To introduce you to Jason… to get a feel of Jason…. here is a condensed summary that will give you a peek into Jason’s life.

Jason entered the world of Neurosurgery at age 4. Up until then Jason’s only other stay in hospital was when he was born, a healthy beautiful baby boy. The world became a better place that day.

At 4 yrs old Jason had surgery to remove a Meningioma brain tumour.This tumour was growing around the third optic nerve.The nerve had to be severed to remove the tumour and as a result Jason lost the sight and use of his right eye. Jason now had complete third nerve palsy- a totally closed eyelid, no eye movement up or down, pupil very large and painfully sensitive to light.

At age 5 Jason had eye surgery to try to realign the pupil which was now placed outward.

At age 8 the tumour reappeared in the cavernous sinus and was inoperable. Jason was treated with 25 treatments of conventional cranial radiation which halted the growth.

About 2 years after the radiation treatments were completed Jason developed partial complex seizures from the frontal lobe. These seizures were very physical, dangerous to Jason as he had no awareness. Jason immediately was put on a medication called Tegretol which made him very moody and short-tempered .The Drs switched the medication to another drug called Dilantin that was more agreeable but made him tired. Meanwhile, this was playing havoc on his body combined with going through puberty.It was very tricky to get the right amount in his body that would stop the seizures but wouldn’t make him so nauseous and dizzy making it hard for Jason to function. This was a battle for years to get the right dosage while he was growing. Jason had an overdose through this time and passed out in the bath. It was a very dramatic emotional time.  Jason was having MRIs every six months and then yearly.

At age 15 Jason went in for a routine follow up appointment and we were told the MRI showed two new brain tumours. Jason now had bilateral acoustic neuromas(a tumour on the right and left hearing nerve) and was diagnosed with the disease Neurofibromatosis 2(abbreviated NF2). Leaving the hospital with this foreign word written down on the back of a piece of pink message paper, I typed this into my computer and dove into the world of Neurofibromatosis 2. This disease is a rare genetic disease which produces tumours that attack the cranial nerves. Fifty percent of all NF2 cases are spontaneous and after genetic testing this was the case with Jason. The bilateral acoustic neuromas are the hallmark of NF2. Tumours can show up anywhere in the brain, brain stem, and on the spine. Jason and I were in complete shock when we were told this as we were expecting the usual ‘no changes’ as this is what had happened since age 9. The family was numb for days and poor Jason was in a daze and unable to concentrate at school. I just wanted to wrap him up in cotton wool and take him away from all of this but I had to make him keep his routine, getting up at 6.30am and catching the bus for a day at school. Jason was told there was a good chance of losing his hearing. Jason was so distressed knowing there were tumours in his head,  like ticking time bombs threatening to rob his hearing at any time .Treatment options were discussed with many doctors.Surgery was not an option so radiation seemed the way to go.Because this disease is so rare in young people it was very difficult to find success rates of different treatments.Gamma radiation was recommended by some but was not possible because OHIP would not pay for it and the treatment costs were $50,000 US for each tumour. I took Jason to Doctors in Toronto and sent his file to top neurosurgeons in the States for their opinions.Stereotactic radiosurgery was finally decided and was done at the Cancer Clinic here in Ottawa. This was the most difficult decision I have ever made in my life.The plan was to treat the tumour on the right side and see how it responds.The left one will be treated at a later date. Jason went to the Cancer Clinic everyday Monday-Friday for 25 treatments. I picked him up from school each day at 12.30pm and we drove the 40 minute trip to the clinic and got home around 5.30pm. These were really long days for Jason and especially during the latter half of the treatments Jason would sleep in the waiting room awaiting his turn.It was so sad to see my teenage son lying there amidst mostly seniors.Throughout this whole ordeal Jason never complained or got angry or upset.He was a real trooper and the nurses were so humbled by his bravery.

To be continued…