Attached is a spreadsheet for usage of donation funds. We thought it would help clear up any confusion as to where funds may have been used.
Thank you again for all your support. The past few weeks have been very difficult and it's still surreal that Raisa is gone, but our family will pull through.
Update on slideshow/video: We're about 95% complete and should be posting the slideshow/video of Raisa soon. Just waiting on a few more pictures.
God Bless. Boh Practiti.
Another great video that puts us in tears from Raisa's friends.
I'm sure Raisa smiles down on each and every one of you for everything you have done, and continue to do.
God Bless. Boh Practiti.
I will be putting together a slideshow/movie about Raisa and need to collect all photos possible. I'm sure there are hundreds out there that I don't know even exist.
Anyone that has absolutely 'any' picture that includes Raisa, please share them with me using the following options:
- Email to: GoktasAndy at Gmail.com
- Drop off at our physical address: (email me if you would like this option). I can even scan and give the original back to you.
- Mail them to: PO Box 179 - Hubbard, OR 97032
Take a few minutes to look through your memory sticks, old film, picture albums, your computer, or anywhere else you keep photo files or prints. Any photo would be great. If you only have prints, scan and email them, drop them off at my house, or mail them to me.
Also, when emailing me your photos, please use file names for each picture that includes a short description. (i.e.: Raisa_MtHoodMeadows_2010.jpg or Raisa_Graduation_2007_w-Mom.jpg).
Thank you all for helping me put this together.
As most of you already know, Raisa passed away early this morning. Church will be tomorrow at about 5am (remember to ignore daylight savings time tomorrow morning only) at the brick church.
I'm too numb inside to think of anything else to write right now, so I'll just keep this short.
Thank you all for praying with us, and particularly everyone's donations that helped us keep hope alive, even until the very end.
God Bless. Boh Practiti.
Changing goal to current amount so that it does not mislead new visitors that do not read latest post (In my previous update I indicated that treatment is changing - now that we're back home. Fundraising has been put on hold).
We just wanted to update everyone that Raisa and the family are back home in Oregon.
Raisa requested to come home multiple times on Friday (3/1/13). The main reasoning for this was because of being hospitalized for the 2nd time (feeding tube needs "“ 2nd hospitalization) and overall just wanting to go home and feeling miserable in these types of environments each and every day. Also she would have many nurses/staff in her room throughout the day which was difficult because she needs a calm, quiet area to rest as loud noises and unnecessary talking were too much stimulation and difficult for her.
As a family, we all agreed & honored her wish "“ especially because we also understood & experienced the unfortunate chain of events that lead to this point (increased symptoms, first hospitalization due to dehydration, more increased symptoms, 2nd hospitalization due to malnutrition (from difficulty swallowing/too tired to eat), delays in trying to continue the Burzynski treatment, etc.). At a certain point you must decide to bring her back home as situations become more and more concerning; especially for our community's religious reasons.
After being discharged from the hospital on Friday, we decided to head back to the hotel to collect our belongings to prepare for the flight home. In transit, Raisa began symptoms that I don't really want to describe, but Anastasia (my wife) was holding her and said that she was passing. As Fred urgently pulled over to the side of the highway, we all ran to the back of the van with emotions that you can only imagine. After about 30 seconds, Raisa's pulse returned and we were able to see signs of response. As she grabbed Fred's hand, we all thanked God that she was still fighting and wanted to stay with us. We then rushed to the hotel and made sure to have her lie down and relax before the flight in six hours.
As Raisa rested, we stayed with her and watched her every breath to ensure that she was ok. There were long pauses in between some breaths, which we made sure to remind Raisa in taking those breaths. What we learned is that sitting upright and moving her in and out of a wheel chair (as we carried her) was extremely taxing on her body. We needed to keep her rested as much as possible in order to keep her strength. The plane ride worried us because we were concerned that sitting upright for hours, moving in and out of a wheel chair 5 more times, and finally the trip from PDX to home would be extremely taxing on her body. But to get her home within the next day, we had absolutely no choice but to take that risk.
After delays at the airport (staff seated our family last on a completely full plane "“ due to an arrogant & heartless United Airlines staff member), some turbulence, & a lengthy nonstop 5 hour flight, Raisa arrived safely home and is now resting.
What does mean? It sure as heck doesn't mean we're throwing in the towel; especially because she has regained her ability to swallow after resting and steroid medication while she has been home. We are still discussing treatment options and I'll fill everyone in on a later update on our decision.
If anyone decides to visit, please understand that we will try to organize visits to where we don't overwhelm Raisa with too many visitors at once. If you would like to visit, please call Nicole Toran at 503-798-5839. Raisa also does better in the afternoons so after 2pm is best.
Raisa is able to understand and hear everything, but she is unable to verbally communicate. If you do ask Raisa any questions, please keep them to a basic yes or no answer type questions.
I will continue to keep this donation webpage active so that I am able to provide updates to everyone.
Also, since we are not unable to fully continue the Burzynski treatment (this is because during the first few weeks, we would need to be seen continuously by Burzynski doctors/staff in Houston locally at their clinic "“ this is not possible now that we are home), so we will not require the previous goal/level of fundraising needs anymore. We will combine all funds in the "Fight for Raisa" account, and for any excess funds we will be sure that it will be put to proper use: Meelastina, any new treatments, and especially for little David's college fund. On multiple occasions, he did say, "I want to be a doctor to help mama get better".
Thanks again to everyone with donations, support, and extraordinary help.
God Bless. Boh Practiti.
Yesterday, Raisa's friends put together a video about her.
Here are my comments on Facebook:
I can only say one thing (as I'm trying to hold back my tears)... Kudos... Absolutely commendable. It would be the understatement of the century to say you are just 'great' friends. You are thousand times more than that. God bless each and every one of you for pushing this hard to help Raisa. It's almost impossible to put into words of how great of friends you are to her. Thanks again, and i applaud you for taking the "Fight for Raisa" to a whole new level.
Everyone, please take 3 minutes & 29 seconds to watch this video, and please pass it on.
God Bless. Boh Practiti.
A couple updates:
Raisa began the Burzynski treatment on Friday 2/22/13 and as the weekend approached, we had to privately hire a home health nurse to administer the IV fluids for Saturday & Sunday. To make a long story short, the nurse failed to follow ethics & protocol, and Raisa became severely dehydrated. After hours of dehydration and chemotherapy, she was not able to communicate and was completely unresponsive. Everyone went into a panic, and my Mom & Nicole called 911. Raisa was then rushed to the hospital Saturday evening. They were able to hydrate her and she, for the most part, returned to her baseline neurologically, but unfortunately still is getting progressively weaker each day.
This means Raisa was unable to take the Burzynski treatment while under the hospital's care, all due to one nurse's tardiness and improper administration of an IV. Just to note, this nurse is no longer with the company (Well-Care Home Health Inc.), and they refunded the $750 (one day cost).
Raisa returned back to the hotel on 2/26/13 and continued treatment from where we left off (4 days lost).
Thought I'd provide an update because nearly a week has passed since my last update.
We are still trying to get more fundraising to hit our goal. Current funds have allowed us to purchase consultation, initial deposit, standard treatment, and some initial medications "“ Afinitor & Sprycel (to see what she can tolerate), unfortunately it will be only a matter of time until we run out before completing the month. Hopefully we're able to promote enough fundraising to hit our goal to give Raisa a fighting chance with this costly treatment. I'm open to any ideas, so feel free to share "“ email me at GoktasAndy at gmail .com.
Thanks again for everyone's help in promoting more fundraising, and especially everyone's support.
God Bless. Boh Practiti.
I just wanted to thank Marina, Andrea, Lexie, Melanie, Elena, Zina, Liza, Masha, Fenia, Baba, & aunt Zina for organizing the bake sale yesterday, and especially a big thanks to those of who donated to help our cause. If I left anyone out, thank you as well. The bake sale was able to raise $3,040.73! Job well done.
The "Fight for Raisa" Key Bank account is now at: $4735.73. Overall, we are now at $31,033.73. 58% there!
I also wanted to say Raisa has been reading all of your comments & posts, and I see her motivation increasing each day. I wanted to let all of you know that you are a big part of this and are truly making a difference on how she is able to handle this treatment.
Thanks again to all. God Bless. Boh Practiti.
Our family got together early this morning for the conference call with a bit of fear that they may not accept Raisa based on the level of symptoms, fortunately the doctors recommended a customized Gene Therapy treatment plan, and we gladly accepted.
Fred (husband) also spoke with Dr Neuwalt's staff (OHSU) today and based on the progression, and they suggested putting her on Hospice. Our hearts dropped and after discussing this for about 5 seconds, we agreed that this is absolutely NOT an option. The Burzynski clinic is willing (even with Raisa's current symptoms) to work with us to the furthest extent of their abilities and to give us an opportunity to reverse/stabilize her cancer.
We're not stopping, and will never stop. This is why we are now asking everyone again to continue spreading the word and making contributions. We will do what we can as a family to gain public attention (local news, radio stations, online articles, etc.) allowing us to more easily obtain our goal in the shortest amount of time possible. We want Raisa to start on all mediations within the next few days.
These are the following medications:
This means that our estimate of needing ~$5,000 for buffer was greatly underestimated and would now be ~$38,542.82 instead. This brings our new goal to $53,542.82 just for the medical treatment.
Unfortunately, time has become even more of the essence and this requires a hard push. I know this may seem unobtainable, but we know we can all work together to try and save Raisa's life. Today, Raisa, Mom, Nicole (best friend), & little David passed by a wall of pictures of survivors at the Burzynski clinic and became even more inspired and she said, "I wanna be on that wall." So let's make this happen. Together.
Thanks again everyone, and God Bless. Boh Plactiti
We hit our $20,000 goal! Awesome job everyone.
We now have enough to ensure we have the first phase covered.
I see that some people are still contributing, and I just wanted to let everyone know that these additional funds (beyond $20,000) will be used for treatment beyond the initial month. After treatment results come back in 3 weeks, that is where we will know what monthly cost to expect thereafter because we can then establish a standard monthly treatment for Raisa.
So now we must all pray and hope this month makes the difference.
Raisa has her consultation tomorrow morning at 9:30am CST, and I'm hoping they can start treatment immediately after. I'll keep everyone updated.
God Bless. Boh Practiti.
We created the bank account for those of you who are unable to donate via our http://www.gofundme.com/2311fs
Here is the info:
Financial Institution: Key Bank
Account Name: Fight for Raisa
Account Number: 370851011293
Also, for those of you who already donated to our page, and know someone that this may apply to, please share the above information with them as well.
Fred, Carole, and I dropped off Raisa, Mom, Nicole, and little David at the airport today and they should be arriving in Houston shortly.
Again, thank you all, and we are 75% there! Every donation I see just about brings tears to my eyes - it just shows how many people care and we are beyond grateful.
God Bless. Boh Practiti.
Just an update. Raisa, Mom, Nicole (friend), & little David have scheduled a flight for tomorrow afternoon and are headed to Houston, Texas. An appointment at the Burzynski Clinic is set for Thursday morning.
Donations have been awesome and we are 33% closer to our goal, and hopefully we will have enough for when she begins treatment shortly after Thursday's consultation.
Keep up the good work in spreading the word as we get closer and closer to making this miracle happen.
Thank you all again, and God Bless.
In early July 2011, Raisa began experiencing severe headaches,
nausea, & vomiting. Based on the severity of the symptoms, Raisa and
my Mom (Tanya) repeatedly visited Silverton
Hospital (Oregon). Initially, the doctor
recommended antibiotics (suspected sinus infection) which did not seem to help as the days passed by.
After multiple trips due to symptoms not improving, Tanya persistently
requested a CAT scan to ensure nothing more was going on. Finally doctors
agreed to this.
The doctor returned with results and the first thing he said
was, "You have a brain tumor, and we have an ambulance ready for you to travel
directly to OHSU."
When arriving at OHSU in Portland, Oregon, an MRI was
performed which confirmed mass, location & size, and then we promptly began
planning for surgery. The tumor was located in the right frontal lobe of
the brain and was easily accessible. Dr. Koppa performed the surgery and
when reviewing the post-surgery MRI, he recommended a 2ndsurgery
based on his expert opinion of this tumor appearing to be of an aggressive
nature. We agreed to this second surgery and it was completed a few hours
At this point the mass was sent out for a biopsy to determine
type & grade, and our family prayed for a benign tumor.
Raisa recovered well and was asymptomatic. We
optimistically waited for results of the biopsy.
We met again with Dr. Koppa a few days later, and he revealed
that Raisa had a Grade 4, GBM (Glioblastoma Multiforme) - the worst and most
aggressive and infiltrative brain tumor that a person can get. Our hearts
sunk, and tears then spilled truly for the first time. We discussed few
options we had and based on Dr. Koppas suggestion, he advised that we start
with Radiation therapy, then follow Dr Neuwelt's suggestion of using Temodar
Chemotherapy; which is a first line of defense for Glioblastomas. Dr
Neuwelt is the head of cancer research at OHSU, and was well known.
We agreed and Raisa scheduled herself for Radiation therapy at a nearby
facility shortly after. Raisa underwent radiation treatment for 6 weeks
before starting Temodar.
Just like most people in this situation, the moment we all got
home, we hit the ground running in a desperate attempt to find a
solution. Raisa, Fred (Raisa's husband), Anastasia (Raisa's
sister-in-law), & myself (Andy - Raisa's brother) began collecting books,
articles, and anything else we can get our hands on to find options for a
cure. We decided to do what we can simultaneously alongside Chemotherapy,
but ensuring that it's not conflicting. Of course anything we decided to
do, we ran by Dr Neuwelt's team first to get approval.
1st alternative solution: Regiment stew.
This was a book (Surviving "Terminal" Cancer) written by Ben
Williams, PhD had the same type of brain tumor. This was a story that
outlined supplements that he took at the same time as using Avastin, and 10
years later he was still going strong.
So we assembled the following regiments:
- Coriolus PSP, Maitake Gold 404, Melatonin, RaspberryGold Ellagic
Acid, Borage Oil, Beta Carotene, Nature's Way (Alive!), Ultimate Probiotic,
Note: If you're curious about mg details/doses/sources/details, email me at GoktasAndy at gmail dot com, and I can share our Google drive doc that shows every detail of our research & supplement stew that we assembled.
Only Coriolus PSP was able to be taken at the same time as
Chemotherapy because it did not act as an Antioxidant (conflicts with
chemotherapy), but instead was used as an immunomodulator to boost Raisa's
immune system during chemotherapy, thus helping keep immunity up during chemo
solution: Juice Cleanse
This was from another book (A Cancer Battle Plan) that outlined
a success story of Anne E. Frahm that did a juice cleanse that included:
Grape Fruit, Olive Oil, Carrots, Kyo Green (contains superfoods), apples, &
psyllium husk for Fiber; followed by enemas to extract colon toxin content
My wife (Anastasia) and I tested the juice cleanse with Raisa and
found that it was tough but doable. Enemas are not fun, but are
necessary. This was not something we proceeded with vigorously as Anne
did in the book, but we knew that this was an option down the road (if needed)
based on how far the Regiment stew, healthy eating, & alkaline water
solution: Healthy eating
Just like any healthy diet, stay away from bad unhealthy sugars,
sodas, white bread, white rice, artificial ingredients, non-organic foods, etc.
Technically, we must avoid most of the Western diet.
The diet then began.
solution: Alkaline Water
After additional research, we found that higher pH/Alkaline
water has antioxidant properties that may hinder cancer growth.
My wife (Anastasia - Raisa's sister-in-law) and I decided to
purchase a water ionizer from a local Athena dealer.
From that point forward, we began using alkaline water in our daily intake as a family.
Raisa used Temodar for 1 1/2 years and routine MRIs continuously
came back with no new tumor growths.
New Brain Stem Tumor
After 1 1/2 years of Temodar, Raisa found that she is beginning
to feel numbness in her left cheek & tongue. So Dr Neuwelt ordered an
MRI and finds a new tumor in the Brain stem (the worst possible location for a
brain tumor). He advised us that the cancer is not longer treatable with
Temodar and she is not a surgical candidate due to the location of the
He begun to discuss the next options "“ Blood Brain Barrier
Disruption (BBBD) treatments (which is the protocol study) and the next line of
defense. We agreed and scheduled the new treatment.
At the same time, we introduced the 5th Alternative solution: Raw Food Vegan Diet
It concerned us much more as the abnormal aggressiveness
& increase of the symptoms increased rapidly (tumor growth causing pressure against brain
stem, thus causing neurological symptoms), so we were not simply going to wait
and have standard "commercialized" medicine help us as our 'only' option.
Note: There are NO long term success stories with only traditional treatments (radiation & chemotherapy), but only those of who go above and beyond have a chance and sometimes have successful
So in addition to the BBBD protocol treatment, we decided to add
a bit more on our end by adding a new alternative solution - a Raw Food Vegan
Carole (Raisa's sister-in-law) came in to help. She had done vegan diets in the past and is familiar (discussions with clients of hers)
with the Raw food vegan diet. She was able to address the typical
questions & concerns about protein, calcium, etc. All nutritional details were addressed and clarified.
For added motivation & support, we also watched the
documentary "Forks over Knives".
We also met with Dr Dave Allderdice, a Naturopath Oncologist in Portland, OR,
FABNO certified "“ only 1 of 2 in the entire state of Oregon;
and he adjusted our supplement stew a bit and reviewed our raw vegan diet plan.
In the end, he simply suggested a couple modifications.
So we began our Vegan Raw Food Diet. Smoothies in the
morning and healthy meals for lunch & dinner. Anastasia (my wife)
& Carole (sister-in-law) began thorough research in new recipes to make
vegan raw foods enjoyable.
Blood Brain Barrier Disruption / Chemotherapy
The BBBD treatment was administered 3 days after discovering the
new tumor growth on the brain stem, and within a few days after completing the
BBBD treatment, Raisa's symptoms continue to worsen and get to the point of
impairing her ability to walk, talk, and to fully use her right arm and
Anastasia, Tanya, & Raisa informed Dr Neuwalt's nurse of
Raisa's progressing symptoms to which she ordered Raisa to be put on steroids
(helping with swelling/pressure of the tumor).
3 days later, Raisa deteriorated even further and my
mom (Tanya) contacted my wife (Anastasia - which is a Oncology RN) that Raisa
was having trouble holding water in her mouth and couldn't get out of bed.
As of this day, she was unable to use the walker anymore and needed the
assistance of a wheelchair. Anastasia urged a call to 911 due to the
speed of increased symptoms and severity.
The ambulance arrived and Raisa was transported to OHSU.
The ER doctor was advised by Dr Neuwelt's team to perform anther
MRI one week earlier than scheduled.
We come back the next day and Dr Neuwelt's team advises us that
the brain stem tumor has progressed and increased in size, additionally a new
small tumor was found on her temporal lobe.
Overall, the BBBD treatment didn't seem to be working either,
or at least not having a large impact on treatment. They then advised us
to begin Avastin treatment ASAP.
Unfortunately, because this was not a standard treatment (but it
is FDA approved), it required insurance approval before treatment could be
Thursday, we waited. Friday, we waited. Business were closed on
the weekend, so we decide to head to the beach in Newport,Oregon to let the time pass as we spent time with the family. We all did the best we can to enjoy ourselves, but with symptoms worsening, it was very
difficult to do so. Family time was nice though.
Before Raisa and the ladies were able to leave for the High Tea
lunch reservation, Fred (husband) received a call from OHSU and excitedly
announces that Avastin was approved.
Raisa & Fred rushed straight to OHSU and began treatment that
Then we waited.
Something to note:
All sources tell us that Avastin is not designed for
"treatment", but only as a medicine to decrease symptoms as much as possible,
and inevitably having the unfortunate end result as tumor continues to
We've had many recommendations to the Burzynski clinic in Texas,
but haven't pursued it yet because of the cost. Insurance does not cover
these services. At least most insurances don't cover because it's
considered a "Supplemental treatment".
I contacted the Burzynski clinic in Texas and discussed pricing. Again, no
insurance coverage, and is all out of pocket. $1,500 for
consultation, $13,500 for tests & plan customization which includes 3 weeks
treatment, then the additional costs for additional treatment (based on the treatment designed for Raisa after the consultation). This is why I'm setting a goal of $20,000 to allow a buffer of $5,000 for the additional treatment for the month, along with the 5% GoFundMe fee, additionally the ~3% WePay fee for bank transfer.
This is where you all come in. The Shadrin & Goktas
families are unable to afford this treatment and pray that some generous people
chose to donate and help in finding a solution.
The outline above was simply to help you understand that we all
went above and beyond standard treatment. Alternatives that have had
successful results nonetheless for others. There are many more details
that I can provide, such as the fact that I even spoke with the Mushroom
Science vendor (Coriolus PSP & Maitake Gold 404 manufacture/supplier) in Eugene,Oregon "“ specifically with the engineer that
worked directly with Ben Williams for 10 years, but this letter would be become
Again, we pray for your generosity and hope that we can collect
enough donations for Raisa's treatment. Please understand that your
donations will be used wisely, and accurately as indicated with the plan listed
above. I will also provide routine updates to this page to keep everyone up-to-date on Raisa's progress. Please continue visiting this URL/webpage for new information.
We will not stop fighting until our last moment on this planet,
and even so, we will go down swinging.
Please help us fight, and we plan on defeating cancer that
"thinks" it cannot be stopped. Time is of the essence, and God bless.