Grumpy Fish

Goodbye

2009-08-23T09:14:00.000-07:00

Nurse Mary was spot on. Around 9:40, Thursday, August 20, Killian quietly slipped away. We knew and didn’t know it was coming. We were just hanging out with him—mom, dad and Killian. Phil happened to be holding his hand, and I happened to be playing ukulele and singing “Tonight You Belong To Me.” I was missing Killian on the harmony, and we were wondering if we could stay up all night. I think Killian decided we wouldn’t last.

We asked Cally how she wanted to be told when her brother died. She said that she wanted us to tell her when we were all together and to tell her “that Killian is somewhere where he doesn’t have cancer on his face and doesn’t hurt and can listen to all the iTunes he wants without paying.” She also said, “I want him to visit in my dreams.” From Hamlet: “To sleep: perchance to dream: ay, there’s the rub. For in that sleep of death what dreams may come when we have shuffled off this mortal coil.” At the same time Killian slipped away downstairs, Cally had awoken and come to Cat saying, “I feel awful, just awful… I woke up because this light was flashing in my eyes and now I just feel awful.” We told her that Killian passed away. She said she wanted to see him and ran downstairs, before we had a chance to say anything. When she saw him, she cried a bit. Eventually we went upstairs and put her in our bed. We told her that it was pretty obvious that Killian had visited her in her dream—just as she’d asked. She went right to sleep, with a smile on her face.

There’s a peace in his passing, though we know it precedes a lifetime of sorrow. However, we are determined to provide Cally with just as much laughter and love as there has always been in our home. There will be a public procession from St. Augustine’s Chapel in West Shokan to Bushkill Cemetary on September 13. Help bear witness to our commitment to joy—bring drums, ukuleles, whatever you can walk and play, and learn the tune “Blessed” by Brett Dennen.

I’m packing up the blog now. Thanks for comments: all were appreciated and provided us with grace. And please, keep spreading the word about Killian's Foundation http://www.killianmansfield.org and his album SOMEWHERE ELSE. Goodbye.

Last few days

2009-08-20T07:55:00.000-07:00

August 16, 2009
Killian was semi-cognizant for 30 seconds, two times today, at which point he asked us to look up the definition of “sperm.” As I read it, he said, “yeah, zygote, that’s what I was thinking,” and went non-responsive. Hours later, he says (after struggling for a memory of a name for quite some time), “Ed came by and said he knows I’m bedridden, but wants to take me somewhere.” We haven’t seen Ed in months, but it does not seem strange that Killian gets a virtual visit from him. We said, “sure, you can go with Ed.”
August 18, 2009
Feel like I’m losing everything. Fought with BFF about choosing the date for Killian’s memorial. She wasn’t ready for it. Disagreement is too much, and all I can think is that I’m losing everything—my best friend, my dog’s affection, my ability to drive, my heart, my soul. After a half hour of wailing, I hear Dominca’s voice in my head telling me, “you’re not losing everything…you’re losing your son.”
August 19, 2009
Ed phones. We talk about what Killian said. Ed says, “I don’t know about all that…but I did have something I’d like to say to Killian. Please tell him ‘you did it’ for me. He took quite a load for this life and not only did it, but inspired a lot people in the process.” I get off the phone and tell Killian this. Everything else I’ve told him, about moving on, about there being a better place, about all of us being o.k., about him being o.k…. none of it resonates. “You did it” does. I get what Nurse Mary says will probably be the last verbal response. Killian, barely audible, says, “can you fix my eyes?” I say, “no, baby. I can’t fix your eyes. I can’t fix any of this.” His forehead furrows slightly in distress. I say, “but you do have the most beautiful eyes.” Always with the comedy, just like his father, Killian bats his eyelashes. I say, “I love you,” he mouths the same.
August 20, 2009
I describe the activities of the night, the breathing, the whatnot to Nurse Mary. “Just so I’m clear, here, this is what you people call “active dying, right?” Nurse Mary says, “yes. It won’t be long,”

More album news

2009-08-15T20:46:00.000-07:00

The local paper did a story on Killian’s album, and the reporter asked about my blog. Some people are very private—suffer in silence. I don’t know that Phil or I made a conscience decision to hang it all out there, but we’ve definitely not been private. We had the store, we lived in the store, people saw our children in their pajamas, and Phil and me “fresh” out of bed at 6 am. I started the blog in this vein, but also for practical reasons—too many individual contacts lapsed in the desperate search for a cure. At this point, though, baring it all in writing feels like the trail of breadcrumbs left behind so I can find myself again.

I get glimmers of a sort of sad that I know I’ll be swimming in soon. Now, I’m just wading in and out when there’s quiet. Other times, I’m loudly crazy. My coffee maker stopped working, spilling almost two quarts of granulated coffee water all over the kitchen counter. So desperate for coffee was I, that I tried the whole thing again (“maybe it’s not really broken, I think I didn’t grind enough…yeah…”) And again, the testy machine belched massive amounts of liquid all over my counter and floor, prompting a stream of expletives, ridiculous blame-seeking and a hurled stick of butter, followed by a long sob session and muttering about everything falling to pieces. BFF Breon called during the sobbing. I ratchet up more sobbing into the phone, telling her everything’s falling to pieces, “…and I have a terrible, terrible temperament!” Why she’s my best friend: “yes, you do honey, but I love you and I know you won’t sit around in self pity but will be the survivor I know you are and make a list of those things that are driving you crazy, get some help with those things, and get a new coffee machine.”

Phil’s so present for us, so loving, so funny. I can’t see where his ouchy is, what this is doing to him. Send love, prayers, thoughts, pink-healing light, or virtual vitamins to him. Here’s the article that reporter did about Killian in our local paper, the Woodstock Times.

"Let the Children Boogie!"

2009-08-06T12:44:00.000-07:00

We got up early this morning--by that I mean early for people who don't sleep much throughout the night, but not school-in-session-early. Killian was psyched about going on the Don Imus Show. He'd heard that Mr. Imus was going to have kids dealing with cancer in his studio and knew that Imus, himself, is dealing with cancer. He just wanted to ask them if any of them had had acupuncture. In anticipation that few had, he wanted to just say "don't be afraid of the needles--it helps." Those couple of sentences were hard for him. He's got no air, the tumor in his mouth obstructs speech, and he can't hear out of his left ear because of the tumor there. But he had metered that question and that statement and figured out he could say that much. What he does to speak is to press with two fingers on the tumor near the ear, he can hear and speak a little better. But, just as he was preparing to go on, he realized if he did that, he wouldn't be able to hold the phone (as he can't lift his other arm at all now). This realization hit him about 15 minutes before the show. He spent about 30 seconds being really upset, then shifted into making sure mom and dad were prepared to represent.

Phil and I got in most of what he and Cat wanted us to cover. Honestly, Imus was great and covered what we didn't. As instructed, I asked the kids in his studio and Mr. Imus if they'd ever had acupuncture. A couple had, and Imus said he had but that he "didn't really feel anything." I suppressed the smart ass in me that wanted to ask if he'd ever had sensitivity issues, and made Killian's point. I'd really like to meet Deirdre Imus. I like the work she's doing through her Environmental Center for Pediatric Oncology.

Response from Imus has already been huge. Thank you Mr. Imus. Somewhere Else is climbing up the Amazon list, and with that comes increased visibility. We've launched our "velocity campaign" (I think Cat made this phrase up, but I like it). We're hoping everyone will buy through Amazon TODAY. Go here, BUY NOW, "let the children boogie!"

War (hunh), What is it Good For?

2009-07-31T13:03:00.000-07:00

I keep thinking of that one line from Country Joe & the Fish, “and it’s one, two, three, what are we fightin’ for?” The rest of the song doesn’t fit—pointless violence, wasted lives… But that one line is in my head.

Killian casually mentioned this morning that more cancer is in his other arm—the one not radiated—and he feels like he’s losing function of it. We continue to dress the large wound on his face, which is a constant challenge as it continues to grow—these days, within the day. He’s developed a pressure sore on his very tiny butt, breathing is more labored, a tooth is falling out…but this is what happens with someone who is very ill, who has been very ill for a long time, who continues to fight.

Cat was outside, urging Moses “do your business, already!!” It was raining, and Moses would rather explode with held-in waste than go out in the rain. He hates water. Killian asked, “why is he so stupid that way?” Not meaning to compare him to a dog, but doing so anyway, I reminded Killian of his own fear of water when he was but a lad. I had to carry him through puddles, and he usually cried during baths. Coming home in the rain from pre-school once, I was carrying him over a large puddle, and in a panic he scurried up my body into a choke hold on my neck screaming, “I’m drowning, I’m drowning!” His response to this tale, “at least I knew when to pee.” We then got into a discussion about the possibility of past lives. “I’m not a Buddhist, I don’t think,” he said. “I don’t consider freedom from choice a higher state. I don’t think having choices is suffering.” Killian has been talking to chaplains from all sorts of religions lately. “I do think there might be something to reincarnation…just not sure about the rest.” More song lyrics in my head: “Freedom’s just another word for nothing left to lose.” And then I start thinking about Janis Joplin and the 40th anniversary of Woodstock coming up. And then I think about how consistently in my head the song “Rudolph the Red Nose Reindeer” has been lately...

He's sorting it out. I'm in a gerbil cage.

Updates

2009-07-23T14:29:00.000-07:00

I feel the energy of collective grief. It's like being sandwiched between two sets of chests, silent-listening to muffled hearts beating in my ears. It's comforting, but I have no idea what to do with it except listen and breath.

Everyone wants us to tell them what we'd like, what we need, what they can do... I love the love, but can't say, can't decide, can't answer. I can say I look forward to brushing my teeth--that I can decide. My teeth need to be brushed, we have a routine, me and my teeth. We're in sync. I'm so sorry I'm so out of sync with everyone else.

Updates. That's a misnomer if ever I heard one. We have nothing "up" to report and god only knows what date it is today. Killian's body is failing him a bit more every day. There isn't much else to say about that.

I think I'll have something uplifting to announce SOON about Killian's album, the Killian Mansfield Pavilion or the Killian Mansfield Foundation. Hang in there folks.

Back Home

2009-07-17T14:24:00.000-07:00

We’re headed home this evening. Killian just finished his third course of radiation and his back should feel somewhat better soon—maybe by next week. We’ll go home to a different set up. He asked for a hospital bed, as it’s almost impossible to get comfortable unless he can change positions easily throughout the night. The delivery guy came this afternoon, and I understand from Cat that the bed's been delivered. Jim and Sharon Sofranko came over to move the TV down to his room so he can get lost in movies, games, whatever. Jim hooked our TV up so we could watch movies, play video games or watch TV with a simple press of the remote. Ingenious. Setting this up has eluded the Mansfields and our relations for three+ years—since we acquired this very TV set. If electronic divertissements were life sustaining, we’d be rooted out by natural selection, while the Sofranko clan thrived.

The other set up is that Killian will have a unit hooked up to his port to deliver a steady stream of intravenous meds. That’s fine, as long as there are no acute incidences of pain (which is like saying we can do without a toilet as long there are no incidences of urination). The medication he prefers for breakthrough pain can’t (by law) be dispensed intravenously by me—a nurse must do it. We don’t get a round-the-clock nurse. Not sure we want one anyway. Apparently, there’s no issue whatsoever (by law) if I accidentally overdose him with an oral opiate solution. They just don’t want me accidentally overdosing him intravenously. I add that to the long list of health care mysteries that elude me. I suppose he'll be fine with the oral solution.

Last night, a lot of anger played in my head. Phil says he gets waves of it about “the healthcare system.” I get waves of it about various subjects: people who have recently hurt me, people who hurt me in the past, raccoons…pretty much in that order last night. Today I did played the angry hospital scene (remember Shirley McLain in Terms of Endearment?) I’d no sooner taken a breath from that nonsense, when I found myself going off on an anger dump about meds (see above). I realize, though, after weeks of predominant sadness—being sad robs you of your response mechanisms. We need adrenaline at the ready. We’re taking our boy home and we’re on our toes.
#@$* raccoons!

Home Away From

2009-07-15T16:13:00.000-07:00

We checked into Benedictine Hospital yesterday, as we were unable to manage Killian’s pain at home. A spot near mid-spine sent Killian into a wheel chair last week. He kept asking people to poke their fingers down deep in a certain spot to relieve the pain. Once, when I had my thumb in up to the knuckle, I felt something I suspected was disease. Little Jack Horner from hell. Josh (acupuncturist) thought so too when he came over to work on Killian. Frankly, I think Killian knew all along it was disease. However, when the spot was confirmed as more cancer this morning he was very, very upset. He said, “I feel stupid that I just keep hoping.” But, not even a half hour later he was laughing about something. A tipsy guy was giving stupid answers on Cash Cab. It’s clear the preservation of hope is his life force. He disconnects from what is happening in his body so he can wring enjoyment out of every moment possible. The disease on his spine eroded bone. There’s a fracture. His back is broken, and he’s laughing because the Cash Cab drunk couldn’t remember the word “kibbutz.” It’s infectious.

We have the most beautiful view we’ve ever had in a hospital. Killian’s drifting in and out, but says “wake me when the stars are out.” Last night he had quite a bit a bleeding, and it looks like it’s starting again. As usual, we’re able to manage it with Yunan Baiyo. That, and the remarkable clotting power of his otherwise healthy young body. They let us use Yunan Baiyo here without the docs freaking out. We’re on the hospice floor, and they pretty much let you do anything short of a keg party here.

The plan is 3 days of radiation to the spine. The first was today. It’s conceivable we could go home by the weekend—depends on how well the pain is managed

FIDDLE & DANCE

2009-07-05T17:24:00.000-07:00

Dominica, our social worker from Hospice, says, “Killian is drinking VERY deeply from the cup of life.” It’s been a comforting phrase for us and helps steer a positive perspective throughout the more difficult moments. Sometimes, however, I get an image in my head of Pooh, struggling so hard to extract honey bits from the bottom of the jar that he gets stuck. Pooh was too witless to feel embarrassed, or angry, or frustrated about being stuck: he felt “bothered.” In contrast, Killian struggles with many feelings—from sadness to intense anger—because his body leaves him stuck. But he keeps drinking….deeply drinking.

This week Killian attended the Ashokan Fiddle & Dance Western Swing Week camp. To characterize the culture of this group is not easy—they run the gamut from good ole’ boy Texans and college professors to Red Hat women and precocious kids. What they have in common is guts. Each year, for a vacation, campers brave considerable wetness (being the first of the Fiddle & Dance sessions of the season, they’re subject to the most seasonably-incessant rain the Catskills can dish out), and overcome ego obstacles as they expand past their comfort zones to learn new dances or songs (in front of their children, and their girlfriends and strangers no less!) So, they got guts. Lots.

Ashokan is a rustic camp and not meant, in any way, to accommodate seriously ill people (much less children). I gave Jay and Molly and select people a heads-up about what condition Killian is in, fully anticipating that his being at camp might be too much and they’d ask us to reconsider. They didn’t. I told them I would be at camp with Killian, and that he would likely only be there a few hours each day. I said I would be armed with all the medical equipment we use at home and ready for anything that might happen (which is abstractly true). I suggested I give a heads-up and reassurance to all the campers at their first gathering. Jay wondered how this might hit the newbie campers. After a few seconds, he decided that communities form in support of all members at these camps—regardless of their strengths or weaknesses. Heart-filled guts.

I did a little talk at the first gathering, but then (at Killian’s request) kept a low profile at camp. I described my role as Geisha Mom (walk 10 feet behind, with eyes cast down and try not to be seen using the cell), but really I was kept mercifully busy the rest of the time volunteering in the office. Killian went to camp all but one day, and made it most of the way through the culminating evening performance—wherein he performed with 3 groups. Highlights of the week, according to Killian, included learning the basics of minstrel/pre-civil war style banjo, seeing Katie, Max, Lilly, Ava and the gang again, ukestra, the Django band, and jamming with Robert and Matt.

The moment of moments was suggested by one of the campers. Jay came to Phil and me before the final Root Night show and asked how we would feel about them naming the performance pavilion the “Killian Mansfield Pavilion.” Both of us welled and were beyond touched. We reached for one another to hold each other up. Jay asked if it was O.K. if he announced it that night during Root Night—wondering how Killian might feel. Phil was sure Killian would love it. We both went from tears to laughter when we realized how the rhyme would rule—that it would be called “Killian Pavilion” regardless. And, that’s just how Jay announced it. After the announcement, a surprised Killian said, “It’s so sweet, so sweet, and means so much.”

Jay, Molly, all the Western and Swing Week folk lifted our boy’s spirits in a way only they could. Killian made me stop at one point when I was walking him to a class and said, “this place is incredibly special: you swim in music as you walk, you eat and sleep in amazing music… and it just makes all this beauty here more beautiful.” The Ashokan Foundation is preserving this slice of heaven. The main structures have to be torn down and rebuilt in the next two years. The Killian Pavilion, along with some of the historical buildings will be the only structures staying the same. Here’s a link to a film about what’s happening at Ashokan Center. We’d love it if we could give back—even a little—of what this place (and its stewards) have given Killian and us. If you want to help, please make a donation in Killian’s name to the Ashokan Foundation. When you get an email confirmation, return the email and let the folks at Ashokan you made the donation in Killian’s name.

2009-06-30T10:04:00.000-07:00

We sleep. We have to. Though inevitable, I resent the time wasted. In fighting off the midday drag of exhaustion following a restless night, my adrenaline kicked in on seeing a giant brown bee. I mean GIANT. This guy was easily two inches. Then, I remembered my dad saying, “god gave bees wings so they wouldn’t bump their butts on the ground.” I think god’s work is mercurial like that. All the order in nature occurs through a series of random and chaotic events. In the course of living we try to string together chaos to make meaning from improbable sets of wings.

This story's the bees-knees, wings and all. Cally’s Tang Su Do class had a year-end party. She said it wasn’t fun—that everyone in the class was from Woodstock Elementary (not her school) and she felt left out of their conversations. Then, she told us that when she tried to play ball with a group, this kid named Leo said, “pass the ball, fatso.” She told us she emphatically told him, “don’t call me that!” but that it got worse because another kid named Ben chimed in response, “what's wrong fatso?” Cally told me some of this story the day it happened. I told her then that as she was doing Tang Su Do for fun, she ought to tell Marilyn (the teacher) that being called names was not fun for her. I told her that I could tell Marilyn myself, but that I thought she would feel more relieved if she stood up for herself. She brought it up again in the car with Killian, Pops and me on the way to the movies. Killian was outraged. First he asked, “is something wrong with him, you know, mentally? Because you’re not at all fat, so he has to be a little wrong in the head.” Cally, laughed, saying, “no, he’s kind of normal, maybe even smart.” “Well, then. I’m going to kick his ass, the little turd face!” – said the boy who can barely walk, or talk and at this point weighs as much as a wet hen. Cally was glowing as they laughed together in the back seat, plotting the torture and destruction of Leo. At some point, I was pleased to hear Cally say that she would prefer from a practical standpoint to speak up for herself rather than Killian "kicking Leo's ass."

As we arrived at the theatre, who was in line buying tickets to the same movie? Leo. Cally pointed he and his family out as they stared at Killian (not an uncommon occurrence for our public outings). Killian, bandaged, shuffling—a dramatic sight regardless—fixed a glare so deadly at Leo that he cowered at his unwitting father’s side. I told Killian, “stop that,” in mom voice. It’s ironic when you use mom-voice on the outside because it’s the right thing to do, but on the inside you’re laughing maniacally like a five year old who just got away with something naughty but delicious.

Butterflies

2009-06-08T19:28:00.000-07:00

We got out Saturday, on a short trip to North Adams Massachusetts. Killian wanted to go on a pilgrimage to see origami master Michael LaFosse and visit the Origamido studio in Haverhill, MA where he and partner Richard Alexander make the best origami paper in the world. I asked BFF Breon if she’d arrange a visit, as I have mush-for-brains and can’t do logistics these days. BFF was tasked to see if she could find a time when Mr. LaFosse would actually be at the studio. She found out that the Origamido studio was closed, packed up and prepared for relocation to Hawaii. She actually spoke with Richard to discover their plans for a new life, and then told him about Killian. These guys are SO incredibly generous. He and Michael offered to meet at a halfway spot for the Mansfields, and said they would bring paper, books, a movie about origami that had just been made called Between the Folds, and some famous models from their collection of masters from around the world. BFF arranged a meeting at Mass. MOCA, an agreeable halfway spot, and came with Bob and Liam.

Killian was so excited and his expectations were absolutely exceeded. Not only did they bring all that marvelous stuff as gifts for Killian, but also Michael took Killian aside and folded with him. He folded with a master. Once, Killian told me that he wanted to learn from an origami master more than he wanted to be one. He had this vision of spending a good chunk of his life roaming the world and studying with various origami masters. One down.

Richard took the rest of us origami novices into another space and taught us to fold a couple of fun models that he and Michael designed. When I checked back in with Killian and Michael, they had folded two Midori Luna moths out of paper Richard and Michael made especially for this particular moth design. As they folded, Killian talked about the music project he and Ralph had been working so hard on. He said he really wished that more sick kids knew that acupuncture, aromatherapy…integrative therapies could make them feel better and told Michael he thought most hospitals really needed to do things differently to really incorporate these therapies. Michael said he wanted to create a butterfly for Killian’s foundation, because it symbolizes change. He told Killian that, like the butterfly, he thought Killian's wish would "pollinate," spreading the word about this cause. Killian said he’d like to use Michael’s design as the symbol for the foundation.

There is so much good in the world.

Storm King

2009-05-28T12:28:00.000-07:00

Phil said, “we’re living Einstein’s theory of relativity…time changes based on perspective.” One day last week, shattered, he’d swept me off the floor and had taken me out for a walk. We realized we are in a spaceship: we exercise, eat, watch movies, drive the ship a little, tend tomato plants, play music, cook, write, go on hikes (it’s a big spaceship)… Because we move at the speed of light, it seems like nothing much changes within our ship. We grow beards—Phil, me, Killian, Cally, the cat (the dog already has one)…and only when friends and relatives make contact, and seeing their beards grey, do we realize how different the passing of time has been for them. They talk about plans. It’s hard to imagine how we can possibly reconcile the differences in time. We decline plans. This upsets some people, adding worry lines to their grey-bearded faces. We think about putting a sign on our door that reads, “no grey-bearded, sad or worried faces allowed,” but realize it would only mystify those entering an already mystifying situation.

When Killian feels well, we feel like we have time, the same kind of time everyone else is keeping. When he doesn’t feel well, time conflates. There are hours in a day now when we keep the same time as the rest of the world, not days in a week.

Sometimes Killian animates—most often for visitors. He decided, suddenly, he was well enough to go to Storm King Sunday. We walked Maya Lin’s Wave Field. We watched Cally run the waves, arms outstretched, using momentum from down to run up, making like a bobbing sailboat. They fought in the car on the way home, then they slept, leaning on each other for the rest of the ride. If the slice of that day were all you saw, you might not understand how things have changed.

Nice Peace

2009-05-21T17:11:00.000-07:00

I’m watching Killian play the jazz standard Guilty with Phil on the porch. Yesterday, Killian flexed his forearm for the first time in a month and said, “it doesn’t hurt when I do this.” As the sun lowers, that’s his 2nd day with no pain “in months and months.” My guess is, the radiation to the arm has kicked in and has killed enough of the encroaching bone disease to put an end to the pain there. We are drinking in the peace, gulping it actually. Though many exciting things are happening with Killian’s music project, he was thrilled most for Cally today. They are so dear, and their relationship is such a gift for Phil and me. One year ago, she began asking the editor of the local bi-weekly, the Olive Press, if she could take over the Kids’ Page. This column has been written by another girl for maybe four years or more, and Cally had VERY strong ideas about what she’d like to do with it. The editor of the paper told her to start with letters to the editor. So, one year and lots of letters later, he contacted her to say she had the column! AND, though she has a real deadline, she gets paid! She says her first purchase will be a Sham-Wow. She emailed the editor, “I feel like I will stick with this forever… this is something I can really call my own.” Here’s her first column (if you’re local, pick up this week’s Olive Press OR Phoenicia Times and look at the back page (prime newspaper real estate, by the way…)

The Death of Try-it Tuesday

Last year, we had this lunch thing called Try-It Tuesday. It was supposed to make us like more kinds of foods. Some kids won’t even eat chicken patties, and Try-It Tuesdays were mostly about expanding our palates toward veggies. They would have ratatouille (like the movie), steamed broccoli, asparagus, and this really cool chickpea salad. I thought the Try -It Tuesday was most often good. I think I was the only one that liked the chickpea salad though. Probably a quarter of the kids in my school liked Try-It Tuesday food.

This year, we haven’t had Try-It Tuesday at all. The population of kids liking Try-It Tuesday was going down. My mom said they should start Vegan Wednesday, but I completely disagree. I told her kids would be upset by this, and that it would break their tiny, minimized, non-food-tasting hearts. But, I miss Try-It Tuesdays.

I would love it if we could grow veggies at school. We could take care of them, and it could be our responsibility. That would be so awesome! If the lunch ladies used the veggies we grew, I think kids would eat more kinds of veggies. It would taste fresher, and be more interesting because it would be what we grew. My brother said the Green Committee at the High School was talking about this. Editor, maybe you could ask your readers if they want to help me start a vegetable garden at Bennett. If they do, maybe they could contact Holly Heppner, who is working on the garden and wants to do vegetables too. I think if we make food with our hearts, the chances are the food will taste better.

C-a-l-l-y!!!!!! (Mansfield, 3rd Grader)

Town of Olive

2009-05-17T06:23:00.000-07:00

Thursday, in the gray and wet and cold, a 16 year old in Killian’s school named Max left his home just after a near sunless dawn, went to the Ashokan Reservoir, at a dividing weir called the Lemon Squeeze, and hurled his body off the bridge. He paused long enough to phone the police and tell them what he was about to do. Then, a moment later, ended his life. His parents have no closure. There are days when I think there is no such thing as closure. Then, I imagine there is a book being written, called The Town of Olive, and all the stories in it become inspirational life lessons for millions around the world, and people find true comfort in the wisdoms of this book. I imagine this town called Olive as a later day epicenter of human struggles directly informed by our ebb from or flow toward the divine. God, in this book, wants us to find each other and to love one another. But, we’re the ones, we people of the town of Olive, who make these stories a really good read—a potboiler. Max ripped out the pages of his story before it was finished. The other stories change too, because of these ripped out pages. Some of the changed stories get edited out because they are not inspirational—stories about bitterness, regret, too much drinking, being stuck… And, some become the best stories in the book.

That same day, Killian went to school at 11:00 a.m., after having a bad morning with pain. He’d done so much morphine and was so worn out by the pain (as well as the final radiation treatment for the disease in his arm), that he wasn’t sure he could make it through school. We went to a café, and after tea and a tart he said he thought he’d like to go. When he got to school at least a hundred kids were wearing blue shirts that read, “Team Killian” on the front, and “Just Appreciating Life” on the back. A girl named Gabriel, inspired by Killian, made the shirts. The project is, as I understand it, an expression of recent positive changes in her life, a new direction for her. The counselor at the school phoned me a couple of hours later to say that she had spoken with Killian about Max and that he seemed upset, saying to her, “it’s not fair.” I asked if it seemed as if I should come get him, and she didn’t think so. By the end of the school day, the parking lot was ridiculously full, cars parked every which way. All the parents felt they needed to be there for their sons and daughters. I, myself, had turned down several offers to pick up Killian to insinuate my car there. Nobody was “thinking green.” Killian got in the car and told me about the t-shirts, saying, “I felt the love, I did, but it was so weird that it was on the same day Max committed suicide—this message in everyone’s face.” I told him that the counselor had phoned me. He said, “why would she phone you?” I said, “because you seemed a little upset when she spoke to you.” Killian’s face screwed up all perplexed, “I didn’t speak to a counselor today.” I let it go. His perceptions have been changing. My new prayer is for his perceptions not to stress him out or upset him

Happy Mothers' Day

2009-05-09T20:05:00.000-07:00

Killian wasn't quite up to the ukulele lesson today. He did go out and see his friends' band (named "Tell Him I'm Ugly" -- VERY funny name, right?). Cally went with Phil (and the Girl Scouts) to see the circus. I stayed around in the house in an unshakable funk. I'm having an issue with Mother's Day this year. I don't have anything against its commercial inception, n0r is it an annual let down. Mom's Day is usually a bit of fun for me. This year, I just feel like I resent the whole idea. I reckon that makes it a good time to get out of self reflection.

Here's to my mom--I would not be me with any other mother (so, thanks and a very happy Mother's Day to you). I want to recognize the loss of the grand dame of the North and the grand dame of the South. Here's to Phil's grandmother and my grandmother who both passed away this year. We could attend neither funerals nor memorial services for either moms of moms, but we feel the firm foundation of their blended dynasties guiding us. Here's to Phil's mom. Marlene would be pleased with her daughter's growth and would bask in the joy of her engagement. Here's to all the other inspirational moms I know and look to daily for guidance. Have a great day.

A Shot in the Arm

2009-05-07T18:24:00.000-07:00

My BFF mentioned that maybe Killian could get radiation in Kingston (only 30 miles away). I checked out a facility affiliated with Vassar there, but they initially said they didn’t treat children. I pushed—only had to a little—and Dr. Tapen agreed to treat Killian. She fit him in today, did the simulation today, and will do the first treatment tomorrow on Killian’s arm. She’ll do a fairly high dose, so there only needs to be a total of five treatments. All in all…a good day I’d say.

Tomorrow, after treatment, Killian will head into the recording studio with Ralph to sing on the only song not finished. The aim is to have all mixes finalized and sent for mastering by early next week. Soooooo close. After studio work, I drive Killian to NYC for the consult about a possible nerve block. I will drive happily, knowing that I don’t have to do that two-hour drive every day for three weeks. The hope with the nerve block and the radiation is that Killian will be able to play ukulele again. He’s out of commission right now. However, Killian will still give his Saturday morning lesson to the Ladies Who Uke. This week, we work on Fools Rush In and Goodnight Irene. He told me OOOO Child is too hard for me yet. "Yet," he said.

Back and Forth

2009-05-05T18:29:00.000-07:00

Monday, we headed in for tests, tests and more tests in anticipation of starting a new clinical trial. On the way in, he had a pain crisis. We pulled over and administered morphine. This put Killian into an emotional nosedive because the source of the pain was his knee—new terror. Once tests were over, he had a long consultation with Dr. G. about the trial. He has been ambivalent about any chemo, and the conversation started in that context. After saying he believed there was cancer in his knee, he asked Dr. G. “what about what’s in my lung?” She said, “there’s a spot like this,” putting forefinger to thumb tip making the O.K. sign. I was thinking when I worked at Disney World we were told to never make this gesture—it means f___ you in Brazil or somewhere…. At this point, he said he wanted the drug, a Phase II antibody that seems like it might be promising for many sarcoma patients.

Today we did the two-hour drive into NYC to start the antibody (an IGF-R inhibitor). When we got there, Dr. G. said the scans done Monday revealed that some cancer had infiltrated his skull and was close enough to the brain to make him ineligible for the trial. We won't be looking at anymore trials now because this development pretty much universally disqualifies him for relevant trials.

I expected Killian to despair, rage, or at very least exhibit signs of depression. He didn’t even flinch. Not even a little. Almost casually, he asked if he could get some radiation on his arm so he could keep playing ukulele. Dr. G. said she would try to arrange him getting some this week. We’re already scheduled to be back in NYC Friday to consult with a pain guy about a nerve block to his arm.

We’re closer to a deal with the record company to get Killian’s music out to the world. We listened to a couple of songs today and I told Killian, “I’ve never recorded anything I felt was really finished. These songs are so good that I really can’t think of a single little thing I would change.” He took that in—along with the music and the moment, “yeah, it’s good….”

Bad Scans

2009-04-27T14:07:00.000-07:00

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.

Riding the Wave

2009-04-22T14:30:00.000-07:00

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!!!

Somewhere Else (Listening Party)

2009-04-15T17:25:00.000-07:00

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:
http://www.facebook.com/s.php?ref=search&init=q&q=somewhere%20else&sid=3ee5e1126dd691064bcf3a8f2755e5e7#/pages/Killian-Mansfield-SOMEWHERE-ELSE/78217353424?ref=ts

14th Street's Not the Same

2009-04-10T05:59:00.001-07:00

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.

Prepare the Rubber Duck!

2009-04-06T18:42:00.000-07:00

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.

Back in NYC Again

2009-03-30T17:20:00.000-07:00

We’re back in New York City again. We checked into Ronald McDonald House (room 1102) during a spectacular lightening storm last night. Killian seemed pleased with the room, as the beds are more comfortable than those we had last time, and the views more to his liking. He was focused on the positive and all was well, pretty much right up to this morning when we stepped into the radiation waiting room. We got to talking and he said he didn’t want to do the radiation. I told him that he didn’t have to do the radiation. Then, he said he felt he had to do the radiation, or he would lose his eye. I confirmed that that would be the likely scenario, but that we could try a chemo agent like an inhibitor. He said, “chemo never works on this cancer.” Then we talked about how all his choices were crappy ones. I told him that he did need to make a decision about today, and he said he wanted to go ahead with the radiation. Dr. H. was careful to give him time to decide about the treatment too. Funny though: here’s how the conversation went:
Dr. H. - So, do you want to forego radiation?
Killian - Yes.
Mom – (thinking “who says ‘forego’?”) Do you want the radiation treatment?
Killian – Yes, I want the radiation.”
Mom/Dr. H. – Are you sure?
Killian – Yeah. I want to do it.
They let me stay until he was locked to the table in his radiation mask and they were just about to turn on the beam. That contraption looks like water-boarding’s evil stepsister. I don’t know how he does it without hyperventilating every time. Afterward, he came out and said he needed new shoes. Fortunately, he’d made some money this week (he gives ukulele lessons on Saturday mornings now.) to support his therapy.

Plan Nine From Outerspace

2009-03-06T18:08:00.000-08:00

Our bliss hit a blip. I wasn’t expecting Tuesday’s visit to Dr. H. to be so hard. Several issues—concerns I hadn’t even thought of—had been weighing on Killian for some time. I don’t know why I didn’t anticipate this, but just before the radiation mask was made he asked Dr. H., “so, what about my eyebrow? Am I going to lose it?” Without hesitation, Dr. H. said that he would. Killian immediately stood up, angry, pumped, ready to bolt. Dr. H. stood too, and warmly but firmly said, “take a seat.” He then said, “my greater concern is your eye—I’m going to try my best not to lose your eye, but I can’t guarantee it.” Then there was a question—a question that wasn’t a question before this piece of information hit our ears. I asked, “you still want to do this radiation?” Killian said he did. We sat with it for a little while, and then I signed the papers. I used to read these papers so carefully. Now, I just sign them.

The plan is this: Killian starts a five-week course of radiation on March 30. We’ll stay in the NYC at McDonald House for entire treatment course (coming home a couple of weekends—like for Cally’s birthday on April 11). Killian’s done processing the scary possibilities. He doesn’t want to discuss the dangers of this course of radiation. He’s ready to move ahead. As we got ready to leave the City, I asked, “would new pants help?” He said he was pretty sure that new pants would definitely help. On the way home, we bought 2 pair at H&M. Killian feels like he’s weaning himself from his shoe obsession. As far as I’m concerned, shifting obsessions is an effective coping mechanism. He’ll need a new theme song though (check out this link for the shoe theme song). New Shoes by Paolo Nutini

Back For More

2009-02-27T09:23:00.000-08:00

It looks like our return to NYC will be the end of next week. I'll post details as soon as we know.

Killian will spend this weekend deep in music. He's got a gig at Barnes and Noble in Kingston: he'll play with both the jazz band and the chamber ensemble. He's also hoping to get into the studio with Ralph to do some more recording for the album. He's been doing some inspired stuff on the ukulele for Starman and is eager to lay down a track for Express Yourself. Killian's album (for that is what he calls it... not "recording"...though he's never in his life played an actual album) is near completion. I could be wrong, but I guess that by summer he and Ralph might be finished.

Ukulele is such a grand and egalitarian divertissement. So many people will get a kick out of this, I'm sure. I even get a kick out of mediocre to bad ukulele performances. Follow these links and listen to at least 30 seconds of each (and note the range of people playing Starman on uke.)

Starman in drag

Livingroom rock woman Starman

No-rhythm Starman

Starman as waltz (which almost works)

Guy rocking lamp (who plays pretty well) Starman

I have this dream... an alien hears all these people-- even dozens more that never posted on Youtube-- playing Starman on ukulele. The alien gathers all these people up in his spaceship and brings them to Central Park. They all know why they're there. At once, without rehearsal, they all play Starman at the same time. People in the park join them in song. We are there.

New Plan

2009-02-18T10:28:00.000-08:00

Killian made a strong case today for immediate treatment targeting the tumor on his forehead and remaining tumor tissue on his jaw. Both docs (Beth Israel and Columbia Pres.) agreed to more radiation. We’ll probably go in next week to get the new radiation mask made, with treatments maybe starting the end of next week or the week after. Dr. G., his primary oncologist, put him on a clinical trial list for an IGF-IR inhibitor that they expect to do a phase II study of in the near future. The hope is that they can coordinate the radiation course with this trial – that’s a slippery fish though. I put a query out to the Sarcoma Alliance Discussion Board, asking about first-hand experience with IGF inhibitor side effects. That's what Killian cares about. We find the descriptions are better than what the trial folks offer because they list any and all possible effects – covering all known scenarios (and covering their butts). Whereas, other sarcoma patients tell you about things that really bother them.

I had looked into this class of inhibitors before Killian did the VEG-F inhibitor. The IGF inhibitor sounded more promising at that time, at least for Ewings Sarcoma patients. I’ve heard, since then, from Synovial Sarcoma patients who tried similar IGF inhibitors and had no success. So, if this drug can’t be coordinated, looking to off-label inhibitors or other alternatives might be just as well. Also, Killian is wary of trial demands as they pertain to his med regimen. For the purpose of clinical trials, he’d have to stop taking the drugs and/or the supplements that he feels might have contributed to recent coups against his tumors.

I feel whiplash, researching treatments again. Killian has new resolve to fight. Of course he does: he’s feeling SO much better as a result of all that horrible growth in his mouth being gone. So, Phil and I are concentrating on keeping flexible. Fighting when and how he wants to fight. What’s changed? What’s the sudden stop? Well, there isn’t the same drive to return to hours and hours of research and advocacy at the expense of making music and laughing with Killian and Cally. We have a different sense of presence, a different sense of “now” than we had five months ago.

I’m not looking forward to going back to McDonald house either. Don’t get me wrong, it’s a very nice facility, run and inhabited by very interesting and nice people. But, there is sheer joy and life when the Mansfields are together. Plus, there aren’t any advanced care patients at McDonald House—at least that I’ve ever encountered. As a parent, at this moment in time, I’m in a different place than the shell-shocked, the fatigued, the battle-injured, the frustrated and the frightened. I don’t want to be part of that support network right now. I need to live it up, get ukulele lessons from Killian, see art. Now is not the time to process. At least the Hole in the Wall Gang folks will be there to play.

Back to Normal

2009-02-16T13:51:00.000-08:00

Killian had a week of vitality we haven’t seen since I started the blog last summer. He pressed ahead with many of his studies, following a skippy return to school. Wednesday, he phoned from school to tell me he would be playing a concert that evening with the Chamber ensemble (if you have Flash software, you can see the performance via this link http://www.totalwebcasting.com/live/ulster/ ). I wondered how this was possible, given that he hadn’t rehearsed with the chamber group in 2 months. Turned out Winnie picked a couple of songs they’d done together before. Don’t know if this was by design or not, but thanks again Winnie! Then, Friday he played a gig in Margaretville with a band comprised of musicians his age – didn’t get home until 1:30. Then, he stayed out with friends Saturday – didn’t get home until 1:30 again (party animal). Sunday, I get a call from Ellie saying he was in church in Saturday night as well. He was out and about so much this week, that though I had no idea he went to church, it didn't surprise me. He was doing, doing, doing. This is all wonderful, and, honestly, a little unsettling (Phil's word, but I couldn't agree more). Phil and I are trying to stuff the nagging “What next?” in our heads in a little paper bag and save it for when Killian’s hungry for that brown bag lunch. The mantra is "be here now,” because that’s Killian’s lead. But, seeing him so strong, feeling so good – we want back in the fight! We take a deep breath. We are grateful. We are here. We head back into NYC tomorrow to consult with Dr. Harrison and Dr. Granowetter about “what next.” Killian will guide us.

My friend Don (thanks, again, for dinner Don!) says I blog on Tuesdays. Damned if it doesn't look like I mostly do. An organic schedule, I assure you, as I'm NOT organized in that way. That said, I WILL update the blog after our visit to the City tomorrow.

Back to School!

2009-02-09T17:10:00.000-08:00

Here we are, Monday before Valentines Day, and my Killian heart went back to school. It’s so…out there… his going back to school. Though his radiation burns and mouth sores are healing, he is still vulnerable to infection and has 3 holes on the left side of his face. Plus, he’s still on major pain meds! Here’s the thing, though. These are my issues. Why not go back to school? I talked to a counselor about it, listing all the scary stuff that could happen. His point to me: that the scary stuff will happen anyway – could be any time, anywhere. There is no right place for the scary stuff to happen. Apparently, I can’t protect Killian, Cally or the world from the scary stuff either (drat, I was sure I had that power at one time!) My friend Anna emailed the following today:
How are YOU.... really? (Circle all that apply.)
A) Strong with a crumble from time to time.
B) Strong on the outside with psychosis on the inside.
C) Surprisingly peaceful with an occasional meltdown.
D) Taking it one minute at a time.
E) Often on the verge of running, screaming, naked down the road.
F) What kind of idiotic question is this?
G) Other.
This morning, as Killian went to school, I was B), later in the afternoon I was D), now I’m G): laughing at my issues and at the fact that I had the nerve to be annoyed with Phil when he went off to work this morning because he didn’t share my issues. I'd canonize my husband, but I'm sure he'd find discomfort with the religious implications. Maybe I'll write him a song for Valentine's Day instead.

That Killian felt well enough to go back to school today is miraculous. His teacher’s responses in anticipation of his return: another small miracle.

“Sounds great! We can't wait to see him.” -- Global Studies teacher
“…I look forward to seeing him.” -- Art teacher
“I am happy to give Killian any type of modified curriculum… had him last year and he has strong reading, writing, analyzing and work ethic skills. So it would not be a problem for him to move to 11th grade English after doing a modified 10th grade curriculum. Thank you for the great news. Killian is a wonderful person and knowing he's better has made my day!!” -- English teacher
“Thank you for the great news!!! I am very happy that he is returning! The rest is all a piece of cake! Life and health top the list! Anything is possible when your will to live is so strong and inspiring as Killian's.” -- Spanish teacher
“Woo-hoo! SOOOO looking forward!!!” -- Orchestra teacher

Trip to Jump Jump's

2009-02-01T17:34:00.000-08:00

Jump Jump (what Cally, at 3, dubbed my father in an attempt to say, "Grampa John") took Killian out for a driving lesson and hooked him up with a group ukulele jam on Saturday. It was more activity than either probably should have endeavored.It followed a late night seeing John Pizzarelli at Thalian Hall in Wilmington, NC. What the hell. They are both living it up. Today, we explored graves of 5 generations of my family. I learned that my father doesn't ever want fake foliage on his grave. Between noticing patterns of Spanish Moss growth and hiking amounst drought-resistant Cyprus trees, my father learned that Killian -- much like he in his latter years -- shares such a deep fascination for natural environments that programming activities is unnecessary.

This trip has been beautiful. Time's taken a little breather. Beginning with the gathering at Celebrity Dairy. My sister, brother, aunt, uncle, and stepdad all made a point of gathering during a busy weekday lunch to be with Killian. It's quite amazing what can be put on hold when we are unanimous on what is meaningful. We were only there a little under two hours, but it felt good. Wilmington has been equally cozy for the psyche.

We head back tomorrow - the 2nd of February. Killian's mind is set that he will get back to school very soon, and he has started back on his studies toward that end.

Deviant Octobpus

2009-01-26T13:00:00.000-08:00

The first thing Killian asked me when he woke this morning was, "what's the definition of 'deviant?" I told him a, "a pervert," but then remembered that it's also someone who goes outside the accepted norm of behavior. Later in the morning, when he was waiting for radiation, he drew this squid (see sidebar), with a smoking cigarette in each tentacle. I asked him why the squid was smoking. He said, "it helps him get around." "Like a social crutch?" I asked, "Or, do you mean locomotively get around?" "I don't know... Social crutch I guess." Our conversations have often been about rebellion, or being an outsider these days. I'm so old now, though. It can't be any fun to have these discussions with me. Thank the stars we'll see a real, live teenager tonight. Max and his mom are taking us out for a yay-radiation-is-over dinner. Tomorrow is the last day. Hot diggety dog!

Six String Uke

2009-01-23T05:18:00.000-08:00

John Pizzarelli visited Killian - arranged through Hole in the Wall Gang Camp, but more through John, who actually really checks in to see how campers are doing. When he called to arrange a time at McDonald House to see Killian, I mentioned Killian's obsession with ukulele. John said he would bring a rare six string uke. Killian was thrilled that he was coming to visit. We'd just listened to "Rhode Island" on the radio. He was skeptical about "this six string uke..." "I think he might have meant an octave guitar or something. You sure he said that mom? A six string uke: it's a guitar if it has six strings..." John was charming. And, it proved to be a ukulele after all. Two of the strings have double strings. The lowest note is doubled by the octave above, and the highest string is similarly doubled. Killian says, "it gives it more ooomph." John loaned him the instrument. I can't believe he did, but he did. Since then, Killian has not put it down. "Pinball Wizard" sound particularly amazing on it!

John was telling us about a tour he was doing next week, and said that the first leg began in Wilmington, NC. I told him that I would be down there around that time. Killian got really excited about the idea of going... I contacted Dr. G. It's a tough call, but clearly mine and Phil's to make. Anything and everything could happen. However, he hasn't had bleeding or pain crises in a while. I have all the drugs any emergency room would have to deal with pain and bleeding. Whatever....with Phil's support, I'm taking Killian and Moses down to NC. It'll be a quick down and up, as I don't want him to be far from his hospital for too long. My mother will be visiting up here, so she can help drive down. We'll stop briefly by the farm and then head down to Wilmington. Quite the adventure.

Marking Days

2009-01-16T04:55:00.000-08:00

Unless the radiation machine breaks down (which has been known to happen), Killian finishes treatment on Jan. 27. That's also seven days into our new president, the first day after the Chinese New Year. My year, and Phil's year, and Barack Obama's according to the Chinese - the year of the ox. With Killian feeling so much better, freshness in the air, and the "miracle on the Hudson" that occurred yesterday, I feel a bit heady. 155 people in a plane dropped out of the sky when the plane's engines suddenly stopped AND THEY'RE STILL ALIVE. Heroes arose. It wasn't all luck. For a second there, I wanted to believe the pilot was just competent -- that any pilot would know how to do this, and I could be safe boarding any plane. Even if that's so (and it's a stretch of an argument to make because what that pilot did was amazing), there are the ferry drivers. Those guys weren't trained for that. Honor the heroes. Honor the everyday heroes too. Whether someone is risking life or limb, or risking reputation or red cent. The Mansfields know so much about the reputation-or-red-cent heroes. They keep fishing us out, propping us up, making sure we go on.

Likes People...

2009-01-15T05:19:00.000-08:00

Killian has always preferred the company of people. It may be the din he was raised in. He's a fantastic contributor to the familial noise too. By extension, he zones in on people trying to disconnect from society. He's slightly obsessed with people who withdraw and targets them by including them in his life. I remember when we moved from Manhattan to the Bronx, we'd been living with a musician named Richard. Though Richard did on occasion babysit Killian, I would not say that they were particularly bonded. Richard kept to himself. When we moved, Killian was completely fixed on the idea of frequently visiting him. It felt like an odd request to me, but I tried to honor it. We tried to call Richard. We left notes. Richard did not return our calls or respond to our notes. At one point, I told Killian that I thought Richard had new people, and maybe someday he might respond to our calls and notes. Killian pleaded that we needed to keep trying to contact him, saying, "I want him to be family because I think he might not have anyone." Killian's latest target is Mike, the shuttle driver at McDonald House.

Mike the shuttle driver is pretty much an asshole. He disconnects from people, sending a message through each casual encounter that he trusts no one. Mike talks on his cell phone (yes, while driving) about music. He talks with some authority and apparent knowledge of rap and hip hop. One day, a rapper came on the radio. Killian told me that the guy was great, but that he wasn't popular anymore. Killian couldn't remember his name and asked Mike who he was. Mike gave Killian the stink-eye through the rear view, and snapped, "I dunno!" He said it as if he were saying, "why would I know?" and as annoyed as if Killian had asked him where to get some watermelon and fried chicken. The next day, Killian said, "you like music, right?" Again, defensively, Mike said, "why?" "Well, I like music. It seems like you do too. I listen to and play all kinds of music...the music just has to mean something to me." Mike told Killian that he was a producer. Killian kept working on Mike until he finally got a copy of one of Mike's CDs. The slow thaw of Killian's magic has started...

The Tooth Will Out

2009-01-13T15:35:00.001-08:00

Youch! Sorry to post such a bad pun, but I'm slightly giddy and puns slip out when I'm gay. Yes, gay. Merry, bright as a daisy, and happy-go-lucky too. The oral surgeon took Killian's molar out. He extracted a half inch bulb of necrotic tumor tissue with the molar too. Prior to removing the molar, he had to pull the top of the tooth out from where it had embedded in his tongue. Killian yelped a bit at this, and I'm sure I reacted to his pain. The surgeon asked me to leave when he did the procedure. I did not resist. Killian was visibly shaking when the dental doc was done. Though he was on Novacaine and not in pain, it was a fairly traumatic event. And though he was blanched, pulsating and shaky, he kept saying, "I feel so good that it's out." Bleeding was minimal.

Happy to see a dentist?

2009-01-09T09:14:00.000-08:00

Phil's mom used to say that she would be offended if Phil or Amanda married a dentist. I've observed that she's not alone in her hatred of dentists. Many people have dentistphobia. Killian is fortunate in that he's always had GREAT (not just good) dentists. The hope is that his dentist charm shines on. Killian has a consult set up with an oral surgeon next Tues. We pray, pray, pray this guy yanks this offensive molar out. Killian says that an intense amount of necrotic tissue is in his mouth. It's conceivable that as there is much tissue falling out, perhaps that damn tooth will come with it. Enough already.

Dressing changes for the hole in his cheek are getting more difficult, as the tape has to be peeled off radiated, burned skin. No one has yet invented tape that sticks but doesn't stick. There's a serious need for levitating bandages. Better yet: bandages that absorb and then disintegrate into thin air.

We'll be in the Catskills this weekend. Killian is really excited about getting into the recording studio with Ralph and friends. That, petting his cat and dog, maybe seeing some friends... that is living.

Uptown, Downtown, All Over Town

2009-01-06T20:22:00.000-08:00

Killian told me yesterday, when I'd projected he'd be having a crash from the steroid he'd been weaned off any moment, that he was sure the crash would instead be today. Right again he was - the guy knows his body. He woke up so blue and lethargic, I barely got him out of bed, much less downtown to Beth Israel. He saw Lou Harrison today, who suggested that we really needed to see someone other than him about the hole in Killians' cheek and the tooth that's embedded in his mouth tumor. That tooth has become a big problem. It's also trying to embed itself in his tongue. So, after Killian's treatment we cabbed uptown (thanks to all who donated cab money: it's been a strategic blessing) to Columbia Pres. Dr. G. took a culture from the hole, as well as some blood and examined Killian in preparation for finding an oral surgeon and a surgical consult about that cheek hole. It was a long, inconclusive day. The kind of day that just had to happen and we just have to believe that it will make another day more efficient.

Not everything about the day was unpleasant or taxing. Killian's steroid-crash blues seemed to vanish like a wind change when he saw "his ladies" (Elena, Christina, Alexa, Diane... at Integrative Therapies). And, though Markus had come to do a museum, or art, or something fun with Killian, I know Killian was pleased that Markus was able to come along for the ride as we were sucked into the vortex of hospital time. Cat waited in the neighborhood of Columbia Pres. - also at the mercy of hospital time - and then she and Markus joined us for a movie back at McDonald House. Pineapple Express. They hated the movie. Good Friends....

New Year's Eve and Day

2009-01-02T15:29:00.000-08:00

Breon and Liam came to visit New Year's Eve. It was snowy and lovely as we walked the City. In one month, Liam has changed more than any human I've ever seen change in a month. Even Killian (but maybe that's because you see the people you live with differently). Liam's a real teenager now -- no foolin' around. I couldn't help but notice that he may have gained the 14 pounds Killian has lost.

Mark from Candle Cafe brought some New Year's Eve nutrition and party favors. There was a party at the McDonald House. Cally won some Toys R Us gift cards for winning the dance contest, which she clearly put her heart into. Though we Mansfields love a party, we are not known as late night party-goers. Yet again, we did not make it to midnight.

New Year's day, Killian, Phil and Cally went to Toys R Us (to dispense with aforementioned gift card, which apparently was burning a hole in Cally's pocket) in Times Square. Though they witnessed the residue of the previous-night's world party, it did not hold the same fascination for them as it always did for me when I worked in that area. I loved all the sewers lined with confetti and the QUIET: so unusual for Times Square. They walked about a good part of the day and Killian required only one dose of morphine. Same today. He's doing really well. We expect a quiet weekend, but he's still fragile enough that we'll stay in the City.

He's begun to work on the album again.

Along for the Ride

2008-12-30T20:54:00.000-08:00

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.

Our Christmas Miracle - Together at Home

2008-12-23T12:06:00.000-08:00

"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

Christmas Cool..... (click on arrow below to play

2008-12-22T16:29:00.000-08:00

Eat, Eat...

2008-12-18T11:52:00.000-08:00

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.

Settling in at the "Scottish Castle"

2008-12-16T12:23:00.000-08:00

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.

Going on a Tumor Hunt

2008-12-09T04:39:00.000-08:00

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.

Holidaze

2008-12-01T11:43:00.000-08:00

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.

Thanksgiving

2008-11-25T10:56:00.000-08:00

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.

Benefit Recording

2008-11-18T06:37:00.000-08:00

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.

Home

2008-11-13T15:34:00.000-08:00

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.

Taking Lollipops Home

2008-11-11T14:51:00.000-08:00

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.

Unwarp Successful

2008-11-10T13:31:00.000-08:00

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.

Unwrap Tomorrow

2008-11-09T14:20:00.000-08:00

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...

Post Embolization Stay

2008-11-08T10:23:00.000-08:00

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.

More Changes

2008-11-06T09:36:00.000-08:00

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..."

Halloween

2008-11-03T16:19:00.000-08:00

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

2008-10-17T04:19:00.000-07:00

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

2008-10-13T08:41:00.000-07:00

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

2008-10-11T05:19:00.000-07:00

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

2008-10-06T16:43:00.001-07:00

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

2008-09-29T10:12:00.000-07:00

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

2008-09-26T05:59:00.000-07:00

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."

Jazz standards and leeches

2008-09-25T07:05:00.000-07:00

Killian's working on Stella By Starlight and My Favorite Things, using lots of complicated chords on his new uke. He hasn't had the wherewithal to figure out stuff like that and I'm happy he does now. They moved him to oral doses of pain meds now (a move that means we'll most certainly be out of the hospital by tomorrow). They have him on Methadone and Neurontin, and that's what he'll use until whenever....

Killian has a lot of swelling and bruising on his tumors sites (ear and jaw). Though it's "dead tumor slosh," as Killian described, his body works hard to rid itself of such waste. Phil had the idea of introducing leeches to the sites. Killian watched some leech videos last night and researched it and got a little excited about the idea. Today he asked the doc in charge of the study and she gave the idea an unequivocal thumbs down. When Killian pressed for a reason (his scientific mind MUST be satisfied!) Dr. Lee explained (after saying, "isn't the fact that it's gross enough?) that leeches secrete anticoagulate and he's already got leaking from the veins around the tumors. Killian gave her response, an oh-alright and has since let go of the idea. Wild stuff though. In researching it, we saw women in India getting leech facials. Their skin did look pretty good after...

Positive News!

2008-09-24T10:52:00.000-07:00

Though the pain management team is still trying to find the right combination of drugs for Killian, his pain seems to be responding to a combination of Methadone and Neurontin at present. The pain isn't gone, but he's not in crisis anymore. The docs just confirmed that the pain is from swelling and that the swelling is caused by what looks (from last night's scan) to be some blood and necrotic tissue. In other words, this inhibitor can slow or stop the development of the of blood vessels needed to feed his tumors, thus starving them of what they need to grow. In a best case scenario, the inhibitor shrinks the tumor by causing tumor cells to die (a.k.a. necrosis). Right now, we have the best case scenario. The VEGF Trap is putting a hurt on the tumor!

This does mean there's still a lot of swelling and we need to address that (because it hurts our dear boy). But, we're moving in the right direction!!!!

Pain

2008-09-23T05:18:00.000-07:00

Killian received the VEGF Trap on Friday eve and at 1:30 on Saturday afternoon he suddenly started to have pain. Phil was in Rhode Island on a shoot for the Times and I was in Kingston (30 miles away) shopping for weekly supplies. My phone was uncharged and useless and the car was acting up. Killian tried reaching his doctor, but wasn't aware that he had to go through the on call service. He phoned Josh and Julie, neighbors (and Josh his acupuncturist). Josh treated him to no avail. The pain worsened. When I got home, I asked Josh to bring Killian over (the car still acting up). When I saw Killian, the primary tumors (jaw and ear) were alarmingly swollen and more purple. Josh asked if there was anything he could do. I could tell Killian was holding in the pain, so I said, "yes, please take Cally." The minute she left, he started screaming out and crying. On Saturdays (by this time after 6pm) the only pharmacy open is 30 miles away. Because of the acting-up-car, I asked our neighbor Mark to drive to Kingston to get a jump on the drive, while I I got to work with the on call service to get pain medicine called in. By the time he returned with the medicine, it was almost 8pm and Killian had been in a kind of pain I've never seen him in before. Phil had been phoning, as he drove back from Rhode Island, hearing him in pain and unable to be there. I was hoping he would just drive safely, but concerned for him as well. By 8:30, I had a feeling the Oxycondone they'd called in for the pain would not work and we'd have to go to the hospital. Phil was only 30 miles away, so I phoned neighbor Diane and made an arrangment for her to watch the puppy and then phoned our friend KT to see if Cally could go to her house overnight to stay with her daughter Lucia.

At Benedictine hospital in Kingston, they gave him Dilaudin (don't know how this is spelled) and it worked almost immediately. Grandparents Matt and Mary were scheduled to visit and we asked Killian if maybe we should cancel and he vehemently rejected this plan. He was also dead-set on doing a recording session for Uncle Rock's new CD (a song about Big Foot on which he'll play ukulele). Benedictine sent us home with a couple of doses that were lower than the dose he'd recieved intravenously. He made it through most of Saturday night, and when he woke on Sunday, his pain was a "steady 3 to 6" (on the 1 to 10 pain scale). I had a feeling we'd have to go right back to the hospital, but Matt and Mary arrived with a NEW UKULELE!!!!!!!!!!! - one that Killian had been seen when we were there in Rochester for Chad and Chelsea's wedding. The NEW UKE!!! caused enough distraction that Killian kept saying he was o.k. Cally came home and we all had dinner together. We could tell he was still in pain because Mary and I made him the dinner of his dreams and he couldn't eat it. Pain receptors are tricky. They keep upping the ante. We'd planned to go to Columbia Presbyterian Mon. a.m. anyway, and we got an early start. Phil had to stay with Cally and keep some income coming in. By the time Killian and I were at the end of the 2 hour trip, Killian was in pain crisis. They gave him another IV (morphine this time), which helped a little. They had to up the dose a couple of times before it really took the edge off. SO, Killian was admitted to the hospital and will be here, probably, for the week. They will use that time figure out a pain formula and then to monitor what's going on with the swelling and color change in the tumors.

Last night, Nancy (a friend from North Carolina who lives here now) came and watched Killian while I got us toothbrushes and PJs and other essentials. Candle Cafe delivered food with lots of love in it. Killian got a little extra pain med (he's back on Dilaudin now), and ate happily for the first time in days.

VEGF-Trap Trial a GO!

2008-09-18T12:23:00.000-07:00

Just heard that we got on this clinical trial and will be going to our stomping grounds in NYC at Columbia Presbyterian for Killian's treatments. They'll use his port for delivery of the medicine, but it only takes an hour. He'll be able to get more acupuncture there too. This is good news. For more on this trial, check back a couple of posts. SO happy that he's going on something!!!!

Next Steps

2008-09-14T12:16:00.001-07:00

Killian has decided to do one of the VEGF trials. He strongly prefers being at NY Columbia Presbyterian hospital, and wishes to wait until that trial (a drug known as VEGF-Trap) opens. We all agreed to wait until Wednesday night and if it doesn't open by then, we'll hop on the opportunity for the other VEGF receptor (VEFG-rz, AKA Cediranib) through NIH.

I've had a few moms ask why Killian is making these decisions. First, we make sure that he understands the choices, as well as the risks and potential benefits of each choice. Also, it's important to keep in mind that we don't know if any of the drugs we are trying will help. We have hope, no statistics. These options are all too new. If there were a treatment we knew would help, we would insist he do it. He could, at any point, choose to do no more treatments. Each day I spend hours on the internet, researching, looking for some treatment that Phil and I can justify insisting that Killian undergo. We haven't found that yet. However, I find new trials, new stuff to think about and try almost every week.

Still exploring Options

2008-09-10T08:28:00.000-07:00

It looks like the trial for R1507 (the inhibitor we thought looked most promising) is closed to Synovial Sarcoma patients. Killian wants to get on something right away instead of waiting for this or that preferred trial. SO, we have until the end of this week to tell NIH whether we'll take them up on the Cediranib (VEGF - rz) trial. the VEGF-trap trial through NY Columbia Pres. is preferrable because it'd be back "home," and that hospital has so many other services we could all use - Integrative Therapies, family counseling, etc... But, as Killian wishes, we will go with whatever bird is in hand by Friday.

We suspect that lots of trials will keep coming up for R1507 if either VEGF inhibitor doesn't work. R1507 inhibits IGF reception. There might be some homeopathic drugs to help with this too.

Killian and I fly back to Cally and Phil this afternoon. We all need to be together for a little while.

Yondelis - no longer an option

2008-09-08T14:47:00.000-07:00

Killian had several scans today which confirmed what looked to be tumor progression in his left jaw and ear. Very, very small spots on his lungs look to be no larger and no additional nodes (neck) were infected. This means that Yondelis is not working for him. The first question asked of him was if he wanted to talk about other treatment options. He said, “as opposed to what?” Dr. Fox said, “well, you could live your life without hospitals, drugs, medicals trips and just see what happens.” Killian was adamant that he wanted to try another drug trial. He is concerned that it not be completely all-consuming/devastating to his life at present, which leaves out some options. However, there are no confirmed treatments for Synovial Sarcoma – no if-you-go-through-this-hell-you-have-a-good-change-of-making-it treatments. So, at present we are looking for balance.

The doctors at NY Presbyterian Morgan Stanley Hospital and at NIH are working together. Each has enrolled him in trials – just so that the spaces are saved. I will be researching options tonight, and anticipate Dr. Fox here at NIH and Dr. Granowetter in NYC to have some answers tomorrow to questions I’ve already posed. I think Killian will decide on an option tomorrow, providing he has the information I believe he needs to consider all pros and cons. Phil and I will talk late tonight to feel each other’s opinions out.

At NIH, he will do some tests tomorrow to confirm his eligibility for a trial of a drug called Cediranib. He could possibly start on this as soon as Monday. It is taken orally and will require monthly trips to NIH. I sense that when you have a continuum at NIH, alacrity of moving from trial to trial is better. I’ll feel Dr. Fox out about this more tomorrow. Here is a link to abstract on Cediranib trial:
http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=486817&version=HealthProfessional&protocolsearchid=5108956
In NYC, Linda Granowetter may use the same eligibility tests for VEGF – trap. He could possibly start on this as soon as Monday as well. It is delivered through his port every three weeks at a hospital closer to home that feels more like home. Here is the link to VEGF – trap:
http://www.pnas.org/content/99/17/11393
Dr. Fox mentioned a Phase II trial of the anti IGF-1 receptor R1507. This at least mentions use for Synovial Cell Sarcoma and has fewer side effects (I believe). It would require weekly infusions through his port, but I’m unsure as to whether he would have to enroll at NIH or could Granowetter enroll him in NYC. Need to know more about this and anticipate information from Dr. Fox tomorrow. Here is a link to the abstract on that trial:
http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=588162&version=HealthProfessional&protocolsearchid=5102663
There has been a lot of talk about Irinotecan on the Sarcoma Alliance Discussion Board. There appears to be a trial open, but neither Dr. Fox nor Granowetter have mentioned it. I will pursue more information tomorrow. Here is a link to that abstract:
http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=563758&version=HealthProfessional&protocolsearchid=5108956

Finally, I’ve heard some information about other drugs and about folks do genetic assays before trying drugs to see if there’s any point. Phil and I have lots of reading to do and will ACTIVELY post here what we find.

There’s always hope – we all feel this strongly. Feel free to post to this blog and we'll get back to as soon as we can.

Yondelis #2

2008-08-17T09:44:00.000-07:00

Killian received an increased dose of Yondelis, and is tolerating it beautifully. He's not had a lick of nausea and is eating, as Mary Manfield aptly described, "like he's got a hollow leg." He and I are traveling while he's on that charming, ball-busting steroid. He goes off the 'roid tonight. I had to do a subcutaneous shot for the first time in four years (the last time he had cytotoxic chemotherpy). He said I did as good as any nurse. I can't help but wonder if he just said that to make me feel better. He says I can't hide when I'm nervous, which must be quite annoying for him because I feel nervous a lot these days. The shot I gave him boosts his white cell count, and will keep his blood levels where they should be so we can continue traveling. We're headed to Maine. I've had a standing invite from the Dunigan clan to visit their house in Maine since I was a little older than Killian. Yet, I've never been there. Killian has been four times and insisted I go this time. I'm going to study the relaxed people and act as if.

At some point, all this Maryland-to-wherever traveling should break me of the spacey, disorganized travel head I'm in. I demonstrated some ridiculous leadership on our trip down to NIH -- including missing a connecting flight! Though I was perfectly aware that I was flying, I proceeded to bring large bottles of shampoo and toothpaste in our bag. Killian and I had a discussion about how the whole no-liquids-on-planes thing came about. To the best of my recollection, someone blew up a train in England with combustible liquids they secreted aboard
-- something everday, like peroxide and acetone. Well, you can still bring liquids of all sorts and sizes on trains. Who cares about trains? If a train blows up, at least it won't fall on a bunch of people. Those Transportation Saftey folks sure did learn their lesson about planes though, whereby they dictated that containers of liquids could not exceed 3 ounces. Does anyone really feel safer because of this? I can't be the only person to whom it has occured that combustibles are not the only way one could do serious damage on a plane. What about mixing together a few 3 oz. containers of stable, everyday liquids like bleach and ammonia for some poison gas? I think I'm starting to sound like I'm drafting some kooky manifesto. I just want my toothpaste back -- that Arm & Hammer Age Defying toothpaste is hard to get.

Thank God For...

2008-08-06T08:51:00.000-07:00

We made it back home and Killian is doing well. His blood counts are what they were anticipated to be. The lowered white blood cell count means the usual chemo rigamarole – no sushi, no unpasteurized dairy, no being around sick people, wash hands constantly, no swimming in fresh water… “WHAT!%$*#??? It’s August! I can’t go to the swimming hole?” No swimming hole and hot, chlorinated swimming pools are carcinogenic – all I can say is thank god for Dusty’s pool. Dusty is one of the funniest, warmest, and most steadfast persons to walk this earth. She also happens to have a saltwater pool and has invited Killian to swim any time.

Dusty brought me chicken soup without asking what I needed. She just knew. Neighbor KT picks up Cally for sleepovers when I or Phil look worse for wear, without telling us we look worse for wear. Neighbor Sharon gets me out walking and makes deep small talk. That’s an art that only the most considerate perfect. Another thing I can say is, thank god for neighbors. While I’m thanking god, I want to extend thanks to those with whom I’m more familiar than god. Sometimes it’s easy to overlook the familiar. I forgot to thank Susie, Sharon and Sarah for what they did for the benefit concert in July. Thank you Susie, Sarah, and Sharon. – you are inspiring goddesses all. In my mad dash to get acknowledgements out before leaving for the NIH, I’m wondering about others I forgot to thank. I hope I’ll remember soon. If not, I hope the unthanked don’t feel what they did was thankless. I’m profoundly grateful, and blessed to be living in a state of gratitude. Living in gratitude is, in itself a gift. Gratitude keeps bitterness from eating away the soul. Gratitude keeps me from drowning in self-pity. Gratitude is an opportunity to feel connected to others, to the earth. Gratitude is the path to forgiveness and peace. Gratitude might could save us all.

P.S. Phil tried to tell that "might could" was a typo. Actually, it's a southernism that emphasizes the perpetual and undirected motion of non-commitment.

Better Now

2008-07-29T13:37:00.000-07:00

It seems the Dexamethosone (still not sure how you spell this) is out of his system and Killian's feeling much better. There's a teen retreat here at the Children Inn and he's been doing various fun things with teens and twenty-somethings all day. He's bowed out from a couple of activities due to fatigue, but takes a nap here and there and gets right back in the game. He does say he feels the fatigue "in every muscle, even my organs." Now that's tired. Most folks on Yondelis say they feel this way the first week after every treatment and then they start to pick up energy.

We leave the Children's Inn for home Friday morning. YAY! I officially changed the train tickets today. We've met great folks, heard amazing tales of strange coincidences and flukes. Won't tell specifics, but suffice it say when there's billion to one odds of genetic anomallys involved with several people in the room -- the stories are dumbfounding. Brave, brave people here. We probably won't stay at this place much when we return. I suspect we'll check right in the hospital, do the treatment and leave.

Blue Fish

2008-07-28T09:31:00.000-07:00

Killian crashed hard this morning from the steroids. He was very blue, the kind of sad that makes my stomach feel like I've swallowed butterflies. Even in the face of good news, this drug-induced depression snatched him out to sea. He's reassured that it's temporary, so he might behave like a native undertow expert and not struggle. He doesn't fight it, he's sleeping now. It's like fortune fish that curl up because your hand is either warm or stay flat because your hand is cold - no great mystery. "We know this happens, like clockwork, don't be alarmed," said Dr. Fox. It doesn't matter what we know, what we can rely on because we just want that freakin' fish to curl up for good luck. Maybe it's just me, I do tend to fixate. Confession: I'm playing Publishers Clearinghouse Sweepstakes online. It's replaced my daily online ritual of checking my horoscope because I don't want daily insights -- however vague and unthreatening -- I want kiss-the-Blarney-Stone-four-leaf-clover luck. There was the time when Killian finished his first year of chemo and it was his 12th birthday party and a black butterfly with hints of electric blue at the tips of his wing landed on my boy's head and sat there for the longest time. Undoubtedly a sign of luck. Then there was the time we were headed into the City for Killian's second major jaw surgery and I looked out at the February, gray scramble of dead branches and brush and on one lifeless bush sat 5 brilliant bluebirds. Also a sign. The week he was born, there was a shower of shooting stars so close and so numerous I thought he was set for life. I made so many wishes for him that night.

So, it looks like we'll be going home a little early - good news. We are done with this stay already.

ROOOOOIDS!!!!!!!!!!!!

2008-07-26T08:35:00.000-07:00

It's been 24 hours since his Yondelis infusion and he's doing great. No nausea, no fatigue. This is largely attributable to the Dexamethasone (I think I'm spelling this right), a steroid he'll be on throughout this process. He is wild, unpredictable and uncharacteristically macho. He does a Charles Atlas pose, points to the fake tatoo of a teddy bear on his bicep and yells, "Rrrooooids!!!!!" He's also been pretty off-the-wall. Sample question: "have you ever had to choose between death and M&Ms mom?" He finishes the steroids tomorrow a.m. and there's supposed to be a marked change in disposition that I'm to look out for. We're going to work on "If I can Dream," which he wants me to sing all hardscrabble and burnt out, like Elvis sang it. I shouldn't have too much trouble with that.

Yondelis In

2008-07-24T08:19:00.001-07:00

They accessed Killian's port for the first time (ouch) to administer the Yondelis (a.k.a. Trabectedin, a.k.a. ET-743). Last night, he experienced what he described as a "squishing" of fluids near his heart. They immediately did an EKG as he was experiencing this symptom and saw no disturbing heart activity. This morning, this symptom was gone and they proceeded on schedule. One doc, late last night, said that sometimes the central line ports have to settle in and once it lowered at bit, he might not feel that sensation. That doc was right, thank goodness. Killian was all geared up for this, and a delay would have been damaging to his psyche.

Killian's been receiving the drug for 8 hours now. he's eaten lunch and is now eating tomatoe soup and grilled cheese - no sign of nausea. He says he feels nothing - except boredom (he can't even leave this ward). This is a good sign toward his being able to tolerate Yondelis. We'll know even more in the a.m. We had a defective pump last night, which beeped mercilessly all night. They've switched out pumps and are putting all fluids in through his central line and we all hope for some peace tonight.

First Days at the NIH

2008-07-23T11:58:00.000-07:00

Upon arriving at the NIH, we were impressed by the ultra-tight security. So, we're very unlikely to be bombed. We spent the first full day in the clinic (7:30am to 5:30pm). As with all hospitals, the NIH metes hours out differently. Normal day: 1 hour = 60 minutes (unless renewing your driver's license or visiting distant relatives). Hospital time: 1 hour = 253 minutes (a Mansfield average). NIH time: 1 hour = 125 minutes (average of our first two days, based on response to question, "how long will it be before Dr(s) Dave/Fox/Chuk will see us?") We are thrilled by the care we are receiving here, the Children's Inn (sort of like a cross between a Hostel and a Hotel) and the relatively compressed NIH time. We did have one unpleasant surgeon utter some ridicuously stupid statements. To our response when asked where we received treatment the first time, he said, "you were in New York City and didn't go to Sloan Kettering???" I shot him frozen eye darts of death, which merely whizzed past him. When asked if I could accompany Killian to the operating room, he then went on to suggest that Killian should man-up at 15 years of age, and that he shouldn't need me in there with him. I progressed from frozen eye darts of death and angry tone of voice to meeting with a patient representative. Really, though, that guy's a blip on our radar here. Everyone else has been outstanding.

Killian's surgery to get his central line port in was four hours ago and he's in the recreational room down the hall playing air hockey with a gorgeous child life specialist. I'll bring him his ukulele later so he can cement his legacy of charm. He's on his A-game in terms of the old charm today. He's cracked wise since coming out of surgery and hasn't stopped. He even got someone to come to the hospital from another part of the NIH campus to give him acupuncture, to which he is attributing his current air hockey athelticism and really great post surgical mobility.

Tomorrow he starts Yondelis (we call it Trabectedin here).

Benefit Concert Blast Off for Sarcoma Awareness Week

2008-07-12T06:31:00.000-07:00

The community we live in put together an amazing line-up of musicians for a benefit for Killian. Bruce Katz and Randy Ciarlante, Peter Schickele, Woodstock String Quartet, Fran and Brian Hollander, Vinnie Martucci, Gary Kvistad w/ Giri-Mekar and Fido. I know the event wouldn't have had wings without Wini Paetow, Krista Cayea, Jim Sofranko, David Andrews and the good folk at the Shokan Methodist Church. I'm sure there's someone I'm missing, but huge thanks to the Boiceville Inn, Catskill Mountain Coffee, Hanover Farms, Boiceville Supermarket, Hong Kong Chinese Restaurant, Kasey's Cafe, Bread Alone, Winchell's Pizza, Olive's Cafe, Village Pizza, Reservoir Deli, JaBellis Bakery, Anne Marie Johanson, Chet Karatowski, Eriv Karatowski, Millie Delgado, Dusty Stack, Sarah Cole, Linda Greenleese, Francine Scherer, Maryanne Olsen, Sarah Fairbaim, Charlie Blustein, Lolly Adler, Carol Muranti, Candace Sosler, Amy Russell, Bruce and Linda Golden, Natalie Van Mulken, Suzanne and Ed Kossoy, Vikki Reid, Charlie Woodruff, Connie Kieltyka, Callie and Livvy Paetow, Stephen Bielecki, Carol Maltby, Loretta Dooling, Mega Van Gorden, Chet Cochrane, and Nate Cayea. The event was successful in so many joyful ways. We live in a very special place, with very special friends and neighbors. Lots of us found each other at the General Store and I'm grateful the Mansfields had that for a time. When folks around here come together to help their neighbors, the positive energy is palpable. I sort of wish that this particular 'coming together' was to help some other son. I'm comforted that we know so many people of remarkable character. For instance, I know that we were not the only family battling cancer at the Shokan Methodist Church last night. It blows me away, the strength in people. I feel it strengthen me and I know Phil feels the same - we've talked about it.

July 12-17 is Sarcoma Awareness Week. About 1% of adult cancers are sarcomas (and about 20% of all children's cancers). Many sarcomas resist current treatments and Killian's Synovial Sarcoma definitely falls into this category. Because sarcomas are rare cancers, developing new drugs is not lucrative for pharmaceutical companies. The approval process for these orphan drugs (those that treat rare diseases) is slow and frustrating for those of us whose hopes float on news of treatment options. Killian, fortunately, got into a study being conducted at the NIH of Yondelis (aka Trabectedin or ET-743). We were ready to jump on a plane and move to Spain if we had to in order to get this drug - that's how promising we think it is. Yondelis is a standard of care in Europe and has been in trials here for years. This year's theme for Sarcoma Awareness Week is "Sarcoma Knows No Borders." One reason for the theme is that the treatment options are being developed worldwide and that this international effort is essential. Another is that sarcoma effects the connective tissues in the body (and doesn't feel confined by borders or margins, often recurring in spots unrelated to the first area of treatment). I'll be at the Boiceville Market on Friday selling "Sarcoma Knows No Borders" bracelets. 100% of sales go to sarcoma research via the Liddy Shriver Sarcoma Institute.