Jason’s hair started to fall out and his scalp sore. The radiation really took its toll on Jason. Once  completed Jason was very fatigued and his energy level and mood was very low. It was a difficult time. Jason was experiencing fullness in his ear and sometimes the hearing would go temporarily. He would panic. It was a very frightening time. Jason missed a lot of school. I remember trying to do homework with him. I would have to read the words to him because he was so dizzy and nauseous and words were jumping all over the page. Despite feeling so ill Jason managed to keep going on the power of his strength and determination and passed the semester.

The following 10 years were to present the biggest challenges and cruelty yet. Before I go on I know it will be hard to believe unless you knew Jason but despite all of this Jason loved life. Jason always approached his surgeries positively and calmly knowing that as long as his neurosurgeon and I were there this was the answer to getting back into life. To get back to school, to graduate, to get a job. That was his goal. Many times I have thought about what Jason would have accomplished, what he would be doing if NF2 hadn’t made it’s appearance.

At age 20 Jason’s hearing on his left ear started to rapidly decline and he became totally deaf on the left. The tumour was growing and putting pressure on the brain stem and on the balance nerve.  Jason had 25 treatments of stereotactic radiation therapy. Jason started having serious balance issues which robbed Jason of riding his bike that he so loved to do. Jason developed tinnitus(high pitched ringing) in both ears. So stressful..agonizing ..watching this all happen and not a thing I could do but be with him every step of the way.

At age 22 a routine MRI showed a growing tumour around the smelling nerve (the olfactory groove). Jason had brain surgery to remove a malignant meningioma Grade III tumour. I knew then that we were in trouble. Surgery was followed by 25 treatments of conventional radiation therapy. Towards the end of that year an MRI showed 4 spinal tumours. The wrath of NF2.

At age 25 Jason and I went to the Montreal Neurological Hospital for almost a month. Jason was having debilitating dangerous seizures. Jason underwent  two brain surgeries to remove scar tissue from previous surgical sites. This is where the increased seizure activity was coming from. This was effective in reducing the seizures for a couple of years.

At age 27 Jason was having increased headaches, dizziness and seizures. Jason had brain surgery to remove two meningioma tumours. They were Grade I and II.

Jason began having increased pressure in his head, headaches, vomiting, and dizziness. The MRI showed a recurrence. Approaching 29 yrs old Jason underwent brain surgery to remove a regrowth of a meningioma.

Over the next six months vision abnormalities were happening along with increased brain pressure and pain. MRI showed a fast growing tumour invading his orbital cavity of his only seeing eye and as he always said ‘nothing can happen to my eye’ so Jason was up for the surgery no matter the risks. Approaching age 30 Jason underwent brain surgery , two mengiomas were removed, one infiltrating bone(en plaque) and the other lying right above his optic nerve.  Six months later an aggressive inoperable tumour was diagnosed and shortly after claimed his life.

Before I go I want to share an email that I had sent to Jason’s professor at College on Jason’s behalf (he was 27). The reply I received says it all…. to see his spirit and character.

From me(Mum) to professor: My son Jason has asked me to contact you.Jason is very ill today with extreme dizziness and vomiting. Over the past 2 weeks Jason has been attending classes with great perseverance. He has been feeling nauseous and dizzy especially when reading. Jason is battling brain tumours and has an appointment to see his Neurosurgeon. Jason is very worried about the exams that he is missing and was unable to read the material due to the dizziness. Is there any way Jason can write the exams at a later date? Jason has tremendous drive and dedication to go to college and loves Print Media.

From prof. to me:  Yes, Jason had told me he hasn’t been feeling well. I did tell him not to worry about it. We can easily make it up when he is feeling better. Jason is an absolute pleasure to have in class. He works very hard, grasps things well and has made quite an impression on his classmates. He has several people looking out for him all the time, even more than he probably has any idea about. I’ve never seen or had a class that was so supportive. It’s so nice to have such a wonderful group all around. And what a sense of humor. It’s wonderful to see so much silliness and such an outgoing personable nature, especially considering the struggles he has. He’s always so positive, smiling and making jokes. Please let him know that I hope he’s feeling better soon and wish him all the best at his appointment. He really deserves some good news there.