(This letter was written by Fatima, from the oligo on-line support group.)

Senator Edward M. Kennedy
2400 JFK Building
Boston, MA 02203

May 22, 2008

Dear Senator Kennedy:

As the news of your diagnosis filtered through the air waves, we were all greatly saddened. Who are we? We are a group of brain tumor survivors and caregivers who understand the challenges you and your family is facing. We want you to know that thousands of brain tumor patients and families across the U.S. and throughout the world are praying for you and your family.

All of us have had different experiences that have ranged from triumph to frustration to disappointment. While some of us have grieved for losses, many of us boast stories of success, triumph of the human spirit and establishment of invaluable connections with family, friends and others within the brain tumor community.

Ironically, the month of May has been designated by the brain tumor community as Brain Tumor Awareness month, and this month is used to make our policy makers aware of issues that we so desperately need help with. While media pundits have been quick to highlight the morbid details of the disease, they have been too quick to ignore the stories of thousands of survivors.

As Lance Armstrong aptly once said, "Anything is possible. You can be told that you have a 90-percent chance or a 50-percent chance or a 1-percent chance, but you have to believe, and you have to fight." Lance Armstrong, like so many other survivors are living examples of what human beings are capable of achieving despite great odds.

As a champion of great causes in the past, we have no doubt that you will fight your brain tumor with your indefinite courage. We urge you to have faith and confront this disease with the amazing spirit you have demonstrated in your career through the decades.

We wish you all the very best with your treatment. As you yourself once famously said, "The work goes on, the cause endures, the hope still lives and the dreams shall never die." Our prayers and thoughts are with you and your family in this trying moment.

Mr. Brain Tumor Goes to Washington

Unless you've been under a rock, you've heard that Senator Ted Kennedy has been diagnosed with a "malignant glioma." I am saddened, deeply saddened. Such a great man, such a terrible disease. I put his diagnosis in quotes because it's actually quite vague. There are many types of glioma. And that they used the term malignant simply means that it's fast growing (the usual cancer terminology of benign/malignant falls into some grey areas [ha ha ha, catch my pun] when it comes to brain tumors). I speculate that he may actually have GBM- gioblastoma multiforme, the really bad one. It spreads quickly and infiltrates deeply. BTs are not usually solid masses of tumor cells that are easily identifiable. They are so deadly because they grow into tentacles or tiny fingers that reach into the brain, sometimes making complete removal all but impossible. As I understand it, his tumor is in the parietal lobe, housing eloquent brain function. They would do more damage with surgery than good. That's why they're saying he underwent a biopsy, which is not typical with brain tumors. It means they still had to do a full craniotomy to get to the tumor site, survey the extent of tumor (only some of which was discernible through surgery) and take tissue samples to determine pathology of the tumor and how to proceed with treatment. At this point, his best hope is that his tumor is chemo-sensitive (only some BTs respond to chemo) and a combination of chemo and radiation will shrink his tumor, or at least keep it in it's current state for some time.

And FYI, gliomas are a family name that applies to many types of BTs, one of which is oligodendroglioma, the tumor that's been haunting dad for 2o years. Dad's also is considered malignant, but again, they don't really use that terminology. His is grade 2.5 out of 5, based on the World Health Organization's brain tumor classification system.

Happy and comfortable

I'm pleased to report that dad seems to be doing very well these days. He is enjoying slowly unpacking all his boxes in the den/office....each box like a treasure chest for which he takes much time pouring over the old books, records and trinkets within. This is someone who truly appreciates their things. (One of dad's favorite sayings is "I'd rather appreciate things I can not have than have things I can not appreciate.")

He even unearthed a box of me and Jenny's old school projects... pure gold. I'm grateful that he took the time to archive these for us and I look forward to when Ava can look through these and have a good laugh and maybe learn a little bit about what I was like as a little girl.

Otherwise, dad is enjoying relaxing on the back deck and soaking up all the of natural beauty they have been blessed with in their new home and neighborhood. It's a naturalist's dream. So far we've been treated to spectacular nightly firefly shows at dusk, little green lizards that move slowly enough to let you appreciate their vibrant color, cotton tailed bunny rabbits, fiery red cardinals, many varieties of birds, unusually tame squirrels and one large turtle, approximately 12" in diameter according to mom.

Rockwall house tour!

Grandpa Lowell

As the lone male in our family (except of course the addition of Jose and Sony), dad is pretty darn happy about welcoming a baby boy this October. I gave him the good news today and he was very pleased.

The dust has settled from the chaos of the move and all is well in the new DeBok household. Mom and dad are feeling quite comfortable in their new surroundings and their home is really starting to look like their home. Picture show soon to follow...

Here is dad at Tai Chi last week. He's doing great!