Tag Archives: seizures

No further surgery for Jason.

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This day is here. Keep it together, keep calm, be strong. Feeling rough. Restless nights. Intestines keep complaining about their rather abrupt cleansing. Siobhan is coming to stay with Jason. Jason does not know that I am going to see Dr.B. I told him that I have an appointment for a check-up with my Doctor. This was one place that Jason did not ask to come with me, this, the dentist and the library!

Jason is in good humour this morning, excitement in the air of anticipating the time with his sister. A change in routine was good. Jason loved his sisters, loved being in their company, he knew that he had the best sisters any brother could ever want. Jason is back to living the day to its fullest. With Siobhan now here to listen for Jason I could concentrate on getting ready. Such a luxury to blow-dry my hair instead of the usual air-dry. Checking my watch, I was right on schedule. All dressed in my ‘off the farm’ outfit- my few pieces of clothing that weren’t horsey mucking out clothes. My ‘hospital bag’ packed early, already in the car so Jason wouldn’t spot it, packed with all the usual necessities and precautionary items : Jason’s medical file, Brain Tumour Assoc. reference book, extra pens, pack of tissues, bottle of ginger-ale, bottle of water, anti-diarrhea pills, anti-nausea pills,Tylenol, a sick bag, all bases covered, ready to aid me in any of those situations. Knowing I was prepared for any sudden affliction, gave me comfort. Now all I had to do, was to brush my teeth, and I’d be on my way. I am in the bathroom doing just that, when I hear a huge crashing sound of dishes coming from the kitchen. Running to the sound; it is Jason in the midst of an intense seizure. His right arm thrashing and he is heading over to the stove and is getting boxed in between the stove and nearby kitchen table. He is going off balance and I grab him from behind, now standing right behind him with my arms clasped around his chest. In Jason’s right hand he has a full bottle of uncapped diet coke tightly gripped and each time his arm swings up and back, the coke shoots out. 950ml of it. Small puddles of coke on the floor make it incredibly slippery. Coke is running off my hair, down onto my glasses and face. Clothes are wet. Siobhan hearing the commotion came running in to help, got Jason and I steadied, as any moment we were going down. With Siobhan now holding Jason, I opened my mouth to tell her that I will grab some towels to throw on the floor so we can get Jason out of there, and a mouthful of toothpaste liquid came drooling out cascading down my chin. The physical component of the seizure was now easing off. Quickly mopping up the coke with the towels before Jason became aware of the mess, I peered up at Siobhan. Needing to cock my head from side to side, attempting to get a clear visual of her, vision obstructed by the continuous trickle of Coke arriving on my lenses, Siobhan, with empathy, softly said, “I know this isn’t good, but, it is kind of funny.” Feeling the trickle dropping to my chin detouring around the drying streams of toothpaste, I became amused with what I must look like. We broke out into a giddy chuckle. It was a welcomed moment. Our friend ‘ Mr. Humour’ always ready to play and lighten the mood. Jason now safely out of there, clean clothes on him, hearing Siobhan reiterating to Jason that he had just had a small seizure, that everything was ok, I raced upstairs. I peeled off my soaked clothes and panicked trying to find something else to wear. All that I had were barn clothes. With no choice, on went an old pair of jean capris and a bright green t-shirt that said Boston Sports in large dark blue capital letters right across the chest. Now running late, I sped off in the truck remaining in the fast lane for the 30 minute drive. My coke-drenched hair dried quickly. It was hot, temperature in the high-30s and without air conditioning I had to drive with all of the windows down. That is, except for mine, the driver side window was broken. Hot air blowing in through the front passenger window caused my hair to have an extreme wind swept look,  sweeping everything to the left, up and over. By the time I got to the hospital my hair was wild and stiff, giving me a much startled frazzled look. There was no movement in my hair, it was set hard. My skin on my face felt unusually tight. Walking through the hospital and standing in the packed elevator I could feel the wide-eyed stares. All I kept thinking was thank goodness I didn’t run into any wasps in the parking lot; they would have been all over my head and followed me into the hospital.

Sarah came to the waiting room to get me. She appeared compassionately surprised by my state. I am not sure if it was the BOSTON SPORTS shouting out from across my chest or the shellacked spiked hair. Looking at her expression I could only imagine what she is thinking. Trying to justify my odd appearance, I started nervously babbling that I didn’t start out looking like this, that I was actually dressed nicely before and so on… My face is feeling so incredibly tight, facial movement feels restricted.  I could feel my eyes growing wider as it became obvious to me.. it’s the Coke. While casually trying to push down the spikes of hair, which was not a bright idea as the sticky coating flaked off in little bits, I could hear my voice going on about the advantages of coke on the hair, a better set than any ultra-hold hairspray…. My adrenaline and nerves were running off with me. All I wanted to do was pull out of this, thinking to myself why did I start? Knowing full well sometimes it is just better not to say anything and this was definitely one of those times. In walked Dr.B., this stopped everything. He asked Sarah to stay which had never, ever, happened before. Heart is racing and pounding. A few irregular heartbeats send an odd flutter up into my throat. Feeling nauseous. A sudden reach for my ginger-ale. We were right down to business. I knew that what I was about to see or hear was going to be a pivotal moment. I could sense the stressful tension of them knowing what I have yet to hear. Pulling up the latest MRI on the screen, I immediately saw the increases in size of the tumours that I was very familiar with. This most recent image showed a large increase in the anterior cranial fossa meningioma. It had more than doubled in size since the previous MRI of 8 weeks ago. Oh No! Poor Jason. This is what was causing the drastic change and debilitating pain. I am floating. As I stare at this lethal monster, my surroundings strangely feel weightless. Two new tumours are confirmed in this radiologist’s report and they were clearly announcing their presence before my eyes. NF2 was showing no mercy. The left mengioma tumour that was removed in Jan 2011 had triumphed in returning, putting Jason’s eyesight at risk again. Dr.B., “Jason would need two major brain surgeries.” I just shook my head. My mind took me back to Jason’s previous surgery, the incredibly difficult days for Jason in intensive care. It was touch and go in there a couple of times. I know that Jason cannot safely go through this again. Jason is weaker, reflected in his current weight of 154lbs compared to a consistent weight of 190lbs up until a few years ago. Dr.B., “So far Jason has done well and has been lucky that nothing has gone wrong, but inevitably something will….an uncontrollable, unforeseeable event.” The words Mortality and Morbidity were present. I asked, ” If Jason had a stroke would he be fully aware?” The answer was “Yes.” That very thought..Jason lying in a bed, immobilized, paralysed, blind, almost deaf, Jason freaking out in a state of panic was an unfathomable thought. An unfathomable situation for Jason and our family. We all knew that Jason would want to have surgery at all costs if he is made aware of the tumour threatening his sight. Jason would not digest the big picture. To Jason, not operating, leaving the tumour to naturally rob his sight would be unacceptable, I do know that. Dr.B. pointed out that Jason is at great risk of losing the optic nerve in surgery itself as there have been two previous resections in this very area; it just takes a change in blood supply to the nerve. My recurring nightmare of Jason being deaf and blind resurfaced in my mind. Prior to this meeting, Dr.B. and his colleagues had met for a round table discussion about Jason’s case, one of many, and the general consensus was not to do surgery, the majority thought the risks were far too high. I hear my voice, “What kind of time frame are we talking about?” I was out of body at this point. It sounded like a line in a movie. Dr.B. answered, “Well considering that this is ‘Jason’ we are talking about, it could be anywhere up to a year, at the most.” I am so afraid for Jason. So afraid for us all. My poor girls. I am dizzy and spinning with this fact closing over me. Trying to process what is happening here, it feels like something will snap in my head and I won’t be able to pull out. I want to scream and run to Jason as fast as I can, the need to save him but I know I can’t. My poor precious son. It was a very emotional appointment. I signed the forms or so I was told later on that I did. I arrived back home in a lightheaded daze, ‘Palliative Care’ information sheets hidden in amidst Jason’s medical file. Taking a deep breath as I removed my shoes, I hear Jason’s voice “Is that you Mum?” As I rise above the haze, cheerfully announcing my return, I approach the living room, digging deep to be ‘normal’. Smiling at my children, my heart hurt. Discovery channel was on; a welcomed distraction.

“The Kid’s in Trouble.”

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Hands pressed onto the wall to steady himself Jason stepped onto the scales…154 lbs..this number was a stranger. The nurse made the necessary adjustment for the amount of contrast dye. Seeing this low number caused a surge of anxiety within me. The nurse started an IV line into a vein on the back of Jason’s hand in preparation for the injection of contrast dye. Jason was booked for a lengthy MRI appointment. We had been given an emergency spot.

Jason was booked to have a full set of brain and cervical spine images taken without contrast. Jason will then be given the contrast dye and an enhanced second set of brain images will be taken. The MRI technicians with smiling friendly faces greeted Jason with a “Hey Bud”, giving Jason high 5’s. Jason really enjoyed the playful banter. We were familiar faces to them. With a smile and a nod I would get a “Hi Mom.” I always thanked them and was so grateful of my special privileges to accompany my son. Once I got Jason into the gowns and his belongings into a locker, I stayed in the Patients Only zone with Jason right up until the MRI started. This waiting area was most unnerving for me. Situated just on the other side of the MRI machines in a small alcove, there were 4 chairs in a row, placed tightly up against each other. Each chair occupied with a gowned patient, some with an IV, some not. Jason with the IV needle inserted into his hand, the line taped to his arm, sat patiently in a chair. I am standing beside him. Jason looking proudly amused as he watched me answering MRI related questions from the other patients. I became useful at instructing how to put the gowns on; first one goes on facing backwards, which I sometimes was asked to assist in tying. This was tricky, as people were undressed, so I did my best to keep my eyes lifted. The second one faces forward, which at times I would help guide their arms into, and then ties at the front like a dressing gown. An occasional reminder of removing jewelry and hair pins was needed. I always thought that this would be a good volunteer position. As I smiled and chatted with them helping to ease their anxiety I was very aware of Jason, my senses sharply tuned into him to catch a change in his breathing, the slightest sign of a hand moving too quickly, a foot lifting abruptly… This split second of catching these subtle changes made all the difference in the outcome of a seizure. The stress of knowing full well that if he had a seizure it would be horrendous, arms flailing, the IV line ripped out, equipment being knocked down, Jason falling over the chairs and people. It is all happening in my mind as I stand there.  I am appearing calm on the outside, well so I assume, but inside anxiety is raging as I play through each one of these possible scenarios. There were times when a seizure did occur in various hospital clinics. The intensity of the seizure in compact areas with equipment and people is a most terrifying time…dental clinic, eye clinic, hearing clinic… Wherever we would go I would immediately survey everything around me, planning my best escape route to get Jason out of there safely, keeping equipment upright, and most of all to avoid other people getting hurt.  It really was a miracle that Jason didn’t have a seizure while in the MRI machine since many had occurred soon after, in the truck, on the way home. The MRI scanner is a narrow tunnel; pillows and foam cushioning packed around Jason’s head with a velcro strap across his forehead, necessary restraining for clear pictures but a distressing thought in the event of a seizure. People I know have said, “you must be used to it all by now,” but you never get used to it. Seeing your child ill, going through these proceedures, is something you can never get used to. You just become better at keeping yourself together. Sure all is familiar but the stress level never gets any less; you just get better at concealing the worry, keeping the calm brave exterior, all for the sake of your children. When you have children you lose the freedom to be as down and pessimistic as you want and it forces you to be strong. Jason’s first set of scans are finished and he has just been injected with the contrast. The loud jackhammer knocking, banging, high pitched chirping, squeaking sounds resume. Throughout the next hour I could hear them talking to Jason through his headset, telling him the time and the sound involved with each picture, “Jason, this will be a 3 minute picture and this time it will be a loud, higher pitched sound, please remain still.” For the hour that Jason lay inside the MRI tube my senses are on full alert, watching for any sudden rise of activity in the monitoring room, looking for the tech’s reactions to see if they are shocked by what they see on their screens.

Jason’s headaches were debilitating. Tylenols 3’s w/Codeine alternating with Naproxen taken every 2 hours. Any type of noise intolerable. Dark sheets pinned above each window. No washing machine, no vacuum, no dishwasher, no TV…house as quiet as possible. This morning Jason was very lethargic. Internal panic set in. Messages laced with desperation had been sent to Sarah and Dr.B. detailing the decline in Jason and the urgent need for stronger pain medication. It was Monday morning, I called first thing and Dr.B. was already in surgery. Sarah would speak with him as soon as he came out. In this case it was best to wait for Dr.B. rather than take Jason to emergency. In the earlier years before my relationship with Sarah and Dr.B. was solid, before I had the privileged contact numbers, I did take Jason to emergency. We totally spun the resident neurosurgeons on their heads. I am explaining to them about Jason’s case as their eyes became larger and larger, me trying to mentally steady them as they stare off into Jason’s latest scans. I remember the two residents looking through the daunting medical file, a thickness of an encyclopedia..a relieved thankful response as one of them rushed off to photocopy my summarized notes. Jason arriving before them, a post-op patient of Dr.B, the Chief of Neurosurgery at the time, didn’t help with the resident’s stress level. It all ended well after a visit from the neurosurgeon on call. It was a steep learning curve that evening for the resident neurosurgeons.

We would wait for Dr.B.  Jason would have a rest. The pain and pressure in Jason’s head intensified when lying down, so he remained sitting up. Draping the blanket around the front of his body, tucking it in behind him, cushions propped, I pulled the coffee table in close. Jason interlaced his hands across his chest. Legs out in front crossed at the ankle now resting on the coffee table. A soft cushion under his feet and a blanket placed over the legs and feet. This was all done in silence; it was a dance that we had perfected over the years. As I would do the finishing touches tucking in any bits of blanket, I was flooded with this powerful feeling of nurturance. Maybe detecting this, Jason in a slurry voice coated with optimism, “It’s ok Mum, it will pass.” Jason would power down, he had this innate ability to go within, knowing at some point whether it be minutes, hours or days, that eventually this would pass, there will be a clearing up ahead, and this pain would be in the past. These three words ‘it will pass’ is a gift from Jason that I say to myself often. I sat beside Jason for much of that day in silence. Bathing in this deep silence I became aware of a shift. The atmosphere was noticeably pure, calm, and safe and it was in this unique kind of silence, that I could feel the light within me, the Mum, the caregiver, meeting the light within Jason, my son, the care person. Time, words, thoughts, images, were all absent.

My incoming email button lit up. It was Sarah…a prescription of Oxycodone has been called in and an MRI was booked for tonight at 9pm. Helping Jason up into the truck we went right away to pick up the prescription. Jason took an oxycodone pill with a swig of Coke in the truck and by the time we were home the pain was easing. Such an overwhelming sense of relief for Jason. Within a few hours we were back in the truck heading off to the hospital for the MRI. Jason was in good spirits. ‘Truck Tunes’ cd was playing. New pain medication had done its job. Jason was eager to have this MRI tonight to see what was going on. My worrying mind became distracted by an aroma of horses and barns. Oh dear!! I had been feeding and putting the horses to bed just before we left home and now in the confines of the heated truck it was very evident. I was heading into the hospital’s No Perfume Zone so there was nothing I could do; I just hope that there are some horse lovers at the clinic and that the air conditioning is on!!

The following days were overcome with anxiety. Anticipating the results was nerve-racking. I was so fearful for Jason. When my level of anxiety was like this, on overload, the floors and walls would appear to tilt. When outside tending to the horses, walking across the paddocks etc. the connection between my mind and the mechanics of walking was absent. Looking down at my legs I was rattled by the fact that I was walking with these legs but yet I didn’t feel like they were mine, they didn’t belong to me…a very detached feeling. The other morning I was driving my truck taking Jason to his favourite sports store and a white truck like mine was coming towards me. I thought to myself, “that must be Tom driving my truck, I wonder what he is doing coming home at this hour ?” when it hit me that I was driving my truck!!!!! This feeling really frightened me.

Sarah was on the phone; “results are in, Dr.B. is here, and he would like to speak with you.” My adrenaline skyrocketed. Dr.B.’s voice, “Fiona, the kid’s in trouble.”  I can’t even describe the feeling. With all my will I had to extinguish the panic and listen carefully to make notes; a new tumor growing right anterior fossa, anaplastic meningioma on left into nasal cavity growing, meningioma left parietal (behind ear) growing, acoustic neuromas  and neck tumours stable.

Dr.B.,” It will be a difficult decision on what to do next.”

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.

MRI results this afternoon.

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Usually Jason was up by now.  For close to an hour, I had been back in the house from an early morning start in the barn. Taking advantage of this rare solitude, I sat pondering life over a bowl of cereal and a coffee. I was feeling numb. I knew this day could present a fork in the road- we could continue down the same bumpy road or be sent down the alternate road with a dangerous steep slope.  I sat there closing my eyes for a moment, just wanting to switch off and escape for a moment, but my mind selfishly had other plans. It dragged me to the recent episode of Jason having a rare tonic seizure. Jason and I on the floor, Jason rigid, nothing moving, eyes frozen open, unable to find a pulse I was sure the brain stem had shifted and he had died in my arms. It was the most horrific experience. The ambulance came; he had weak vitals and was rushed to the closest hospital. Before I had come back to my present state of sitting at the kitchen table, I was racing up the stairs, now standing outside his door trying to hear over my rapid breathing some kind of sound…holding my breath, thinking is he alive? Maybe he didn’t sleep well last night….I should let him sleep; we have our appointment for the MRI results this afternoon. Did he have a seizure in the night and his heart stopped. Hand on the door knob; about to burst through his door, I hear some movement. I stick my ear to the door and yes, he is alive, and he is getting up. OMG! how crazy of me to be thinking like I did but that was the reality of it all. Many, many, times I have stood over Jason sleeping on the couch, watching, making sure his rib cage was heaving up and down, just like I used to do to each child when babies sleeping in their crib. I hear Jason coming down the stairs. Of course I have already blasted back downstairs and am sitting at the kitchen table trying to regulate my breath, pretending that I have been having a leisurely laid back morning leafing through store flyers. Jason approaches me and we greet each other with “hello” and a smile. I call him sleepy head and he gets a glass of water to take his pills. I head upstairs to gather some laundry and I hear a big bang. I drop everything and fly down the stairs. It always amazes me how I haven’t fallen as I hold onto the bannister and sort of glide over the edge of the carpeted steps arriving in a flash at the bottom. Jason is at the stove with his back arching, arms flailing, frying pans and a pot crashing to the floor. Pills are everywhere and he is on the move, still in the thrashing stage of the seizure. I try to guide him around the fallen pots and utensils with pills scattered all about. He had obviously had his pill box in his hand when the seizure struck. The box has a week’s worth of pills divided into daily am and pm compartments. Jason takes 4 different types of pills, a total of 14 pills per day. He is wearing his summer sandals that are not ideal footwear at the best of times for Jason and are hazardous in a situation like this. I use all my strength to move his resisting 160 1b body away from danger. Within minutes, the longest four minutes , the extreme physical part of the seizure quietens down. He is now very confused.. wanting to know where all the family members are…doesn’t know if it is am or pm… what is all that on the floor…did I take my pills? I didn’t know if he had taken his pills before the seizure. Looking for clues on the glass of water…any lip marks ,any obvious water level changes, trying to determine if enough water had been drank to swallow his pills. I couldn’t be sure. The only way to be sure was to gather all the various pills off the floor and see what was missing out of the pill box, and go from there. Pills were scattered everywhere. It was a tad exercising for my brain to do the math but his am pills were amongst the ones on the floor. Jason was sure he remembered taking them. I showed Jason my math equation which we kind of chuckled about, he agreed and took his morning pills. And that was the start to Jason’s day. Within a couple of hours we were in the truck heading to the hospital for Jason’s MRI results.

Jason’s 29th Birthday

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An MRI was booked. Last week we had celebrated Jason’s 29th birthday. Jason loved birthdays, not just his own, he loved everyone’s birthday in his family. He loved the anticipation of presents, who was coming?  what food were we having? and the best part, ‘the cake’. Jason’s youngest sister Kelsey is an accomplished baker and Jason loved her baked cheesecake decorated with fruit in a glaze; such an incredible taste and a work of art. Jason’s face would light right up when Kelsey placed the cake dotted with glowing candles down in front of him. It was a special time. Thankfully on this July 12th it was a good day for Jason and he was full of joy!!!! So was everybody else!!

Jason’s daily seizures, headaches and  dizziness had worsened. Jason now needed lots of help. It was very difficult. Seeing this decline caused such a sense of uneasiness that was with me everywhere and it wouldn’t go away. I was so afraid for Jason.  Jason was getting words mixed up or else couldn’t remember what things were called-not all the time but it was happening, whereas 2 months ago this was not. Jason was displaying episodes of paranoia and obsessive behaviour which was new. Jason’s questions about anything and everything were constant to me. If there was a blessing in all of this, if you could call it that, it was the fact that Jason didn’t appear to be bothered or worried about any of these issues. Of course the key was not to react and gently help him out, like ‘no big deal’, as we would recall the words for him. Jason would kind of giggle at times with us in this situation which was a welcomed lightness at this time of anguish. Jason just carried on not concerned over what was happening…this wouldn’t have been the case before. It was exactly as Jason’s Doctor had told me four or five years ago “This will be hell on you Fiona watching this, but as time goes by Jason’s realization of what is happening now, compared to before, will become less.” He was right; this is exactly what was happening.

When it was a good day for Jason, when headaches were kept at bay with Tylenol 3s and Advil and he wasn’t too dizzy, Jason would seize the day and want to make the most out of it. This meant getting off the farm and going out into civilization where there were lots of  people, cars, and stores. Places of potential danger. Stress of keeping him safe in a seizure. Jason would love to go and spend time in his favourite stores. The clerks knew us well and Jason loved to have a little chat with them. They were always so pleased to see him. This was a good feeling for Jason and for me too to see Jason in this way. Jason was so courteous to strangers, insisting on holding doors open for people no matter how he felt. When we would go out on these little trips there was nearly always a sense of humour present, some joking and laughter in the truck while ‘Mom’s Truck Tunes’ cd was playing. Jason had compiled 4 cds of our favourite rock tunes, ‘Mom’s Truck Tunes Volume 1 through to 4’. Once back home he would usually like to watch the Discovery Channel while playing on his laptop. He would order up his favourite sandwiches….a pb and j (peanut butter and jam) or a pb and b (peanut butter and banana) usually accompanied with a glass of milk and 2 Tylenol 3s.

Jason would normally then have a nap lying on the couch and that is when I would dash back out to the barns to do as much work as possible before he woke up. If Jason had not yet had a seizure that day I was very nervous about leaving him unattended. In a heightened state I would muck a stall, then run back to the house,  peek in the window to make sure he was still sleeping and if so, run back to the barn andmuck another stall and so on….

Seamus, our golden retreiver, thought this was great fun!

 

 

‘Jason’s Moment’

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The lights dimmed. An enthusiastic announcer’s voice booms out” I am pleased and honoured to present the Print Media graduating class of 2009.” We see to our left a seemingly endless line of graduation gowns cascading down the aisle heading down towards the grand stage. My emotions accelerated. We are actually here and Jason is one of the gowns.

Perched on the edge of our seats we are desperately trying to search out Jason. We have been seated in the middle of the row about half way up the auditorium so our location combined with the dark and everyone dressed the same was making it hard to find him. Madly scanning the group for his height, his unsteady gait….my worry takes over. Where is he? Is he all right?  Of course my mind had already dragged me through every type of scenario that could happen and figuring out the fastest way to get to the stage which involved climbing over people and stepping on heads that were in the rows between me and my son. Thankfully, one of the few times I would be thankful for a seizure, Jason had already had a seizure about an hour before we had left home which was the biggest relief to  have it out of the way but we all knew it wasn’t totally impossible for him to have another seizure especially with this type of stimulation.  The girls exclaim “there’s Jason!!!!” OMG I see him. I thought my heart was going to burst. The amount of love and compassionate energy coming off our four chairs would move mountains. Jason’s name was next. He appeared at the far right of the stage waiting to hear his name, the cue to start the long walk across to the far left side of the stage. Jason looked so incredibly handsome, his stylish new clothes and shoes poking out from underneath the long gown. Jason’s name was called. Holding his head up focused ahead on the diploma in the President’s hand at the far side of the stage Jason set off.  He walked with such purpose and poise across the stage like I had never seen him walk….striding out, so balanced and straight, passing the rows of College Professors and dignitaries.  OMG I was almost in shock seeing this play out in front of me. Jason’s neurosurgeon said it best ‘this was his moment’ and it most definitely was. Nobody in that auditorium knew what this amazing young man had to overcome to be up there; starting College in 2002 having to resign time and time again due to brain surgeries and radiation, nothing stopping him, never giving up. Now here we are in 2009 and Jason is on a graduation stage. My emotions are so powerful, hard to describe. My love and admiration for this child resists all confines of language.

The forces of Jason’s illness were present daily:  nausea, sometimes vomiting in the truck on the way to school, headaches, cranial pressure, seizures, weakness, tiredness, pain, debilitating dizziness but unless he couldn’t walk he would insist on me taking him to school and the power of his mind with my help carried him to class. The heart wrenching times when Jason could not make it up the College entrance steps was when Jason knew he was defeated that day “Take me home then Mum.” He would be so frustrated saying “if I was just feeling sick or had headaches I could go but the dizziness makes it impossible to do anything.” I could never not drive Jason to school as much as I knew I would be bringing him back home right away or shortly thereafter, this is just something I could never do. The fact that Jason, despite such forces against him, wanted to try to go was the fire and spirit of his soul and this could not be extinguished in the slightest. The spirit and drive Jason had was like no other. I was so proud of this amazing young man up there as he quietly exited the stage, diploma in hand.

 

A peek in the window of my mind.

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Feel like I’m losing my way. Pressure and fear is unrelenting. All senses heightened. Anxious, helpless, mind racing, heart pounding. Just want to sit in the middle of a field and wave a white flag.

Floundering, fearful of what may happen tomorrow. Will it bring joy or sorrow? Lingering scent of sadness is always with me. It takes exceptional friends to stay close.

5am- in the barn. Temp. -28C with a severe NW wind-chill. Horses have to be fed, blanketed etc.  Jason is inside sleeping. I’m worried out of my mind …is he ok?…has he woken up?….has he had a seizure?….has he fallen?. I feel sick. It’s insane but there is no way out.

Grave danger and overpowering worry of the upcoming surgery is suffocating me.Knowing what could happen to Jason evokes a horrible picture.Total panic. My body and mind feels ripped open and rearranged. I’m on the River of Fear…some days the boat is afloat, other times it is capsizing and this is one of those days.

I hear a muffled thud from upstairs. Seizure! Adrenaline skyrockets. Warp speed up the stairs I burst into his room relieved to find him at his computer, headset on, whistling and humming with his shoes thumping to the beat.This is the thud I heard. As Jason removes his headset I hear Eric Clapton blasting out ‘COCAINE’!!  “Oh hi Mum” a big smile across his face. This smile flows into my heart.  I respond “ Oh hi love, just thought I would see what’s going on” acting nonchalant while reining in my adrenaline. We had a little chat and  I let him get back to his music.  Jason’s spirit never ceases to amaze me and this inspires me to stay brave. There he is up there playing his computer games listening to music and smiling and he has the biggest hurdle of his life coming up. Everything comes back into perspective.

My recurring dream happened again last night. Jason is in the back of the car, we are driving past Qualicum Beach. Jason is frantic not knowing where we are, he can’t see, he can’t hear. I quickly put the windows down he smells the sea air and knows he is by the ocean. This would affect me for days. There are NF2 cases with complete loss of their hearing and sight and that is my greatest fear. As it stands now when I walk directly beside Jason I have to decide does Jason need to hear me or see me. If I walk on Jason’s right side he can’t see me. If I walk on Jason’s left side he can’t hear me.

Jason’s epilepsy surgery

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Jason went into the OR at 9.00am. Jason was calm, brave and ready for this surgery, this was going to make a big difference in his life.

My cell phone stayed clasped in my hand constantly checking it. The neurosurgeon wanted me to carry it in case there was a problem, a decision to be made. The waiting for news good or bad was brutal. The fear of  not knowing what was happening was overwhelming. With my whole being in an accelerated state of anxiety the only way for me to stay together was to pace back and forth, always sticking close to the elevator where the patients would come up from the OR. Everyone’s eyes were constantly fixated on the floor numbers above the elevator door awaiting their loved one. When the elevator floor number would light up everyone jumped up hoping praying that this is theirs, the doors open it’s not Jason, one other family is overjoyed. Where is Jason? Is he alright? My mind would be going crazy imagining everything that could go wrong. There were five or six other families in the ICU family room which slowly over the day dwindled to just two of us. The elevator floor number lit up. As I hear the elevator approaching our floor I hear many voices and a heart monitor, a steady strong rhythm..beep..beep..beep..I knew without a doubt that this was Jason. The doors opened, the best gift imaginable, it was Jason. He was surrounded by a full team of nurses, anesthesiologists and Drs. Jason was ok and doing well considering the ordeal he had just been through. OMG that emotion and feeling in my heart, so many layers to it. Such intense relief, joy and worry.

It was now 5.00pm. Jason had been in the OR for 8 hours. The main man, the hero of the day Jason’s neurosurgeon was on his way. As he approached I met his eyes looking for signs of concern. This unspoken exchange expressed in the eyes and face between the mother and your child’s surgeon is a language all in itself.  I was really overwhelmed and indebted to this man as we shook hands, the gifted hands that had performed a miraculous surgery and returned Jason back to us. It had been a challenging long surgery. He had removed a lot of scar tissue and some nodules which possibly were residual tumour since they had a vascular component to them. The issue of pressure changes and swelling was managed, they didn’t wake the tiger !

Jason was now set up in the ICU directly in front of the nurse’s station.  Jason sensing we were there opened his eyes and in a slurred groggy voice said “I’d like a Tylenol and a Coke please?” then fell back into his deep drug induced sleep. That was the best thing and so funny. Right away we knew Jason was ok. This was the Jason we knew. The nurses questioned me what does Jason need? I told them “a Tylenol and a Coke” they laughed and right away they knew what an amazing special patient this was.

I didn’t feel well at all. High pitch ringing in my ears, a cold clammy sweat, ‘I think I’m going to be sick’, I think I’m going to faint’, the mad anxiety of finding a vacant chair as I could feel myself starting to go. Of course nurses had spotted what was happening before I actually met the floor. A chair was slid underneath me, a paper bag put in my hand, a cold cloth on the back of my neck and my head down between my legs. Here I was in the middle of the ICU amongst all these critically ill patients and I had my own small team of nurses for 5-10 mins. I felt bad about using their valuable time but I guess a Mum on the floor is a real liability. They said ‘it is the shock of seeing your son in this state that caused your body to react this way.’

Arriving back the next morning I couldn’t wait to see Jason, I couldn’t get to his station in the ICU fast enough. Eagerly anticipating Jason I was met with an empty space. I sank. I will never forget that feeling. A nurse appeared “Jason has been moved. Jason did so well last night so he has been moved to the less critical part of the ICU” pointing to the other side of the room.  I’m sure my face said it all as she stroked my arm. “Don’t worry he is fine”.

There he was, he looked so young and angelic just quietly lying there, no sounds of fussing or moaning, sheets still smooth and straight. Jason had such a strong constitution. Even when the heart monitors were displaying raised vitals reflecting the trauma of  pain Jason still would never complain. The nurses and doctors had never met anyone quite like Jason and  this was where he got the label ‘STOIC’. Jason had this amazing ability to go deep within himself and to get on with the healing process.

His bed had been raised to about a 45 degree angle to help with any swelling.  He looked good considering less than 24 hours ago he was in brain surgery. I survey the monitors, all numbers look good. I notice that they have removed some of his head dressing plainly revealing the drain site,a clear tube of slow moving liquid protruding out of his head. I started feeling a little light headed. I hear an alarming CODE BLUE on the other side of the room followed by a mad scurry of staff.  Out of nowhere high pitched ringing starts in my ears…Oh no!!! Not again. Head is getting dizzy, Shit!!! I can’t faint now. In haste I spot a blue chair of some sort behind me, I grab it and start to collapse into it. A groggy voice says “I wouldn’t do that if I were you Mum” followed by snoring. I look and I am about to collapse into a commode ideally equipped with 4 wheels. I could only imagine the image Jason had when he opened his eyes and saw what his Mum was about to do…Mum dropping back into the commode, bottom getting stuck in the hole,the jolt setting the commode free to roll down the ICU aisle with Mum shrieking with arms and legs sticking up in the air. This scenario provided many laughs throughout the years.

It was a very hard week for Jason at the MNI but finally we were back home. Jason was resting lots and in less pain with each passing day. Since his surgery Jason had not had a seizure which was absolutely amazing and Jason was thrilled to know that. Possibilities were opening up!  It had already made a difference in the family’s anxiety level.

Then a change. At the incision site Jason began to have increased swelling. I was concerned. I called the MNI and they said as long as the incision isn’t infected it is probably normal post-op. Sure enough Jason didn’t have a temp but Jason wasn’t himself and I knew with a mother’s instinct that something was seriously wrong. I took pictures of the swelling and emailed them to the Neurosurgeon. He still said to wait and see. Two days later Jason is dizzy, vomiting, bad headaches, not well at all. The next thing we are at the MNI in the neurosurgeon’s office and yes sure enough he has a CSF leak. Jason was admitted for emergency surgery the following morning. I was so scared for Jason as he was still recovering from the first surgery. Jason was in the OR for about 4 hrs. Thankfully they managed to find the hole where fluid was gushing out. They repaired the hole with a glue type substance and sutures and wrapped his head very tight. They started an aggressive course of antibiotics. Jason’s strength and tolerance was unbelievable through all of this. Jason humbled doctors and nurses over this challenging time. Within a week we were back home and I was to remove the bandages within a few days and to report the findings to Montreal. Thank goodness such a relief to find there was no evident swelling . Surgery had been a success.

Soon after Jason registered himself to start college that fall.

Jason at the Montreal Neurological Institute

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Jason was now at the world renowned epilepsy center at the Montreal Neurological Institute (MNI). Jason’s neurosurgeon and neurologist were leaders in their field. I was so relieved that Jason was there. Jason liked his MNI medical team and they quickly grew very fond of him. The team in a short time got how Jason and I worked. At first they directed the questions to Jason but only to hear “You will have to ask my Mum. My Mum knows.” So soon enough the team would meet with me to discuss Jason’s case. Jason knew that I would go to the edge for him and get him the best and this took a lot of pressure and worry off him which became evident to the doctors. Of course Jason always had the final say but at least I could do all the groundwork for him. I recall in one particular meeting a couple of doctors who were brought onto the team assumed that I was a neuroscience nurse from the way I was briefing them and discussing Jason’s medical case to date. They were surprised to discover that I was a MUM and a horse stable owner!!!!  I would come to the meetings armed with my detailed notes, copies of all MRIs, CT scans and pathology reports. It must have looked  funny seeing me standing with them, the only one not in a white coat, looking at the images on the screen. I knew Jason’s brain images so well. They said I helped them tremendously as they took copies of my notes. It was a great relationship and Jason would grin when he saw me standing with the team and always became very relaxed knowing Mum was at the helm.

Meanwhile I had to find somewhere to sleep. I stayed at a hotel down the hill from the hospital for the first few nights but at $100 per night for a month I couldn’t stay there. A nurse at the MNI told me about a nunnery within walking distance that sometimes has a small number of basic rooms w/shared bathroom for relatives of the ill. With Jason now asleep and the nunnery business card in hand I set off to find it. I followed the little map on the back of the card. There rising from behind high stone walls was a group of imposing grey stone buildings with a spiral poking up through the middle of them. I wasn’t sure about this. I pushed on a heavy old wooden arched door somehow expecting it to be locked but to my surprise it creaked open. The buildings were cold and gray, sober in appearance with many windows which immediately made me wonder about the nuns on the other side of those windows, what an austere life it must be. There was not a soul to be seen but I felt like I was being watched.  A sign that said visitors with an arrow pointed to a small plain door. It was locked. I pressed the buzzer. An unpleasant loud crackling noise followed by an elderly woman’s voice “Allo?” met my ears . I introduced myself and my situation. There was no verbal response just a loud long buzzing noise and a pronounced click. I was in. No sound just my footsteps echoing on the highly polished floor as I bravely walked down the massive corridor, still not a soul to be seen. At the end was an elevator that mysteriously opened right ahead of me. I go to Main. It was eerily quiet. Everything was so grand and elegant in religious detail.  I spotted a  room with the door open. I walked in. A frail woman hunched over is barely visible from behind the solid dark oak desk. I said “Hello” carefully not to startle her. She raised her head revealing a delightful glowing face framed with large glasses complete with a mass of shocking white hair. She gave me a lovely smile and a nod  “Allo!!”,  this was the buzzer voice! Communicating with her was difficult due to language barriers but somehow we managed and I had a room.$25 per night including breakfast!!! Plus they would pray for Jason each day!

When I got back to Jason with the news he couldn’t believe his Mum was going to be sleeping at the nunnery and having breakfast with the nuns. Jason got a lot of mileage out of this and loved telling the staff which was fun for him. This kept him amused and interested each day with my tales from the nunnery. Jason would tell me “Mum you better not try to sneak any wine in” so we had lots of fun with it which was great.

Jason was visually monitored round the clock. Jason’s scalp was covered in 25+ electrodes recording intracranial activity. Jason had to lie in bed under this observation 24 hours a day for just over 3 weeks. Jason could only leave his bed when accompanied to use the bathroom or shower. The days were very long. I arrived at 8.30am-8.30pm. This daily living was a true testament of Jason’s patience and determination. Other patients weren’t doing so well with being confined like this and would be angry and frustrated. Jason would just stay quiet, focused and positive. Jason’s medications were gradually decreased to nothing in order to see the full effects of the seizure. This was a very stressful time. It took many of us to ensure Jason’s safety. The seizures increased in number and were very explosive and extremely physical. Once enough data was gathered Jason was gradually put back on his medication. This was very tough on Jason’s system…nausea, dizziness, headaches….. Heartbreaking but I just kept reassuring him that it would get better soon as I held the sick bowl. I always had to stay strong and positive with a slight humorous lightness so Jason would not be alarmed. As long as I held this persona Jason knew everything would be ok. I could not show any sign of worry as Jason would pick that up immediately.

The team now knew where the seizure focal point was. The seizures were coming from scar tissue from a previous surgery. They expressed that the seizures were about as bad as they can get and no doubt were hard to manage. They finally understood what the family was trying to cope with. They felt epilepsy surgery would definitely help Jason but they had never had a case like Jason’s where there were existing tumours. The left acoustic neuroma causing brain stem compression was making them nervous. There was no previous data to go on. There was the added risk that while in surgery the brain pressure could change and the brainstem could shift up or down resulting in a brainstem stroke.

To not do the surgery also had risks. The unpredictability of seizure onset and lack of seizure control was a constant major threat to Jason i.e. walking into traffic. The intensity of his seizures added a very real risk of cardiac arrest due to the brainstem shifting from pressure change in a seizure so life threatening risks were everywhere. We all knew that no matter what Jason was on a mission for the surgery. Jason felt safe with the team. After speaking with Jason the neurosurgeon agreed to do the surgery. The surgery approach would be to go in quietly and slowly, sneak around the tumours, do the epilepsy surgery by removing the scar tissue and then get back out quietly and slowly, all without waking up the sleeping tiger! I had complete faith and  trust in them to make the right decisions while holding my son’s brain in their hands.

Surgery was scheduled; we were to return in 6 days. Meanwhile we could go home and see the rest of the family 2 and 4-legged!

 

 

Jason- Age 24

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The 24th year of Jason’s life was one of turmoil.

It came on full blown one morning. Nothing like this had ever happened before. Jason started having extremely terrifying illusions, such as when he looked at his beloved dog and at me we appeared to have our throats slashed. Jason was absolutely terrified. It was awful. I didn’t know what was happening. Poor Jason. I rushed Jason down to the hospital and Jason was admitted for two weeks in total. Tests and MRIs were done as tumour growth was suspected as the culprit. MRIs , scans showed no significant changes in the existing brain tumours. It was a very distressing time and all I could do was to be there from morning until night(apart from going home to do horses) to be at his side to comfort and reassure. Jason would see a building and it would appear to be blown up, buildings appearing on fire, danger everywhere, repetitive disturbing words going over and over kept tormenting Jason’s mind. Jason was fully aware that these images were not real but was very frightened by the persistence and by the lack of control. It was so horrible. Drs couldn’t find the exact cause.  A psychiatric team was brought in to do an evaluation and quickly concluded that Jason was not psychotic or depressed but that his symptoms were organic, an organic change in brain chemistry due to the brain tumours, seizures along with disturbances to the brain caused by radiation and surgery. Jason was given Olanzapine which helped to calm him. The neurologists suggested taking Jason off his current anti-seizure drug Topamax since this drug can sometimes have psychotic side effects. Jason had been on this drug for quite some time with no previous problems. They replaced this with Keppra. This played havoc on Jason’s body and seizures. Keppra did not agree with Jason and the disturbances were still happening unless he was sedated with Olanzapine. Jason was getting very discouraged so Celexa was added to the mix. Despite everything the sense of humour was still there. The medical team were great with Jason and enjoyed our banter. I know they were humbled by Jason.

We went home. Gradually the disturbing images and voices went away. Jason off and on would have ‘head rushes’ along with sweaty palms and racing heart rate. Right away I would think brain stem, the regulator of heart rate and breathing. My constant worry was the ever present threat of the left acoustic neuroma(hearing) tumour growing just enough to put the slightest increase of added pressure to his brain stem causing it to shift and Jason would be in serious trouble. Daily life was very difficult from early morning to late at night trying to care for Jason, 2 teenage daughters and operate an active horse boarding stable.

Jason’s seizure activity gradually worsened over the next few months.Recent EEG video testing showed very high activity. Neurologists stopped the drug Keppra and started Jason on Trileptal.   His balance became very poor, sometimes falling right over and causing injury. My Jason radar was on high alert constantly. After alerting Jason’s neurosurgeon of the drastic change an MRI was ordered. There glowing on the screen was the culprit ,a new tumour, a left temporal meningioma brain tumour. The spinal tumour on the C1/2 also had grown considerably. NF2 had reared it’s ugly head again. Seizures were getting worse. Neurologists stopped the Trileptal and started Carbamazepine and Clobazam. This was the best combination of drugs to agree with Jason. Jason’s neurologist said there was nothing more that they could do here in Ottawa but recommended Jason to be seen in Montreal. We were referred to the Montreal Neurological Hospital(MNI), to the Epilepsy monitoring unit. They would monitor Jason 24hours a day for 3-4 weeks and decide if surgery was possible and safe to give Jason a better quality of life. I needed to get Jason there now. To get in proved to be very difficult, almost impossible. A limited number of beds and the waiting list was long. At the end of my long isolating laneway  I sat day after day at my kitchen table phoning anyone at the MNI that would listen to me. I was fighting for my son. I jumped through hoops, hit road blocks I just couldn’t seem to get the right person who would really listen to me, to want to listen, to help…to try to understand what was happening in this little farm house day after day….UNTIL….the day I wouldn’t back down on this robot type person on the other end and to get rid of me she transferred me to this friendly helpful sounding voice. I knew I had reached the right person, the right office, the office of power and decisions. I explained Jason’s story, my worry and how it was for me and she listened.

“Jason is currently having 3 or more seizures a day. He does not have any kind of aura so there is no warning. Whilst in the seizure Jason is unaware of his surroundings and self. The seizures are very physical, arms/legs flailing and thrashing. He is not conscious of where he is walking, arms swinging out with such strength. Whatever Jason happens to have in his hands when the seizure strikes is held in a vice grip. This is very dangerous at times. I try to hold him from behind , arms around his midbody to guide him out of the way of obstacles and to hold him up if he starts to lose his balance. There are numerous times that I have gone down with him trying to soften his fall. He is a solid 185lbs and it takes everything I have got to guide him out of danger. It is insanely stressful waiting for these explosive seizures to happen at any time of the day. While in a seizure Jason has hurt himself several times in the shower by falling, he currently has bruised ribs from a bad fall last week, had swellings on the back of his head from falling back and hitting his head on the table, he has burnt his hands, while in a seizure he plunged his hands into a casserole that had just come out of the oven and the list of accidents goes on. The brain does not register anything so Jason is not in control or aware of anything. We have stairs in our house and I am very worried about him falling down them when in a seizure. We are constantly on the alert listening out for Jason and knowing where he is at all times. Jason has two younger sisters and they are constantly listening for him and ready to help. We all are. Driving, shopping, being out in crowded areas etc is hazardous. Everywhere is a potential danger for Jason and the worry and anxiety is overwhelming for the family to try to keep him safe. My hearing and intuition has become very refined and sharp.  I have become acutely tuned into Jason’s way of being…his breathing, his swallowing, the sound of his foot meeting the floor, his gait and his ways. I constantly have a radar on Jason so that I can pick up when any one of these functions alters even just the slightest. This is my warning that a seizure is to start right now. This was how it is to try to keep him safe. No matter what I am doing wether talking to the girls,or friends, putting dishes away, laundry..normal house activites I appear (well I think I do!) that I am engaged which I am  but I ALWAYS have an ear on Jason. There are two tracks running constantly. It is like I am running at a high frequency. After the physical part of the seizure subsides then Jason is very confused for about 20 mins. “Is it morning time or night time?” checking his watch. The brain doesn’t register light or dark. I tell him “It is daytime love, 2 o’clock in the afternoon….just after lunch”. Jason checks his watch again. “Oh, ok” “Where’s Mum, where’s Mum?” with a panic in his voice. I say “You have just had a small seizure love that’s all so if you can just wait a few minutes it will all come back to you”. Then he realises it is me, I am Mum and we both have a chuckle. Yes, sense of humour we have. Jason is always very concerned about what happens in the seizure as sometimes he would see the aftermath once he has come too and he feels really bad about it. Jason is the gentlest caring soul I know and he would be shattered knowing all that happens at times. It is a frightening feeling for Jason having no control and no recollection. I decided early on that if Jason is going to be plagued with this I will make it as least traumatic as possible so when Jason is safely sitting after the seizure and is in a dazed confused state I  run around cleaning up any broken items, spilled liquids, righting up furniture etc. I  have about 15-20 mins. before Jason is completely aware of his surroundings. Then everything goes back to ‘normal”.

 

She never interrupted me except for an occasional compassionate sound coming from the back of her throat. When I finished she was so sensitive and compassionate. She got what I was saying, really understood everything and agreed that Jason needed to be seen soon. She would see what she could do and promised to get back to me. I couldn’t believe it she was like a guardian angel. I told her so and I will never forget what she did for me through the years. After I hung up I just wept …such relief and all the frustration and fight was now dissolved. Somebody out there now knew what was happening here and was going to help us.

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…