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Conor His Journey His Journey | |
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25th of October 2011 - I have not come back to writing the rest of Conor's Story for a long time now. Life and work got in the way and also finding the emotional and psychological strength to continue it has proved elusive most of the time. However, I intend now to begin writing again and over time Conor's Journey will eventually be complete and so he can then rest at peace with me. ...Blessings, Vivien Well, time passes and soon Conor was growing up and had started school. At first, like most kids, he was mad about school and then he decided that he had had enough and didn't want to go anymore. He would tell me that he missed me when he was in school and hated me going to work. Conor was too young to understand at the time that I had to go to work and that I had no choice in the matter. Mind you even as he got older his attitude to me working never changed. I longed for the day that I could give up work and stay at home with him but how on earth could I do that? The years went by and suddenly Conor was growing into a nice young boy and heading rapidly towards his teenage years. He began to be more aware of himself and was beginning to really develop his own personality with his own opinions and beliefs. He was more understanding of me having to work but still stressed about me not being at home. He wanted me to bring him to school and collect him like his friends mothers did. At this stage my next door neighbour and very good friend was minding him for me and it was quite like a home from home. Her two sons were also best friends of Conor's so during those years life certainly settled into a more relaxing routine. However, I was still seeking a way of staying at home and being there for my son. In July of 2006, I handed in my notice in work. I had enough money set aside to last me for 6 months and in that time I was going to set about opening my Reiki and Tarot Practice. I had decided that I would write a Tarot Course and start teaching. I had lofty ambitions and plans and was quite excited by the prospects of it all. There was a heat wave that summer and I remember the wonderful sense of freedom in being able to enjoy it. Conor was out on the street from morning till night. I delighted in feeding lunch to groups of his friends on the decking or bringing picnics out to the green. He played football with his friends and was becoming a decent goalie. I was able to partake in all of this and be part of his everyday life. Conor revelled in me being at home and he seemed so much more relaxed in himself. Life drifted along and soon it was time for the kids to go back to school. Conor was so happy that I was there to drop him off and pick him up. He was also over the moon because his teacher that year was Mr. Dunphy who all the kids claimed was cool. Mr. Dunphy at that stage, had no idea of the impact he was to have on Conor's Life in the coming year and throughout Conor's illness. From September of 2006, Conor ran into school every morning, eager to learn and eager to tell Mr Dunphy what he was up to or any news he had. Mr. Dunphy also played the guitar and at this stage Conor had become interested in music and hooked on the Drake and Josh show on Nickleodeon Channel. Drake Bell is an actor but also a gifted musician and he played in a band on the show. Conor, found an idol in Drake Bell and was determined to learn to play the guitar and be in a band. He also had a big thing about Oasis and especially their song Wonderwall which he could sing from beginning to end. The Oasis Album had been mine and the song Wonderwall a big hit the year I was pregnant with Conor, 1995. I must have played it a lot then and probably Conor became familiar with it while still in the womb. He often took my Cd into school so that Mr. Dunphy could show him how to play a few chords of it. Conor blossomed during that year and his schoolwork improved immensely. He had me at home and was happy in school. Life was certainly beginning to settle down and for the first time in years I could see a light at the end of the tunnel. Christmas came and went and before we knew it we were in 2007.
The Arrival of Symptoms It was around March of 2007 that the headaches started. At first they were very isolated and so I didn't worry too much. I put them down to a bug or a virus or just been tired. The headaches would come and then he would lie down for a while and rest. He would then go back out to play later on. It was when the strength and frequency of the headaches suddenly changed I began to pay more attention to them. Conor would be fine and not a bother on him outside playing and laughing. Suddenly he would be banging on the door and when I opened it he would practically fall in the door holding his head and be grey looking in the face. The headaches were strong and all he could do was lie down. He seemed to fall asleep once the headaches passed and was often out cold for a couple of hours at a time. The next change came when vomiting started to accompany the headaches. Again the headache would strike out of the blue and he would be so sick. On one occasion we had just arrived at the local swimming pool with his friends and after changing into their swimming trunks they all excitedly jumped into the pool. Conor was a good swimmer and always preferred to swim underwater. On that occasion as soon as he jumped in he swam to the bottom and made his way down the length of the pool. I had only just reached the poolside bench when I saw him hanging onto the metals steps. I knew something was wrong. He looked awful. I immediately went over to him and asked if he was okay. He could barely speak. I tried to get him out of the pool as I just knew he was going to be sick but there wasn't time. Conor threw up into the pool. I was mortified. He managed to walk back into the dressing rooms and the pool had to be closed down for the rest of the day. In the dressing room he lay on the floor and fell asleep. I had to dry and dress him where he lay. By the time we got home, Conor was fine again and looking for a pizza. I was not fine though and whereas these headaches were not happening every day I was no longer content with the cause of them being virus related. A virus should have been well burnt out of his system at this stage and no one else in school seemed to be suffering like Conor. I believed, like so many of us at that stage that what Conor was beginnng to suffer from was Migraine. I have had bouts of it over the years and a couple of my sisters were particularly afflicted with it. I decided to take him to the doctor.
The CT Scan We arrived in Tallaght on time and Conor had to have dye injected into him so they could get a better view of what was going on in his head. The scan was over in minutes and before we went home I was given an appointment to return the following week for the review clinic where they discuss the results of the scan. During the following days, Conor had more attacks or strikes as he used to called them. He was missing more and more school and I was beginning to think he was playing up and using the headaches to get a day off. On the day of his review clinic I sat in Tallaght Hospital very anxious. I know everyone had told me that if anything turned up they would have contacted me immediately but I was still nervous about what they would find. My fears were unfounded it turned out. The scan had come back completely clear except that he was suffering from blocked sinuses and that was the probable cause of the headaches. I was told that the ‘biggies' had been ruled out and when I asked what the ‘biggies' were I was told they included, brain tumour, brain haemorrhages or brain disease. Phew, what a relief. We sailed home and stopped in the local pharmacy to collect different nasal sprays that had been prescribed to treat the sinus problem.
No Improvement Conor could barely walk and it took me a while to get him back to the car. He vomited twice on the way back and when we got home I just put him straight to bed where he went into a deep sleep. When he woke later he went ballistic. He threw chairs around his room, roared and screamed and kicked the door. His day had been ruined and earlier he had been too sick to realise the full impact of it. It was only after his sleep and when he felt better that it dawned on him that he had missed out on 90% of the day's activities. He blamed me, he roared at God and even laid blame on the fairies for ruining his life. I just stood and let him rant and rave because he had a right to be angry.
Back to The Hospital - A&E Again Another 4 or 5 hours of sitting in a hospital and again sent back home with some other explanation. They did run through the neurological tests again with him and took more bloods but still kept harping back to the fact that the scan had come back clear and so had his earlier bloods. They did mention the possiblity of migraine but said they would wait to see what happened when the sinus problem cleared up. We were now into the beginning of June at this stage and Conor's headaches persisted. They had become more frequent and so had his choking. His speech was definitely slurred. Within a short time more symptoms began to manifest. Conor started complaining that he couldn't go to the toilet. He said he wanted to go but nothing happened. He was very upset about this and got very stressed. Around this time I noticed he was beginning to look odd around the eyes. He developed the appearance of someone who was either very drunk or heavily drugged. He also started to stagger, especially when he got up in the morning. These more recent changes came on in a matter of days. Conor was barely in school at this stage and unable to go out on the road.
A&E Yet Again - Admission to Hospital The next morning Conor was violently ill. He couldn't lift his head off the pillow or even walk. His head was exploding and he was vomiting. By the evening he felt better and I couldn't get the feeling out of my head that the loud noise from the band had had a bad effect on him. He had been reacting strongly to sudden loud noises in recent days and it was beginning to dawn on me that strong vibrations caused by loud noises, jumping or running or even talking loudly may be connected to or possibly trigger the headaches. It just had to be brain related. On the Monday morning I made an appointment to see an eye specialist in Naas. Conor wore glasses and eye problems can cause severe headaches so I decided to run down that line of investigation. If his eyesight had suddenly deteriorated, then it might be responsible for his condition. It was my last hope. I also made an appointment to see the principal of Conor's school as he was barely attending anymore. I was concerned he would be reported to the department of education if his total absences exceeded twenty days In the principal's office I broke down and told him I was very concerned; that I knew there was something terribly wrong but no one would listen to me. I expressed my concern about all the school he had missed in recent months. The principal was so kind and supportive and he told me to go back to the hospital and not to leave it until I got some answers. I had already planned that and a holdall in the car packed with clothes and toiletries for both Conor and myself. I then brought Conor to the eye specialist and he said although he couldn't find anything wrong with his eyesight, he explained that what Conor was describing as double vision was bang on and that he didn't doubt the child was seeing double even though he had no evidence of it from his examination. He recommended I take Conor back to the hospital as something was wrong. I walked Conor back to the car. He could barely walk and was staggering. I drove straight to Tallaght Hospital and into A&E where we sat for another few hours waiting to be seen. Eventually we were called and when the doctor looked at his file she appeared a little exasperated. Yes, we were back again and me, yet again saying that something was wrong. Yet again they harped back to the darn clear CT Scan. Begrudgingly she ran through the neurological tests with Conor, making him walk up and down or should I say stagger up and down and waving a pen or finger in front of his face. She looked into his ears and said ah! She had found the culprit for all the symptoms. She expertly announced that he had a substantial build up of wax in his left ear. I glared at her flabbergasted. "You mean that wax has been causing the headaches, the vomiting, the loss of balance, the double vision, the choking and the slurred speech?" She brusquely told me that she would prescribe some drops for his ears and if they had no effect to come back again the next week. It was then my most primordial instincts took over and I knew from that moment that I was going to have to fight for my son. I stood rigid in the examination room and said out quite loud "there is something terribly wrong with my son and you are all missing it". I began to cry with distress and upset. I told her that I had a packed bag with us and that we were not leaving. The doctor became a bit nervous and was probably wondering if I was going to pull a knife on her or something. She got flustered and told me she would get someone for me. She ran from the room and later returned to inform me that the consultant who had organised the scan was doing her rounds in the hospital and that she would be down to see Conor when she was finished. Until then we had to sit back out in the waiting room. It seemed like hours before we were called back in again. The consultant again forced Conor through his paces with pen and finger waving in front of him. She resignedly agreed to admit him due to the fact that I was so upset and insistent. We were sent back out to the waiting room and told we would be called when a bed was available for him. I felt better. I knew that once he was admitted they would make further investigations in an effort to get him discharged as quickly as possible.
Will Anyone Take us Seriously? As the days followed the level of investigation became more focussed on me. It had been discovered that I was a holistic therapist and as a result, was questioned intently on whether I had been slipping my son strange potions or herbs. I explained that I was a Reiki Healer and that it was a hands-on- healing system only. Most of them had never heard of Reiki before or at least pretended they hadn't. They still didn't buy the fact that I was not guilty of drugging my son with some witchery medicine. They seemed desperate to find me guilty and so name and shame me. Then there was the occasion were the social worker wanted to see me alone and again I was questioned as to whether there were problems at home I was trying to escape from by booking me and my son intoTallaght Hospital. She nicely and considerately asked me if I was suffering from depression. When I asked her why she might think that, she kindly reminded me that I had been seen to cry in A&E. I couldn't believe it. They all believed we were making it up either to escape violence or to get attention. Gritting my teeth I explained that the reason I had cried was that I was at my wits ends with my son's condition; that I believed there was something seriously wrong and that they were all missing it. To give her credit the social worker seemed to look confused and very concerned. She told me that she was probably more unbalanced than I was. She said that she would be informing the medical team that I was very sane indeed and that I really believed my son was very ill. She acknowledged that mothers naturally have a sense about these things and that any concerns should be taken seriously. She advised me to be persistent with them.
The MRI - Diagnosis I had to pop home that day and I was counting on the neurologist coming to see Conor before that. No one could give me a definite on when he was due to arrive so I just had to wait and see. By evening there was no sign of him and my niece Julie was due to sit with Conor while I dashed home. The neurologist of course arrived as soon as I left. However, Julie was able to deal with him and asked him all the relevant questions. When I arrived back at the hospital later I was told that he was scheduled to have an MRI of the brain either the next day or after the weekend. Friday morning arrived just like the rest of the week. Conor had been up during the night with headaches and vomiting. We did the normal things one does when you have to sit in a hospital room all day. We watched television and I read my book. Conor slept from time to time, his headaches coming in regular and constant strikes. It was, I think early afternoon when a nurse appeared in the room. Apparently there had been a cancellation and they now had a window of opportunity to take Conor. I think the idea behind it was to get him out, discharged and the bed back by the weekend. The nurse came back with a wheelchair and we headed down. I had to sit outside during the MRI. I flicked through magazines while I waited. Eventually Conor was wheeled back to me and we returned to the ward. He was getting very cranky with the nurses at this stage and fed up with all the fingers and pens being waved at him. He was a typical man, a terribly awkward patient.
We mustn't have been back in the room no more than 20 minutes when a nurse arrived and said the doctor wanted to see me. She spoke in hushed tones as we went down towards the nurse's station. I noticed all the nurses staring at me and then caught sight of the medical team sitting in one of the private rooms. Everyone rose as I was ushered in and a chair quickly found for me. I can't even remember the doctor's name but he was a man of about 50, tall and distinguished looking with greying hair. He looked troubled and stressed and I could see he was struggling. I knew they had brought me in here to give me bad news. I became a little detached from myself and seemed to witness the next few minutes as if I was looking in the window at it happening to someone else and not me. In the end he just got on with it. A nurse sat closely to my right, I suppose to catch me should I faint or go hysterical. "Conor's scan is back and it's very bad I'm afraid" he stared straight at me. "What do you mean by bad?" I asked. He then proceeded to tell me that they had discovered a lump, a tumour on his brain, the brainstem to be precise. It was in a very difficult place which meant it could not be operated on and removed. He said that they were in no doubt that it was malignant. He just kept repeating that it was "very bad" and that there was "nothing they could do". I asked if he was going to die and he just nodded slowly. I just sat there, the nurse eyeing me in terrible concern. I felt my body go cold and the nerve endings on my scalp electrify. My heart pounded in my chest and I felt terribly weak all of a sudden. I held it together and questioned the doctor about his options. There were none he said but then again he wasn't oncology so he didn't really know for sure how they were going to treat him or even whether they would bother to put him through treatment under the circumstances. He explained that they would make contact with Crumlin Hospital and arrange for us to be transferred to the Oncology unit there as soon as possible. In the meantime they would liaise with Crumlin as to whether he should be started on medication such as steroids to calm his symptoms before his transfer. He asked me if I would tell Conor? Tell him what? That at 11years and 3 months he had no future and that he was going to die? I didn't' think I would be giving him that exciting bit of news. Were they mad or something or just sadistic? The team got up to leave but as the consultant went through the door he turned to me and said "you were right, you were right all along". He then took his tragic looking team and left . They obviously hadn't been expecting that outcome. The nurse held my hand as I rocked back and forth. My head was racing and I couldn't think straight. My wild imagination was conjuring up images of coffins and my child dead and what he would look like and how it would be watching him die. I just couldn't go there so I shut it out. I don't know if I was even crying at that stage. I can't remember. The nurse asked me if she could call someone for me. I told her my sister Vanessa was on her way with the kids to visit and that I would wait for her. A while later I saw Vanessa through the glass been escorted by a nurse. She looked frightened and like me, knew that something must be terribly wrong if they had organised a nurse to sit and mind her kids with Conor while she was taken to see me in a private room. All the nurses were speaking in hushed tones on the ward respectful of the terrible news that had visited one of their patients. You couldn't help but know that things were not right. Well of course Vanessa fell apart when I broke the news. Like me, it was just too much for her to take in, in one go. It was unreal and shocking. We sat together horrified and scared. The coming days and weeks absolutely terrified me. How was I going to do this? My son, my beautiful son. No, it was not happening. It was all a mistake, they will discover something that they can do. They had to. The alternative was too horrifying to contemplate. After all they weren't oncologists so they didn't know everything. Once the experts got on board they would know what to do and if they didn't, then I would just take him somewhere were the did.
The news had to be broken to family so I was left to phone them. You can imagine how it was received by everyone. It is the worst nightmare to be told that a child is dying, a child that is so full of life and has his whole future ahead of him. I warned all the family that on no account was anyone to visit if they could not keep it together. Crying in front of him was forbidden. I decided there and then that the only way to save Conor was to stay positive. I was not going to tell him the full facts of his condition. Yes he would know he had cancer but not that it was going to kill him. I refused to take hope away from him, away from me. If he knew the worst he may just give up and let it take him. I was not prepared to let that happen. I was going to fight for my son and help him to fight too. Vanessa and I collected ourselves and walked back to his room. Taking a deep breath I opened the door and put a big smile on my face. This was just the start of our personal holocaust, our trip into the pits of hell our macabre nightmare. Nothing would have prepared me for what the coming months had in store for my beautiful son. The cancer was to rob him of everything he held dear. It would be savage in its attack on his body. It would show him no mercy. As a mother, I was to bear witness to my young son's horrific demise. Powerless but determined never to give up on him. I would bear witness to the very end. I would walk every inch of the way with him for he was my flesh and blood and still my baby. I would become like a tigress in my efforts to protect him when my calls for a miracle fell on deaf ears.
The nurse who was minding my sister's two kids looked up at us nervously as we entered the room. Conor was tucking into the MacDonalds that Vanessa had brought him whilst giving out to Nicholas and Isabelle for jumping around the place and making a mess. I remember putting on a cheery voice and joking with the kids. Isabelle was trying to show me some new piece of jewellery and whereas I could see her mouth moving, I had no idea of what she was saying. Inside my head was turmoil and racing thoughts prevailed. Behind the frozen smile, contorted and tortured voices screamed in my brain. The nurse got up to leave but not before grasping my hand in hers and looking tragically into my eyes. A tear welled up and slid down the side of her face. Her whole expression and demeanour spoke of horror, shock, sympathy and compassion. I was to experience this nurse's look and reaction over and over again in the coming months as well meaning people reached out to me confused, terrified and powerless as they watched our terrible nightmare progress in full colour and at lightning speed right in front of their eyes. I no longer would be Vivien or Vivien Ni Dhuinn, neither would Conor be just Conor anymore. From that moment on we became that ‘poor woman', that ‘poor boy' or that 'tragic family'. We had become a train wreck or a serious car crash overnight. People slowed up as they passed us by, trying not to look but unable to turn away. They so desperately wanted to understand why it was that we had all not died straight away from the very fright and shock of it all. They knew for certain that they would if it happened to them. They stared in an attempt to imagine standing in our shoes. What if it visited them or one of their children? How does one deal with being told that your child is going to die? They wanted to look at what a child who had no future looked like. And do you know what? I understood them perfectly for I would have been just the same if it had happened to someone else. Yes, there is a sense of morbid curiosity about it or the Ambulance Chaser Syndrome, or you know when you pass a funeral or a hearse? You can't help slowing down to take a sneaky look at not just the coffin but also the bereaved. You want to look into the face and deep into the eyes of someone who has just been touched by death. You want to know their sorrowful story and even the gory details. It is not just being nosy or a busy body. Truth is, we are so terrified of death and everything to do with it in the Western World we spend a lot of time trying to ignore it and hoping that if we don't think about it, then the Grim Reaper just might pass us by. Death has become so alien to us in the West that even when someone in their late nineties dies we throw our arms up in despair and wonder why life can be so cruel. And now I have gone ahead of my story with my philosophical musings and so must now return to Room 9 in The Oak Ward, Tallaght Hospital and to my son Conor. Conor sat on his bed giving out to the kids and trying to watch television at the same time. Nothing for him had changed except for the fact that he had met a lovely girl in the games room when he had been down earlier to try out the pool table. She was in for some vague condition and Conor was smitten. He had invited her down to his room that evening to watch a DVD and had earlier that morning asked me to make myself scarce when she was there. At 11 and 3 months Conor was desperate to fall in love and have a girlfriend. He was smitten with this young maid on the ward. My heart ached as I looked at him so excited about the possibility of getting a date while in hospital. He was blissfully unaware of the horrific news I withheld from him. He looked happy and that was all that mattered to me at that time. No one was allowed to disturb his mood. As the day wore on into evening, nervous and falteringly family members, neighbours and friends began to filter in. Some of them looked as if they would collapse in the room with their as pale faces and tear stained eyes barely concealed behind make-up and forced cheerfulness. His cousin Phoebe, 2 yrs his senior arrived ashen faced and unable to talk. She sat on my fold up bed for the whole visit just staring straight ahead. My daughter arrived and I immediately took her out of the room. I had not told her yet as she was driving and I didn't want any more tragedies on my hands. She broke down in the corridor and I had to stop her from screaming. I warned her to get it together before she returned to the room. Katie was 24 yrs old in 2007 and between the two of us we were his immediate family. We had to be strong for Conor and we had to get him through this. I told her to agree that there would be no tears in front of him. Conor was very sensitive and disliked any form of violence, animal abuse or angry voices. He never watched anything on television that was remotely bloody. We knew that he would not be able to cope with such overwhelming news. We also knew the power of suggestion. If we suggested that he may die then the body may just cooperate with the suggestion and get on with it. If we suggested he would recover then the body might do just that. We couldn't let negativity or a fatalistic approach set in. Katie agreed wholeheartedly with me and was determined to protect her younger brother in any way she could. She had been like another parent to him as he grew and she took it very hard. Katie is a very intelligent girl with degrees in maths and biology and she was to become a force to be reckoned with over the coming months as she monitored the drugs he was getting, corrected nurses on their calculations of morphine requirements and constantly checked his syringe drivers, catheters and cannulla sites for problems. She was also fearless in the face of his horrific suffering and stayed throughout all his dreadful treatments urging him on and willing him well. Her very determination would see him through and when his strength failed he could have hers. Visitors arrived that day with all kinds of wonderful presents for Conor. The room took on an almost party like atmosphere and Conor was so happy. He was the centre of attention and surrounded with gifts that he had thought he would have to wait until Christmas for. Eventually the strain was too much for everyone and one by one they took their leave of us. During their visit Conor had become poorly at times with headaches and vomiting. They all stared pitifully at him, bewildered at the tragic news the day had brought about one of their family members or their friend. By late evening there was just the two of us. Conor fell asleep and I sat watching him. To be honest I felt strangely calm' the enormity of the situation still to impact me fully. I was, I suppose in a state of numb shock. I stared at him repeating over and over in my head that the boy I was looking at, my lovely son was probably going to die no matter how hard I tried to save him. It didn‘t really have any effect though. That was because it hadn't yet registered. One of the nurses arrived and sat with me. She stroked Conor's brow and spoke quietly to me about how wonderful I was to have persisted so strongly with the doctors. She told me how upset all the nurses were on the ward. They just couldn't believe it. Most of the kids were in for asthma attacks or similar and they found it hard to accept that one of their patients could be in such a state. She held my hand and asked me how I was and marvelled at my incredible strength under the circumstances. I was then given the free run of the ward. I was allowed into the ‘no go' area of the ward kitchen anytime I needed a coffee or something to eat. Anything I wanted I could have. They were all very kind to me.
The First Night As we awaited confirmation of a bed in Crumlin Hospital, the time passed in a nightmarish haze. Conor was still unaware of his condition and I was still trying to put on a 'business as normal' face. This facade I donned each morning weighed heavy on me like an ill fitting medieval suit of armour. It cut into my skin and muscle, it's metal chilling me to the bone at times and then at other times stifling me in it's claustrophobic confinement. The sheer effort of carrying it around all day exhausted me. At times I was okay and even appeared cheery . I would find the strength to walk down to the shop and get a cappuccino, only to suddenly double up and slump against one of the window sills on my way back. I think it is the minds way of feeding horror and shock to you in small doses as it knows you wont be able to cope with it all in one go. The mind must feel sorry for you at times and decide to give you a break, just like the lost disoriented wanderer in the desert who after days of survival in the intense heat without water suddenly sees a lush and fertile oasis in the distance and stumbles towards it, only to horribly discover that it was just a mirage . For just that moment in time, he thought he was okay and that he would make it. The mind certainly plays tricks with you during times of intense stress. The visits from Conor's medical team were few and far between after his diagnosis. His consultant did pop in every now and then to assure me that they were liaising with the Oncology team in Crumlin and were at present awaiting details of the medication he was to start on prior to his transfer. Everyone was eager for Conor to start treatment as soon as possible in order to get his symptoms under control. While all this was going on in the background, Conor struggled to just keep going and do the things a boy his age would normally do. In between headaches and vomiting he would wobble down, unsteady on his feet, to the playroom area in order to play pool or just hang out. There was also the chance that the girl he had made friends with just might be there too. I escorted him whenever I was allowed for he did not like me being present in the playroom as it made him look like a baby. He was going on twelve and had a certain street cred to live up to. Having a mammy tagging along was just not cool at all. I used these times of impolite dismissal to return to our room and for a brief moment drop my pretence. The nurses would be tipped that he was alone and unescorted. They would keep an eye out for him in my absence. I would sit there on the chair, my mind reeling and racing trying to make sense out of all that had happened and why. It is strange but I cried very little during this time. I would have moments when the sheer force of what I was carrying around inside of me burst out like projectile vomiting but in general I remained dry eyed. Shock is a strange thing and again the mind tries to protect you by making the actual reality of the situation evasive and allusive, like a nightmare that on waking is fresh and easy to recall but as the day wears on you can only catch brief snatches of it as it disappears around corners of the mind, always ahead of you, always remaining just out of your reach. You know it is there, your body reacts to it as fragments of the nightmare filter through your consciousness reminding you of it's unpleasantness yet you are unable to bring the full account of its detail to mind. Just as well, for the fear would be that one would implode from the absolute enormity of its reality should one be made privy to the full facts. I was to learn in time that the medical term for this condition is called repression. Repression occurs when the consciousness is suddenly overwhelmed by a situation if finds incompatible to its normal existence. These situations are normally associated with shock, trauma, terror and violence etc. The consciousness, unable to deal what it is been fed refuses the bulk of it access and so dispatches it to the subconscious where it is kept under lock and key. From there on it refuses it total recall of the imprisoned situation on the basis of self protection. As the consciousness becomes accustomed to or more accepting of the situation, it may release segments bit by bit and so one can begin to deal with whatever the trauma involves. For some, the trauma is just too great and the consciousness point blank refuses to release any of the repressed memories. One might think that this is a good thing under the circumstances but it is not healthy. The trauma is still there, even though it is locked up and the key thrown away. It will search and search until it finds a way out on its own. It always does one way or another. When it does escape, the result is the return of the repressed and this can be detrimental for the individual. The repression will manifest as symptoms of some sort or other, neurosis, phobias, chronic health conditions and a host of other irregularities. People were to call me strong so many times during Conor's illness and at the time of his death. I myself believe that it was not strength that kept me going but repression. Again, I digress from my story but then again, in trying to make sense of all that happened, I must include my musings and slants on all that we were exposed to and went through. It may make no sense to you at all but it is the only way I can give you an insight into what was our reality. Conor never lasted long in the playroom, his untreated symptoms worsening, he would be taken back to our room by one of the nurses, dizzy and ill after a series of headache strikes through his skull. He would have to lie down after getting sick and would then drift into a deep sleep. Again I would sit and watch him sleep. He looked normal when he slept, not drunk or drugged looking around the eyes, just normal. He slept blissfully unaware of the cancer that grew in his brain. He was just eleven years old and so looking forward to everything in life, how could this be happening to him? He was a sensitive and gentle child who found it difficult to handle sadness or upsetting situations. How could I expect him to handle this? I knew I couldn't, for he would break. I would have to handle it for him. I would do all the worrying for him. I would do what I could, what I had to do. However, I would not be able to endure the pain for him nor would I be able to suffer the side effects of all his drugs for him as time went on. As a mother, I would lay my life down for my child but my life was worthless in this situation. I could not trade it for love nor money in order to secure his release from suffering or pain. I would have taken twenty tumours from him and implanted them in my body if it had meant his survival. Being helpless and powerless is soul destroying. Beginning Medication - Steroids I didn't notice the twitching and jerking during the day but when I lay down at night it kicked into top gear. Sleep was impossible. I began treating myself with Reiki on the second night but I felt nothing, no relief, no relaxation. Reiki was helping Conor with his headaches and also provided him with comfort. I would lie beside him in his bed laying my hands on him, feeling the energy flow from my palms, hoping and praying for it to perform a miracle. "Do healing on me mam" he would say when he felt poorly. He always swore that he had the best sleep ever after a Reiki healing. The Reiki magic seemed to work for him but not for me. Eventually Crumlin Hospital confirmed some form of medication for Conor and wanted him to start on it right away while waiting for transfer. And so we entered the world of Steroids, Dexmethasene to be precise. Anyone who has ever had to deal with cancer on a personal basis or who has cared for someone going through cancer will be familiar with the wonderful power of steroids but also their horrific side effects. Medicine has come such a long way over the centuries with many wonderful discoveries and life saving cures. However, when it comes to cancer they do not seem to have come up with anything better than steroids. Steroids are a necessary evil in treating cancer, especially tumours. Steroids will alleviate swelling and slow down the growth of the tumour but at a price. We were to learn a lot about what steroids did to the body over the coming weeks and months. At times they would be a blessing but mostly they were a curse. Within a couple of days of starting steroids, Conor began to feel a bit better. His appetite improved at a phenomenal rate. Hunger hit literally overnight. This was not normal hunger for this was steroid induced hunger. Conor could think of nothing but food. It consumed his every thought. While he gorged his way through breakfast, he would be planning what he was going to have for lunch. Urgent texts were sent to family and friends with specific MacDonald and Goodfella Pizza orders and I was dispatched regularly to the shop in the lobby with a long list of sweets, crisps and rubbish in general. Not a healthy food request in the whole lot but at that moment in time I gave in to all of them just to keep him happy. The steroids made him eat fast too and with the effects of the tumour interfering with his swallowing mechanism he would have to be watched closely for he often began to choke on his food. The steroids effected his mood which changed erratically and he swung from being happy and laughing to being cranky and abusive. Visitors who arrived with the wrong food order or an unsuitable gift were rapidly cut off at the knees. I had to explain to everyone that it was the drugs talking and not Conor. As I watched the drugs take hold, I began to see my son as I knew him disappear and dissipate. Conor was now a steroid fuelled cancer patient. Reiki Eventually Kicks In On the third night after diagnosis, I lay in the bed yet again, my body twitching and jerking as I attempted to self treat myself with Reiki. I desperately needed to get some sleep to keep my strength up. I questioned whether I had any angels or guides watching over me as my calls for help went unheard and unanswered. Then it happened. I suddenly experienced an enormous surge of energy flood through my body. My muscles began to calm and the twitching fade . I felt strangely heady and woozy as if I had been hooked up intravenously to some sort of sedative. I felt myself floating and drifting away. I didn't fight it at all but gladly let myself be carried away on a wave of deep relaxation as I fell into a deep restorative sleep . It was bright when I woke and the ward in full swing. Conor was still asleep and I jumped up to check him. I felt a bit panicky as if I had taken my eye of the ball. His breathing was rapid (steroids again) but he appeared okay. I staggered around the room heavy from sleep and thought I was going to throw up. I decided to sit down on my bed and let my head settle. Our situation had not changed because I had slept. Conor still had a brain tumour but I felt different. I felt hungry. I also felt determined and strong. Was it the Reiki or was it just the fact that I had slept deeply. I didn't know and I didn't care just as long as I had the energy to get through each day and help my son face what he had to face. Visitors certainly noticed a change in me and so did the nurses. News From Crumlin - A Bed That day word came from Crumlin Hospital. They had a bed for us and we were to be transferred the following morning. I should have been reassured by this news but I felt depressed. Crumlin had the experts in oncology who would be able to give me some straight answers and would for sure find the correct treatment for him that would save his life. He could begin proper treatment instead of the limbo situation we endured in Tallaght. However, Crumlin hospital meant the children's cancer ward. Crumlin hospital also meant stepping back in time, back to a time over twenty years ago when my daughter had spent much time on St Roch's Ward being treated for Diabetes when she was barely 1 year old. Katie had being the youngest diabetic in the country at that time and this may have been the reason her condition had gone undiagnosed by our family doctor despite me expressing serious concerns regarding her symptoms. Her worsening condition back then had been put down to measles brewing. She was admitted to hospital only after she had slipped into a semi coma. Once in Crumlin she was quickly diagnosed and rushed to intensive care. When the doctors came to speak with me they told me that she was in a very serious and critical condition. Her readings were off the scale and her veins had collapsed. They informed me that they didn't expect her to survive the next 36 hours. They said they had made her comfortable and that only time would tell. The doctor explained that she was in the excellent care of a certain Dr. Paul Azizlock who would do everything in his power to help her. I remember after he told me, hearing my mother screaming and crying while I remained numb with shock. I had a little holdall with me that night full of her bits and pieces. At the top of the bag I could see her red fluffy slippers peeping out and the thought crossed my mind about what I would do with all her clothes and things in her bedroom when she was gone. I did say that shock is a strange thing and can make the mind head off in weird directions at times. While everyone else was falling apart I was thinking about clearing her room. Strange. With the help of Dr. Azizlock and a wonderful team in Crumlin, Katie defied the odds and pulled through. However, she was a very sick child and we were to spend several weeks living in Crumlin Hospital on St Rochs ward. St Rochs Ward is situated next door to St John's Ward and during my stay there back in the eighties I would watch tragically the children who suffered from cancer being brought in and out of that ward. I remember one of Katie's nurses commenting to me one day that that was a ward I certainly never wanted to end up on. Yet here I was over twenty years later awaiting transfer to that very same ward. How ironic could life get? Katie continued as an outpatient in Crumlin until she was about 16 years old when she eventually was handed over into the care of St. James's Hosptial. Our time with Crumlin was over. Little did I know! Transfer To Crumlin The morning of transfer arrived. I had packed our few belongings the night before. The nurse who was escorting us had popped in earlier to tell me that they were just waiting for an ambulance to free up and then we would be off. As we sat in our room Conor was in a sullen mood. He did not want to change hospital. He wanted to go home. I explained that Crumlin had to do tests on him that Tallaght couldn't and that was why were going there. He was very cranky that morning. I was lost in thought. It felt like we had been on trial for some terrible crime. The jury had returned a guilty verdict with the MRI results. We were being sent down and had been retained in custody awaiting transfer to a high security prison for young offenders. Our sentence had been harsh and unforgiving. We were unaware of our crime and even considered ourselves innocent. However, the land we now traversed thought nothing of being innocent and in fact preyed upon the innocent and innocence. I think it was Nurse Hazel who came for us. The ambulance was ready and waiting. I wheeled Conor out of the ward in a wheelchair for he was still unsteady on his feet. All the nurses came to see us off and I could read the sympathy in their eyes. I could see the ambulance waiting for us through the revolving doors. This was the armed prisoner transfer van coming to take us away from freedom and everything we held dear. Insane thoughts of making a daring escape danced madly in my mind. Maybe if we just ran and got away and pretended that none of this had ever happened, then maybe we would survive. However, there was no escape. The ambulance driver looked strong, fit and fleet of foot. He would have us recaptured in no time at all. No, we had to see this one through. With seat belts secured we took our leave of Tallaght Hospital and set forth on our last journey of freedom. What we would have to witness and endure once we passed through the doors of St. John's would change us all for good and that was for sure. None of us would ever be the same again. Staring out the window at the passing traffic I watched normal life go through it daily paces. Traffic sailed by and several buses ahead blocked our view of the road. I watched a man delivering bread to a shop as we waited for the lights to turn green, and a mother scold her child for pulling out of her as she tried to push a buggy weighed down with shopping. A car passed with blaring music streaming out of an open window while a young man crossed the road laughing to someone on his mobile phone. While one can see out of an ambulance, those outside cannot see in. This allowed me to stare into the faces of those we passed or were pulled up alongside when traffic slowed. I was one of them only a short time ago, just going about my business; the normal ups and downs, giving out about the traffic or slating someones bad driving. How dramatically life had changed in such a short space of time, how little did those people out there, those free people, know how much they took for granted or how lucky they were just to be caught in traffic while we were on our way to prison and a very uncertain future. My heart sank when we pulled up outside the front doors of Crumlin Hospital. We had arrived and there was now little chance of escape. Nurse Hazel was going to see us settled in and before departing Tallaght hospital had given me a little preparatory talk about what to expect once through the doors of St. John's Ward. She told me it was not going to be pleasant and that there would be a lot of very sick children and children with no hair. She just wanted me to be prepared and not for it to come as a shock when I arrived. Crumlin Hospital - The Next Stage of Our Journey As we wheeled Conor down the long corridor of Crumlin I felt like I had stepped back in time. Nothing had changed in Crumlin. It had looked old and dated over twenty years ago and now it looked even worse. That same cloying smell; a mixture of food cooking in the canteen, cleaning fluids combed with the normal hospital stuff. It was sickly and sweet and brought back memories of stress, worry and exhaustion. How had I landed back here again? At the end of the first corridor, just before you round the turn, my heart dropped further still when I saw the same statue of Our Lady still standing on her pedestal in the corner. Someone had stuck an artificial rose and a scapula into her praying hands. She reminded me of institutions, convents and nuns. I couldn't believe she was still standing and the sight of her depressed me. The same Disney friezes covered the walls; Mickey Mouse, Donald Duck etc if memory serves me well. They cartoon characters had gone out with the Indians and had no place in a modern children's hospital. This was supposed to be boom time in Ireland. How come some revamping money had not been thrown at the place? Regardless of plans to relocate, a bit of fresh paint here and there would not have gone amiss. As we travelled the last corridor my eyes could not fail to notice the mortuary door on our right. How could I forget that door? Had I not wheeled Katie in her buggie back and forth past that door over twenty years ago? Had I not on each occasion felt the cold chill of terror as my eyes were drawn to the glass panels and the imaginings of what lay behind. I had always thought that it most inappropriate to have the mortuary access door located just up from the cancer ward in the hospital. It was always and would be from that day onwards for me a constant grim reminder of what more than likely lay ahead for us and many of the patients who temporarily resided under the roof of this hospital and especially St. John's ward. St. John's Ward We had arrived at the red doors. Hazel held them open while I wheeled Conor through. The doors closed quietly behind us. I could sense that Hazel was nervous. She lowered her voice and watched me closely as she spoke. Inside the door was a small corridor and we stopped there to disinfect our hands. There was a door to the left which would bring us through to the ward but for now we had to make sure we brought no infection in with us. As I disinfected my hands my eyes were drawn to a photo display board on the right. It seemed like hundreds of children's faces and smiling nurses fought for attention. There were so many of them. Judging by the clothes, some looked quite dated while others more recent. Most of the children had no hair, some were smiling while some looked back at the camera with vacant expressions which were probably drug induced. I wondered were they all were now and how they had fared out, especially the more dated ones. Had they survived or were they just memories now, residing in the hearts of those who loved and still love them to this day? Were their images frozen in time or had their features matured and bodies grown? Whilst my mind asked so many questions, I wasn't sure, I was ready to hear the answers. The same cloying smell permeated the corridor of the ward , which looked dark and dreary after coming from the more modern and bright Tallaght Hospital. On the left side of the corridor were the patient rooms. All the rooms had windows that faced out onto the corridor.Some rooms had two beds, while the last three appeared to have single occupancy. I was aware of children sitting or lying in beds in most of the rooms. Parents or visitors sat alongside and raised their heads as we passed. We were new inmates of this facility and so there was an air of general curiosity about us as we made our way to the Nurse's Station to be processed and issued our cell. Nurses flitted in and out of rooms and we passed some children in wheelchairs attached to drips and equipment. The nursing staff laughed and joked with the kids and their parents. It was all new to us but would become so familiar over the course of time. We were welcomed by a staff nurse at the Nurses Station. She looked deep into my eyes when she asked how we were doing? The enquiry was genuine. There was no staff protection from the distress of working in such a ward and the nursing staff in St. John's were under no illusions as to the suffering and shock such a diagnosis had on all concerned. They worked in this environment every day. They had met hundreds if not thousands of children all in there because of cancer. They put everything into their patients even though they know some will not make it. They never give up and never turn away. Some of these nurses were to become more than family to me. During dark and grim times, when visitors would flee or not be allowed in at all, they were constant in their support and compassion. They held our hands and walked with us on our hellish journey. They had to put up with us when we became argumentative and demanding, our nerves torn to shreds , our anger vented on those around us. They sat and listened when I became philosophical or demented. They made me laugh through veils of tears and unrelenting stress. Yet, I was also to see them breakdown when they lost a patient or when scan results confirmed that the cancer had either returned or had spread. They invested so much of their energy trying to save these kids that they often took it terribly to heart when they lost the battle. The Centre of Excellence! We were shown to our room, no. 3 and left to unpack . Hazel said her goodbyes and took her leave of us. I wanted to run after her and jump back in the ambulance but there was no going back now. This was our new home whether we liked it or not. Conor, got really mad when he saw that there were two beds in the room. Fuelled by steroids, he angrily refused to share with anyone and thought the room dark and miserable. He also wanted to go back to Tallaght and ranted and raved about his bad luck in having to be sick. Conor, was right, the room was dark and miserable. It was an old hospital after all and not built to be functional and certainly not aesthetically pleasing. We unpacked and then sat in the gloom. There was a tiny television high up on the wall but no remote control to change the channels. Conor was livid and him being stressed made me more stressed. I looked around at the dreary interior of our room . Curtains with scarecrows hung on the windows and around the beds. Some of the curtains were shrunken which meant they did not fit the windows properly in either width or length. There were two beds in the room but only one wardrobe space which was located by the window on one side of the room and one sink. There was an outside window which overlooked a neglected and forlorn courtyard where a few broken hospital trollies lay on their side beside some overgrown bushes. At present we had the room to ourselves but that could change at any moment the nurse had told me. When Conor had insisted that he would not share with a baby, the nurse nicely informed him that if a baby was admitted then that indeed would be the case. While we still had a choice, we chose the bed nearest the window overlooking the courtyard which was also beside the one sink and wardrobe. This was the centre for excellence in childhood cancer but whereas the treatment available here was second to none and due to strict infection control the place was kept dust and dirt free at all times, the furniture and fittings appeared less than basic. Why would a place of this importance not have money lavishly spent on it by those who had the power to do so? What had we done to end up here? We were feeling very sorry for ourselves when a nurse called Nicola appeared in the doorway and stepped in for a chat to see how we were getting on. I was less than friendly and very uncommunicative. Nicola did her best to get through to me but I blanked her. I was not in the mood for friendly chat for I felt less than amiable at that moment in time. In fact, if memory serves me at all well, I believe I was downright rude to her. She tried to appeal to Conor, who was having nothing to do with it and sat crying in his bed wanting to go home. It was our first day in this prison and it was going to take some getting used to being new inmates. Nicola tried several approaches with me but my response was bleak and depressing. I remember telling her that I had no desire to live anymore and that as far as I was concerned life was over and no amount of soft handling or sweet talk was going to change the reality of what we were dealing with. I didn't want to see anyone or talk to anyone. Nicola never once showed any signs of being annoyed by my behaviour and told me that she was there for us should we need anything or to talk. She said she understood that we must be very angry, first with having to fight to get diagnosed and then the unfairness of the diagnosis itself. I remember pointing out to her quite bluntly that she had no idea how I felt. Poor Nicola, she really got me at a bad moment, however, over the coming months Nicola became a very important person in our life and on our journey. Her professionalism, her compassion, her dedication and love will always stand out in my mind. She shared some very special moments with both Conor and I and witnessed some terrible times. You would think that these nurses would eventually get hardened over time but I lost count of the the amount of times I saw tears well up in her eyes. Nicola was not alone in this quality, for I witnessed staff getting upset on many occasions. They never lost sight of the human aspect involved in each case. The Guided Tour Later I was shown around the rest of the ward so that I could become self sufficient in certain areas. I was shown the children's kitchen which was located beside the playroom. Here was were the children's food could be prepared and there were fridges were we could store the special foods our children enjoyed. I looked through he glass panels at all sorts of goodies housed inside. Boxes of Ice Pops and Pizza stacked the shelves. This was pure steroid food for sure. Parents had stacked the fridges and ownership of food was apparent by the name of the child written on the individual food labels. The playroom which was very basic in comparison to Tallaght hosptial also housed the wheelie beds from all the patient rooms. These wheelie beds were what parents slept on each night and had to be out of the room by 9am each morning to allow for disinfection of the floor space. Infection in this ward was a constant threat to immune suppressed children undergoing chemotherapy. Everything was subject to strict infection control. Just beside the nurses station double doors led to the transplant and haematology section. This was only pointed out to me but we did not visit. Infection control would be even more rigorous on the other side of those doors. The three single rooms were closest to the nurses station and the nurse showing me around explained that those rooms were kept for children in isolation or for children who were very poorly. They were room 8, 9 and 10. We were to end up in room 9 but would also spend time in room 8 over the coming months. On the right hand side of the Nurse's Station was the drugs room. This room too was to become of huge importance and as I type, I think back on the countless times I watched impatiently and frantically as the nurses prepared Conor's morphine for him while he screamed in agony from his room. There was always such red tape when it came to administering the hard drugs, the narcotics. Forms had to be filled in and signed by authorised doctors who were not always around or free to come running when called. While the nurses waited for the go ahead to administer more drugs, Conor continued to suffer. It was neither the nurses fault nor the doctor we were waiting on. It all came down to under staffing and lack of proper funding. The doctors and nurses themselves worked tirelessly in very poor facilities to provide the best care they possibly could. Next to the drugs room and opposite the patient rooms were the patient toilets and sluice room. There was also a door that led to the day ward where children being treated for cancer came in for day treatments. It was brand new and state of the art. When I did get to see it later that day, I was shocked by the stark contrast between it and the ward we were in, the ward where children had to stay for long periods of time. It was like moving from the dark into the light and then back into the dark again. The rest of the corridor housed a patient bathroom, supplies room, laundry, treatment room and a schoolroom that was the size of a hot press so tiny was it. Further down just as one left the ward corridor was the parents room, parent's kitchen and a single toilet for both public and parent use. The kitchen itself was tiny but was equipped with a cooker, microwave oven, fridge, toaster and kettle. It did lack in basic cutlery and cups. During my stay there myself and other parents often bought mugs and other bits and pieces as was necessary. The parents room looked new or at least fresh but was very basic to say the least. It had one solitary armchair that had been donated by a parent and an old dining table and chairs that I was told had been donated by the St. Vincent De Paul society. Mind you there was a huge plasma screen on the wall. The lighting was stark and at nighttime would take the tired eye out of your head with its intensity. Sliding doors led out into a tiny postage stamp gravelled area. This parents room was badly furnished and uninviting. In all my time there I rarely saw it been used except as a quick place to eat food or for surplus visitors to gather. Nothing drew you to the room for it provided no comfort and no respite for the worn out parent. In this section of the corridor stood a large vending machine where one could purchase water and crisps etc. I was shown the parent' s shower room which was located on the first corridor we had entered after coming in from the main hospital corridor. Inside was one toilet and one shower. This lone shower had to cater for each and every parent who stayed on the ward. It was ridiculous but when I discovered that St. John's Ward, the centre of excellence in Ireland for childhood cancer received no funding and that anything there was there was as a result of fund raising or donations I just couldn't believe it. Here was Ireland, apparently dripping and oozing money and this is what they had to offer parents with terribly ill children when they arrived shocked and traumatised onto the ward. Again, I stress that the lack of facilities had nothing at all to do with the wonderful doctors and nurses who attended and cared for the young patients. Neither had it got anything to do with the housekeeping or catering staff who kept it ticking over and full of supplies. it just happened to be the place they had to work in. However, as my story progresses you will begin to understand the terrible conditions they work under and the gross lack of staffing on the ground level. Why any of them stick it out, I really don't know why. Obviously it is surely a vocation for many otherwise they would have packed their bags and gone a long time ago. Meeting The New Medical Team On returning to my room I was informed that the consultant and his team would be around later to meet Conor and then they wished to meet with me in private. This was a meeting I was not looking forward to for it was this consultant who would put me fully in the picture and tell me exactly what we were dealing with. Even though I wanted to know so many things and ask so many questions the fact that I was still not fully aware of the prognosis protected me to a certain extent. Conor was starving and the hospital fare totally unacceptable to him. We had travelled by ambulance and obviously had no chance to shop for food. Urgent texts were dispatched with requests for food supplies and goodies. Margot, my friend was first on the scene and she arrived laden down with food and stuff for me. We sorted out all the food in the kitchen with labels and dates and then got Conor fed. Not long after this the team arrived and introduced themselves. My heart pounded in my chest with fear and anxiety. Conor's consultant was a pleasant man who smiled and spoke jokingly to Conor. Conor was not impressed and at this stage totally fed up with the whole hospital lark. The only thing that appeased his steroid fuelled body was food. The Dreaded Meeting - Prognosis After an initial check up of Conor, the consultant gave me the nod that he would now like to speak to me in private. Margot said she would come with me just to be there. Conor was left watching television in bed while we took the short walk over to the day ward where eventually a free meeting room suitable enough for our group was found. My legs felt weak and I was not sure I would make it through the next few minutes without fainting. I cannot remember fully who was there that day but other than Margot and myself, I think there was the consultant, a couple of his team and Nicola. The consultant got down to matters rapidly. I fiddled with my hands while I heard my blood roaring in my ears. He delicately gave me some background preliminary stuff regarding the nature of the tests that Conor had had. Then I got the facts. It was called a Diffuse Pontine Glioma. It was large and situated on the brain stem which it was wrapped around both externally and internally. Therefore it could not be operated on and removed. He explained that it was not a common brain tumour and typically wouldn't expect to see more than two a year. I sat numb in mind and body as he explained that there was very little treatment that this type of tumour responded to. He referred to the brain stem as being Central Head Office and as a result the effect its presence would have on the body in general. I asked how they intended to treat Conor as surely they could not just give up on him so easily. On the contrary treatment would start and more than likely the following day. However, radiation therapy was the only option available to him as chemotherapy had proven to be unsuccessful in the past. He explained that there was no point putting the child through the horrors of chemotherapy when it would amount to nothing. He would have enough to contend with without that. His intention was to start him on a six week course of daily radiation therapy. This radiation therapy would take place in St. Luke's Hosptial in Rathgar, Dublin. The radiation coupled with the steroids would help to reduce and control the progression of the tumour. It would however, offer no cure but just prolong life. I suddenly felt ill. When he had announced that he would be starting treatment, I foolishly believed that this offered us a glimmer of hope. Treatment, meant treatment didn't it? Treatment to make him better? However, when it comes to cancer, treatment often means treating symptoms but not the underlying disease. The word symptom control is bandied about a lot under these circumstances. It was when I asked the consultant what would happen after the six weeks were up he showed the first signs of becoming uncomfortable. I needed to know what the plan of action was after his radiation treatment ended. When he spoke, it was slow and deliberate. He wanted what he had to say to be understood and absorbed the first time round without having to repeat it again for it was difficult for him to say what he had to say. Clasping his hands together on the table in front of him he explained that the radiation treatment would help to shrink the tumour. It would be a painless enough treatment. Some kids took it well while others had problems. He would have to have a radiation mask made for his head and this would be marked for directing the beams of radiation. This mask and his head would be bolted to a table and he would have to stay still for several minutes. Many children found this clautrophobic and distressing. If this was going to be the case with Conor, an anaesthisist would travel to Lukes with him daily and he would be given a general anaesthetic to keep him immobile. He then went on to remind me that whereas the radiation would shrink the tumour, it was by no means a cure. He said that Conor, if he responded well to the treatment would come back to his normal self, without headaches, sickness, double vision or loss of balance. He would stay on the steroids during the early part of his treatment but would be slowly weaned off them as time went on. I was then told that all going well Conor would be fine for about 3 to 6 months when the tumour would activate again and become aggressive. Once that occurred he would have 10 to 15 weeks left to live. So that was it, we were being given less than a year. I don't know how I kept it together but I found myself asking him if anyone ever survived this tumour. The consultant said occasionally one would and these were referred to as 'Miracle Children'. He kindly told me not to build up my hopes. Build up my hopes? Hope was all hope that we had left. Maybe, just maybe, Conor would be one of these miracle children. The consultant's aim was to get Conor stabilised and into his treatment so that at least he could start feeling better in himself. I wanted to know if the delay in getting him diagnosed had contributed to his prognosis. Maybe something could have been done if they had discovered it in time. The consultant shook his head and told me that the tumour was wrapped up in the brain stem and not apart from it. Even if they had discovered it 6 months ago it still would not change the outcome. Radiation was all that could be done under the circumstances. He told me that we had some very dark days ahead and some very rough roads to travel. When I asked him desperately what I was supposed to do he told me to get him through his treatment and then take him home and do whatever makes him happy. He then asked me if I was going to tell Conor he was going to die? There it was, the very first mention of the word 'die'. It hit home like a sledgehammer. My stomach churned and I felt my head burn as if it was on fire. Die, tell an 11yr old boy he was going to die? Absolutely no way. Conor was going to live, he was going to get through this. I was not going to take hope away from him and replace it with defeatism and fear. The consultant understood but felt that I had to tell him something. We agreed to tell him that he had a lump in his head that was responsible for making him so sick. We would also tell him that it was called a tumour and that he had cancer. We would explain what the radiation treatment was going to do but we would not tell him that in the long run it wouldn't work. Instead I would tell him that hopefully it would remove the tumour but they could not guarantee it would not come back. We would cross whatever bridges after that if and when we had to. Breaking The News To Conor I returned to the room and broke the news to Conor who did not take it too well. He wanted to know why they couldn't just open his head and take the lump out. He became very depressed after that and bemoaned the fact that his summer holidays had started and here he was stuck in a stupid old hospital. He was depressed about the inconvenience of it all while I was depressed because of everything. My mind went to a very low place indeed but I decided to run with the odds of him being the next 'Miracle Child' It had happened before, it could happen again surely. Wasn't I a Reiki Healer after all? Surely I alone could save him if I had to? We both went to bed troubled and upset. Our first night was restless and disturbed. Conor was really beginning to feel the effects of the steroids at this stage. His muscles ached terribly and he had pains in his back and legs. He was also up and down to the toilet all night and the pains in his feet made walking an effort. I had noticed his body beginning to bloat as I had bathed him that evening. I knew that this was the steroids and that it would get worse as time went on. I had to get a grip on the type of food he was shovelling into himself but that was going to be easier said than done. As I lay down on my wheelie bed I wasn't looking forward to being fitted for the radiation mask the next day in St. Luke's. I didn't know how he would take it and was horrified at the thoughts of him having to have general anaesthetics every day for six weeks. I couldn't begin to imagine what sort of effect that would have on anyone let alone someone dealing with the effects of steroids, cancer and radiation. We would soon find out. A taxi had been booked to take us from Crumlin to Luke's early the next morning. Conor's Journey Part 2 - St. Luke's Hospital, Rathgar, Dublin (please click to be directed to page)
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