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.