Today we had our consultation with Gabe’s neuro-oncologist, Dr. Piccioni at UCSD, to go over his pathology results and establish a plan for treatment. While we got some answers, there are still many unknowns in Gabe’s prognosis and actual diagnosis which is incredibly frustrating. Based on everything we heard today, it sounds like this is most likely glioblastoma.

Diagnosis & Pathology Details

• Pathology: Confirmed as a high grade infiltrating multi-foci diffuse glioma but there are unusual features making it hard to pinpoint his exact diagnosis. They are doing further molecular testing and they expect to have more information in about a month.

Key Markers

• IDH Status - initially this is coming back as IDH wildtype. There is still a small chance it comes back as IDH mutant, which is the result we were hoping for.
• MGMT methylation results - this indicates the likelihood of chemo efficacy, with methylated meaning higher efficacy. This is not black/white but a spectrum; Gabe slightly leans toward the unmethylated side. We are still hopeful he will respond well to chemo.

Surgery

• We reviewed the various spots across his brain that have tumors. The most concerning tumor is on the corpus callosum which connects both sides of the brain. Due to the location of these tumors, this was confirmed as inoperable.

Treatment Timeline

• Daily radiation paired with oral chemo taken at night for six weeks.
• A month break to recover.
• Monthly chemo cycles (likely a week on, three weeks off).
• Once we have more information on the molecular subtyping we are going to explore which clinical trials make the most sense for Gabe.

Immediate next steps

• CT Mapping scheduled for tomorrow at 7am (to be fitted for radiation mask)
• Another MRI scheduled for tomorrow at 5pm (to get a more accurate picture of Gabe’s brain as his last MRI was on 8.14).
• Gabe gets to lower his dose of steroids (dexamethasone) - this is a huge relief since he’s hating the side effects.
• We have second opinion calls scheduled with UCSF neurosurgery and UCLA neuro-oncology over the next few weeks. We spoke with Duke last week who also confirmed this is inoperable.

We have felt so much support from our friends, family, colleagues, and beyond. There aren't enough words to express my gratitude. Thank you.

-Rebecca

From Gabe

Life’s short - be tall

“Every day is better physically. I can take the dog on a walk without stopping for breaks now. I have started to do light workouts at our gym (embarrassingly light). This has been very uplifting and getting out of the house helps clear my mind. I’m still on a heavy dose of steroids for my brain swelling which has caused me horrible side effects (always hungry but bloated and lost taste/smell, always tired but have insomnia, extreme brain fog, testosterone and cortisol basically as 0). Today I get to start weaning off the steroids so hopefully that quickly helps with mental clarity and hopefully reduce the side effects- which is a big win for the day.

Today’s oncology visit was pretty devastating. Essentially did not receive any of the news we were hoping to hear. Still playing with the shitty hand that was dealt. All I can do is take it day by day and lean into the cliche’s. Every single day is a gift.

Please continue to keep our family in your thoughts and prayers. We have a challenging road ahead but we’re ready to fight.”

Radiation Oncologist Appointment - August 27th

• We met with Dr Hattangadi-Gluth, Gabe’s radiation oncologist. She reconfirmed that this is considered ‘high-grade’ and they are concerned about it being Grade 4. This is considered a multifocal and diffuse tumor - there is no main site of origin but instead it’s present in multiple spots on the brain.
• They still don’t know what kind of glioma this is; hopefully we know more during our Sept 3rd appointment with his oncologist Dr. Piccioni. We also hope to know more about the molecular makeup of this tumor which will give us more information about treatment efficacy and clinical trial eligibility.
• In terms of supplemental treatment - Dr Hattangadi said to keep his energy up, eat whatever diet he wants, but limit other supplements, specifically vitamin A, C and E. Taking a regular multivitamin is fine, but we do not want to muddy the waters with other supplements right now. Fresh fruit, juices, smoothies etc are good.
• We will meet with Dr Hattangadi once/week and Gabe will also get bloodwork done once/week.

Next steps

• CT “brain mapping session” to be fitted for radiation mask.
• Another brain MRI ASAP
• Radiation to start in another week or so - this will be 5 days/week for 6-7 weeks. The appointments themselves will only be 15-20 minutes. We are optimistic that Gabe will tolerate this well - he is young and otherwise very healthy!
• Meeting with Dr Piccioni (neuro oncologist) on September 3rd. Likely starting oral chemo soon afterwards.

June through August 3rd

On the surface, it feels like this all began on June 26th; Gabe got a terrible migraine when we were out as a family at a local park. However looking back, this may have started before then. Although he has a history of migraines, he was having more frequent migraines (especially while golfing), which we attributed to dehydration or the sun bothering his eyes. After the June 26th migraine event which landed him in the ER, he started waking up in the middle of the night with very bad headaches.

We thought these were caused by a variety of things: his sleep apnea, our pillows (we ordered over $500 worth of new pillows in the last few months), a kinked neck, cervicogenic headaches, etc. The pain slowly got worse; it started to become severe during the day and he had to take more time off of work. We tried to see a neurologist but there was nothing available for a month. He got acupuncture and went to a chiropractor. He saw his primary care doctor who prescribed Cymbalta for cervicogenic headaches and ordered a neck MRI on July 31st.

On August 3rd he went to the ER again; they didn’t do any scans, but instead looked at his neck MRI and told us that the headaches were due to mild spinal stenosis, a condition where narrowing backbones increase pressure on the spinal cord and nerves. They gave him a migraine cocktail and then sent him home.

Hospital Admission: August 7th through August 21st

On August 7th, Gabe woke up feeling terrible and went to the ER that morning via ambulance. I followed a few hours later and he was in the hallway of the ER, vomiting and writhing in pain. Shortly later he was admitted; what followed was 24 hours of horrible pain that couldn’t be controlled by anything. Finally on August 8th the neurologists came by and called a brain code - his pupils were uneven, he had a disconjugate gaze, and he was losing consciousness. This was incredibly terrifying. He was taken for another urgent CT scan and admitted into the ICU.

The ICU doctor told me that he had severe brain swelling and early herniation - the brain was pushing out of his skull in two different places. The medication they gave him helped bring the swelling down, but the doctors still had no idea what was causing this swelling. What followed were two incredibly stressful weeks in the ICU. The doctors thought this could be caused by a multitude of things: viral, bacterial, autoimmune, even a brain amoeba. They treated him for everything under the sun, but nothing was helping bring the swelling down. Test after test came back negative; Gabe endured multiple CT scans, MRIs, two lumbar punctures.

Ultimately they needed to perform a brain biopsy. On August 18th they performed the biopsy. They told us on August 19th that this was cancerous, and on August 21st they confirmed that this is a high grade diffuse infiltrating glioma. We were discharged that day.

Gabe back home for the week - August 21 through today

Every day home has been better. Gabe could barely walk after being bed ridden in the ICU for two straight weeks getting pumped with every drug under the sun. He also lost almost 15 lbs (all muscle according to him, haha). Each day he makes it a little further on dog walks without needing a break, so his strength is slowly returning! The harder part is the lasting TBI symptoms that have resulted in extreme brain fog, but this should improve slowly as well.

Gabe’s friends and family have shown up in an incredible way. We’ve had visitors and people helping every single day with meals, childcare, etc. This has been a great distraction and has allowed Gabe to have some fun. THANK YOU.