SHANE’S STORY
‘THE KILLER WHO ROBBED ME’
27th of December, 1966, Shane Douglas Crowe was born in Queensland, Australia. He grew up in Inala, a southern suburb of Brisbane.
1982, at 15 years of age, he was diagnosed with a grade 2 cerebellar astrocytoma brain tumour, at the Princess Alexandra Hospital ( P.A.) Brisbane. He had a shunt put in to drain excess fluid from his brain and a week later the malignant tumour was surgically removed. Extensive treatments of radiation therapy followed and rehabilitation to help him function again. He was left with some disabilities such as some co-ordination loss, and slowed speech. Radiation therapy left him with a large bald patch across the back of his head. The rest of his hair was thick, so he was able to grow it down and it would cover his ‘airport strip’ as he would call it. He was always self-conscious of his hair. He was put on a disability pension and had to report to his Neurosurgeon at the P.A. Hospital for yearly checks.
1993 he moved to Kingaroy permanently (2 ‡ hour drive north west of Brisbane). This was when I met Shane. He began studying the Bible and wanted to make changes in his life. We both progressed in our new found faith and overcame a course of drug and alcohol abuse and heavy smoking. Neither of us regretted cleaning up our lives and we never had the desire to return to our former course.
17th of February, 1994, we were married at a civil ceremony, and made our home in Kingaroy. During our married life, Shane achieved many things. He enlisted with Jobmatch in Kingaroy (an agency finding work for people on disability pensions). At his first interview with the agency, he told them he wanted to be the breadwinner and get off the pension. His first job was mowing and gardening once a week at the local squash courts. It wasn’t too long and he was placed in a full time job with a mowing and cleaning business.
1994, Shane visited his Neurosurgeon at the P.A. for his last checkup. He was given a clean bill of health and didn’t have to report back to him unless he ran into problems.
Late 1996, the job with the mowing and cleaning business ended. Around this time, Shane achieved his drivers’ license and loved the freedom of driving on his own.
Early 1997, another job came straight up with Metaland. This job required more thinking from him, as he was having to cut metal to precise measurements. Around the middle of the year, he started making measuring mistakes and he couldn’t work out why. Because of his medical history, his bosses and Jobmatch, asked that he get checked out. A local Doctor ordered a C.T. scan which showed no new tumour. He had his eyes checked and was supplied with glasses. Unfortunately he was terminated from this job as he was still making some mistakes. He had given it his best shot.
Early 1998, we shifted in with Mum as we had to go back on the pension. She was on her own and worked full time, so it worked out O.K.. A new job cropped up a few weeks later in March. This was 3or 4 nights a week with a cleaning contractor at the large Woolworths Supermarket. Shane really enjoyed this job and the change of pace to night work.
July 1998, tragedy struck our family, as we learned of the death of my only brother from a heroin overdose while he was holidaying in Thailand. He was only 27 years old.
End of 1998, the cleaning business that Shane was working for also took on the trolley collection contract with Woolworths. Shane was given extra work during the day as supervisor.
EARLY SYMPTOMS
Dawn of 1999, I wondered to myself what the year may hold and if we would lose anymore family members in death. The stress of 2 jobs was now just too much. Shane was getting bad headaches and feeling exhausted. So he dropped the night work and concentrated on the trolley supervising. He made many friends in his work and was always happy go lucky. He was a real source of comfort for me and he always made me laugh. He was a fan of ‘U2’ music and you could hear him coming in the car before you would see it. It was his infectious personality and the fact that he could laugh at himself, that I am sure helped him face the dreadful few months that now lay before him and the untimely end to his life.
17th of February, 1999, we celebrated our 5th and last wedding anniversary. Shane was now becoming aware of a dizziness and disturbances of his eyes that he couldn’t explain. He was feeling off balance. We went to a local Doctor who prescribed antibiotics in case it was a middle ear infection. They didn’t work and Shane became anxious that it was another tumour. I rang the Doctor back and asked if a C.T. scan could be arranged and it was ordered immediately. The results were clear, no tumours. His symptoms didn’t improve. Visual disturbances were worsening and he wasn’t judging distances well. He was afraid he might injure someone in the course of his work.
2nd of March was the last day Shane worked.
6th of March, he vomited for no apparent reason while showering. Later that night while going to the bedroom, his judgement was so bad that he was running into the walls down the hallway. He said he didn’t feel well. I rang the hospital and they said to bring him straight up. The hospital Doctor came and seen him. He checked out his walk, looked in his eyes and took his temperature and blood pressure. He got in contact with the Neurosurgeon at the P.A. (Brisbane) and they felt it wasn’t serious. He was released from hospital 2 days later. We now headed for Brisbane to see if we could get a private appointment with a specialist. We phoned a number of places but we couldn’t get into any of them immediately. We then decided because the C.T. scan was all clear, the problem must be in his eyes. We next went to an optometrist and had his eyes checked. Shane felt that the lens they used on his eyes helped a lot and would solve the problem. He would receive his new glasses in a few weeks time. Shane had to now get a Doctors certificate to be granted his sick days, holiday leave and get a clearance to be able to go back to work. We went to our private G.P. (doctor) who was in a nearby town. He was more experienced and was familiar with Shane’s medical history. He felt his symptoms were unusual and that he should be in the Neurosurgeons care at the P.A.
23rd of March. He was admitted to hospital in Brisbane for a week. They did bloodtests, an M.R.I. and co-ordination observation tests. The Neurosurgeon felt it might be a grease and oil change of the shunt (it was 17 years old). The M.R.I. was all clear and it appeared the shunt was working well. They felt it wasn’t life threatening. He was released and we headed for home. Unfortunately we only got about 3 kilometres up the road and we were involved in a 5 car pile up (not our fault). Now we had no car and it was a 7 hour wait to get the bus back to Kingaroy.
RAPID DECLINE
30TH of March 1999. Over the next 3 weeks, Shane started to decline rapidly. He became very depressed and suicidal. His speech was slurring badly, he had continuing loss of balance, rapid eye movement (nystagmus), squinting from unusual brightness, some aggression toward me(so unusual for Shane). He had problems getting to sleep at night (restless legs). When he was asleep, I noticed twitching and tremors in his muscles and limbs. He began feeling a sensation of heaviness in his head which started to nod (we thought that this may be from the accident).
12th of April 1999. We caught the bus to Brisbane for an arranged appointment with his original Neurosurgeon. He told us that Shane’s symptoms were baffling surgically and medically. He felt that Shane had previous setbacks and it was something his body would get over. We walked away disappointed as we were desperate for answers.
19th of April, I needed to assist him in walking. We went back to Brisbane by bus at this time, to pick up our car. Shane was having a lot of pain in his neck, so we called in at the P.A. emergency outpatients, while we were there and he was prescribed Voltaren for whiplash. We now left for home in the comfort of our own car. It broke down half way and we waited for 4 hours for roadside assistance (RACQ) to come and tow us home.
22nd of April we went back to our private G.P. because the whiplash was getting worse. He took Shane off Voltaren and put him on Brufen and Valium. At this consultation our doctor arranged for an eye specialist to check him out.
23rd of April we attended the arranged appointment in Kingaroy with the visiting eye specialist. Shane was walking with great difficulty now. His eyes tested perfect and the specialist was sure it was an inner ear problem.
27th of April, Shane had a phone call from his cousin and she couldn’t get over how bad his speech was. She could barely understand him. She felt scared and got me to ring the ambulance, which I did. He was put in Kingaroy hospital again. The hospital doctor felt it was a blocked shunt, however he was released the next day. I began a search for myself on the computer at the public library, researching problems of the cerebellum and the nervous system. I felt something was triggering that area of the brain for him to have cerebellar symptoms. I rang our private G.P. for another appointment but he was away for a week. In the mean time, I took Shane to see an iridologist/naturopath, to see if she could see new tumours. She told us that Shane showed some signs of weakness in the cerebellum but no tumours. The significant thing that showed up was that his nervous system was shot to pieces. She felt she could help him with acupuncture over time. We didn’t proceed with this treatment as it was costly and we didn’t have time. If I left Shane alone in the car to pick up a few things at the shops, he would lock himself in, he had the feeling of not being able to defend himself. He was having a lot of difficulty lining food up with his mouth. He could no longer write and he developed a funny down turn in his left hand. Shane was having falls and his care was becoming almost impossible for me. I went to the Community Health Centre and they were able to loan us a walker on wheels and with handbrakes. It served it’s purpose for a couple of weeks.
5th of May. We got to see our private G.P. He was astounded at the rate of deterioration within 2 weeks and wanted him back at the P.A. as soon as possible. He admitted Shane to the public hospital here in Kingaroy with a letter for the head doctor, to have him transferred to Brisbane. We had to wait another 2 weeks as the P.A. felt it wasn’t urgent and his Neurosurgeon was away. During this wait, Shane went into a wheelchair, he could not even stand anymore, his speech was very slurry and he was acting silly. We thought it was from valium. He lost the ability to feed himself. I spent all my time at the hospital helping to bath and feed him. His spirits were high through all of this and he could still laugh at himself and make others laugh too. If anyone came to visit him, the nurses would tell them to go where the party is. The Kingaroy hospital doctors’ diagnosis was worsening ataxia. In my anxiety, I felt Shane should be in Brisbane sooner, so I went to the local member for parliament to see if she could push things along. She said she could. I felt it was a matter of life and death. But I backed off this course as I was lead to believe that it may jeopardize Shane’s medical care. I didn’t want Shane to suffer because I was a bit of a hot head.
BACK TO THE P.A. (FINAL STAGES)
17th of May 1999, we were finally transferred to the P.A. by ambulance and arrangements had been made to accommodate me at a near by motel. He was under a team of 3 Neurosurgeons and they said that if it didn’t turn out to be a surgical problem, they would look microscopically with the help of the Neurologists. He was taken off brufen and valium (brufen thins the blood and he may of had to have an operation). He was prescribed panadol for pain.
18th of May, a Neurosurgeon came around and explained that they had decided to operate and place an intercranial pressure monitor (I.C.P) on his brain to get data on his brain pressure. Also at this time, another Neurosurgeon suggested that Shane had dementia from radiation damage and he was nursing home material. I was very upset at hearing this. I felt that dementia was something old people got, not a healthy 32 year old.
19th of May, the operation was successful and Shane was moved into critical care under close observation. I was noticing that Shane was having lapses of unawareness but his vital signs were all good. He was now keeping a constant clutch on the sides of the bed and stronger spasms (jerks) were setting in. He told us he felt like he was falling, even though he was flat on his back in bed. He could no longer sit up and was lying awkwardly. I was very emotional this one day and I begged Shane not to leave me and to get better. He said ‘don’t worry, I’ll get better’. I asked him if he was afraid to die. He said ‘No but I’m afraid for you’. I thought, you are such a darling, you are still worrying about me on your sick bed. I told him, ‘I love you more now than I ever have’. He smiled and said ‘he would except whatever came’ He was so brave.
22nd of May, the head Neurosurgeon, visited to check the I.C.P readings. We helped Shane sit up and the pressure in his brain fell quickly. His doctor said it was very unusual and felt the fluid was draining from his brain too quickly. He said also that 17 years was probably a record for a shunt. I begged him to operate, Shane had nothing to lose, he had no quality of life this way. We all felt it may be the shunt. He left to discuss it with the other doctors. Later that evening a Neurosurgeon came back to us and told us what they had decided to do. They would now give him a local anaesthetic and cut down to the shunt in his shoulder region and clamp it off. Shane felt a bit anxious about this but he remained calm. He was then x-rayed to see if the clamps were in place. They were expecting the pressure to build up and this might indicate that he might need to have the shunt replaced. They watched the pressure over the next few days. Nothing happened and his pressure remained low. He was having hallucinations and sometimes he would sing.
25th of May he had a very bad jerk that almost threw him out of the bed. He was clutching so hard on to the end of the bed, it took 3 nurses to release him. Also that day, the I.C.P monitor fell out when the nurses were sponging him. The Neurosurgeon returned around midday and opened his shunt wound to take off the clamps. Later that evening, he returned and asked me if I felt that Shane’s condition had improved or worsened since the clamps were off. I really appreciated being able to express myself. I told him that I felt his condition was worsening by the hour and that he was getting more confused. They thought they might put him into surgery that night and do the shunt. He was put on nil by mouth just in case. The doctor returned a little later on and he stood back and looked at Shane for awhile. (I think that is when the Neurosurgeon worked it all out, that Shane might have a deadly microscopic brain disease). He didn’t tell me at that stage. He said they would get Neurologists in to look at him. The only problem was that they were all at a week- long conference. It was decided in the mean time to do another M.R.I., a spinal tap, an E.E.G. and a brain biopsy. I went back to the motel to ring mum to come down to me as it was getting too stressful. The tests didn’t go ahead that week. Shane had a catheter put in because he had not passed urine for 24 hours and he had not moved his bowels for days. He would tell mum and I that he felt excellent. We were baffled.
6th of May, he was moved out of critical care and into a normal ward. Now experiencing severe jerks, sometimes he would lurch forward aggressively and grind his teeth at me. He was only semi-conscious and could no longer swallow or communicate, except for a groan. His arms were tied to the sides of the bed as they had been so bruised from a week of uncontrollable spasms (myoclonus).
27th of May, a Neurologist came and looked at Shane and told us he was having a couple of different seizures and turns. He prescribed anti epilepsy medication and said he would be up and walking again. I was so excited and when I told Shane what was said, he cried. A few days went by and there was no expected improvement. It was obvious to us that whatever it was, it would be hard to fix. I was worried about extensive brain damage. The medication only helped a bit with the myoclonus.
THE DAY MY WHOLE WORLD CRUMBLED
31ST of May 1999, and all the Neurologists were back. Mum and I got to the hospital early to catch the doctors rounds. The Neurosurgeon came along first and told us Shane was scheduled for an E.E.G that day and was booked for another M.R.I and a spinal tap at 9.00a.m. the next morning. A little later on, 2 Neurologist came and introduced themselves. I was asked to briefly relate Shane’s history and one of them said to me ‘have they told you about the virus’. I said ‘what virus’. ‘Well we feel Shane won’t recover’. I burst into tears and he immediately invited mum and I to his room. We were in horror as we heard the words, ‘We feel Shane has Cruetzfeldt Jakob Disease, have you ever heard of it?’. No we had not. He said ‘have you heard of mad cow disease?’. The terrible images of the poor cows in England with this disease flooded through our minds. He stated then that Shane would of contracted this disease from brain mater that was collected from cadavers (dead people), to make the dura graft that was placed on his brain, after his tumour was removed, 17 years ago. It has a long incubation period. He said ‘No-one has ever survived, it is very rare, there is nothing we can do, Shane will die in a short period of time. You have seen how quickly he has deteriorated!’. Mum and I went back to the motel, to let what we just heard sink in. I sat on the bed and said ‘Mad cow disease, it all makes so much sense’. I thought about how those cows were falling all over the place. I was full of fear for him. I just wanted to run away, but I thought no matter where I went, that fact is Shane is still in that hospital having to face this, I was scared as I had never seen anyone die before, let alone face my own husband’s death. I then made a firm decision to make every last minute precious with him. A family meeting was organized for later in the day so that Shane’s parents and grandparents could hear the diagnosis from the hospital. The Neurologist told us that Shane’s E.E.G performed earlier in the day was very abnormal. I was quite angry by this stage. I asked the Neurologist if they had consent to use material from dead people (it sickened me). Shane and his parents never knew that this procedure was used on him. However they told us that it was the standard procedure back then. I know the doctors acted in good faith and I have to give them credit that they had cured Shane of his tumour and given him an extra 17 years of life. In this world, nothing is truly life saving but more correctly it is only a temporary extension of life, we all eventually die. Shane was taken for an x-ray that same night to see if he had developed aspiration pneumonia, (he was to have an anaesthetic the next morning). The Neurosurgeon met with mum and I again later that night. He told us it was the worst possible scenario, he was hoping it was radiation damage. We asked him why he thought it was Creutzfeldt Jakob Disease. He answered ‘the dementia and the jerks’. He also explained when Shane finally passed away, it was government policy for an autopsy, to have his brain and possibly his spinal cord removed for research. I was left with the decision of whether to feed him through a nasal tube or not. I also wanted him transferred back home to Kingaroy to die.
1st of June 1999, Shane went under a general anaesthetic (because of the jerks) and had another M.R.I and a spinal tap done. They felt there was a risk of Shane not surviving this and in a way I was hoping he wouldn’t. He came through it O.K.
3rd June, Shane and I were brought back to the Kingaroy hospital by ambulance. The trip was very unpleasant as I had motion sickness and Shane freaked out badly on a couple of occasions at a yellow bag that was in the back with us. It was very hard to calm him down and reassure him that it was O.K. When we arrived, he was placed in an isolation room on his own at the end of the hall. I felt insecure for him and it was so quiet after the hussle and bussle of the big city hospital.
10th of June, Shane’s nasal feeding was all pulled out and on the floor. I wondered whether it was worth cruelly putting it back in place. Shane had an advance medical directive that stated no artificial feeding if it inhibited his natural dying process. The doctors and I decided to leave it out and do nothing. By this time, he was only responding to noise and touch. Also, I felt he may have gone blind as he was having no preservation response.
12th of June, he had a very high temperature. The 3 times I visited him that day, I found him face down in the pillow. His hands were clenched across his chest and the jerks had caused him to scratch himself badly. There was no urine coming through the catheter anymore, just blood and mucous. He had wasted badly.
13th of June, I called to visit him about 8.30am and I was surprised at how peaceful he was. The nurses gave him an early bath and he looked so clean and comfortable. I left and returned at 12.00 midday, to find that he had developed rapid breathing and this distressed me. His temperature was very high. I went home and got mum and we returned around 2.00pm. Two nurses were in with him when we arrived. They said ‘we feel he hasn’t much time now, can you see how his lips and around his hairline is starting to go blue’. I got in touch with 2 of his sisters who wanted to be with him when he died. Fluid was developing in his lungs which sounded terrible. The nurse said she could suck it out, but it would only prolong the process. Over the next 8 hours we sat with him as his body became very cold and clammy and his breathing more and more erratic. Towards the end, bile was coming from his mouth. This was very distressing for me.
14th of June, 12.20am, Shane breathed his last few final breaths. Then there was nothing more. A rapid change of yellow swept his grey/blue face. The nurses laid him out straight and put his hands across his chest, pulled the covers around his neck and placed a flower on him. Everyone was crying, but at the end of it all, Shane looked in so much peace. It was incredible after the weeks of jerking that he had been through.
15th of June, I got a phone call from the Neurosurgeon at the P.A. He wanted my permission to take parts out of Shane’s body. I said to him ‘take what you need, to understand this horrible, horrible disease’. He also gave me the results of Shane’s last tests. The M.R.I. was still proving all clear, but the spinal tap tested positive to protein. That was 10 days before he died. I am very hurt that such a cruel disease could have robbed me of my wonderful husband and very best friend. As a doctor said to me through my e-mail, ‘you will agree that this disease is only fit for the likes of Adolf Hitler’.
Hopefully through any research done on Shane’s brain, the medical profession maybe able to diagnose this disease earlier for their own protection.
To my dear Shane,
You are truly irreplaceable and precious to me. Sadly missed while you lie in peace.
Goodbye Sweetie.
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