Jeff's Brain Journey

08/28/2026

Health Update: The Next Step

We want to share an update after our meeting with Jeff’s neurosurgeon.

After reviewing everything, the plan forward is for Jeff to work closely with his neurologist over the next 6 months to a year to manage his symptoms and see how he responds to medication.

The abnormal area in his right frontal lobe believed to be Focal Cortical Dysplasia (FCD) is still something that could potentially be surgically removed. However, his neurosurgeon believes the best approach right now is to give medication and therapeutic treatment a fair opportunity before taking the step toward brain surgery. If his symptoms are not adequately controlled during this window, we will revisit surgery and the possibility of removing the FCD.

For the time being, Jeff will also be returning to work part-time.

While this is a milestone, it doesn't mean everything is back to normal. He has to take things slowly and progressively reintroduce activity and stimulation rather than jumping straight back into the fast-paced environment he was accustomed to. Part of this process will be learning what his brain and body can tolerate and slowly building up his capacity without pushing past his neurological threshold.

Stress management is crucial; increased stress and neurogenic fatigue can lower his threshold and trigger sensory processing sensitivity. This means learning when to push a little and, just as importantly, recognizing when he needs to slow down, rest, and recover.

This is going to require immense patience. Jeff has spent most of his life operating at a high pace, so learning to intentionally slow things down is an adjustment in itself.

In many ways, this news is encouraging because brain surgery doesn't have to be the immediate first step. At the same time, it means this journey won't have a quick resolution. The next 6 to 12 months will be about finding the right balance of medication, neurological therapy, stress management, and gradually rebuilding his daily life.

We are so deeply grateful for everyone who has continued to support our family through this—whether financially, through prayer, checking in, sharing our story, or simply being there. Your support has allowed us to pursue the specialized care and answers we needed to get to this point.

For now, we are taking this one step, one appointment, and one day at a time. Thank you for continuing to walk alongside us.

The Hull Family

Recently, I received the life-changing news that I have a brain tumor. As I begin this jo… Jeff Hull needs your support for Support Jeff’s Brain Tumor Journey

08/08/2026

Update: We Finally Have Some Answers

First, I want to say a heartfelt thank you to everyone who has continued to pray for Jeff, encourage us, and support our family throughout this journey. Every message, donation, and kind word has meant more to us than you know.

After months of endless appointments, testing, and searching for second opinions, we finally have some meaningful progress.

A neurologist has now determined that the abnormal area found in Jeff's right frontal lobe is likely responsible for the neurological episodes and symptoms he has been experiencing. Combined with a review of his MRI by a leading neuroradiologist in Columbia, the findings strongly point toward a congenital brain abnormality—something he has likely had since birth, but has only recently begun causing significant problems.

This brings so much clarity and helps explain so many of the symptoms he has been struggling with, including memory difficulties, sleep disturbances, sensory overstimulation, and nighttime episodes that are continually concerning for us.

What Comes Next
The next step is to meet with Jeff’s neurosurgeon again to review these updated MRI findings and discuss whether surgically removing the affected area could improve his condition and reduce these neurological events. While there are still critical decisions ahead, having a clearer direction brings a renewed sense of hope to our home.

Although there are still unknowns, this is the closest we have been to truly understanding what has been happening to Jeff. Having real answers after so much uncertainty is a massive milestone for our family.

Please continue to keep us in your prayers and thoughts as we meet with the neurosurgical team and determine the best path forward. We are so deeply grateful for each and every one of you who has walked this heavy road alongside us. Your support is what made it possible for us to keep pushing for the specialized care that brought us to this point.

Thank you for believing in us and standing by Jeff.

— The Hull Family

Recently, I received the life-changing news that I have a brain tumor. As I begin this jo… Jeff Hull needs your support for Support Jeff’s Brain Tumor Journey

06/29/2026

Update on Funds Raised So Far

Since February, our GoFundMe has raised $27,000, and we are incredibly grateful for every person who has prayed, donated, shared, encouraged us, and walked alongside us during this season.

We also want to be transparent. The funds raised so far have already gone toward living expenses, medical appointments, imaging, testing, travel, and the many costs that have come with Jeff being unable to work consistently during this time.

Because people have continued asking how they can help, we are increasing the GoFundMe goal to reflect what is still ahead — not what we currently have available.

The funds raised so far have helped cover:

Continued:

Recently, I received the life-changing news that I have a brain tumor. As I begin this jo… Jeff Hull needs your support for Support Jeff’s Brain Tumor Journey

06/22/2026

An Update on Jeff’s Journey: Finding Answers in the Pause

Jeff has been incredibly diligent. For months, he has consistently shown up for his functional neuro-rehabilitation therapy on a weekly basis, pouring his energy into recovery. Unfortunately, we have recently had to face a difficult conclusion: his brain is not responding to the therapy as expected.

What this looks like moving forward is a shift in strategy. We are taking a break from the therapy and leaning back into additional imaging. While his third MRI did not indicate any changes in his brain lesion, we simply cannot rule out that the lesion may still be contributing to his symptoms.

Because of this, we are exploring a new avenue: "Neurotology". This is a highly specific subspecialty of otolaryngology that bridges the gap between the ear and neurology, dealing directly with the complex nerve pathways controlling hearing and balance centered around the inner ear and skull base. Exploring this pathway could mean intricate inner ear surgery, as well as potentially a biopsy of the brain tissue—the very thing we have been trying to avoid at all costs. Brain surgery is not something we take lightly, and we have been fiercely thorough in exploring every other option before taking that path.

Part of the battle we have been facing is just how unique and puzzling Jeff’s case is:

The Clinical Puzzle: He expresses classic symptoms of a glioma, yet the imaging does not support that assessment.
The Specialized Divide: The varied neurologists, neuroradiologists, and neurosurgeons we have consulted do not feel confident the imaging indicates a glioma. On the flip side, the internists, physicians, and specialists we work with do not feel confident that Jeff's case is strictly a neurological disorder.

We have been caught in an exhausting back-and-forth, continuing to look for the right person to help us get answers. This is how we arrived at neurotology. To give you an idea of how rare this specialty is, there are only about 400 board-certified Neurotologists in the entire United States—roughly one per million people.

By an absolute stroke of alignment, two of our current care team providers—who were entirely unrelated to one another prior to Jeff's case—both independently recommended the exact same Neurotologist. The catch? They are located in Louisiana.

As you can imagine, it is quite the trek from Fairbanks, Alaska to Louisiana. Because of the sheer distance and cost, we are currently scheduling as many scans, assessments, and imaging appointments as we can right here in Fairbanks before we commit to traveling south. It is expensive, insurance does not cover this specialized care upfront (though we can fight for reimbursement afterward), and it is a massive trip to take for what could potentially be more unanswered questions.

At the moment, we are sitting in our uncertainty while we navigate the next best step. It is a heavy place to be, but we are learning that sometimes, the answer is found in the pause. Thank you all for continuing to stand by us, think of Jeff, and hold space for our family as we figure this out.

06/17/2026

Summer is in full swing in Fairbanks; outdoor activities, mosquitos and grilling.
Jeff has stepped into the role of soccer coach (don’t worry, Kamalei is helping, since he never played soccer himself) for Koanani’s team as they were without a coach when the season started.
This is a wonderful balance for him to contribute to his community while allowing him to recover as needed. This typically looks like a 1-2 hour nap after practices and games, which are 2 days per week total, as this much information processing is very taxing for his system.
This segues into the fact that we’ve recently come to the realization that with much effort and dedication from Dr Costello, his brain is not adapting and responding to the neuro therapy as expected. Due to this we will need to pivot his care plan.
However, we are staying hopeful that there is an end in sight with a positive outcome.
Thanks for sticking with us through this journey, we appreciate all the encouragement and support we continue to receive.

06/03/2026

Jeff is known to be a social butterfly. These days he has significantly reduced his social engagements, and when he is out and about he’ll be wearing some sort of filtering device (ear plugs, light filtering glasses, a hat, etc).
The video below does a great job of explaining what he has been experiencing since February 2, 2026. We are uncertain if his symptoms are permanent or not. We are hopeful that there are some procedures that could significantly improve how his brain processes information.
June is Brain Injury Awareness Month in Canada - Alaska is close enough so we’re using this month to share what we’ve learned through this process so far.

06/02/2026

An update on Jeff’s journey: recent medical evaluations have provided greater clarity and a clearer path forward.

While the initial focus centered on a potential brain lesion or glioma, recent testing and consultations have further downgraded his potential low-grade glioma, as the right frontal lobe lesion remains unchanged.

Currently, care has focused on the complex interplay of symptoms stemming from a history of multiple traumatic brain injury (TBI).

Diagnostic testing has revealed potential semi-circular inner ear damage, a common but frequently overlooked consequence of TBI. This damage explains several of the persistent, puzzling symptoms that standard neurological frameworks couldn't fully account for.

Current Plan & Next Steps:

Targeted Imaging: High-resolution scans are being scheduled to map the precise areas of inner ear damage.

Surgical Consultation: Once imaging is complete, the focus will shift toward corrective surgical procedure(s) designed to mitigate these specific vestibular symptoms.

Continued Therapy: Jeff remains under specialized care, participating in functional neurological therapy here in Fairbanks alongside upcoming sleep and blood workups.

A Note of Gratitude from the Hull Family:

Your continuous support over the past four months has been invaluable. Because of your generosity, Jeff has been able to access specialized diagnostics, consult with the right regional experts, and receive targeted testing that standard care pathways missed.

Because Jeff is still unable to return to work, the financial strain of ongoing travel, specialized imaging, and everyday expenses remains a significant hurdle. If you feel led to continue sharing Jeff's story, keeping our family in your prayers, or contributing financially toward his recovery, please know that every gesture provides immense relief.

We are finally moving toward definitive answers and a concrete path to healing. Thank you for walking beside us.

— The Hull Family
https://www.gofundme.com/f/support-jeffs-brain-tumor-journey

05/04/2026

A Path Forward & Lessons Learned
We had our telehealth follow-up with the Amen Clinics in Seattle today, and we wanted to share where we are in this process. While we are still waiting on a definitive diagnosis, the appointment provided us with much-needed clarity and a concrete plan for managing Jeff’s day-to-day struggles.

The "Why" Behind the Journey
One of the most significant takeaways from our testing is the potential impact of a head injury Jeff sustained while playing football as a child (about 7/8 years old). It appears this injury may be one of the primary contributors—if not the biggest factor—in his current brain health challenges.
We cannot stress this enough: Never ignore your health. If you or your children ever experience even a slight concussion, please do not take it lightly. The symptoms can look very different in children versus adults, and understanding those differences is crucial. We’ve learned the hard way that these things can have a very long tail.
A Request for Space
As we navigate these next steps, we kindly ask for your continued support and, importantly, your patience. This is an incredibly taxing process for Jeff. We ask that you please give him the space he needs to focus on his health and processing this news as we move through each stage.
Thank you for standing by us. Knowing we have our Fairbanks community (and beyond) behind us makes the road ahead feel much more manageable.
With Gratitude, The Hulls

04/24/2026

We definitely hear you; why can't they just cut this thing out? Yes, that would be the easiest thing - cut it out and then we can move on. However, we don't know for certain that procedure will fix everything, and we don't want to cut into Jeff's skull unnecessarily. Especially if it won't "solve" the problem.
This has been a sobering reminder that "shaking it off" back then can have real consequences decades later.

What we would like to share with you are resources:
- cdc.gov/heads-up How to recognize symptoms (which can differ by age), helmet safety, and step-by-step recovery guides for parents, coaches, and adults. The gold standard for clear, actionable info; "Return to Play" and "Return to Learn" protocols
- https://biausa.org/ Personal stories, long-term support, and resources specifically for caregivers and adults dealing with the "invisible" side effects of brain trauma.
- https://www.concussionalliance.org/ Nutrition for brain healing, the importance of sleep (and when not to wake a sleeping patient), and the risks of "thinning the blood" with certain pain meds shortly after an injury.
- https://pediatrictraumasociety.org/resources/concussion-guidelines.cgi Specifically for parents dealing with youth football or school sports, these guidelines provide the "Management of Acute Symptoms Algorithm." Understanding that children often require longer recovery times than adults and how to coordinate with schools for academic accommodations during recovery.

The PTS is a professional organization for all healthcare providers interested in improving outcomes for injured children through development of optimal care guidelines, education, research and advocacy. PTS is the product of the collaborative vision of many pediatric trauma healthcare providers fro...