Tag Archives: brain surgery

A winter’s day on the farm.

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Hauling myself out of bed, I am met with the roaring sounds of the frigid North winds blowing in. I was dreading going out in that. Almost 5am. I had to get going. We had an appointment at the hospital and had to leave by 845am. Jason’s left eye had a swelling again. Jason had been home from the Neuro-ICU for 11 days.  For the first week back home, swellings, low blood pressure, low oxygen output (anemia), and seizures made for a very stressful week. Thankfully Jason began to do better allowing Jason’s 32 staples to be removed. These staples were in much longer than intended due to the recovery complications. As a result, the staples were not easy to remove. The neuroscience nurse had never met a patient quite like Jason. She remarked that anyone else would have been screaming from the pain. Jason remained quiet and focused. Once again the word ‘STOIC’ was in the room. Over the following days we went to Jason’s favourite computer and music stores so all was looking good, until yesterday…a persistent swelling around his left eye again. Dr.B. said to bring him in.

Fifteen horses were waiting. I was physically exhausted.  Yesterday it had snowed 20cms of wet heavy snow. My body was sore from trudging through it, and from repeated bouts of shovelling trying to keep the snow away from the barns. It was the kind of snow that when you swing your shovel to dump the snow elsewhere, it sticks, doesn’t leave the shovel, and the weight of it almost rips your arm out of your arm pit. I had already done a number on my back over the past few days by lifting soggy wet horse blankets, each one weighing a ton.

Stepping out of the house, the shock of cold air bites my face. I hear the convoy of salt trucks and snow ploughs on the road. The temperature had plummeted overnight to -30C with an added vicious NW wind-chill. Indentations in the snow from horse and human were now frozen solid, making the walking treacherous. Hips, knees, and back insisted on having a bossy conversation with me, not wanting to co-operate on heaving me back up into the tractor cab. I was feeling beaten, completely defeated, wondering how I was going to get through the work that had to be done. Fortunately, I always somehow managed to get it done. Knowing that there was no option; we depended and needed my income, I had to get back into the house before Jason woke up… were the sure catalysts.

By the afternoon we were back home from the hospital. Jason was on a new course of steroids. Weary and tired, we were all relieved to plonk down in the living room. There was no talking, no TV, no music, just the faint humming noise of the fridge and Jason’s steady breathing as he slept on the couch-his inhale and exhale evenly spaced, rhythmic, causing my eyelids to feel heavy. An odd rustle of newspaper came from the other couch as my Mum turned the pages. A quick intake of air from my Mum grabs my attention. A headline had jumped out at her, halting her breath. This day, February 8, was the 25th anniversary of one of the worst train disasters in Canadian history. Twenty-three people were killed in a collision between a freight train and a passenger train near Hinton, Alberta on February 8, 1986. Conor, my Mum’s only son, my only sibling, Jason’s only Uncle, was one of the 23 people killed. Here in the paper was a descriptive article with disturbing pictures and testimonials of the horror that happened in the passenger car that Conor was in. Conor’s train was hit head on at full speed by CN’s westbound train.  On Feb.8, 1986 our lives were traumatically altered and forever changed. The death of my brother is a constant thread that weaves through my life. The shock and devastation is easily accessed from my mind. Walking on the train tracks…coming upon the sight of complete disarray and destruction, the sounds, the smells, forever engraved in my mind. Conor, age 23, was robbed of his life, his bright future of getting his degree, getting married, having children…. My Mum was subjected to the worst shock and trauma imaginable. Now, here is my Mum lying adjacent to her grandson, having flown over from England to be here for his surgery and recovery.

As a distraction, I glance through the window meeting the empty white fields. The unforgiving wind is whipping across, forming a hard icy crust on top of the snow. A desolate feeling washes over me. Gazing back over to Jason, getting lost in his angelic face poking out from under his blankets, his half-shaven head revealing evidence of intrusive entries, I felt powerless. I look over to my Mum lying down on her couch. Newspaper now on the floor. Again powerless. In that moment, I felt like the three of us, in this small lone farmhouse, were fighting all elements. The fierce winds gusting around us, the house creaking from winter’s grip combined with the illness, worry, and grief that was present inside this room, at this moment ,covered me with waves of oppression. Having to live watching your child fight for his right to live is unacceptable. Living life with the horrible images and sadness of my brother dying is unacceptable. Living life seeing my Mum struggle with the overwhelming grief of the loss of her son is unacceptable. Each and every day my task is to master the skill and learn to accept the unacceptable.

Jason wakes up-his face lights up with a smile …”is it ready?” The comforting smell of rice pudding in the slow cooker was wafting in. This was Jason’s favourite-I could never make enough of this for him. Watching Jason enjoy the rice pudding with a keen appetite, and then ask for a second one, gave me great satisfaction knowing he was getting the much needed calories. This feeling brought me back to the present. My other feelings went underground. While chatting and joking with Jason about ‘Nurse Rhodes’ being back on duty, I handed Jason his various pills followed by cleaning his incision, checking for any swelling or redness, checking his temperature and checking his blood pressure. Jason’s wit was in good form as he chatted back to me.

The gift of humour from down the line of Irish and British generations is a godsend. We are all able to have a good laugh at exaggerated scenarios which seem to lighten the scenario we are actually in, even at the most difficult times. It has been our saviour. For me, it has been that, along with a glass of wine at the end of the day. The day I read that ‘a glass of red wine a day is good for the heart’, I was in. Of course, I missed the part where it said a 6oz glass. Most nights I enjoy a glass of wine or maybe two. I look forward to it, the full-bodied taste and the elegance of sipping the wine. My one luxury. I have noticed though,that over the years, my wine glasses have got slightly larger !!!!! A funny thing happened the other night. My Mum came into the kitchen and asked me for a straw which I assumed was for Jason…he likes to drink his Ensure drinks with a straw. I gave her a blue bendable straw that J likes and my Mum picked up the open wine bottle off the kitchen table, stuck the straw in, and drew back. Brilliant!! It was a much needed light moment in amongst all of the turmoil. We had a great laugh over that.

 

 

Jason in the Neuro-ICU

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Dr.B. entered the ICU family room. Mask tiredly hanging around his neck. It was 4.00pm. Eight hours had past. A strange silence hushed over the room. Dr.B.’s voice, “Where’s the Mother?”  From the back of the group in front of him, an apprehensive voice,” I’m right here.”

My phone had stayed silent throughout the day so I was hinging the surgery outcome upon that. I looked into his eyes and face for evidence. Nothing. He looked straight at me and said for everyone to come into the ‘quiet room’. I burst out, “Is Jason all right? Is everything ok?”  He led us into this private room with a couch, a couple of armchairs, a coffee table and lamps dotted about. The pressure sensation in my ears gave me the impression that it was soundproofed. The lamps were all dimly lit projecting a yellowish-amber glow. Everyone filed in behind Dr.B. and claimed their spot. Heart pounding; I thought for sure that something had gone wrong. He wore a serious, neutral expression as he stood in front of us all. Seconds seemed like an eternity. I was bracing myself for what was going to come out of his mouth. Thinking I can’t do this, I heard him say, “Let’s put some light on in here.”  I watched him walk over to the light switch by the door. He flicked it on, “that’s better” he said as the room changed to  brightness. It took me a moment to register what was happening. OMG !  I knew that this was the sign that Jason was ok. Bright lights= good news….Dim lights=bad news.

Jason was in the ICU. It had been a manipulative surgery and had been very tough on Jason. The best news possible was that Dr.B. had held up two fingers in front of Jason and Jason acknowledged them. He could see. The emotion was overwhelming. Jason, Dr.B., and the team did it !! So incredibly happy for Jason, I hope he digested the fact that he could see and that feeling is running through him. We all gasped with relief and so incredibly grateful to this amazing neurosurgeon that once again got Jason safely off the table. After profusely thanking Dr.B., the atmosphere in the room became saturated with celebratory chatter, giddiness, adrenaline. Hugs and shaking of hands filled the room. So much love in that room for Jason.

The next week living in the Neurosurgery ICU was a harrowing time. Horse owners and friends arrived at the barn, once again, to help with the horses and pets. Forever grateful to them.        Jason whisked off for emergency CTs. Speech garbled. Facial nerve damage. Blood transfusion.  Eyes swollen shut. Head swollen. Jason unable to see. Jason too weak to be moved. Not safe to be sedated. Holding onto Jason’s hands, talking him through the procedure, while the resident neurosurgeon, Mohammed, aspirated his head removing CSF fluid. It was a team effort to get this done. Swelling went down. Mohammed was in awe and humbled by Jason’s strength and tolerance of pain and he told Jason that. He said if that was him you would hear him screaming at the other end of the hospital. Mohammed did a brilliant job. Jason eventually could open his eye and see. What a moment…a huge high! Jason’s inner strength and courage was amazing. ‘Stoic’ was a word that followed Jason.

Mohammed told me how moved he was by watching the interaction between mother and son and felt privileged by knowing Jason and being part of it. Mohammed was very soft in his mannerism… deep kind eyes. Standing in Jason’s room, Mohammed shared a little of ‘his story’ with me. Mohammed was sent to Ottawa by the Saudi Arabian government to be trained as a neurosurgeon. When he was a boy in Yemen he would walk miles in the desert with no shoes, carrying his baby brother who had hydrocephalus. He was taking his baby brother to see a neurosurgeon, Dr.LeBlanc, who volunteered in Yemen. He operated out of a tent, just him and one nurse, keeping it as sterile as possible. Yemen being a very poor country didn’t have any doctors that could help Mohammed’s baby brother so this was his only chance. Spending time in this tent, Mohammed knew then, that Neurosurgery was what he wanted to do. His brother had a shunt implanted into his brain and still to this day 25 years later he was still doing well. ‘An amazing surgeon’ said Mohammed. Dr.LeBlanc saw something in Mohammed. Dr.LeBlanc invited Mohammed to come to Saudi Arabia to start his education. Mohammed eventually received a letter of recommendation which was his ticket to come to Canada. Mohammed, not speaking English,  conversed with the staff of the neighboring British Consulate to learn basic English and his ‘ABC’s’, as he put it. If I remember right, Mohammed came to Ottawa in 1995. He showed up at the University of Ottawa with his letter of recommendation in hand and they accepted him. Mohammed came to the Civic in 2005 and now here he is with my son after performing a successful surgery with Dr.B. He told me that this was how he could give back.

I was honoured that he shared this with me and I felt a real connection at that moment to this man. He expressed his immense admiration for Jason and how wonderful it had been meeting Jason’s family. I thanked him for all that he had done for Jason. He was very courteous, expressing how sorry he was about the 7th(facial) nerve but that they weren’t God. I told him that they were close enough to being God in my eyes.

Jason walked back into his home 7 days later.

Jason’s surgery day has arrived.

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I was searching for Dr.B’s face amongst the flurry of activity and energy on the other side of the doors. Identically dressed humans, blue scrubs, caps, and masks, just various heights giving them an individual identity, all walking with a seemingly urgent purpose. Shock waves ran through my body realising that all of this was to do with Jason. I remembered Dr.B. saying that it was best to book Jason’s surgery after the holidays. The A-team will be all refreshed after Christmas vacation and will be at the top of their game. This recollection brought me some comfort. Jason had the best possible chance for a good outcome.

Jason and I waited on the other side of the doors. My eyes dreading the movement of the clock’s minute hand as it got closer to 8am getting Jason closer to entering the OR. Jason lying quietly, IV monitors calmly beeping, his aura bright, his whole being focused on what was ahead. Holding his hand, reassuring him, telling him that everything will be ok, I prayed myself that it will be so. My mind, fighting to win over the insistent urge to vomit, the body to faint, the tears to burst, was applying everything within my power not to show any signs of worry in my face. Stay light. Keep it together.

I knew from my talks with Dr.B. that anything could happen…a bleed out, a stroke, paralysis, permanent damage to speech, vision. The plan was to sneak into the brain and tease the tumours out without the brain knowing, to find the right path sneaking around without triggering alarms. The acoustic neuroma tumour compressing Jason’s brain stem, pressing on the 7th and 8th cranial nerve, was a formidable adversary and fighting it was always a battle.

People sent messages that they would be praying for Jason…all positive vibes and thoughts coming through the channels to Jason. Jason always liked to hear about that and he was genuinely thankful and he felt the support. Over the past few months Jason had started praying, whether in the house or when we were in the truck. He was praying for nothing to happen to his eye. It would stir my heart watching the way he would put his hands together. Carefully, with deep concentration, Jason would line up his hands in a prayer position placing his thumbs up against his chest. Palms were firmly and evenly pressed together, the fingers together straight up with fingertips perfectly level.

Jason had a very keen interest in spiritual meanings and rituals of different cultures ever since he was little. Jason was particularly intrigued about Ancient Egyptian and Native Indian ways. This was now passing onto Catholic religion.

The doors swung open, ‘We are ready for Jason now’. It was like time had stood still and that moment was all there was. I felt like I had dropped through the floor. It was the lead anesthesiologist that we had spoken with earlier that had now returned for Jason, accompanied this time with a couple of OR nurses. He was really nice and gentle with Jason. He had previously explained to me about Jason’s set up, the intra-arterial line in the wrist artery for continuous blood pressure monitoring during the surgery, and a deep IV line “central line” for more detailed monitoring of the cardiovascular system.  I gave Jason a hug and kiss telling him I would see him soon and the rest of the family are waiting downstairs and we will see him when he wakes up.

The double doors were propped open and Jason gave me a final wave as he was wheeled around the corner. Standing there numb with no desire to move, my eyes through the blur recognized a movement in blue. I sensed a familiar stature coming towards me. It is Jason’s vital team member, the man he is depending on, Dr.B.

I walk up to him and firstly exchange in silent language. I then asked him did he have his run this morning. Yes, he had. That’s good said I. I knew this was difficult-could it be that the next time we meet like this, would be to tell me bad news about Jason. I told him that Jason was in the best hands and whatever happens, risks were there for anything to happen/go wrong, that I knew this,and I was ok and aware. I wanted Dr.B. to go in without any ensuing guilt of responsibility if the unexpected happened. I could see the concern in his eyes but he oozed confidence and he was our man. Acknowledging that yes I was carrying my cell phone, I wished him a successful surgery… the doors began to close. Surgery was scheduled from 8am until 3.30pm. Pacing was about to commence.

Three signatures… surgery booked.

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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

Jason’s Ottawa Medical Teams

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We were very fortunate that Jason always had the best of the best…’The A-Teams’. From the Children’s Hospital Neuro-Oncology and Neurosurgery team…. to the Radiation Oncology team at the Ottawa Regional Cancer Clinic….. to the Radiation Therapy team and the Neurosurgery Team at the Ottawa Civic Hospital…. each one of these places becoming like a second home to us. Everyone was in Jason’s corner and made a difficult journey as best as it could possibly be. The combination of the team’s expertise and compassionate approach with Jason was admirable.  Jason felt very secure and at ease with his Doctors, often exposing his infectious sense of humour to them. They all would quickly realize that Jason didn’t come by himself, he came with his Mum! The Doctors accepted and recognized my role and I would become part of the team. I am forever grateful for that.

Jason’s case was very complex. At age 21, Jason was referred to Dr.B’s office..the Chief of Neurosurgery at the time. From the very first meeting, I knew that this brilliant neurosurgeon was Jason’s ticket. Jason also felt the confidence of Dr.B. right away but most importantly Jason ’ liked the guy’. I know that Jason would not have fared as well as he did had he not found Dr.B. and his assistant Sarah.  Jason’s trust and fondness for them both was a huge factor. They became part of our lives over the nine years . I have the utmost respect and regard for these remarkable people.

No award or medal would be worthy enough to acknowledge what Sarah did for us. For me, Sarah was my lifeline. Unbeknownst to her, she was one of the most valued persons in my life.  I told Sarah many times that she was like my angel, always there, offering to help in any way she could. I could not even try to imagine how it would have been had Sarah not been there. There was a mutual respect for one another. Sarah understood that yes, I was first and foremost Jason’s Mum, but I was also Jason’s advocate and I had made it my mission to know as much about NF2 and brain tumours as I could to ensure that Jason had the best treatment possible. Sarah trusted my judgement, would go to bat for me and speak to Dr.B. about my concerns. Sarah was very professional and efficient, always promptly answering my emails about Jason and I never took that for granted as I knew how busy she was. Over the years Sarah remained constant and I was comforted and reassured knowing that Sarah was at the end of my keyboard. It was as if I was alone standing on a stage but right behind the curtain was Sarah and Dr.B. ready to assist when I needed their help. It was such a comfort knowing that they were always there in the background.

Jason had a special relationship with Dr.B. They would joke at times and Dr.B. would call him Jay, which only a small number of people had that privilege. Jason loved it when Dr.B would say “Well Jay, I see you still have the same red-headed mother”. Jason would grin and shake his head playing along.  In a typical appointment, Jason would sit beside me sipping on his diet coke while Dr.B. would be showing me the MRIs on the computer; the tumours proudly showing themselves like illuminated beacons. Jason had all the confidence and faith in the world that these two people in front of him looking at the pictures of his brain would sort it out and let him know if anything was close to his seeing eye.

Jason was always very positive and brave going into the OR. Jason had unconditional trust in Dr.B. Jason knew that this man was on his side and would do everything in his power to help him. Jason would also be at ease and reassured as long as I could stay constantly at his side until the transfer to Dr.B. I was permitted to accompany Jason as far as the other side of the OR doors where Dr.B. and his surgical team would take over. This made all the difference for Jason. I was so thankful for this.

With each additional surgery, risks of morbidity and mortality were raised. There were only so many times you could safely dip in the well and they had to be chosen carefully.The whole approach with Jason was to put out the fires as they happened and to decide at what stage to do this. In Montreal it was said to us “no more surgeries for this kid, he is going to run out of luck.” I greatly appreciated that this was the safe conservative approach and maybe this would be the case for a ‘regular’ patient but this was Jason we were talking about. This would not have been acceptable to him, he had life to live no matter how great the challenge. I am sure there was luck involved at times but Jason had the courage of a lion and it was contagious to all around him.

Jason went on to have four subsequent brain tumours removed by Dr.B.

Dr.B. told me that Jason’s positive attitude going into the surgery was a key part of the outcome; it wasn’t just the skills of the neurosurgeon and team. It was evident to me that Jason and Dr.B had a partnership in the OR, each one relying on the other one. This extraordinary trust Jason placed in Dr.B’s gifted hands enabled Jason to stay in the stream of life and to do the miraculous feat of striding across his graduation stage.

 

Summary of my life altering events

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I am compelled to write Jason’s story. Jason’s constant strength and courage, wonderful dry sense of humour, positive attitude, and a zest for life despite the forces of NF2, is so inspiring and continues to inspire. My story as Jason’s Mum for other Mothers (parents)  struggling with how to get help for your child who is ill with brain tumours and uncontrolled seizures. Receiving a diagnosis of a rare condition called Neurofibromatosis 2. Obtaining an unofficial degree in neuroscience. The difficulty in finding the right medical Drs for your child and the shower of white light that comes about when it happens. Family life. Two younger children to nurture and protect. Staying brave for all your children. Marital strain. Trying to keep the home happy and light. Working. Operating a horse boarding stable . Exhausted. Trauma of walking down a train track in the bitter cold amongst grey desolate woods firstly hearing the hissing of the smoldering wreckage..into my sight is the shocking stack of burning mangled train cars that Conor, my brother, my only sibling horrifically died in. My Mum severely traumatized. Becoming your ill child’s advocate, friend, confidante, caregiver and protector but most importantly a mother. Marriage crumbling. Being at Jason’s side through nine brain surgeries, four full courses of radiation therapy…25 treatments per course. Jason defining stoic. As I write this I can hear the double doors slam shut and on the monitor watching the red line intersect his brain, Jason attached to the machine by a metal frame clamped to his mouth. Bravely enduring the suffocating feeling of the facial mask used to secure the head for stereotactic radiation. His will and determination to get back to college to complete the one year course, that due to brain tumours rearing their ugly heads, took 7 years. To never give up no matter what. The constant pressure on me to keep an upbeat positive exterior no matter what, while inside I am bubbling up with worry, sadness and so much fear. It was my mission to carry the stress and worry for my son and allow him to live as normal a life as possible all the way through, and I am relieved that as much as I know I was able to achieve this. No idea what lay ahead. Two and a half years ago Jason died. At that very moment ‘I’ was no longer. Numbly existing on my bedroom floor curled up tight under the extreme grips of grief. How I got to here from there I am not sure. Worried for my beloved daughters in their extreme sorrow losing their brother. Trying to stay strong for my precious girls. Suffocating. I didn’t know any other life than to care for a child and in the past 10 years of Jason’s life caring for him from morning until night. I knew no other. Amputated..lost.  Closest to insane???? Sent to the edge. Writing.. my fingers wrapped around a pen hearing the scratching mark watching the pen move across the journal page back and forth leaving a mass of words behind…The story of how yoga and meditation threw me a lifeline when I was drowning. With the support of my daughters and a few close friends I joined a housesitting company in order to get far away and exchanged pet/house sitting for a place to stay and arrived in Ireland last Sep. Many beloved 4-legged friends made. I was led to places of such beauty and serenity that touched my soul, from the Wicklow Hills to the forests and lakes of Roscommon, to the Cliffs of Connemara, the beaches of Mayo…  Mindfulness and meditation retreats. Reiki Foundation of Ireland certificate. Teachings of Venerable Panchen Ötrul Rinpoche in Ireland.Teachings of Thich Nhat Hahn at Plum Village, SW France. Such a profound impact on me. Made new friends for life. The places I found myself arriving to were so spiritual and healing… Bude, Woking, Monsegur…felt like a higher power was plotting my course and I was just the passenger. Most days I would write. I could not have made it this far without the therapeutic nurturing healing of restorative yoga. My wish in this new way of living is to be able to pass this on to help anyone in trauma. So much so I received my Restorative Yoga Teaching certificate last year.  I would like to share this nourishing practice. To pass on the coping tools in my toolbox. To offer some healing and compassion in trauma and grief. I am not sure how this will all come about but I know it will present itself when the time is right. Right now I feel and hear the universe telling me write, share, help, inspire, so the journey begins.

 

Introducing Jason Continued.

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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.

Introducing my son Jason

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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…