Along for the Ride

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

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

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

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

Our Christmas Miracle - Together at Home

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

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

Eat, Eat...

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

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

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

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

Settling in at the "Scottish Castle"

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

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

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

Killian receives his third treatment tomorrow.

Going on a Tumor Hunt

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

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

Holidaze

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

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

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

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

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

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

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

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

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

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

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

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

Bad Feeling

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

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

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

Worry Dollhouse

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

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

Decrease in Primary Tumor

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

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

VEGF-Trap: 2nd Treatment

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

Sibling Sonara

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

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

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

Landed Gentry

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

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

Jazz standards and leeches

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!

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

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!

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

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

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

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

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...

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

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

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!!!!!!!!!!!!

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

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

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

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.