Monday, September 29, 2008

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.

Friday, September 26, 2008

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."

Thursday, September 25, 2008

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...

Wednesday, September 24, 2008

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!!!!

Tuesday, September 23, 2008


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.

Thursday, September 18, 2008

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!!!! 

Sunday, September 14, 2008

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.

Wednesday, September 10, 2008

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.

Monday, September 8, 2008

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:
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:
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:
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:

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.