Sunday, August 23, 2009


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 and his album SOMEWHERE ELSE. Goodbye.

Thursday, August 20, 2009

Last few days

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,”

Saturday, August 15, 2009

More album news

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.

Thursday, August 6, 2009

"Let the Children Boogie!"

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!"

Friday, July 31, 2009

War (hunh), What is it Good For?

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.

Thursday, July 23, 2009


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.

Friday, July 17, 2009

Back Home

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!

Wednesday, July 15, 2009

Home Away From

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

Sunday, July 5, 2009


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.

Tuesday, June 30, 2009

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.

Monday, June 8, 2009


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.

Thursday, May 28, 2009

Storm King

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.

Thursday, May 21, 2009

Nice Peace

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)

Sunday, May 17, 2009

Town of Olive

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

Saturday, May 9, 2009

Happy Mothers' Day

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.

Thursday, May 7, 2009

A Shot in the Arm

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.

Tuesday, May 5, 2009

Back and Forth

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….”

Monday, April 27, 2009

Bad Scans

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

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

Wednesday, April 22, 2009

Riding the Wave

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

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

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

Wednesday, April 15, 2009

Somewhere Else (Listening Party)

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

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

Friday, April 10, 2009

14th Street's Not the Same

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

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

Monday, April 6, 2009

Prepare the Rubber Duck!

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

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

Monday, March 30, 2009

Back in NYC Again

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.

Friday, March 6, 2009

Plan Nine From Outerspace

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

Friday, February 27, 2009

Back For More

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.)

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.

Wednesday, February 18, 2009

New Plan

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.

Monday, February 16, 2009

Back to Normal

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 ). 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.

Monday, February 9, 2009

Back to School!

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

Sunday, February 1, 2009

Trip to Jump Jump's

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.

Monday, January 26, 2009

Deviant Octobpus

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!

Friday, January 23, 2009

Six String Uke

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. 

Friday, January 16, 2009

Marking Days

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. 

Thursday, January 15, 2009

Likes People...

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...

Tuesday, January 13, 2009

The Tooth Will Out

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.

Friday, January 9, 2009

Happy to see a dentist?

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.

Tuesday, January 6, 2009

Uptown, Downtown, All Over Town

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....

Friday, January 2, 2009

New Year's Eve and Day

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.