This Monday, 8/7/17, she met with the neurosurgeon and found out it is in her cerebellum/brainstem and is inoperable. They are recommending radiation and chemo, which is the standard of care. She is waiting to get an appointment with an oncologist.
Needless to say, we are all in shock and trying to figure out what all this means and what our next steps might be. We don't have all the information and as you can imagine, this is a very tender time for Dede. She has a lot of things to consider before making any decisions.
Glioblastoma is a very aggessive brain cancer. For adults treated with concurrent temozolamide and radiation therapy, median survival is about 14.6 months and two-year survival is 30%. However, a 2009 study reported that almost 10% of patients with glioblastoma may live five years or longer.
There are many trials for "reccurent" glioblastoma, but they require this line of treatment first. I have spoken with the folks at Duke Univeristy about the polio protocol, but that is not available for her at this time. I was encouraged by my conversation with the NP at Duke when she said that Dede's oncologist is welcome to consult with Dr Henry Freeman, the neuro oncologist there.
People have been sending us links for other trials. Its a full time job to sort through, make the calls, and summarize the info so that Dede can consider all her options. We are on it.
I, personally, have reached out to my integrative and functional medicine community to hear their thoughts. I'm learning SO much. I'm grateful for the foundation I have in chemistry, physiology and healing. And I beyond grateful for the generosity with which my colleagues are sharing information with me. I'm doing some pretty serious critical thinking.
Here are some of the things we would like to have the option of spending the money on:
Food delivery service, Nutribullet/Ninja, Saladmaster cookware - diet is key to getting and keeping her body strong. $3000 to set up. $200/month ongoing.
Water filtration and structuring system - the quality of water we consume impacts how our cells can use nutrients. $3000
Herbs and supplements - this can run anywhere from $100 per month to $18,000 for a 12 day protocol. There are MANY options to consider.
Nutritional counseling - Cancer treatment is best when the plan is personalized. Intakes alone can run $500. There are two practitioners we would like to consult with. There is lots of evidence pointing toward the Ketogenic Diet. Once we get a plan together we should probably able to budget $300 a month for ongoing consultation.
Labs - Conventional medicine only tests from the perspective of pathology. There is a whole other battery of tests that can be run that, when expertly assessed, can reveal her personal physiology and show us what's working and what's not working. Dede has a history of psoriatic arthritis which means her immune system has been stressed for a long time. These tests will enable us to fine tune her nutritional support. There is also genetic testing that can help guide her treatment. They may or may not be covered by insurance. $3000
Naturopathic Doctor/Acupuncuturist - having a local practitioner of integrated medicine on board will make the conversations with the MDs much more effective. Regular acupuncture can help support the internal organs and help clear inflammation. Its also quite soothing to for the emotions. $400 per month.
Bemer Pro with B.Sit - The enhanced circulation that Bemer provides will help with nutrient delivery to cells, toxin clearing from tissues, reducing discomfort and increasing energy. With my discount... $5300
Computer/ipad/notebook - currently Dede has limited access to the internet with only her phone. She needs to be able to communicate with doctors, family and friends more efficiently and be able to do her own research and outreach to the greater community. $[phone redacted]
Housing - Dede currently lives in a 3rd floor apartment. If she decides to go the radiation/chemo route, she may not be able to get up 2 flights of stairs 5 days a week, due to fatigue. Also, family members would be able to fly in to care for her if that is required, and they would have a place to stay. A quick search leaves me thinking we could find a furnished 3 BR for 1[phone redacted]/month
Travel - Her parents are in North Carolina dealing with their own health issues.
Fun/Bucket List - If you would like to sponsor a fun event or contribute to her bucket list for when Dede has the energy and time to enjoy some of the joys of life during this next chunk of time... She is going to need a break from this thing. Her dream is to go to Sturgis, SD for a bike rally and New Orleans for Mardi Gras.
I know... quite a wish list.
Any amount you can contribute will help. What is required is to raise a good chunck of money FAST so that we can get her body moving in the right direction ASAP and have OPTIONS available immediately.
If you have any expertise in treating this cancer we would so appreciate even a few minutes of your time. Everyday new information is showing up. Its really good to be able to bounce ideas off of people who have more experience at this.
If you have a slightly used laptop sitting around that you could donate, we would be so grateful.
If you are local to Daytona Beach and can cook some "approved" food, that would be amazing.
Dede is going to need support in getting to doctors visits and other appointments. So if you are local and can drive that would be a great resource to know about.
If you have a house or apartment near Daytona Beach for friends and family to come visit we would love to explore that option with you.
Dede has such a big heart and is deeply loved by her family and friends. She is a sister to Debbie, Donna and DJ, an aunt to Max, Nico, Tyler, David, Josh, Jason, Jocylyn and great aunt to Baby Jade (who she hasn't had the chance to meet yet). She is sister-in-law to Karina and Mark and long time roommate to her beloved Richard. Her parents are in North Carolina being cared for by her sister Donna. She wants to see her nieces and nephews get married. Weddings and birthday celebrations are some of her favorite events.
On behalf of my cousin, Dede, her parents and siblings, her beloved network of friends, and extended family, thank you immensely for your assistance in Dede’s care. Your kindness, generosity and prayers mean more than we will ever be able to express.
May the generosity you extend return to you 100 fold.
Debra Gorman, LAc
Santa Rosa, CA
- Laura Erlich
- James Eisenmann
- Prissy DAgostino
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