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This fundraiser ended on 05/10/10

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In 1998 Tom developed hemangiopericytoma (HPC) and has undergone many surgeries to remove tumors in his brain, lungs, spine. Throughout he has been able to continue to work and support his family.

A Friend In Need

Many of you know Tom Heggestad and his wife May Della Torre. Tom met Krishnamurti in 1983 and since then has been deeply involved with helping the Krishnamurti Foundations protect and share Krishnamurti’s legacy. A graduate of MIT, Tom helped develop the systems to track Krishnamurti’s immense lifetime work digitally and in the last few years he has been an incredibly valuable member of the team supporting both the Krishnamurti Foundation’s archive operations and programs, and Oak Grove School.

In 1998 Tom developed hemangiopericytoma (HPC) and has undergone many surgeries to remove tumors in his brain, lungs, spine. Throughout he has been able to continue to work and support his family. We’d like to share what Mary and Tom say about their challenge to survive and thrive in spite of a potentially deadly disease and difficult courses of treatment. You can read about their amazing journey below.  Or go to Tom's CaringBridge page for updates from Tom and his family.

BUT FIRST WE’D LIKE TO ASK FOR YOU HELP. Tom has a chance to participate in a new immunotherapy clinical trial that shows early and remarkable results. But the treatment will cost $15,000 and Tom, who has a newly discovered brain tumor that he hopes the treatment will address, needs to raise the money. For all of us who are Tom’s colleagues, he is an inspiration, remaining calm and cheerful even as he works through painful side effects and daunting prospects. This has been a long haul and Tom takes it one day at a time, with unbelievable perseverance and joyfulness in his daily surroundings.

If you can help by making a donation in any amount, we hope to raise the money needed for the new treatment and a little extra to ease the burden on Mary and their two beautiful daughters, Yulia and Tanya. They are the inspiration behind Tom’s dedication to working with his disease every way he can.

Our goal is $20,000. For all of us who have benefited from Tom’s decades of hard work and just from knowing him, this is a chance to help a friend in need.

Read more about Tom and Mary’s new opportunity below...

 


Tom and Mary’s message:

As many of you know, Tom has been dealing with hemangiopericytoma (HPC) for a long time. The story began with a brain tumor in 1998 which was treated successfully by surgery and radiation. In late 2005, we were surprised to discover that the HPC was back and had metastasized to lungs, liver and spine. Since then he has had several surgeries and numerous other treatments to try and stay ahead of the disease. Tom also follows a special diet and takes many nutritional supplements as part of an integrative approach to maintaining his health. Meanwhile, he continues working full-time and raising a family. Most people who know him can only refer to him as amazing! Please follow the journal entries to follow his progress and feel free to add comments in our guest book. We would never have made it this far without your support, for which we are forever grateful. Mary and Tom

Current situation:
Friday, February 26, 2010 11:32 AM, PST
We are going ahead with the immunotherapy clinical trial! Very excited, with some trepidation too. Tom's UCLA docs did not protest--which was good enough for us to decide to continue forward. We will be in Carlsbad--near San Diego--this Wednesday to Saturday for tests, meeting the study doctors, and for Tom to receive the first injection of the study drug Allostim. For the rest of March we will be going back and forth to Carlsbad for the various phases of the treatment protocol. After that, we wait for follow ups 30, 60 and 90 days later to learn how its working. If the vaccine succeeds in stabilizing Tom's tumors for some length of time and gives him a break from constant treatments, we will be grateful--all the more so if they start to disappear!

I was able to communicate with a woman who recently participated in the trial and she gave us more information that has been helpful. She reports that most of the patients she has met have been enjoying a better quality of life, and living longer than expected since participating in the trial. She described them as 'ecstatic and enthusiastic' about the treatment. Although one patient sadly has died, it was not due to the treatment but because his disease was just too advanced for survival. The first patient treated was a man in his 80's who enrolled in the trial instead of starting hospice--unable to eat or walk. "They cured him." He is back at work driving his son-in-law--who had taken over the family business--crazy. The worst side effects she has heard about was one patient who developed hives for three weeks. Most people have flu-ish symptoms like fever, aches, swollen lymph nodes for a couple of days after each injection.

Our friends Pathik and Meha have offered us a place to stay by the ocean in Dana Point for most of our overnights near Carlsbad. Our friends here--Krista and family, Melinda, Karen and Jeff--will be taking wonderful care of Tanya and Yulia during our frequent absences this month. Krista has even gone beyond the call to encourage us to just stay down there between some of the appointments for R & R and healing time. Jim and Chris are spearheading fund raising efforts to help us foot the bill for the trial, and another generous friend has already donated $1000 to the cause. All the loving notes and care we have been receiving keep us going. I hope all of you know we could never do this without you.

This week Tom had CT scans and we are waiting for the results. His blood tests showed elevated liver enzymes, which likely indicates his liver tumors are growing. He also underwent an outpatient surgical procedure yesterday to have a power port "installed." This is a device implanted under the skin on his chest that allows ease of access to his veins for blood tests, infusions, etc. and was a prerequisite for the clinical trial. Today I called UCLA Medical Center and ranted a bit about the fact that they still had not scheduled the SRS for his brain tumor. So now that is scheduled to be treated this Tuesday, at UCLA, and we will spend the night there at the guest house and continue on to Carlsbad the next morning.

So, dear friends, family--this is the time for all those prayers, positive thoughts, and healing energy to be focused on a successful outcome for Tom's healing journey.

Thank you!

Mary

 

 

A message from Troy Sumrall, KFA’s Chief Operations Officer.
These clinical trials are NOT free. The drug company is donating the drug, but the treatment, tests, follow-up are expected to run $15,000.

Tom has devoted some eighteen years of his time to the KFA and Oak Grove School. Ten of those years were as a volunteer. I’m aware of his pay for the eight years he’s worked here as an employee. Given the time he puts in, versus the salary, he’s making a few bucks an hour. (He works from a laptop in between tests, or is in his office working half time for OGS, the other half for the KFA and the third half for miscellaneous repair jobs at the school, or fixing the eternally cranky vault monitors at the Archives.)
Since we have no intention of doing without him, we are asking friends and donors to pony up enough money to get this next step paid for. When the costs are covered, we will certainly let you know.

You have a dollar, please send it in. You have ten, a hundred, a thousand? Please send it in. Thank you in advance for your kind consideration.

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