Halloween

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.

Bad Feeling

I had a bad feeling about Killian's disease evalution yesterday. This week he'd pointed out a new lump on his forehead and some growth on his gums. They did the scans and, in fact, both areas are disease progression. There's also new tumor growth in another lymph node in the neck. I asked Phil last night if he believes that having a bad feeling can make something happen. We didn't heaviily explore an answer to that - it was just one of many late night flailing sessions. I remember Han Solo saying, "I have a bad feeling about this" just before Jaba's trash compactor freezes him as space junk. In retrospect, having 'a bad feeling' was not a which-came-first-chicken-or-egg conundrum. It was a comic understatement.

The docs talked about looking into other options: if that's what Killian wants. His initial reaction was exasperation. He said, "nothing is working!" The docs confirmed that nothing is working. I expressed more fear: fear of waiting for another protocol, fear of running out of time. Phil has felt this way too. Killian's reaction to our fear is to remind us that he's most concerned with his quality of life NOW. He was clear that he wanted to look into treatment options, and surgery (for comfort, not cure). Today he was equally clear that he doesn't feel that he wants a treatment that interferes with "having some life" - though he will consider suggestions from his doc, NIH, the Integrative Therapies folk, etc.

In terms of specific options being considered: his doc is researching -- has her ear to the protocol ground for drumbeats. I'll be researching as I can over the weekend too. A couple of tumor sites are sporadically bleeding and we're focused attending to that frustration right now.

Worry Dollhouse

Killian, Cally and I watched Jesus Christ Superstar (the 70's version) this Sat. (Oct. 11). Cally noted repeatedly how "hippie" the cast was. Killian liked the music a lot, but thought the story was not well sussed out. When he found out that the recording preceded the show, it all made sense to him. I can't believe I ever liked the singing the Mary Magdalen actor did in the movie. All that scooping of notes -- yeech!! She was awful. Cally had lots of questions: "... I think I understand -- Judas was Jesus' BFF, right?" We clarified that the focus of this particular musical was Judas. Cally is very focused on BFFs right now. She says that Lucia is her BFF, but Lucia is a couple of years older. I can see that she feels a lack of connection with the peers within her current social circles. I'm sad about this and uncertain what to do. 

Killian's BFF, Kira, has been such an important, healing part of his life... I look back on their exchanges and sometimes only realize in retrospect how profound they are. I was cleaning Killian's room after the last hospitalization and found a Worry Doll house she made for him. When she first gave it to him, I was just thinking it was cute as heck. Last night, Killian was worried about a new lump he's feeling. We hugged for a long time. I suggested that he's been so good about putting worry away and that we won't know anything until Thursday or Friday and to put it where he always puts it. Today, I realize what the dollhouse is all about. When hope is strained, compartmentalization is critical.

Decrease in Primary Tumor

We see decrease in the primary tumor (jaw) and on Dr. Lee agreed that there is decrease on the ear.  Though the most dramatic decrease is the jaw, they are measuring the ear and cheek, as the those are the sites measuring by the NIH for the base-line CT scan. 

I wonder what it's like for all those other people suffering from Synovial Sarcoma - or any sarcoma for that matter. Most of them don't see their tumors. Even if they do, they appear as some vague swelling. Killian's tumors are so very visible. The only mystery is the cheek. Now that I know they are measuring that site, my "scanxiety" (definition: acute anxiety resulting from cancer imaging done to assess disease progression) is heightened. When I told Killian they were measuring the cheek, he rubbed his fingertips along the cheek looking for tumor sign. He told me, "I can't feel it." 

VEGF-Trap: 2nd Treatment

Killian received his second treatment of this inhibitor Friday, Oct. 3.  The docs seemed fairly sure there would be more pain and there was not. We were thrilled for the peaceful weekend. The docs were fairly negative about Killian's ability to continue to qualify for this trial, and yet we see no disease progression. The tumors appear smaller. I don't know what to think, so at present we are all happy.

Sibling Sonara

Killian felt well enough to mess up his sister's carefully styled hair this morning. She didn't appreciate it, but I guess I kind of did (the eldest child in me no doubt). It's good to see them fighting again. Unfortunately, Killian's pain is still hanging around. I wish it would get a room in town, or a job with the Bush administration or something. He doesn't feel like going to the few in-school classes we scheduled for him. However, Markus did tutor him this morning. I'll have to record some of these tutoring sessions, as these two are hilarious. Markus' Spanish lesson went from nombre medico to wine regions of Spain. So, if Killian falls and breaks his leg in Spain, he'll be able to describe what happened and then ask for a nice wine to go with it. Not sure about Killian going back to school -- we need to see how this treatment goes.

We're hopeful and happy that the VEGF Trap is causing some tumor death already. We're also keeping an eye toward future options. Killian might be in pain, but I have to tell you that he has HUGE fight in him. Below is a link to an article written almost a year ago that is a good summary about sarcomas and the experimental avenues we could be trying.

http://www.sarctrials.org/public/pag105.aspx

Landed Gentry

We get to go home today! I asked Killian if he was excited (duh) and he said he was happy he would see Gran (who's up to help) and Markus (art mentor and as of this year his official tutor) and Katie Martucci (friend) and some guy named Matt (friend, along with Katie from the Fiddle & Dance camp), but commented that NYC feels like home. He added that West Shokan is his relaxing weekend home. I guess it would be great to have both, and I'm glad the he has acquired lands (though imaginary ones).

Killian's still got some pain, but it is managed at present with the Methadone, Neurontin and occasional Dilaudid. However, he's back to being his cool, funny self -- constantly strumming the uke self. He and Liam are a little obsessed with the Chuck Norris jokes (though neither has seen his movies nor do they agree with his politics). Killian relayed one this morning, "Chuck Norris' tears cure cancer. Too bad he doesn't cry."