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.”