Kevin has been relatively stable over the past couple of days. On Thursday, we had people from palliative care come over to talk with Kevin and the family. This doesn't mean we've given up on the situation and are only preparing for the worst-case scenario. We still plan on fighting. However, these experts helped us talk through some important issues. Although understandably emotional, the talk went well. We've taken a few measures to make Kevin more comfortable, including anxiety medication and tools to help manage his secretions if his swallowing becomes even more impaired.
I mentioned that we all still want to fight. While we're reaching the bottom of the barrel of "conventional" treatments, we're starting to explore alternative and experimental options. Below is a message from Kathlin, asking about any connections you may have to such options. It was originally going to be an email, so she gives a good synopsis of the history of Kevin's situation. If you have any connections or ideas for less conventional treatment options, please leave a message on the blog or email us at KevinWilliamsBlog@gmail.com. Thank you all for your help, love and support.
Hello Everyone,
My name is Kathlin Ramsdell. My fiancé, Kevin Williams (both Colgate class of 2010), has been fighting a battle against an aggressive brain tumor since last fall. After seeming to respond to therapy, his tumor is now progressing again. He is at home with his family and me in northern California and is very disabled (unable to speak or move much at all). His oncologists have just started him on a different chemotherapy that is supposed to help, but only in the short term. The type of tumor he has is medulloblastoma/PNET and it was never resected (it is in his brainstem where they can't operate). If you need more detailed information about his clinical history in order to help, please let us know.
Kevin and his family want to try nearly anything (experimental drugs, for example) to prolong his life, give him a better quality of life and, ideally, to treat the tumor. Does anyone know or have ties to people in the medical field, pharmaceutical companies, or anyone that may be experimenting with brain tumor or cancer treatments? Compassionate use of a drug or therapy that we could administer at our local hospital or at home would be ideal, but Kevin would also want to participate in a clinical trial if he were eligible. I would greatly appreciate any information or contacts you may have. Kevin wants to fight for as long as possible and we are trying to give him that chance.
Sincerely,
Kathlin Ramsdell
kramsdell@students.colgate.edu
Kevin in the tube
Santa Cruz Chocolate Milkshake Rankings
- 1. Marianne's Ice Cream (Mexican Chocolate shake)
- 2. Marianne's Ice Cream (Chocolate Brownie shake)
- 3. Cold Stone (Dark chocolate ice cream, normal chocolate ice cream, and brownies)
- Marianne's Ice Cream (Chocolate Chocolate-chip Swirl)
- 4. Saturn Cafe (Chocolate ice cream and peanut butter)
- 5. Jack's Burgers
- 6. Betty's Burgers
- 7. Carpo's
- 8. Burger King
- 8. Sno-White Drive In
- 10. Chill Out Cafe (Chocolate, banana and peanut butter—I guess too many flavors for Kevin's taste!)
Shake Stars
- ★★★★1/2 Butterscotch Swirl from Marianne's
- ★★★★1/2 Butter Pecan from Marianne's
- ★★★★☆ Bananas Foster Shake (homemade)
- ★★★★☆ Oatmeal Raisin Cookie Dough Shake from Marianne's
- ★★★★☆ 3AM Truffle from Marrianne's
Palo Alto Chocolate Milkshake Rankings
- 1. "Old Fashioned" Chocolate Shake from Peninsula Creamery
- 2. Chocolate Shake from Häagen-Dazs
- 3. Chocolate Shake from In-N-Out
- 3. Chocolate Shake from Jeffrey's Hamburgers
- 3. Chocolate Shake from Rick's Rather Rich
- 4. Chocolate Shake from Palo Alto Creamery
22 comments:
I used to work in the Pediatric Cancer Center at the University of Arizona (Tucson).
http://www.azcc.arizona.edu/patients/clinic/peds
Please call (the number is on the website). They are a teaching hospital and sometimes do clinical studies.
I will provide them with your information as well.
Love, Lynn
We are sending this e-mail to everyone who may have a link to help you. We are thinking of you and sending our prayers for some good news and helpful information.
Love Toni and Steve
I copied your request into an email and sent it to my friends at the American Cancer Society at the state and national level and asked for them to forward to as many offices as possible.
You are all in my thoughts and prayers.
If anyone would like to contact me, my email is kramsdell@students.colgate.edu. Thank you!
-Kathlin
I will contact the Tug McGraw foundation; tug was a pro baseball player who had a brain tumor. Tug's son, Tim McGraw, the singer, started a foundation. Good luck in your search. Love, Christine
Two organizations come to mind: Cancer Treatment Centers of America, http://www.cancercenter.com/, I believe they do clinical trials. Their oncology hotline is 1-800-931-9299. The Gateway for Cancer research (gatewaycr.org) may be another resource as they fund clinical research and trials 1-888-221-2873 I'll try to get a name of someone at either place who you can speak with as we've worked with Gateway.
Here's another link to the cancer centers in Tucson that handle brain tumors.
http://www.azcc.arizona.edu/patients/clinic/neuro
Please contact them
Lynn
I have sent Kevin's information also to the City of Hope in Glendale, California, but here is their contact information:
http://www.cityofhope.org/about/contact-us/Pages/default.aspx
--Lynn
I grew up with Kevin, not sure if this is going to help in the stage that he is in. But i am a hyperbaric technician in beverly Hills and Malibu CA.. We treat a lot of post cancer patients as well as patients still in the fight.. It is worth looking into, it is definitely not conventional but it has only positive side affects. Hyperbarics is the saturation of oxygen into the body under pressure.. Cancerous cells are known to thrive in a hypoxic state and the increase of oxygen has been able to reduce the rate of growth as well as to in some cases shrink the tumor.. Let me know if i can help i am sure i can cut a deal with my physician and get the TX at a much better cost than normal.. i work at http://malibuhyperbarics.com/home.html
Colin Bryks cjbryks@gmail.com (831) 251-7049
I've sent your information to friends who's son was treated for a different type of cancer at the University of Chicago. They are still very much involved with the Research Teams there; hopefully, they might know of something.
I sent this out to our churches in Berkeley, CA and Washington DC. I also asked for more prayers from 3 other churches. We met a neighbor yesterday who talked to us about curing his kidney tumor with colloidal gold.
I just spoke with my uncle, a neurosurgeon, and he recommended Dr. Mitchell Berger at University of California San Francisco, Department of Neurosurgery and his team as as one of the best in the world.
The National Cancer Institute runs clinical trials all over the United States. You can search for clinical trials by locations to perhaps find one near you. Here is the link to NCI's website:
http://www.cancer.gov/clinicaltrials
Best of luck, I am rooting for all of you.
~Colgate Class of 2009 alumnae
My dad is looking into his connections at Novartis oncology. I sent you an email with more information. I Will let you know when I hear more.
We are hoping to be able to help. Sandy will be contacting the oncologists in her practice at Diablo Valley Oncology to see if they have any suggestions. She will also check with all of her pharma contacts.Besides UCSF, MD Anderson and Sloan-Kettering are 2 other suggestions.
We will pray for strength and recovery for Kevin and all of his family.
Love,
Bob, Sandy, Naomi, and Joshua Goldberg
Lafayette and Kirkwood, CA
You have probably already looked into UCSF, but just in case:
http://neurosurgery.ucsf.edu/index.php/research_BTRC.html
Brain Tumor Research Center
Continuously funded by grants from the National Institutes of Health (NIH) since 1972, the Brain Tumor Research Center (BTRC) at UCSF is internationally recognized as a major research and treatment center for adults and children with tumors of the brain and spinal cord. The basic science laboratories of the BTRC and the Michael Douglas Pediatric BTRC, in collaboration with the Brain Tumor Center's Clinical Neuro-Oncology Program, emphasize translational research into the biology and behavior of brain tumors - research in which scientists and health care clinicians work in partnership to translate laboratory findings into new or improved forms of clinical therapy. Many BTRC researchers are also members of UCSF's Helen Diller Family Comprehensive Cancer Center, a designated National Cancer Institute (NCI) research center.
UCSF launched the new Helen Diller Family Cancer Research Building on June 2, 2009, bringing all cancer research specialists at UCSF together under one roof. Watch the Abc 7 video coverage of the new, world-class facility and its impact on cancer research.
Thinking of you all right now. Jean Manning
My best friend from high school lost his father to brain cancer about four years ago. I will get in touch with him about any help he might be able to provide Kevin.
-sending love from Los Angeles
Tania and I are good friends with the CEO of a company called Clarient – they are specialists at cancer diagnosis and treatment. We have briefed him on Keven's case and he's more than willing to help. Needless to say he has lots of questions, but we will facilitate communications with him. You should expect an e-mail from Tania soon. He is aware of a variety of clinical trials, by the way.
The Woolseys
Jack Burkett had his surgery with Dr. Mitchell Berger at the University of California San Francisco 11 years ago and was estimated to survive after his surgery for only 1 year. Every year he continues to get stronger. Dr. Berger saved Jack's life and would be worth contacting for another opinion if that has not already been done.
I have another idea I will check in to... a connection in La Jolla.
Sending prayers and lots of love,
Kathy
I survived my glioblastoma multiforme in Jan. 06, which luckily was operable. I was also Kevin's soccer coach back when he was 12 or 13. My choice of medication today helps keep me tumor and seizure free, approaching 5 years now. I'm talking about daily cannabis, and in Kevin's shape, I'd be ingesting as much as is possible. You do know that at University of Madrid a Dr. Manual Guzman was able to shrink tumors in lab mice with cannabinoid injections. Call or write, I've got brownies already made and this year's harvest dried and ready to smoke. If nothing else, it will make him feel better.
My contact at Gateway is checking in on their current studies. In addition to calling CTCA at 800-931-9299, she suggested checking this list:
http://clinicaltrials.gov/ct2/results?term=brian+cancer&cond=%22Brain+Tumor%2C+Adult%22
This is the blog of a family friend. It may have some names you may find useful. I do not know if the tumor is identical to Kevins but if nothing else, I hope it helps you know you are not alone.
http://www.prayingfornina.blogspot.com/
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