St. Luke's Hospital, Rathgar, Dublin

Conor woke feeling miserable. His body ached, he felt nauseous and could barely walk. He also was very distressed. The steroids had really begun to manifest their side effects. He hadn't gone to the toilet in days and was now in considerable pain. They really should have started him on laxatives along with the steroids in Tallaght but no one had mentioned them. They had given him a concoction of sorts when he arrived in Crumlin but it had yielded no results so far. He was stuffing and cramming food into his system but nothing was coming out. He could neither stop eating nor slow down his intake even if he desperately wanted to. The steroids enslaved him and like worms seemed to empty his stomach as quick as the food was going in.

Pain or no pain, he gorged himself on breakfast and then thought he would throw up. His balance was very poor and he was unable to walk unaided. Just half an hour before the taxi was due to arrive he felt that the laxatives were kicking in and so an urgent rush to the toilet followed. He emerged from the toilet in tears. No success. This urge came on him another three times and still nothing happened. It was now time to go to Luke's and we were suddenly gripped with a new fear. What if he suddenly had to go to the toilet en route? He was in a panic and so was I. His stomach was also heaving and we didn't know what to do. One of the nurses arranged for a stack of cardboard sick trays and gave me a bag of incontinence sheets just in case. She then gave him a dose of sticky white medicine to calm his stomach. And so we were ready.

The Taxi Drive From Hell

The call came down from Hospital Reception that our taxi was waiting. I wheeled Conor down the long corridors taking it easy over any of the metal ramps along the way. Conor lay slumped to one side in the chair, grabbing his head each time the chair hit the metal. It would only have been a slight disturbance to most normal healthy people but for Conor, it sent volleys of stomach churning waves through his brain. It was the vibration of the motion that was effecting him. The taxi man met us and God love him he was obviously used to such occasions. He expertly helped me get him into the taxi and said all the right words. However, his taxi smelt like a lot of taxis that carry a variety of people to all destinations and has seen a lot of action. It was the type of smell that would make you throw up if you had morning sickness or a hangover. Conor, reacted immediately and the cardboard sick tray was jammed up against his mouth. I literally covered the seat and his pyjama front in incontinence sheets so terrified I was of us having an unfortunate incident. The radio was beating out some sort of rock music and his taxi radio broke through regularly drowning out the music with its heavy static grating noise. Conor was in bits in the back with it all and the sweat was rolling down my back with stress. Every few minutes he felt he needed to go to the toilet and blind panic would wash over us. I was afraid to tell the taxi man in case he dumped us out on the side of the street and drove away. Any of you who are familiar with the journey from Crumlin Hospital to Luke's will be all too familiar with the amount of speed ramps one encounters along the back roads. Well, each time the taxi went over one of these, Conor groaned and grabbed his head. It was like some sort of nightmare journey and just added further insult to the predicament we were in. I suddenly didn't dread Luke's Hospital anymore. In fact, I just couldn't get there quickly enough.

It seemed like forever, but eventually we were at the fork in Rathgar. Straight ahead would take us to Rathmines and right would eventually lead us to Milltown. I had travelled this road on so many occasions over the years and knew only too well where St. Luke's Hospital was. Every time I had passed it I had spent a moment in reflection over all the terrible illness it housed and all the unfortunate souls who passed through its doors in search of a cure, in search of hope. Now, for the very first time we had a ticket to get in. A VIP pass so to speak. They would be expecting us and we would soon become another of their statistics, another name to add to their archives.

As we turned in the gate, I was immediately taken by the beauty of the trees that bordered the driveway. This was no concrete jungle, it was the leafy avenue of a very upmarket part of Dublin. As we pulled up outside the main door, I could see beautifully landscaped gardens ahead with wrought iron garden furniture sitting prettily in gazebos covered with clematis and the likes. I suddenly didn't feel as depressed. However, now that we were here and Conor had managed the journey without any messy incidents we could now focus our attention on the stress and worry that lay ahead once inside the door. This would be the way we would live for the months to come. There was always a long list of things to panic, worry, fear, dread or stress about. As each one came and went we would heave a sigh of relief, but only for a moment mind you, for no sooner would we get through one major trial then another one would instantly replace it. It was like living smack bang on the front line all the time.

Another World

Conor waited in the taxi as I ran to get a wheelchair. Once through the doors we entered a large reception area with a large seating area to the right. I had an envelope full of documents to hand in at reception that the staff nurse on St. John's had given me. The receptionist smiled as she greeted us and efficiently dealt with all the paperwork. We were asked to sit down until a file had been prepared and then we would be called. There was a little coffee shop off Reception area and Conor had caught site of it as soon as we arrived. He now was putting the pressure on for food. Even though he felt sick he was still looking to be fed. I tried to put him off but he insisted on having a chocolate muffin. He was still gorging himself and covered in crumbs when his name was called by another smiling nurse who had arrived at reception. She introduced herself to Conor first and then me before grabbing hold of his wheelchair. She summonsed me to follow as she led us up the corridor to the left of reception. She kept ahead of me as she pushed Conor and kept leaning over him laughing and joking. Whatever she said to him was working for I could see him looking back up at her, returning her smiles and laughs. Thank God for that I thought. The nurse led us to another waiting area where she said another nurse would be with us shortly. She cracked some joke with Conor before disappearing down another corridor.

As I looked around I suddenly had a Judy Garland 'Dorothy' moment. I looked at Conor and said " I don''t think we are in Kansas anymore Toto". Conor who was very familiar with The Wizard of Oz agreed. Regardless of not being in Kansas, we certainly were not in Crumlin Hospital anymore. We found ourselves in a very relaxing zone. Large soft leather couches and armchairs were nicely arranged and impressive artwork hung expensively from the walls which were painted in subtle shades and tones to blend in nicely with the leather upholstery. Soft lighting overhead and attractive coffee tables completed the boutique hotel lobby look. Even the magazines on the tables were impressive. No dog eared germ ridden half ripped Hello Magazines here. Instead we had Social and Personal, Harpers and Queen and Vogue. Even still I sat at the edge of my seat. We were yet again in foreign territory, out of our depth and totally ignorant of what lay ahead. Would Conor be able to deal with it? Would I be able to cope with Conor ? There was so much to worry about. Conor's bowels were rumbling yet again and I had to dash with him to the nearest toilet. I brought him into the ladies and even though he was in distress and feeling awful, he kicked up a fuss at being in the girls toilets. The steroids were beginning to make him unreasonable and I was under constant attack from his moody outbursts. Once again, Conor had no success and he was in dire form.

We came out just in time to find a nurse standing in the waiting area softly calling Conor's name. I waved to her and she came over to greet us. Maria stood in front of us with hand outstretched. She was petite and slim with long wavy brown hair tied back loosely in a pony tail. Her smile was genuine and compassionate and she spoke with a soft gentle lilt. Even her movements were graceful and I noticed her shoes made absolutely no sound as she walked. She gestured for us to sit down with her on the couch. She explained that she was to be Conor's liaison nurse for his time in Luke's. She would be getting to know us pretty well over the next six weeks and would be there for us whenever we needed her. She would guide and support us through the treatment, accompany us on consultant visits and generally be a shoulder to lean or cry on if the need arose. There was an essence about her that was almost saint like or angelic and I warmed to her immediately. So, thankfully did Conor.

Once all this was out of the way, Maria began to explain to us how the day would run and what we would have to do. She spoke directly to Conor most of the time and enthusiastically discussed the mask that he was going to be fitted for. She told him how it was going to be made and that he would have to wear it each time he came. He was impressed when he discovered it would be an exact mould of his face and how cool that would be. She nearly had me excited as well. I was to discover over the coming weeks that it was not just the receptionist or the nurse who had first met us or indeed Maria who would be friendly, uplifting and positive. In fact there was not one member of staff in St. Luke's who came even remotely close to being unlikeable. They certainly were well trained and took their work seriously. I never once saw them lose their cool or be abrupt, even when they were under pressure or on the receiving end of abuse from an ill, fed up and scared patient. These girls and guys were the real McCoy. There was no act, no forced behaviour. When you have to attend a place each day for six weeks you soon spot any inconsistencies and I never did. Down to the staff in the canteen they were incredible and I will never forget their kindness and support. They smoothed a path for us that could have been a living hell and I only take away fond memories of our time there. Maria's pager going off signalled that it was time to go to the mask fitting room.

Fitting the Mask

Conor was introduced to the team who would be responsible for making his mask. He then lay down on a plinth. The mask itself starts off as a large mesh sheet that to all intents and purposes looks like it is made of plastic. This sheet is put into a machine which heats it up until it becomes soft and pliable. Once the sheet is taken out of the machine, time is of the essence as it has to be placed on the patients face and head before being expertly manipulated into the contours of the face. This all has to occur before the mesh cools down because once it cools, it sets and takes the shape of that which it sits upon. Yes, it all sounds relatively simple in theory but this warm plastic mesh totally covers the face and for the time that it is being fitted the patient can feel as if they are being smothered. The holes in the mesh are small and so not a lot of air gets through either. Claustrophobic adults are bad enough when they are being fitted for these mask but just think how awful it is for children, toddlers and babies. You can understand and appreciate why it could occur that a child would have to receive a general anaesthetic everyday just to allow the nurse to put the mask on. This is why Conor's consultant in Crumlin had spoken about the potential difficult weeks ahead while undergoing radiation therapy.

In Luke's they take the 'lets see how it goes approach'. They said they would make no assumptions about whether Conor would tolerate the mask or not. They would wait and see. The plan was to get the mask made, get it marked up for the radiation beams and all going well get his first treatment started that day. Conor was not feeling the best lying on the plinth and my heart was pounding out of my chest. None of us knew how this would go. The machine heating up the mask made a noise and one of the team lifted the heated mesh out with some gadget. It was carried across to the plinth and carefully placed over Conor's face. The men who were fitting the mask spoke constantly to Conor in a low voice. They had told me that if he could not tolerate it  we would be sent back to Crumlin and then return the next day with an anaethesist in tow.

I watched in stony silence as they worked rapidly on Conor. One of them looked up at me and gave me a wink to let me know that all was going according to plan. I heaved a sigh of relief. There was not a peep out of Conor. He had either passed out or he was taking all this in his stride. Before I knew it they were lifting the mask off Conor's face and I could here him asking if he could see it. All I could here was 'cool' as they showed him. He seemed to be very proud of his mask. Tears of relief streamed down my face and the team were unanimous in their praise for his courage and bravery. He was chuffed with himself and I could see he was taking their praise on board. However, we were not out of the woods yet. The team explained that they were very hopeful that Conor would not need an anaethesist on the basis of how well he handled the mask making but the final test would come later on when the mask and his head would have to be bolted down to the table in the radiation treatment room. Not only would Conor not be allowed to move , he would also be left alone in the room during his treatment with loud whirring noises. I told you, didn't I ? Just as you get over one hurdle another one rapidly appears on the horizon.

We next went to the CT room where Conor was to have a scan of his brain again. This was not to see how big the tumour was but merely to map out the chart for the positioning of the radiation beams. A consultant arrived down to view the scan results and asked me if I would like to see the location of the tumour. I declined. It is odd that I have faced everything in connection with my son's illness and death but I have never been able to look at a picture of his brain tumour. I don't know why but I remember saying to the consultant that I felt it would be like looking at the picture of the paedophile that had snatched, raped and murdered my child. I just wasn't ready to do that and still am not. So much anger would come up I don't know if I could deal with it.

The World of Luke's

We were shown to another waiting room where were were greeted by yet another lovely and jolly nurse. She told us that the mask was being finalised for markings and that all going well we would be able to commence treatment. We had some time to kill so she suggested we go to the canteen and get a coffee or something to eat. Conor was all on for that and I was also in need of a coffee. The coffee shop was small but had a lovely range of tasty food. There was a choice of wraps, ciabatta, sandwiches, snacks and cooked food. They had a full range of herbal teas and juices. Conor, went for a cappuccino, sandwich and yet another chocolate muffin. We settled down to our food and as I took stock of our surroundings and the people sitting at the tables I felt I was in another world. Many were in dressing gowns and pyjamas. Others were obvious staff members. The consultant who had viewed the CT scan stood queueing for food and waved in our direction when she saw us. Some sat in wheel chairs and others fussed and fretted jumping up and down to get more napkins or spoons.

The woman who had served us at the counter had commented to Conor that that was his second chocolate muffin of the day. She asked him if he wanted her to keep one aside for him everyday just in case they got sold out before he arrived. He was thrilled as in his steroid mind he actually worried about such dire occurrences. She asked him quite directly what was wrong with him and he had no problem telling her. She reassured him that this was the best place to get himself sorted out. See what I mean? The staff in Luke's are just incredible. They seem to be able to read a situation for what it is and act accordingly. Never once did they do the aul sympathy lark and make out that this was any awful place to be. To them they treated it as if they worked in hotel and instead of patients they had guests. I can honestly say that St. Luke's Hospital in Rathgar is one of the most uplifting, positive and cheerful places I have ever visited. Surely it is an environment of healing and actively encourages recovery with its atmosphere and ambiance. Death or dying was never once mentioned to me over the six weeks we spent there.

A Funny Observation

Conor was very funny over lunch that day and at one stage I spluttered my coffee all over the place when he came out with an outrageous observation. He said that the coffee shop reminded him of Roald Dahls movie, The Witches. I immediately knew what he was talking about. It' s the part in the movie when all the witches have gathered in the large conference room to listen to the head witch speak (Angelica Houston). After her talk, she tells the witches to relax. They all decide to unwind and begin pulling wigs off one after another. They suddenly change from being normal looking people to being totally bald with hooked noses and big warts on their chins. It was not hooked noses or big warts that reminded him of this movie but the lack of hair on many of the patients sitting eating lunch. Indeed both waiting rooms we had sat in were filled with people with no hair. So too the corridors. No matter how they glossed things up this was still a cancer hospital and all those people with no hair were fighting for their lives by undergoing horrendous treatments and cocktails of drugs. At least we could see the external side effects of such treatments. If it was enough to rob you of your hair, eyebrows and eyelashes then what on Gods name was it doing to you inside. At least in the environment of Luke's there was no need to feel uncomfortable or self conscious. No one was staring at you or pointing and making fun of your baldness. Everyone knew exactly what the story was so no explanations or cover ups were ever necessary. Even Conor at this early stage did not find it unusual. He just accepted what he saw.

Radiation Treatment Begins

After lunch we returned to the waiting area and after several unsuccessful attempts at going to the toilet for Conor we were eventually called in to the treatment room. Conor was ready for his first blast of radiation.

I accompanied him into the room and was introduced to the team of girls who would be responsible for administering the dose of radiation. They explained to Conor what would be happening and even asked him what type of music he was into as they had a selection of music for him to listen to when he was undergoing his treatment. Conor told them Drake Bell and Oasis were his favourites but they were very apologetic when they couldn't come up with either. They did however, suggest that he bring his own Cd's with him in future and they would put them on for him. He was thrilled with that. And so the time came for him to put the mask on and be bolted to the table. The nerves and jittery tummy were back. So far everything had gone well but now it could all fall apart if he freaked out. The girls kept laughing and talking to him as they secured him on the plinth and casually introduced the mask which now had white tape on various parts of it . The white tape in turn was marked with crosses and dashes in several places. The mask went on neatly and then they were bolting it to the table. They explained to Conor that he would not be able to move at all but it would all be over in a few minutes. They never once suggested to him that he might be nervous. They maintained a casual everyday approach about the whole procedure and appeared laid back with him. They didn' t appear nervous so as a result he didn't either. For me their chattiness during the fitting also distracted me from what was about to happen and also from the tragic site of seeing my son bolted down to a table wearing what could only be described as his 'Death Mask'. Every time I was to look at that mask over the following six weeks and indeed now as I sit typing, for I see it just to my left being now worn by his large dinosaur in his bedroom, I was to have the same macabre feeling about it.

Everything was in place and Conor appeared calm. The girls asked for his okay to proceed and he raised his hand to give the go ahead. I was ushered from the room and Conor was left on his own. Big warning lights come on during all radiation treatments as it is so dangerous. Only the patient can stay in the room. The treatment is controlled from a station outside the room. We were able to view Conor on monitors and could even communicate with him. The girls sat down at their controls and entered several commands that immediately took effect. We could see through the monitor the arms and part of the machine move to reposition itself in order to target its radiation beams at the exact location. Within a few minutes it was all over and the girls were telling him through the mike that it was finished. Once we got the all clear, I rushed into the room to see if he was okay. He was as cool as a cucumber about the whole thing. He didn't know what all the fuss had being about and thought the whole procedure was incredibly boring. In the midst of all the trauma this was a victory for Conor. Things could have gone totally the other way and he would have had to contend with a general anaesthetic everyday for six weeks. We were all relieved.

Back To Crumlin

Our first treatment over, we headed back to the main reception area at the front of the hospital and called for a taxi to take us back to Crumlin. The journey back was not as bad as the one to Luke's earlier that morning. However, Conor was not happy at returning to hospital. He just wanted to go home.

When we arrived back on ward we were greeted by nurses with anxious looking faces. They were expecting the worst. I wasn't the only one relieved that Conor had sailed through the treatment. They were genuinely thrilled for him and set about telling all the doctors who came down on their rounds to drop into see the brave and courageous Conor McDade, who had become a legend overnight for his fearless attitude to being encased in a mask and bolted down to a table not to mention being blasted with noxious radiation at the same time. Most of the doctors truthfully expressed their personal horror and dread of ever having to go through it themselves. Conor was chuffed and told them they were all cowards.

Meeting Lynn

When we arrived back into our room we found a woman staring up at the television. She appeared to be talking to herself. The first thing I noticed about her besides her wonderful wavy brown hair was the mad stripey socks she was wearing. She turned as we entered the room and began talking to us as if she had known us all her life. She was going on about the fact that the television seemed to have no remote control and how the hell was any kid supposed to be able to watch telly without a control. She said she would make it her business to find us one. She started chatting to Conor and finally introduced herself as being Lynn, one of the nurse's assistants. She seemed to be brimming with energy and enthusiasm. I like people who are live wires and Lynn was definitely one. I couldn't help but warm to her immediately. She had a no-nonsense attitude about her and was quite direct in her questions about what we were in for. I told her I liked her socks and she laughed. She explained that she wore them especially for the kids and that she had all sorts of socks at home.

Lynn was to become a very important person in our lives and when St. John's eventually became our home in the final weeks and months she was a constant source of strength, support, friendship and humour. Yes, Lynn made me laugh even in the darkest days. She had this wonderful zany and eccentric appeal to her and a quirky way of looking at things that I could readily relate to. She would be there on two occasions when we thought Conor was about to go and then she was there on his final night. A wonderful warm, genuine woman with a heart the size of the hospital itself. There were many times the two of us ended up in tears laughing down in the kitchen or on the corridor.

A New Normal

I know many of you must question how it would be at all possible to find anything to laugh about in such tragic times but the truth is you do. Well I did anyway, but I know other parents did too. When the initial shock and disbelief has worn off one kind of settles in to some sort of routine. The tears that are constantly there in the early days eventually calm down and only appear occasionally when you are particularly tired or due to have scans or the likes. The rest of the time you slot into a new kind of normal. You must understand that St. John's ward was not a terribly depressing place to be. On the contrary it was a very lively and vibrant environment most of the time. It bustled throughout the day with consultants, doctors, nurses, physios and all manner of clerical staff. Then there were the parents, the visitors and of course the children themselves. There was always something going on. We chatted, laughed and gossiped on the corridors on many occasions. Yes, there were the awful times too but we didn't let ourselves think about them until they actually happened. You would go insane and also be of no use to your child if you were to go around in a tragic traumatised stupor all the time. Something terrible had happened to us all and for the best part we all just got on with it. One day you would be up, the next down. Some days the ups and downs were almost manic but we muddled through.

Keeping Him Happy

Conor was relieved that we still had the room to ourselves but that would not be for very long. By night time we would be sharing it with a small crying baby. I thought the stress of Luke's had been bad. I wasn't prepared for Conor's reaction and distress at having to share with a baby who cried all night. Not only that but he still hadn't gone to the toilet and he had eaten a fierce amount of food that day. His patience was wearing thin. The nurses gave him more laxatives but nothing seemed to be working. He was in considerable pain and his abdomen very bloated. He was also still finding it very difficult to do a wee.

The only thing that was keeping him sane were the expectations of wonderful gifts arriving with visitors. Conor had sent out an SOS to his sister to arrive asap with both a copy of the Smyths and Argus catalogues. This request had been spurred on by the fact that anyone who came to visit him automatically asked f he wanted anything special the next time they came in. Conor spent considerable time flicking through the pages of each catalogue, marking everything that caught his fancy. Then as visitors came he would single out those he knew to be suckers and suggest that it would be a good idea for them to buy a certain item for him. Of course they always agreed. Family and friends were prepared to fly to New York if necessary to source whatever it was that Conor wanted. He was being terribly indulged by everyone and I was a bit embarrassed by his blatant demands from everyone. However, his consultant laughed and told him to keep going and then reminded me that if that was what made him happy then so be it as long as those who had to buy the gifts could afford them. Once Conor had placed his orders, he would then keep the poor unfortunates reminded by sending them texts or leaving messages on their phone. Yes, he had a new phone and I had been hit for this one. He had wanted this phone for Christmas and so under the circumstances he got it early. He had a great time with it and he was constantly getting texts and messages on it from everyone who knew him and even those who didn't. His cousin Phoebe and his friend Aoife were getting girls in their classes to text and phone him too. He was in his element with all the female attention and would sit propped up on his bed laughing at all the texts coming in. It was great to see him happy. I do remember him one night though confiding in me that he wished he hadn't got all the gifts; the PSP, the phone, the games etc for he worried that he would have nothing he wanted to get by Christmas. You see these where items that he had planned to ask for at Christmas. He also said he felt like a spoilt brat and that he was after getting too much and felt guilty. Mind you that feeling didn't last too long. I don 't care what people say. I am happy he got all that he wanted and so glad that I didn't wait until Christmas to give him his presents. If I had they would still be sitting there today, still wrapped up staring accusingly at me. Conor would not make it to Christmas so we did the right thing by giving him what he wanted when he asked for it. At least he had time to enjoy them and they did give him much joy and also distracted him from his pain and suffering on many occasions

To be Continued.....................