All results were in- MRI results and results from the Neuro-Ophthalmology  Clinic at the Ottawa Eye Institute. Jason was very familiar with the Eye Institute and over the past two weeks it had been a revolving door for us with consultations and tests. We were very fortunate to have this world-class facility available to us in our own back yard. At one of the appointments, I noted that his left optic nerve appeared pale and I knew that this meant his blood supply to the nerve was already being compromised. My recurring nightmare of Jason being in the car with me, not hearing/seeing resurfaced in my mind. NF2 was trying its damnedest to make this happen and I was worried sick.

I was dreading Jason having to hear the news that was on its way through the door. In came Dr.B. armed with the reports. No joking about the ‘red-headed mother’ this time. Jason and I both quiet. Anticipation and fear running high. One look at Dr.B’s eyes and I knew which road we were being sent down. My stomach and heart met somewhere in the middle.

Results were not good. Worst feeling ever. There is a recurrence of the previously resected left lesser wing meningioma. A diagnosis of an en plaque meningioma had now been made. This is a carpet-like growing tumour and spreads and can infiltrate bone as in Jason’s case. The recurrence had grown further with extension to the nasal cavity and the orbital cavity. Total removal of this type of tumour is difficult due to its extensive bone and dural (outermost, fibrous membrane covering the brain) involvement. As a result, these tumors have high recurrence rates and normally are followed up by radiation treatments but  Jason by the age of 23 had received his lifetime maximum dosage of cranial radiation, so this option was no longer viable. Diagnosis of optic atrophy had been made by the Neuro-Opthamologist in her report and evidence of vision abnormalities were mentioned. Jason burst out “I don’t want anything to happen to my eye.” It wrenched every cell in my body, seeing the panic in his face. Jason told Dr.B. that he wants an operation, to get these tumours out. Dr.B. said that he knew that Jay was totally on board and ready to go but he needed to explain to Jay about the risks.  I was so grateful by Dr.B’s way of speaking to Jason with this terrifying news. Dr.B. was fond of Jason ‘a trooper’, but he also knew that Jason was very sensitive and easily panicked and that was the key to Jason, not to cause him panic if at all possible. To ease in was the best way to aid Jason. He explained to Jay that the risks increase with each brain surgery and that these are very serious major surgeries. Dr.B. fully acknowledged Jay’s concern about his eye and in a compassionate manner, agreed with Jay that he doesn’t want anything to happen to his eye either. But also he doesn’t want to make things worse for Jay as a result of an operation. A risk to Jason’s speech was a very real possibility and concern, to which Jason bravely replied, “I can get speech therapy.” I could hear my breath gasp. See Dr.B’s eyes widen. Nothing was impossible in Jason’s mind and he wanted this operation. Jason had to understand that while in surgery there was a possible chance that the blood supply to the nerve could get cut off and that he would lose his sight from the operation itself. Anything could happen. Jason asked the question of what happens to my eye if I don’t have an operation. The answer was, if nothing was done.. no surgery at all, then Jason would eventually lose his sight. Not sure when, but probably within a reasonably short time since these tumours were positioned above his optic nerve and third nerve, and they were growing. This was unthinkable, Jason depended on his sight; to stay upright, to help with poor balance, to navigate his way around. Jason was also lip reading due to severe hearing loss. Without sight, Jason would not be able to function. My whole being was in turmoil for Jason.

I couldn’t shelter Jason, couldn’t make things better…such a lack of power and so helpless, the fabricated feeling of wanting to make this all go away was suffocating me. There is nothing worse than watching your children suffer. It evokes every emotion, sensation and nerve in me. Thankfully the non-emotional, logical brain kicked in to save the day and took over; fierce advocate, mother, brain, surgery, life. I jump back into my role.

I could tell that this was a difficult appointment for Dr.B. also. Here was this amazing brave young guy sitting in front of him whose brain he knew well. Jason wanting the pen to sign on the dotted line. Assuming and depending on this man to go into the OR with him to take out the tumours but first and foremost, for nothing to happen to his eye. As Dr.B. was showing me the MRI comparisons Jason was already suiting up for his next battle. There was no discussion as far as Jason was concerned…book the surgery. Jason understood the risks and I would have done the same thing. The risk of surgery was worth the gamble to save his eye, as the alternative was a definite loss of sight. This loss would be instant. It could happen anywhere, anytime. There would be no warning at all. One moment he would see and the next moment his world would be dark. This was not an option.

Pen in hand, we all signed the surgery papers. Surgery was booked for Jan.20, 2011