Division of Oncology

Carolyn A. Felix, M.D.
Colket Translational Research Building
3501 Civic Center Boulevard
Room 4006
Philadelphia, PA 19104 - 4318
Phone: 215.590.2831
felix@email.chop.edu
www.chop.edu

November 17. 2010

Mr. Edward Lopata
P.O. Box 353
Marlboro, VT 05344-0353

Dear Ed,

Thank you for your recent email. I hope that you are well. Each time I hear from you I feel a tremendous sense of zeal for the privilege of being the clinician scientist you selected to travel through this chapter of life's journey with you by endeavoring to translate Jesse's college tuition into a cure for the very disease to which he succumbed. As always it is nice to be able to update you on the progress we arc making towards conquering MLL leukemia. You are making a tremendous difference with your support for this work. No words could adequately thank you for what you have done.

Last year, the Children's Oncology Group was just launching a clinical trial based on discoveries by my lab at The Children's Hospital of Philadelphia. We had found that MLL leukemia is sensitive to a drug that we have been testing to restore the pathways to leukemia cell death. The COG clinical trial is a Phase I trial to find the appropriate doses of the drug
in children, and it is ongoing.

Since that time we also have continued to learn much, much more about how this drug is working, including being able to identify, based on fundamental characteristics of the leukemia cells at baseline, which cases are likely to be most sensitive. And, even more importantly, the rigorous and deep characterization of the cells at baseline has allowed us to identify
different drugs to test in combination with the drug in the Phase I trial. As we now embark on these next studies, we are very optimistic that these combinations will make what looks like a very promising drug from our detailed studies in the laboratory even better and that we will be able to translate these discoveries into cures.

Beyond the progress we are making in the laboratory, there also have been many very exciting changes and additions to the already outstanding resources at CHOP that will be able to be leveraged to realize this vision. My laboratory relocated to CHOP's brand new Colket Translational Research Building (CTRB), which was dedicated in June 2010. The CTRB is
home to the Center for Childhood Cancer Research, Leukemia / Lymphoma Section and Developmental Therapeutics Program with a consolidated infrastructure to achieve a translational research mission. This consolidated approach has been
very helpful to my mission to conquer MLL disease.

I look forward to providing you with more good news on the progress we are making. As the Thanksgiving holiday approaches, I will be thinking of you, your family and your dear son Jesse and the major inspiration that you all continually provide me towards making this all happen as a tribute to him.

As this holiday approaches I am also wondering if you might post this update on Jesse's website so that all will know how Jesse is continuing to battle this disease, but only now from above!

Have a Happy Thanksgiving and please know just what you have done!

Sincerely yours,

Carolyn A. Felix, MD
Professor of Pediatrics

c.c. John M. Maris, MD

scanned and converted by ocr 11/28/10

Marlboro Fair

Something about the Marlboro Fair brought back the palpable presence of Jesse. I love that the children visit the cemetery during the day (my ten year old Aidan among them), even if they have to be reminded to be respectful. 

During the summer, Aidan collected things for his new class--5th grade at Marlboro with David! Inside his fancy new three-ring binder, I found Jesse's photo tucked into the plastic sleeve for a loved one. 

The mystery of life continues...

Dear Jesse,

Just thinking of you, on this equinox; missing the chance to walk into the reading room of schauffler to find you with your head bent over a book by Voltaire, or to chase leaves with you on the way to tea... At least I can still tell you about my peppermint plant named Annie, and the headdress of yellow beech leaves I made today. I know you can't reply, but I feel somehow you are listening.

Jesse's Unveiling

These from the intimate and heartfelt gathering commemorating the unveiling of Jesse's memorial stone. For those of you there and those there in spirit...

A poem of Jesse's, a stanza of which is inscribed on the back of the stone...

The Architecture

Lines around space
but in it.

I am confronted by
the simplistic organization.

Ordered picture frames of
nows and thens, heres and theres,

Is our universe
organized in this moment?
with insides and outs?

Or only the instant when
the frame opens.

And the maple leaf floats inside
resting delicately as if to say,

This frame is not broken.
The picture is just now complete.

JJL 2005

I wrote and read this for Jesse on this sad, sad day of laying one part of this journey to rest; as the rest of the journey continues. ~Lisa

The Architect

Jesse came into our lives on a crisp and blazing October day. He was radiant and comfortable in his little body: a true Vermont child. I was enchanted from the first instant I looked into his deep eyes. He would always awaken with a sweet smile, his neck arching back and to the side in a slow feline stretch; a gesture he never lost.

Of course I already knew him. At some time in the late summer I had taken to seeing him in every shooting star above. I don’t speak metaphorically here. Ed and I slept under a skylight and I literally saw shooting stars as I was carrying him into late term…settling into the dream-awakening reality of welcoming this strange new being, turning and tapping inside of me. I heard his echoing voice in the stars. I hear him now.

You all knew / know Jesse. I don’t have to say much by way of expanding your knowledge. But I have thought of how I would convey the preciousness of Jesse to some new inquiry.

“Tell me about your son”…

Well. He was not a child of this time in many ways. Or perhaps more correctly, Jesse was a person, from a very young age, who lived just a little bit outside of time. I like to say a nineteenth century man, grown up from a Renaissance child… but I’m not sure anymore of the specific histories of his imagination and bearing.

He just came in with a broader brush than most, with a wiser heart, and caring concern for the aesthetics of refinement. Jesse never wore a pair of jeans, even on his toddler legs. When he discovered button down shirts, he never donned another sweatshirt. He wore a tie even on the hottest days of summer. And he had a trunk of costumes in velvet and brocade, tunics and capes that he dressed up in as part of his play – well beyond when most kids go there. He loved the sensuality of these exotic garments against his body and the freedom of characterizations that he could explore while traipsing with his courtly, or maybe troubadour airs.

But these were the trappings really, just the surface dressings, of a mind that loved to look backward in history for the mappings of internal order and quiet composition. Jesse spent hours looking at pictures of the world that we came from. As if he were seeking a personal trail back through time. As if he knew that his life would not belong here for long.

I also would mention his compassion and inherent empathy. I don’t ever remember his personal ire rising at anyone. Well, there was that one young man who charmed away two consecutive girlfriends, and those cops in New Jersey once… But more than most, his whole life, Jesse willingly, even automatically, (but never haphazardly), stepped into the perspectives of those around him – melding and mending the world from his large heart. He let me be me completely. That seems like such a small thing, but think about it. He allowed all of us to be perfectly who we are.

And one more encapsulation… born from this, and the core compass of an irregular and spirited being. Jesse allowed Jesse to be perfectly who he was. His self-possession was astounding to me. From the first, he lived into his unfolding with one part surety, one part self-humor, very rare glimmers of self-angst, and a boatload of flair and wit. He might have been too sure of his intellect at times in his coming of age, but he was formed by humility at others, and he never needed anyone to show him how to be Jesse. That is rare.

In the end, his courage was rare as well. I don’t know how he found that courage. There was even extra for me. I know he wanted to live so very much into his independent, adult life. I know he wanted friends and a wife and children, a life of focused challenge and beauty all around him. I’m so sorry not to have seen that. But his body crumbled outside of the range of being, and he fearlessly left to encounter all the realms of consciousness that he gallivants in now. He is always expanding, always beside us, always Jesse. I can’t go on without him – without this compass bearing.

And I could not have survived this unbearable loss without him either.

for those who grieve

"...I realized something then, which is

that you can love beyond space and time

and that when you love beyond...

you enter into a world where everything opens

onto

beauty

and

glory."

from a Feather in Your Heart

Andrew Harvey

~

something...

something about summer's ending

something about seeing Lisa at the pond

without him

something about knowing

the headstone

is coming

resurrects

the great loss

of this fair-haired boy

~

Commencement

In two days I will graduate from Northfield Mount Hermon school, after 4 years, 3 of which I attended with Jesse. My last semester here, which began with losing Jesse, is now over, and I'll no longer be a part of this place where I got to know him. Almost exactly a year ago, he walked the stage in his cap and gown, and got his diploma, just as thousands have done before him, and I and thousands more will do. I always assumed that he would be at my graduation, because one expects their dear friends and family members to be there. Jesse was a part of my NMH family, and although it isn't true, it feels like I'm severing one more tie to him. Even after an entire semester, I haven't been able to come to grips with the fact that Jesse is gone. It just seems oppressively unfortunate that he is always going to be somewhere other than me. As I say goodbye to people who I spent so long with in school, and who I may never see again, it reminds me of this- unbearably sad that we are all going to scatter and live and be in places other than NMH. I miss Jesse terribly still, and I don't expect it will ever get easier, only more and more familiar.
Best wishes to all,
Ruth Shafer