Kick Whitney's ASS...trocytoma
Donation protected
Over five years ago Whitney was surprised by a brain tumor. Fortunately, she had a very successful surgery, good prognosis and great outlook on the steps moving forward. Three years ago, a routine check-up flagged a regrowth and launched her into a year-long chemo treatment with weekly bloodwork and MRI’s every two months.
Encouraging results after this year of treatment brought a positive, hopeful outlook moving forward and she returned to quarterly monitoring. With these positive results and her newly-earned Master’s degree (MA), she was eager to plan for what was next. That next year, she worked, traveled, volunteered and continued to have clear MRI’s and blood work every three months. This past November, feeling happy and healthy, she went in for her quarterly appointment and received results that shocked everyone.
And here is where things began to get really shitty…
- A new, fast growing tumor appeared unexpectedly and aggressively.
- Whitney had her second brain surgery a week later. A successful surgery but rough recovery - a bedridden Christmas with a lumbar drain redefines coal in your stocking!
- Shortly after leaving the hospital, Whitney was returned to Abbott to start 7 weeks of radiation partnered with chemotherapy.
- While this can wear you down, Whitney approached the end of radiation with a remarkably strong and positive attitude and she lost more hair than energy ;)
- The plan was 2 weeks of rest and recuperation and then an MRI to begin the next phase of treatment, another full year of chemo.
But, things got shittier…
- New pathology and genomic test results determined chemo would no longer be an option for her.
- True to form, Whitney’s tumor is as unique as she is, putting her in a rare category (<1% of brain tumor cases) requiring a more innovative approach to treatment.
Fortunately, Whitney’s medical team is amazing and consulted with extraordinary colleagues around the world. The most promising research is currently in the fields of immunotherapy and personalized vaccine. All consultants agree this combination is the best (and only) option for her. Whitney must receive immunotherapy and have a vaccine designed for her unique brain tumor, a personalized vaccine.
So what does this mean…
- Whitney has rocked the battle with her insurance company and was successful with a Federal appeal requiring her insurer to cover the immunotherapy.
- A port was implanted and Whitney has started receiving this immunotherapy every three weeks at Abbott Northwestern, per her neuro oncologist.
With immunotherapy in place and underway, the challenge is now with the personalized vaccine. This treatment is currently NOT available in the United States. While several institutions in the USA are conducting research that reflects the promising partnership between immunotherapy and personalized vaccines, treatment clinically applicable to Whitney’s situation is not expected to be available here for 3-5 years.
Willkommen in Deutschland…
- The treatment Whitney needs is currently ONLY available in Germany.
- The personalized vaccine is created and administered through a research institution in Tübingen - but the physicians in Germany will work closely with Whitney's medical team here.
- The creation, administration and clinical follow up of the personalized vaccine in Germany is not covered by any insurance, and requires all private payment.
- The first phase of the administration of the vaccine will require a lengthy stay in Germany. Whitney will then be required to travel to Germany every four weeks for additional vaccine injections indefinitely.
- Under current German law, this personalized vaccine can only be administered in Germany.
WHAT WE NEED FROM YOU:
Your continued prayers, encouragement and friendship.
Financial Support $300,000
Testing, analysis and vaccine development in Germany
+Testing and analyzation of Whitney’s tumor and the distinctive mutations
+Development of vaccine specifically for Whitney’s tumor.
Initial phase of treatment in Germany
+Transportation
+Lodging
+Medical care
Monthly treatment in Germany
+Transportation
+Lodging
+Medical care
Continuous clinical follow-up, locally and abroad
+This new treatment plan is scheduled for the next two years but that is simply where Whitney’s current contract ends.
+Treatment will likely continue in both Germany and the USA
We are optimistic that there will continue to be advancements in this cutting-edge research and both treatments and prognoses will continue to improve. Once again, Whitney is at the forefront. While she is who we are thinking about right now, we hope you also recognize that continued research in this trailblazing approach will benefit many other patients in the future. We thank you from the bottom of our hearts.
With love,
The Ulvestad Family
You can provide financial support through GO FUND ME, Zelle (Whitney Ulvestad US BANK), or wire transfer. For a wire transfer, please contact Nancy Ulvestad at [email redacted]
Encouraging results after this year of treatment brought a positive, hopeful outlook moving forward and she returned to quarterly monitoring. With these positive results and her newly-earned Master’s degree (MA), she was eager to plan for what was next. That next year, she worked, traveled, volunteered and continued to have clear MRI’s and blood work every three months. This past November, feeling happy and healthy, she went in for her quarterly appointment and received results that shocked everyone.
And here is where things began to get really shitty…
- A new, fast growing tumor appeared unexpectedly and aggressively.
- Whitney had her second brain surgery a week later. A successful surgery but rough recovery - a bedridden Christmas with a lumbar drain redefines coal in your stocking!
- Shortly after leaving the hospital, Whitney was returned to Abbott to start 7 weeks of radiation partnered with chemotherapy.
- While this can wear you down, Whitney approached the end of radiation with a remarkably strong and positive attitude and she lost more hair than energy ;)
- The plan was 2 weeks of rest and recuperation and then an MRI to begin the next phase of treatment, another full year of chemo.
But, things got shittier…
- New pathology and genomic test results determined chemo would no longer be an option for her.
- True to form, Whitney’s tumor is as unique as she is, putting her in a rare category (<1% of brain tumor cases) requiring a more innovative approach to treatment.
Fortunately, Whitney’s medical team is amazing and consulted with extraordinary colleagues around the world. The most promising research is currently in the fields of immunotherapy and personalized vaccine. All consultants agree this combination is the best (and only) option for her. Whitney must receive immunotherapy and have a vaccine designed for her unique brain tumor, a personalized vaccine.
So what does this mean…
- Whitney has rocked the battle with her insurance company and was successful with a Federal appeal requiring her insurer to cover the immunotherapy.
- A port was implanted and Whitney has started receiving this immunotherapy every three weeks at Abbott Northwestern, per her neuro oncologist.
With immunotherapy in place and underway, the challenge is now with the personalized vaccine. This treatment is currently NOT available in the United States. While several institutions in the USA are conducting research that reflects the promising partnership between immunotherapy and personalized vaccines, treatment clinically applicable to Whitney’s situation is not expected to be available here for 3-5 years.
Willkommen in Deutschland…
- The treatment Whitney needs is currently ONLY available in Germany.
- The personalized vaccine is created and administered through a research institution in Tübingen - but the physicians in Germany will work closely with Whitney's medical team here.
- The creation, administration and clinical follow up of the personalized vaccine in Germany is not covered by any insurance, and requires all private payment.
- The first phase of the administration of the vaccine will require a lengthy stay in Germany. Whitney will then be required to travel to Germany every four weeks for additional vaccine injections indefinitely.
- Under current German law, this personalized vaccine can only be administered in Germany.
WHAT WE NEED FROM YOU:
Your continued prayers, encouragement and friendship.
Financial Support $300,000
Testing, analysis and vaccine development in Germany
+Testing and analyzation of Whitney’s tumor and the distinctive mutations
+Development of vaccine specifically for Whitney’s tumor.
Initial phase of treatment in Germany
+Transportation
+Lodging
+Medical care
Monthly treatment in Germany
+Transportation
+Lodging
+Medical care
Continuous clinical follow-up, locally and abroad
+This new treatment plan is scheduled for the next two years but that is simply where Whitney’s current contract ends.
+Treatment will likely continue in both Germany and the USA
We are optimistic that there will continue to be advancements in this cutting-edge research and both treatments and prognoses will continue to improve. Once again, Whitney is at the forefront. While she is who we are thinking about right now, we hope you also recognize that continued research in this trailblazing approach will benefit many other patients in the future. We thank you from the bottom of our hearts.
With love,
The Ulvestad Family
You can provide financial support through GO FUND ME, Zelle (Whitney Ulvestad US BANK), or wire transfer. For a wire transfer, please contact Nancy Ulvestad at [email redacted]
Organizer and beneficiary
Lauren Ulvestad
Organizer
Shorewood, MN
Whitney Ulvestad
Beneficiary