Tag Archives: NF2

“What is a DNR?”

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‘I can feel it coming in the air….’ , Phil Collins filling the room. Lovely to see Jason enjoying the concert dvd. His feet resting on the coffee table, slouched sport socks rocking back and forth. Great energy was beginning to build with the anticipation and excitement of Jason’s favourite part of this song, the famed drum roll. ‘I’ve been waiting for this moment all my life, oh Lord..’ , the cue to start getting ready. Air drumming on deck, bated breath, Jason quickly glancing over at me, checking that I was ready….the explosive BA BUM BA BUM BUM BUM BUM BUM…. both of us in sync. Wonderful!  Jason had included this song on the ‘Truck Tunes CD’ that was often playing when we were in the truck. Drum rolls alternating between left and right speakers, Jason drumming slapping his thighs, me drumming on the steering wheel. Sometimes I would go a bit overboard to add an extra spark. Jason would shake his head, whole face beaming, “That’s my Mum!”  as I played it up.

It was such a relief that Jason was now feeling comfortable on the new prescription of hydromorphone. Last week had not been the case. Percocet had rapidly become ineffective for extended pain relief. Messages and calls to Dr. B’s office. My head spinning from their gentle nudge towards palliative care. Catching me off guard. I am sure he mentioned a year. How does the family prepare for this? How does one prepare, for your child to die? How does one prepare, for the agony of watching your other children suffer? Such anguish knowing there is nothing I can do anymore to protect each one of my beloved children, such a lack of control against the harsh realities of tomorrow.

Yes, with the unrelenting force of NF2 raging through Jason’s central nervous system, I had visited the terrifying ungraspable thought, that burying my son was plausible, but it was a damaging territory for me to be in. When trapped in there, it was a dark place, almost like a poison creeping in with the capability of bringing me down crashing. I couldn’t afford to venture into this territory. My children need a strong capable Mum. I need to be a strong capable Mum. I have a horse business to run. Need to source hay for the winter that is upon us. Jason wants to go Christmas shopping. So hard to clear my mind and bring some order to it. Need to just stay in the present.

Today was a good day. Plans were made to go out this afternoon to Jason’s favourite spots. With immense relief, hydromorphone every 6 hours was giving Jason effective extended pain control. Jason was full of life. His foot tapping away, tucking into his second sandwich, Jason was happy, Phil Collins performing his encore set, it was all good. Jason settled down for a nap. Once asleep, I dashed out to tend to the horses. Jason’s sleeping pattern has been changing, now getting up in the night. Behavioural changes are happening. Jason doesn’t remember how he felt yesterday. Each day is a fresh start. This truly is a blessing. Jason is in a great mood most of the time, witty, positive, and determined. Making plans. Jason wants me to set up a meeting with the disability employment worker after Christmas.

Rapid changes were soon to pounce upon Jason again. Jason now needs the hydromorphone topped up every 2-3 hours with ibuprofen in between. Losec has become ineffective for stomach pain. Palliative referral started. Neurological weakness increasing. Traumatic seizures on the stairs. Declining hand-eye co-ordination. Jason needing lots of help with most daily functions. So incredibly difficult trying to get through the demands of the day inside and outside. Instrumental, was the enormous help from my close friend, an amazing support on so many levels. Frightening how fast everything is happening to Jason. Palliative referral still in the paperwork stage. Auditory hallucinations. Visual hallucinations. Confusion. Loss of use of left arm. Ataxia. Palliative papers fast tracked.  A Palliative Doctor on the phone, she lived close by, she needed directions. She will be here soon. Quickly wafting sprays of ‘clean linen’ air freshener in the porch and kitchen hoping to cover up the lingering barn odour from an early morning of mucking. Anticipating the arrival of a Palliative Dr coming into my house triggers intense anxiety. Trying to keep it together; counting the 17 steps as I pace back and forth. Running upstairs to check out of the bedroom window for signs of her car coming up the long driveway. Running back downstairs. Quick check on Jason. Still sleeping. Back to pacing. Back upstairs……Sweaty palms, body trembling. The Dr.is at my door. Sitting beside her at my kitchen table. Jason still sleeping. Trying with urgency to keep my emotions locked down tight in order to competently brief the Dr. Her voice, “…and if he should stop breathing do not call 911” met my ears. Listening to her explain why, was mind altering. Is this really happening? “Have you already signed a DNR form?” the Dr. said. “What is a DNR?” I ask. The answer so heavy and final. Signing the Do Not Resuscitate order…watching the letters of my name gravely appear on the dotted line. The Dr. was a very supportive, compassionate person; had children of her own. I was instantly fond of her and felt relieved that she was here to help Jason and the family. She really got the dynamics of the family. I woke Jason up, introducing this new Dr. as a friend of Dr.B’s. Dr.B. had asked her to pop by. With this approach, Jason would be accepting of her but most of all not be alarmed. Jason had never been open to anyone in the medical profession coming to the house. The Dr. was really lovely with Jason. She treated Jason exactly how I was hoping she would. Jason soon warmed up to her, feeling comfortable with his new Dr., even treating her to a taste of his dry humour. I could tell that Jason was quickly gaining another inspired admirer. She examined Jason and started him on Decadron to reduce cranial swelling and Domperidone for his tummy. Her estimation 3wks-3months. Can’t breathe.

That afternoon Jason was in great form, chatting away with his sisters laughing. I wanted to freeze frame this moment in time and stay in it forever. I felt so much love for them. Watching the three of them; drinking them in, inhaling them in, desperate for this scene to permeate deeply into each and every cell of my body- the sight, the sound, the feel, all to be secured within.

That evening under a clear night sky, the bright moon casting just enough light, I stood filling up the water trough behind the barn. So quiet. Solitude. A hush in the crisp night air. My body crying, wanting permission to physically collapse. A quick glance behind me. My eyes met with the purity of fresh untouched snow gleaming under the moon, beckoning me to rest there. Before I even realised what was happening, every muscle released. Falling, the journey in slow motion, I fell straight back and just lay there. Completely still. Snow up against the perimeter of my body, keeping me snug. Calmed by the organic sound of my exhalation; the white fog floating out of my mouth illuminated by the moon.

Desperate phone call made to the Palliative Dr. after a most upsetting collapse of Jason, bringing us both crashing to the bathroom floor. Loss of upper left side. Hospital bed arrives into the living room. Two days later – Dec.16th, ambulance transport pulls up to the back door. They have been informed, “Where Jason goes, the Mother goes”, as I climb up into the back to be beside Jason. Talking to him. Reassuring him. Jason snoring and unresponsive.

Each day the hospice with the amazing staff became our new home from morning until very late at night at which we headed back to our own beds for a recommended night’s rest. ‘They will let us know when Jason is near the end but meanwhile we need to stay well for Jason’, which I realised and understood. Still never quite sure whether to ignore their well-intended advice. “Expect to be here well over Christmas”, said the Dr. at the latest examination of Jason, late evening of December 22nd. With the added stress of my Mum who had just arrived- swelling in her legs from flying I needed to take her home. The fold up cot all ready remained resting up against the back wall of Jason’s room.

It is the following morning. My cell phone on the bathroom floor rings: I’m in the shower, soon to leave; Kelsey is about to leave her apartment; Siobhan has left her apartment, probably almost there;  Tom is leaving work mid-morning. I answer the phone. The voice, “I am so sorry but Jason has died 15 minutes ago.”

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.”

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

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.

Striving for employment.

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Resume and College diploma now in hand, Jason was determined to find a job. With a list of printing businesses and Jason’s portfolio carefully placed on the back seat, we climbed into the heavy duty 4×4 truck and set off for the city. Internally I was very nervous about this as seizures were increasing in number and intensity, changes were happening, and I was really worried. Keeping this locked within, I looked over at Jason with a smiling excited proud face to match Jason’s face as he looked back at me with a beaming smile. Such a wave of emotion. There he sat so smartly dressed clutching his file wanting more than anything to have a job like a regular guy.

Jason thrived when earning a paycheck. Beginning in his early teens Jason overcame challenges to hold a job in a sports store, a restaurant and then an animation studio. Some of Jason’s summer jobs had been labour intensive; dirty sweaty work, sweeping parking lots and hauling around wheelbarrows brimming with bricks and cement. Jason insisted on doing these jobs despite having just completed five weeks of cranial radiation. How he managed to push that heavy wheelbarrow around in 30C degree heat with depleted energy, poor balance, and generally feeling ill, was a witnessing of unsurpassable determination. As a Mum, to stand by and watch this child battle through his day wrenched every part of me but the stamina and perseverance that Jason had was a force I knew to leave alone, it was his life force. I knew that no matter what was happening, my role was to provide the strength, optimism and encouragement that Jason looked into me for and so at 5am with a big smile I would wave bye to him and wait for my phone to ring. Jason’s power of his mind and determined inner strength was extraordinary …the way he was able to overcome the effects of his illness until he could no longer was the force behind me.

Approaching the city, time was running out for me, I couldn’t put off the inevitable any longer. With my queasy stomach in a knot I had to bring up the dreaded word ‘seizures’.  I’m sure Jason was waiting for this conversation since we had covered everything else on the drive in and maybe he was hoping it would go away. I guess by not mentioning it and ignoring it just for a little while, we could pretend it wasn’t there. But the blatant reality was,the unwelcome presence of these looming seizures was very much there, and they came with Jason. I delicately told Jason that when speaking with the manager it was best to be up front about his epilepsy at the beginning as it would be unfair to the business upon hiring him to not be aware of this until a seizure happened. Understandably he was extremely frustrated. He really hated the fact that these seizures were in his way again. Having to do this really tore into me but Jason did agree and understood the liability. Jason asked if I would tell them about the seizures and so upon meeting the various managers Jason would give me the floor to do my part. We knew that Jason’s epilepsy had a high probability of being a deterrent, as this had happened before.  At the College’s Open House Jason’s work had caught the eye of a successful large printing company. They had approached Jason which was so exciting and they were very interested up until they became aware of Jason’s epilepsy.

Climbing in and out of the truck about 6 or 7 times we worked our way through the list. The Managers at each and every place were impressed with Jason’s portfolio which was wonderful for him to hear. I was thankful how extremely gracious they were to Jason telling him that if any positions became available they would let him know. Upon the closing of conversation they would meet my eyes and silently agree that this determined young man that stood before them was a beacon of profound human spirit. They appeared to be in awe; here they were just going about their day, just a regular day and then Jason appeared wanting to work despite obvious challenges from illness. In this silent exchange I would get the feeling that they were glad that we walked through their doors that day, to have met this inspirational force. As the doors closed behind us, the twinges of sadness settled deep in my heart as I knew what mountains Jason had to climb to be able to walk into those businesses on that day.

Jason was becoming disillusioned; checking every day online for jobs and making calls and nothing…

I took Jason to the Disability Support Work Program office and of no surprise Jason qualified for work placement assistance.  This was a big step for Jason since he had always refused any special help always just wanting to be like a ‘regular’ person. Thankfully Jason warmed up to these people once he realised that this was his chance, they were on his side. They would approach businesses on Jason’s behalf and find an employer that would be comfortable with Jason’s epilepsy. It was a wonderful organization and Jason became at ease with them. They had also accepted my offer of shadowing Jason at a job or hiring a medical person to be with him if this would improve Jason’s opportunities.

Jason was discouraged. The only jobs offered to him were menial jobs… such as stocking shelves or stuffing envelopes. Hearing that and knowing Jason had heard that, caused everything inside me to drop and sink;I was sure my heart cracked. Jason dipped his head shaking it in disbelief. How brutal. I could not protect Jason and buffer this harsh reality. The truth was now staring Jason right in the face.

Little did we know while sitting in that office, Jason was soon to meet his biggest challenge. NF2 had succeeded in rearing its ugly head again. The focus on the job therefore promptly faded into the background.

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.

 

Behind the hospital doors.

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It was clinic day; a hive of activity, high energy, white coats bustling in and out of the examining rooms, children of all ages up to 18, parents (mostly mothers) and lots of support staff all with a genuine demeanor. This was a haven, all of us united by a common thread.

Jason would be examined, weighed, measured, blood work done, and a count taken of his café-au-lait spots (a possible indicator of Neurofibromatosis). We would then wait for Jason’s name to be called by his Oncologist and Neurologist. We would be at the clinic for most of the day. Jason was playing a checker game with his new clinic friend. His friend was receiving chemotherapy while they played the game. He had an assortment of lines connecting him to the various drips. The imposing IV poles were lined up beside them almost like they were peering down on the game. Jason and his friend were playing as if they could be anywhere, just like two regular healthy boys on the other side of the doors would play. Jason appeared to not notice any of this; the tubes, the wires, the beeping monitors, the main line giving his new friend a chance at life. What was wonderful was that Jason just saw a boy, his new friend, someone who also liked to play checkers.

As I nervously waited for Jason’s name to be called I made eye contact with some of the other Mothers. I was searching in them for something familiar, a sign that they were feeling like I did. I then realised that they too, were probably just like me. On the outside they appeared to be poised and brave ready to deal with what will come next, but inside there is such a churning of fear for their children. I am amazed how we can keep going with a certain amount of normality and control, when our whole world has such a threat to it. My thoughts were halted by the nourishing sound of children’s voices and laughter. This is where we get it from; such brave little souls, such troopers. The resilience of these children and their joy of living despite the horrible procedures they had to endure, was incredibly humbling.  When a child having a spinal tap behind a closed door could be heard crying, it was heartbreaking for the Mothers. The children just kept playing, not displaying any reaction to this. It appeared as if they had accepted that this was their world. The head of Oncology once said to me, “These children are born with halos over their heads.” She was right. These children are special children. I was changed on some deep level that day.

Over the many years on Neurosurgery hospital floors, I was privileged to share intimate conversations which would greatly affect me. It was as if we were both there at the same time to come together and have this profound sharing, and then forever disappear. We were strangers with exposed souls, connecting for a short time to help one another. These conversations have stayed with me.

A man whose life was ‘normal’… a career, married, young children, had just been told that he had 3 months to live. Sitting on a chair at the bottom of his bed, I compassionately listened to him. He was so raw and emotional. He was telling me how much was left on his mortgage, so worried about how his wife would manage, but as he was saying it, he realized in that very moment, that it didn’t matter because it would soon be paid off because he would be dead. The stricken look upon his face as he realized this halted my breath. He told me how ironic it was that just last month he was panicking about trying to make the mortgage payment, and now, the whole thing was going to be paid off. He was crying and trembling. He told me about how worried he was for his oldest child, a boy, and how scared he was about his children getting the same illness. He didn’t want to go to another hospital like they were planning, he wanted to go home and die there, to be with his wife and children. I was moved beyond words. I had never been with such raw emotion as it was actually playing out. We were strangers but for some reason this man trusted me with his almost primal emotion and anguish.  When I returned to the hospital the next morning, he was gone. I truly hope that he got his wish to go home.

I felt extremely privileged and changed by meeting this man.

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- 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…