My Story

You can read quick bullets listed below, or you can scroll down for a larger context overview. (This is an ongoing draft, thank you for being patient!)

Quick Bullets

How did my blog start?
  • I was headed to Europe in a few days 4/16/10, so I started a blog for my mom/family to follow the adventure
  • The first post just happened to be about my headache, and about the subsequent scan I requested
What are the milestones of your cancer journey?
  • I had a massive, blackout headache while snowshoeing 4/9/10
  • I googled my symptoms
  • I asked for a brain scan 4/12/10
  • The scan showed a massive brain tumor 4/13/10
  • The first doctor wanted a brain surgery within 48 hours to remove the tumor (Wenatchee Medical Center)
  • We asked for a referral to a larger hospital
  • Awake craniotomy was performed at University of Washington 4/27/10
  • Complications required an emergency brain surgery 4/29/10
  • Recurrence was expressed 10/11, although doctors had been watching the tumor grow for a year and said nothing
  • Radiation was recommended 10/11 with no expectation it would extend my life - I declined
  • Was told by UW Hospital that another brain surgery was not an option 10/11
  • Found UCLA's clinical trial, met, and was scheduled for surgery 7/12
  • Was physically assaulted and the brain surgery was pushed back to 10/18/12
  • Full tumor resection by UCLA's Dr Linda Liau 10/18/12
  • Started DC Immunotherapy 1/13
  • Started Chlorotoxin/Venom 8/13
  • Recurrence diagnosed at 10/15 with the recommendation of radiation - no extension of life expectancy - I declined  
  • Brain surgery recommended 5/16 - I declined, hoping to use treatment to halt tumor growth
  • MRI showed tumor growth had slowed, allowing for 3 more months of treatment before surgery 10/16
  • The 1/17 MRI showed three tumor areas, one with a new enhancement
  • My most recent tumor resection was 3/3/17 (which is my husband's birthday - poor guy) at UCLA
  • A new tumor was revealed 11/18
  • We have been tracking the tumor with regular MRIs. 
  • At each MRI since this past surgery (3/3/17) my oncologist has recommended radiation and/or chemo or a clinical trial for a mutation inhibiting drug that would require a 5th brain surgery. I continue to decline those options. 
Who am I today?
  • I am an outspoken patient advocate 
  • An independent thinker
  • A stubborn soul who's easy to find a laugh in every situation, even in the face of a recurrence 
  • A person who is still trying to finding the magic combination of patient and person
What's my main hopes/goals regarding my blog and situation?
  • That patients know their rights and value (either via insurance or out of pocket, we pay the doctors)
  • That patients know that not all doctors have equal knowledge/capabilities/technology
  • Attitude is half the battle. You don't have to be happy all the time, but determination and humor will carry through even the hardest of times
  • I hope that people become more involved in their healthcare 
  • I hope that people share their experiences, so that we can learn from each other 

Contextual Overview

I was diagnosed with a diffuse astrocytoma in April of 2010, in Wenatchee Washington where I was living at the time. The first surgeon told me that I needed to do brain surgery within 48 hours of diagnosis or I might die. Fortunately for me, my boyfriend Danny was uneasy doing a brain surgery at a local small hospital in a rural city. A center that is not known for brain surgeries. When I asked for a referral to a major brain tumor center in Seattle, to deter me, the Wenatchee surgeon said some pretty crazy things like if I flew, I could die of brain swelling. That I shouldn't drive over the mountain pass to Seattle or the pressure in my head could kill me. He also told me that I shouldn't eat garlic because it would thin my blood, again causing more swelling of the brain and death.

We later learned, while we were at the major brain tumor center in Seattle, that all of that was inaccurate. If I would have trusted the first surgeon that I met, I would have died. He did not have the capabilities to do an awake craniotomy, which was necessary for the diffuse nature of my tumor. I also, during the brain surgery, had a blood clot in my brain and a hardening of my dura mater, requiring half of my dura mater to be replaced by pig dura mater. Wenatchee did not have the replacement tissue to undergo that emergent situation. It's scary to think that I almost trusted the first surgeon I met, that I could be dead right now because I trusted a doctor to have my interest at heart, that he was qualified to perform a surgery on me. While in that first meeting in Wenatchee the surgeon, was drooling over the massive tumor in my head. It was sobering, and gross. He never saw me as a human, just as an experiment. Although he is a neurosurgeon by trade, that also includes any type of brain or spine surgery - he is not a brain tumor surgeon. And he was not properly qualified to keep me healthy and safe.

It's hard, because when you get diagnosed, to say it's traumatic is an understatement. And it's not traumatic for just you, it reverberates all throughout the family. It's hard to know what to do, or know who to trust. The fact that we have to be on our toes, and analytical about every treatment choice, every single doctor we encounter, is exhausting, but it's necessary.

I awoke from my back-to-back brain surgeries in Seattle, paralyzed on my right side, with severe aphasia (the inability to communicate verbally or using written words). I didn't know the alphabet, couldn't use more than a single syllable word, people had to dumb down for me, to talk slowly, and I still didn't understand most of what was said. The saddest part is that I lost my humor. I didn't understand jokes or sarcasm. What saved me was my hunger to communicate, and my hunger to do things myself. Needing someone else to wipe your bum is an incredible motivator. Although I couldn't recognize, understand, or process speech, I was able to type my thoughts and feelings on a computer. It wasn't always clear, and it was rarely grammatically correct - still often isn't - but I have persevered because of the joy I get from connecting with others. I could chicken peck with my left finger, and express myself, but I couldn't even read back what I had typed.

Sometimes I still can't believe how far I've come. It's hard to express since the majority of my progress has been silent, off record. I've typed and shared from behind the screen, but people rarely witnessed my progression face-to-face (learning to read, and write, and speak - to walk, jog, then run). That part was endured within my family and friends, with my love Dan, and through the eyes of my speech and physical therapists. It's hard to explain, but I can quantify it. It has been pure joy. It has been real life. It has been hard work, and magic, and miracles. I am an anomaly, an outlier, and I am thankful every waking moment.

I have had doctors and nurses and psychologists tell me that I would not heal. That I would not run. That I would not read. That I would not get better. I have also been told by different doctors and nurses that I could get better, if not just a little bit. If I would have listened to the wrong folks, I might have given up. If I chose the dark over the light, my life would be different.

The first time my brain tumor started growing back, my team of doctors/specialists at University of Washington, told me that radiation was the only option. They said chemo would not help me. Then they said that radiation would not extend my life. I asked for another brain surgery and they said no. It was not an option. I called UCLA to try to get into a clinical trial (one where they use your brain tumor tissue to create a personalized tumor vaccine) and they were willing to give me a second opinion. They disagreed with UW and scheduled me for another brain surgery as part of the trial. When I awoke from that third brain surgery, the neurosurgeon told me that my tumor tissue was too far mixed with healthy brain cells. I was not a viable candidate for the trial. Again another dead end on my journey.

Knowing my diagnosis comes with a death rate of 99%, and having watched the tumor come back so quickly, I knew I had to do something more to save my life. I have since researched, and risked everything to travel to Germany for treatments. I have been injected with engineered viruses, I have snorted treatments, I have sublingually ingested treatments. I have swallowed hundreds of thousands of supplements and off-label drugs. I have combined things. I have worked to boost my immune system, to heal myself. I do all of this, spending almost every dollar we earn on my health as 99% of my treatments are not covered by insurance.

In May of 2016 I received the news that my tumor was growing again and my neurosurgeon at UCLA wanted me to do my fourth brain surgery. Because of the complications I've endured from other brain surgeries, you can understand why I hesitated. I was on several off-label drugs, and about to start a chlorotoxin treatment which I was on for a few years not that long ago. I was able to buy some time, pushing an MRI back to October with the understanding that if symptoms get worse, I would be forced to move up the scan, and endure another craniotomy. In the meantime, I had hoped to stop the tumor growth, or even hoping for a miracle of tumor shrinkage. I've been disappointed that the tumor is so pervasive, so steadfast, but oh well. What are you going to do? Give up? That's boring.

I ended up enduring another brain surgery on March 3rd, which happened to be my husband's birthday. Dr Liau was able to remove the tumor areas, however, a new brain tumor began to grow within 3 months. We have been tracking it with regular MRIs. At each appointment with my oncologist, radiation and/or chemo or a drug trail that would require a 5th brain surgery are recommended, however, I have declined to participate. I am on a few off-label drugs, several supplements, a special diet, and mostly I am recovering from the 4th brain surgery which left me with several neurological deficits. I just want to live my life, spending my time with the love of my life.

I want to live. I want to live like most people want a new car, or a baby, or a vacation, or a new house, or a boyfriend, or wife. I want to breathe this sweet air. To feel the cool breeze. To hug. To laugh. To smile. To ride my bike with the sun on my face.

This is my blog, my place to express myself, to share my knowledge, to work on my aphasia, to live. If I can do anything to help you, please comment below with your email address and I will get back to you. I will delete your comment after I get your email, in order to keep your information private and safe.

This journey has not been easy. I am scared every single day. As my spirit soaks up every minute of this beautiful life, I am just as terrified with each second. I don't sleep well because I never want to miss anything, but when the lights get low, and the world calms, there are few distractions. That's when my heart hurts from the pain I've endured. It's when the uncertainty of survival is loudest.

There are things about this blog that are confusing. I have been told many contradictory things by doctors, nurses, specialists, therapists, books, documentaries, and I have shared as I have evolved. So please do both of us a favor, do your own research. Be true to yourself. Follow your instincts. Don't rely on what I say as fact. It's hard to navigate a brain tumor diagnosis, or any diagnosis for that matter, but I have tried to provide resources that should help. Please check out the tabs at the top for more information.


  1. You are the Salt of the Earth, Jessica. I pray God gives you the miracle you deserve.

  2. Love you and am praying for you Jess. It's not the panic that defines a person, it's how they react after. And I'd say that you've proven your strength 100 times over. Know that you are never alone. There will always be people keeping you in their thoughts.
    Daughter of two late-stage cancer survivors (NHL St 4 and IDC St 3C).

  3. Dr Jordan Axe has testified of the use of Frankincense oil directly on the roof of the mouth with a patient that had brain cancer. If you have not heard of this type of regime I'm sure you could find it online via his website, it certainly is worth checking out if you haven't already done so previously.

    1. You know what, I have heard of rubbing it on your head, or eating it, or as a supplement, but the roof of the mouth is a new concept to me. I just heard about doing it under the tongue like lots of oral liquid administration. Thank you for the tip! Couldn't hurt, and doesn't take a lot of effort or $$$. I appreciate you!

  4. You are an amazing person! I just watched you on "My last days". I will continue to follow your blog. Please keep posting. I will be praying for you! You are such an inspiration. Everyday is a gift and sometimes we get so caught up in life we forget that. Never stop fighting! Much love xoxo

    1. Thank you. You just made my heart swell - you are so kind! Nicole, I'm so pleased to have your support, and love. I appreciate that you took the time to come find me, and comment, and send me strength! Thank you! xoxox

  5. Dear Jess, I'm sure you get so much positive energy from Dan.God Bless you both.

    1. There's no such thing as too much positive energy, that's for sure. And we never know when people need it, so thank you for sending us extra. You didn't have to take the time, so thank you! I really appreciate it. :)

  6. I'm in my last semester of nursing school. Not even sure how I stumbled upon your blog but I appreciate all the information. I love the power of writing thoughts out and have had a few blogs of my own in the past. I can only imagine how hard it must be to write about your treatment here. Sending healing thoughts your way <3

    1. I don't know how you stumbled upon the blog either, but I'm so glad you did! Thank you for commenting! It is very humbling to share my story, and it means a lot when people connect. Thank you for the healing thoughts, and good luck with your final semester at nursing school. I have enormous gratitude and respect for nurses. Thank you for what you're doing! xo

  7. Hi Jessica. Found your blog because my best friend was recently diagnosed with something similar. Your words are an inspiration. Just seeing the dates of the blog - 2010-2016 and counting - was the biggest encouragement yet. Long may it continue.

    1. Nick - I am very sorry about your best friend's diagnosis. And you are amazing for looking into this diagnosis for him! If there is anything I can do to help, please let me know. I realize you didn't ask for any advice, but I hope these thoughts stick with you:

      1. Your friend is not a statistic, regardless of what any doctor may imply.
      2. This doesn't have to be a death sentence, I know many who are far surpassing their life expectancy.
      3. There is so much more than standard of care.
      4. There is no one perfect treatment protocol - every single patient, every tumor pathology is unique.
      5. Get copies of every medical record (pathology, radiology reports, MRI disks, etc.) and file it, it will come in handy at DR appointments.

      I really mean it, if there's anything I can do, I'll do my best to help!

    2. Thank you, Jessica. It is truly heartening that you are so ready to help out and encourage others. My friend is 'taking it very well' as they say, but it's impossible to tell or guess what someone really feels and thinks. We are lucky really in being in Britain, where health care is free - at least he doesn't have to deal with that side of your story.

      Thank you for the offer of advice - it is so very kind and I'm sure one day we'll take you up on it. Sending you very best wishes. :-)

    3. Hope I didn't overstep with those notes. :) Take care, both of you!

  8. Jessica, you are such an inspiration of courage, faith, strength, brilliance! I am with you in spirit and prayer. So happy I happened upon your blog while googling. I, too am a cancer patient, though different kind - recurrent endometrial and am blogging to share, express and help, like you I honor your call for self-advocacy. By listening not to the medical team, but to my own intuition, I changed treatment center/doctors to much greater treatment and success. I have learned to listen to that inner voice always and to acknowledge the divine intelligence within my own body to guide and heal me as well. I am seeing that we all possess powers beyond our imagination to tap into. I know that God is on your side, gifting you now the love and healing you seek. You are in my prayers. With love and light, Kate

  9. I am a high school student that is in the Biomedical pathway researching on cancer.
    I have no words, and I am hoping for you to find a cure. I know you will find a cure regardless, what people say. I am happy that you are still breathing the sweet air, because you are B-R-A-V-E and I love how you haven't given up at all-ever since 2012. Once again, my respects.
    I wish you the VERY BEST for March 2017!

  10. I hope your 4th surgery can produce viable tumor tissue for the DCVax-L immunotherapy. Not sure if that is still an option but with the California right to try law in place, I hope you are able to get the vaccine. Good luck and wishing you the best.

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  12. Hi Jessica, I found your blog while Googling information about my sister's brain tumors. She had two tumors removed from the back of her brain 3 days ago by a neurosurgeon from UCLA. He seems to be wonderful. My sister was able to go home today. No complications, thank God. We have to wait 7-10 days for pathology, so about another week to go. I'm wondering if you have tried cannabis oil while searching for treatments?

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  14. Your story is incredibly inspiring. Thank you for sharing and I hope your courage and singlemindedness will help many others.

  15. Jess, you are such a beautiful human. So caring and loving. I remember you as a pre-teen in my classes. I thought you were amazing then, and continue to appreciate your grace. Darby Hammond

  16. Jessica, I just discovered your blog. I have squamous cell carcinoma tongue cancer, and it's a tough adversary. One of the things that inspired my path to healing was the 9-episode video series, The Truth About Cancer. I highly recommend you purchase it and watch it several times. It's loaded with information about alternative therapies, doctors, clinics, etc. I credit the information with saving my life, and certainly saving me from the devastating and deadly treatments that are being forced on the public in the name of treatment - balderdash! I admire your courage and your determination. It will take all that and more to not only survive but also to thrive as you get well. I am sending you my best intentions for a full recovery. Don't ever give up. Keep your positive attitude and stand for yourself to be whole, well and radically alive!

  17. Hi Jessica! I randomly came across your blog by googling and doing some research. I am scheduled for with Dr. Linda Liau this Tuesday the 23rd for my second surgery. I have a grade 2 mixed oligoastrocytoma in my right frontal lobe. Your honesty, humor and bluntness reminds me of myself. You have had quite the journey and I will from now on be thinking of you and wishing you nothing but happiness, health and to keep up that positive spirit. I just started a website/blog a few days ago as I so badly want to create awareness of brain tumors and do anything I can to support and help and share information with those going through what we are. Check it out whenever you can and I hope to keep in touch and keep each other posted on new treatments to try and especially anything holistic available I am up to try!! After this surgery I will be trying everything I can holistically from cannabis, Keto, budwig protocol, frankincense etc. there is so many options that are good for us either way so its worth a shot!!! Let's make 2018 an amazing year!! XOXO Kelsey

    1. Hi Jessica,
      I know you are going through a difficult time, I just wanted you to know I have been thinking of you ever since I came across your blog this past January. I know its easiest to talk to someone in the same situation and same age. If you ever want to talk please reach out. I went through my 2nd surgery Jan 23rd with Dr. Liau and now on week 4 of Temodar and radiation at UCLA. In conjunction and forever am on everything imaginable and available holistic. I would love to chat if you are feeling ok and up for it. We can and WILL get through this!!!!!!!!! XOXO Kelsey My email is Hope to hear from you soon!!!

  18. Hi Jessica, just found your blog after stumbling across your video on YouTube. You and your husband are such beautiful soulmates, so glad you have each other. Thinking of you both x

  19. I also stumbled across your youtube video and was compelled to send you love and light from England, you and your husband really seemed like kind, brave, beautiful humans inside and out. If anyone can beat this and live a wonderful life you pair can. I really believe that. Sending all the good thoughts, love and luck I can. xx

  20. Dear Jessica, You are working hard right now, with your devoted husband at your side. What an inspiration! I hope you don't mind if I pray for your beautiful self and your sweet Dan to lift the work away. Father God, Creator of the Universe and the One who loves Jessica and Dan so deeply, we live in an imperfect world, and we hate what this imperfect world can do to our physical bodies! Yet you are the Great Healer, the Great Peace Giver, the Great Comforter! I pray that Jessica and Dan feel your presence and that you would place the power of your healing right where she needs it, heal the tumors and that you would strengthen and uphold her with no complications. That your presence would fill their home, and direct the surgeons to perform miraculous surgery, that the therapy she needs and all of these earthly things be guided by your supernatural hand. I pray that you heal her, hold her and transform this entire loving family with your mighty miracles. As Jesus invited us, Come to me all who are weary and burdened and I will give you rest. My yoke is easy and my burden is light. Take this burden away according to your perfect plan I pray in the name of Jesus Christ your Son, Amen.

  21. I wish you all the best, and I hope that you'll live a beautiful and long life full of love and happiness ❤️
    With love, from Sweden.

  22. Hi Jess,

    It's amazing how you're surviving, keep it up and most importantly keep your chin up, if anyone can survive you can considering how tough things have been, and also you've an amazing companion by your side. Unfortunately, one of my childhood friends was not so lucky, he was 16 when he got a terrible headache which paralyzed him from neck down, eventually slipping into coma and death. I still visit his family when I can. It's great you're surviving, brain is one of the most critical organs that really define who we are as an organism, and battling that, hats off to you!

    Take Care!
    -- Hersh

  23. So inspired by your video and story. Wishing you and Dan all the best.

  24. Hi Jessica, inspiring story, I too have been dx with grade II astrocytoma. Unsure how best to proceed really, would love to connect with you!

  25. Dearest Jessica, You have a beautiful soul and you have been blessed to have found Dan who loves you so much. I have always known that our lives are but a moment in time, a blip in eternity. What is important while we are here is that we learn to love well. I truly believe that love is the most powerful force in the Universe and that love never dies. We all only have this very moment to live in that is why it is called "The present" because it truly is a miracle and a present. I pray that you have many more presents in your life filled with love, laughter and hope. Healing energy sent to you from me. Michele

  26. I would love to see an update

  27. Dan and Jessica,

    We are Jon and Dianne Rice. Thank you for your blog, history and "My Last Days" video. While we can't fully grasp or imagine your journey since Jessica's diagnosis, we are grateful for your love for each other, and for taking what is and has been very hard and modeling for your family, friends and viewers something that is both beautiful and very powerful. Thank you for embracing your "greater purpose", as you have stated so well.

    Dianne experienced a brain aneurysm in May 2011. (Links: and video from 2014). After months of intensive care, subsequent complications and a 10-month comma, we began our journey by bringing Dianne home. For reasons God only knows, she is part of a one percentile who survives an aneurysm in this location of the brain. We feel God has given us a greater purpose in this journey.

    Here's some context before asking my question. I would describe Dianne's first three years as hard but powerful. Many of the small incremental steps you describe in your video, we experienced too. We were encouraged by family and friends, Dianne's diligent medical and rehab team, our church family and Dianne's amazing perseverance and will. While Dianne does not walk or talk, has no short-term memory, and requires 100% care, we're blessed in how she responds to people, remembers pre-aneurysm people, places and things; mouths songs she grew-up with, and engages in many forms of therapy. The next three years were defined by a host of renal issues, infections and surgeries to keep Dianne's kidneys and bladder functioning. This was also a trying time made endurable by the love and support of all of the above. The waxing and waning nature of TBI recovery is a roller coaster of progress and setbacks. In the first six years, net gains mostly exceeded intermittent set-backs. The last three years have included stable periods that have allowed me to take Dianne on some road trips and a couple plane trips. What joy we've experienced when taking our wheelchair van beyond our city limits to visit extended family and friends. Through it all, we've experienced God's provision, comfort and strength.

    The past 18-months however, we've been met with a season of physical and cognitive decline. I must confess, my advocacy for Dianne has been both exhausting and discouraging, and our UWMC Neuro-medical team is doing their best, but are understandably running out of solutions. Dianne has recently had a shunt revision to reduce cerebra pressure, and is dealing with increased convulsive seizure events. We accept what is, and are reminded of our need to daily surrender Dianne to God's will and purposes.

    As primary caregiver, I've watched Dianne thrive in seasons of progress, and persevere through set-backs. In this season of decline, my heart is hurting by the fact that I don't know how to make things better (or at least as good as they were 18-months ago), and being content with things such as they are feels like I'm giving up advocating for her. I know it's impossible for you to speak to Dianne's condition, but do either of you have any thoughts or wisdom for me as a caregiver and loving husband facing a loss or lack of progress?

    In closing, hearing your story of love for each other, I am so blessed to have found and listened (multiple times) to you share wisdom from your heart and journey. I can legitimately say I've experienced a version of your grief and joy. We have begun praying for you two and are so grateful to have viewed your story and gleaned from your wisdom. We feel in some way bonded with you in your journey.

    Thank you,
    Jon Rice (and Dianne)
    Camano Island, Washington

  28. Your strength makes me see the trivial as trivial and the wonder of life as wonder ... thank you ... Ita Flynn Sydney Australia


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