Tuesday, July 29, 2008

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.

Monday, July 28, 2008

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.

Saturday, July 26, 2008


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.

Thursday, July 24, 2008

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.

Wednesday, July 23, 2008

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).

Saturday, July 12, 2008

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.