(If you haven’t read Jack’s history & how we got to the tumor diagnosis - click the button above)

life post brain surgery & next steps…

Jack’s surgery was February 15th, 2023 and he recovered at Hopkins until he was discharged on February 25th.

In those ten days, we watched him get stronger & prayed while awaiting pathology results.
We talked at length to his doctors & hoped for a “good” pathology report.
With brain tumors, we were taught what devastating news would be…and we tried to remain optimistic.

We mentioned in Jack’s story about Dr. Cohen - but click the link above to learn more about this amazing man. In those 10 days at the hospital, we saw him and his team every single morning. He answered every question & made us laugh even in the hardest of times.

a lesson in brain science

  • Jack’s Tumor Location - Brainstem (Medulla Oblongata)

  • Jack’s Tumor Type - Ganglioglioma

  • Jack’s Mutation - BRAF V600e

  • Jacks’ WHO Grade - cannot be confirmed, but they believe 1

When we were awaiting results, we started to understand the process of what Jack’s tumor COULD be. The doctors would discuss location, symptoms, size, and “enhancement” on the imaging.

Big Al showed us a video of Jack’s surgery that he presented to the Hopkins tumor board. Some might not want to see this, but we did. Being afraid at this point would get us nowhere - we needed to be educated.

The tumor was gray, jelly-like not completely vascular as some brain tumors can be. He showed us that tumor tissue was similar to brainstem tissue & this observation led him to believe the tumor had been there growing slowly for quite sometime.
He eluded to us that his theory was a low grade glioma.

Following this discussion, we met his oncologist, Dr. Ken Cohen - and he agreed with Big Al, that in his experience, the location of Jack’s tumor alone (medulla) would be low-grade.

He continued to say that he was 99% positive that Jack’s tumor would be treatable & Jack would die of old age - not this tumor.

That next week we received good news - Jack’s tumor is a low grade ganglioglioma. And his tumor tested positive for a mutation that has a “designer drug” - therefore, a targeted therapy option was available.

Brainstem Functions (Specific to the Medulla Oblongata)

  • Central Regulation of Cardiac, Respiratory and Vasomotor Centers (controls dilation or constriction of blood vessels)

  • Autonomic Functions of Breathing, Heart Rate, Blood Pressure, and Sleep-Wake Cycle

  • The Body’s Command Center

  • Really DAMN important…

In the image of the brain with cranial nerves labeled, you can see that the Cranial Nerve 10 is the closest to the Medulla.
This is the nerve that was compromised due to Jack’s tumor.

Cranial Nerve 10 is also called the Vagus Nerve.
This nerve controls the capacity to gag, and when compromised creates a hoarse and nasally voice.
And also, will cause the vocal chord to be immobile.

  • In Jack’s case, we noticed his voice change in late 2021.

  • He began getting URI’s and chronic wet cough in 2022.

  • All while his sleep continued to worsen & his respiratory challenges began.

This was Jack’s tumor in June 2023.
One month into treatment, it remained stable from prior scans.

This was Jack’s tumor in September 2023.
5 months into treatment, the tumor has shrunk.

Dr. Cohen explains pediatric brain tumors, signs, symptoms, care team, tumor boards, surgery and more…