Dustin went in to meet with the Neurosurgeon who performed the biopsy. He met with us and we talked for a while. He repeated the biopsy results. He said in his and his partner’s 20 year practice, they encountered 1,400 patients with glioblastoma in some severity (only about 2 in 100,000 people get this), and Dustin was only the second one in his 20′s. It normally doesn’t strike till your 50′s. That means, Dustin is a rarity even among an already rare disease. If you extrapolate those numbers with the world’s population, that means Dustin is about 1 in 200 with this disease in his age group.
The doctor said they simply could not operate because quite frankly they do not have the technology or experience for something so severe there. It is also fairly close to the brain’s “motor strip” which apparently controls all the body’s movement. If it is too close or touching this, they cannot operate. Some of the more specialized hospitals may be able to map how close it is and avoid it. He listed a few of the top hospitals he’d personally go to if it was him. Johns Hopkins and Duke were two on the list. The nurse then came in and took out the staples and stitches from the biopsy. He cannot fly yet in case any air had gotten in his brain during the biopsy. At a higher altitude, the air could expand and cause a coma or even death. If he gets a CAT scan to make sure there iss no air, he could potentially fly if he had to.
Prior to the doctor appointment, we heard back from Johns Hopkins that they scheduled an appointment to meet him on Thursday! After that appointment, we heard back from Duke that they could see him on Tuesday, the next day. The Director of Neurosurgery at Geisinger, that Rebecca’s mom has been in contact with, got in touch with Duke and helped get us the appointment. It happens to be that his main focus of research is glioblastoma multiforme. He will serve as an independent consultant and help guide Dustin to make the right decision between which hospital to go for for the actual treatment. Dillon overnighted them all the the medical records and images they had. All good news.
That night everyone helped rush to pack up the essentials Dustin and Rebecca would need for their trip to Duke. It would be a 10 hour drive and they had to leave as soon as possible. Dustin’s parents had flown back to York a few days prior. Dillon and Megan would be flying back with baby Michael the next day. Mary, Rebecca’s mom, stayed behind a few days to wrap up loose ends. Dustin has now met with Duke and Johns Hopkins, where they performed additional tests. They are currently awaiting to hear the results and whether or not surgery will be an option.