We have our magical f-DOPA PET scan scheduled, and possibly the best part (other than the enhanced results) is that insurance appears to be covering it!
Our scan is on June 9th, at UCLA Medical Center. The results will be on Monday, June 13th.
Ha! Makes me laugh every single time.
I bounce from terrified, numb, then a little ambivalent, and finally total denial. That's when I get my good workouts in, though, during the denial phases - so there's always a silver lining.
Also, you can't beat an excuse to spend time in Southern California! Time with family friends, and ocean breezes. We'll have three full days to relax, and visit, and laugh, and get our toes in the sand. Once the scan is done, it's just waiting for results from there, and there's nothing you can do about that. Might as well enjoy!
Start Now, The Creativity Journal by Kate Neckel
I haven't convinced myself that the tumor has been growing again, even though that's the most probable reality. I have only a few remote ideas about what I will do if I need to revisit my treatment choices, to reevaluate and add more, or overhaul everything. I have no idea what we will do. We're working on a multitude of choices, kind of like a triage, what is easy to add, what can we afford to add, what have we not looked into, what would be synergistic. I've been doing a lot of research, so please forgive me for the lack of communication on my end. If you have an emergency, please put it in the subject of your emails so that I can address it more timely. Otherwise, I'm going to keep chugging along, nose to the grindstone and all that. Thank you for your patience!
I have never met a Canadian that I didn't like. In fact, all of the Canadians that I know are absolutely superb. I adore them. With that being said (even though, essentially, it's irrelevant), a close friend of my buddy Stephen (Astrocytoma Options) just forwarded me an email. It's a letter from a desperate husband to save his wife, the mother of their three young children, from a newly diagnosed aggressive brain tumor. I realize that many of my readers are fighting their own cancer battles, or they are family members who are the support system, but if you are so inclined, and capable of donating, the information is below (I will copy and paste the letter). There are so many who are fighting their own battles, so of course, there is no pressure here. I just want to spread the word and help out in any way that I can. You guys know how much I advocate going for the best medical care - even if you have to travel. That by driving the demand we support cutting edge treatments that will become more accessible for everyone, and that's a very powerful thing. To support pioneers in treatment is a win for all brain tumor fighters, current and future. So whether you can donate, or just help out by sharing their story (I think there's a way at the bottom of this post to share on other media sites), I appreciate the help very, very much. At the end of the letter is a video of Sunday, the wife and mother. She's a singer/songwriter. Let's keep her singing!
We need to get to UCLA
I can hardly believe that I am writing
this letter, but I am. It the hardest letter I've ever had to write in my
life.On Wed. Dec 31st, Sunday was
diagnosed with a brain tumor.On Thurs.
they sent us to Victoria General Hospital where we met with Neurosurgeon, Dr.
Evan Frangou, to talk about removing the tumor.On Fri., they ran a few more tests, did an MRI and again we met with Dr.
Frangou.He let us know that without a
tissue sample there was no definitive answers as to what kind of tumor it is,
but based on test results there is a high probability that she has a high grade
Gleoma, a fast growing, aggressive form of brain cancer otherwise known as
Gleoblastoma.There are very limited
resources in Canada for treating such tumors.It can be removed, hit with radiation and high levels of chemo, but this
is not a cure.So it's just a matter of
time before more tumors grow.
Upon learning about her diagnoses, Sunday
contacted our friend Stephen Western, a patient advocate, and an incredible
researcher of brain tumors and the advancements of curing these types of
cancers.He has an incredible website
http://astrocytomaoptions.com/ with lots of information on these types of
tumors and treatments that are being studied.(Please take a look at his sight and make a donation to help further his
research.)He informed us about a
clinical study being done at UCLA under the direction of world renowned
neurosurgeon Dr. Linda Liau, M.D., Ph.D., Professor and Vice Chair of
Neurosurgery, and Director of UCLA Brain Tumor Program.This clinical study is on Dendritic Cell
Vaccine.In other words, taking some of
Sundays blood and training her DC cells to destroy tumor cells and re-injecting
her with that blood whereby eliminating all Glioblastoma cells. This study is
being done at the UCLA Department of Neurosurgery and David Geffen School of
Medicine at UCLA.Using this technology,
they have been finding incredible results killing all Glioblastoma cells having
no tumors return.
To qualify for this study the protocol
requires us to have the tumor removed by Dr. Liau at the UCLA Medical
Center.We have to pay for this part
ourselves, then every other cost is covered by the clinical study.
This is why I am writing the letter.I am asking for everyone and anyones help to
get us to UCLA.We need to raise funds
to help pay for the cost of surgery, anesthesiologist, pre and post op care and
hospital fees.Right now our goal is to
raise $300,000 by the end of this weekend.Everything is happening so quickly so I am waiting to get a estimate
from Dr. Liau but I believe this will help cover most cost if not all of a
procedure of this magnitude.Because of
the kind of tumor, the size and the location, we don't have time to waste, we
have to act quickly.If we can have the
funds together by Monday, January 5th, we can get ourselves enrolled and down
to UCLA by the end of this next week.If
you have money or anyone that you know has money I am asking for substantial
donations to be made for Sundays care.This is my wife's life and the momma or our 3 children, so I am not
afraid to ask.Please help us in any way
that you can.
Know that any contributions made will
help save Sundays life and contribute to saving hundreds more, as it will help
in the advancement of this kind of ground breaking technology, Dendritic Cell
Vaccine, Immunotherapy.
