday. We tried a couple of conventional drugs, which worked very temporarily. It was exhausting and frustrating for Killian. Diane from Integrative Therapies happened by just as bleeding in the mouth started anew. We had already discussed and had sanctioned by the oncologists in charge using Yunnan Paiyao to stop bleeding. This herb, a form of "false ginsing" was used in several Asian wars and is known to be quite effective for even hardcore gunshot wounds. It worked almost right away. When the Head/Neck on-call doc came by, we told him what had happened and what we used and he kind of freaked out. Killian stopped him dead in his tracks, saying, "you HAVE to open your mind to other kinds of medicine, man!" We explained this had been sanctioned by the oncology department. Turns out, he had never heard of the Integrated Therapies program. He left, interested enough to write down the name of the herb and relieved that it didn't come from some rogue alternative medicine person off the street. I told him he should be very proud that his institution has such a program.

The Yunnan Paiyao is still working, and there has been no bleeding today. Killian saw some visitors this afternoon and then ran out of steam. Timing is everything these days. Speaking of which, THANK GOODNESS for Candle Cafe's timing. They stocked Killian (and us) up with amazing and nutritious food to sustain and stregthen our diminished forces. Killian keeps getting trays of hospital food, although we've told them not to bother as it will be wasted. We look at what they send, out of some macabre curiousity. Twice now, they've sent this mysterious mound of green stuff that we speculated might have already been digested. Curiousity got the better of me, and I actually put some of this green stuff in my mouth. It was pureed peas, with dessert-level sugar added and some extra overcooked peas added for texture(?) or visual interest (?) or I don't know what. Whoever is in charge of nutrition here is perpetrating the food equivelant of the Peter Principle -- rising to the top through outstanding incompetency.

We're all a bit nervous about the Head/Neck doctors taking the wrap off tomorrow. But, that's the next step, so we will get through the night and BREATH...

Saturday, November 8, 2008

Post Embolization Stay

After an extremely rough embolization procedure, Killian is now stable and in room 518 at "Babies" hospital (Columbia Presbyterian) in NYC. During the procedure, tumors in his mouth and behind his ear fell off. No one expected this. The medical term is "debulking," and refers to tumors that have been removed via chemo, radiation, surgery, or other. The doctors say that Killian "self debulked." They were coming to tell us they were unsuccessful with the embolization, when someone jogged out of the emergency room and said, "um, he, uh, it, uh, gosh, uh, self debulked."

They are unable to close either of these wounds. However, a team (including Integrative Therapies folks, a.k.a. "Killian's Peeps") is working to control the bleeding. His condition is fragile.

Post surgery, when he was in Intensive Care, he briefly came out of the sedative. He still had a breathing tube in, and wrote a couple of things. The last thing he wrote before they put him back to sleep was, "24, 24, hours ago... I wanna be sedated."

This is a tough juncture right now. Not sure when we'll leave hospital. Please, if you plan on visiting PHONE FIRST on account of we're not sure how he'll feel.

Thursday, November 6, 2008

More Changes

We were sent by ambulance from Benedictine in Kingston to Columbia Pres. in NYC because the tumor site on Killian's ear began to bleed and didn't stop. Shortly, he'll undergo an embolization. It's a radiological proceedure where they hope to cut off the blood flow by radiating vessels in the area. Killian, though bleeding, drugged up and head wrapped in bandanges is playing some uke with a guitar friend now -- that song "Piazza, New York Cather" by Belle and Sebastian. Great song. Lyrics: "Elope with me Miss Private, and we'll sail around the world. I will be your Ferdinand and you my wayward girl. How many nights of talking in hotel rooms can you take? How many nights of limping round on pagan holidays? Oh elope with me in private and we’ll set something ablaze. A trail for the devil to erase..."

Monday, November 3, 2008


Halloween is a wonderful time for those of us who are theatrical. Killian's best bud Kira came up to participate in the shaving cream rave that the Woodstock Chamber of Commerce actually sanctions. They shut down the streets and hundreds of teenagers run amok with cans of cheap shaving cream in hand to the backbeat of loud techno music (boo scary!) They all dress up in carefully thought-out costumes, which is ironic as they become unrecognizably slathered in shaving cream in two seconds. Killian was Chuck Norris; Cally, a "big, fat, chubby panda." Phil went as a Corporate Clown (he really wore his best suit too).

Prior to the Woodstock street rave, Phil and Cally performed in another Halloween tradition here: the Halloween Journey. Cara Cruikshank, local impresario of expressive, earthy, and slightly alien kids puts together this extraordinary show each year. Phil played Rip Van Winkle and Cally a Gnome. Killian and I did the journey together and I wept the entire time. It was so magical, holding his hand and walking the wetland woods. The first encounter was a lichen-covered woman who appeared to have grown into her chair. She directed us to a path, lit by a trail of tiny lights, jack-o-lanterns -- some with faces, some without -- and paper bag luminaries. The path of low light looked eternal, upward winding as it stepped up into the star-pierced sky from the grounded smell of moist earth and bonfire nearby. We happened on some small people (gnomes, sprites and such), a maple nymph, an excited fairy, old Rip Van Winkle himself (whose snoring, I can attest, was extremely realistic), Johnny Appleseed (who showed us the stars in apples), the esteemed John Burroughs (who was slightly perplexing to the under 4 years of age set), a lecturing but well-dressed owl, a woman who kept fireflies as a girl but reformed from sadness of loss, a wood piper, a singer with what sounded a little like a hurdy-gurdy....all minding the senses of our connectedness to nature. Killian asked why on earth I was crying. KT answered for me, "because it's just so damn beautiful out here." Killian said only women cry from joy. I think all this Chuck Norris stuff is getting to him.

We're spending a lot of time in the hospital. So much so, that we routinely get that nod of recognition you might give that nameless someone you pass on the way into our large anonymous office building each morning. That I-know-your-face-but-not-you-but-I'm-polite-as-I've-had-my-coffee nod. In fact, we get that nod in 2 hospitals now -- Columbia Presbyterian in NYC and Benedictine in Kingston, NY (our preferred emergency provider). A surgery for a tumor in Killian's mouth is being considered. Not for cure, but, "palliation." Killian feels good about starting a few alternative therapies through Raymond Chang in New York City. One, a Dendritic Cell vaccine, will require he take a trip to Duderstadt, Germany. Dr. Ralph Moss (a concisely articulate source on alternative therapies) recently visited this clinic and says it's a nice place. Nobody knows if this might kill some of Killian's cancer cells, but Killian has a really positive sense about this course of action (and therefore so do we). Raymond Chang is prescribing this vaccine in conjunction with a couple of off-label inhibitors, copper chelation, and a host of other supplements. Killian like the idea that Chang wants to throw a bunch of stuff at his cancer, but that it's a bunch of stuff that won't make him feel too awful. Killian does not want to go back to the National Institutes of Health for clinical trials. Killian does not want to do any more cytotoxic chemo. Killian wants to live it up and record lots of music.