Matthew's Journey

July 3, 1991, was the happiest day of my life. My first son had been born. He was so beautiful, so healthy, so perfect. I named him Matthew because it meant "God's Gift". Matthew was my whole life.

          On December 26, 1992, my whole life began to fall apart. Matthew was one and a half years old... I was babysitting my cousin Julia. She was sick so I was asked to keep and eye on her temperature. About an hour before her mom was to come and get her I had checked her temperature and she had a fever. Afraid that Matthew was also sick, I took his temperature. Much to my surprise, Matthew's temperature was higher than Julia's. I got both of the children ready and waited for my aunt to get there. When she arrived, we took the children to the emergency room.

         

          After being at the hospital for five hours, Julia was diagnosed with an ear infection. Matthew, on the other hand had some kind of virus. I was told just to keep an eye on him....give him Tylenol for the fever and give him plenty of fluids.... you know... the normal treatment for children.

         

          The next day Matthew was not getting any better. In fact, he was getting worse. He began vomiting. Another trip to the hospital, and once again we were sent home... but not before the doctor told me that first time parents sometimes get a little paranoid.

         

          The following day Matthew was still vomiting, to the point where he just wouldn't eat or drink anything. A few times that day he would be walking around, he would lose his balance and walk into the walls. As far as I knew, I figured it was because he was weak. But off we went again to the hospital. And again the same results. I knew there was something wrong.... first time mother or not... I just knew!

         

          This went on every day until January 5th. Matthew just seemed to be getting worse by the minute. He wasn't eating, wasn't drinking....hell ... he wasn't doing much of anything but laying on the couch looking like a little rag doll. Sometimes I got him to drink something, but he no sooner got it down and it was coming right back up again. That day I decided that instead of taking him back to the emergency room, I would take him to a doctor on call. Dr. Geiger took one look at Matthew and called the emergency room to let them know we were on our way. He instructed them to get a room ready on the children's floor and he also told them how incompetent they had been.

          After he had finally been admitted..it took several hours before we were finally settled in. The doctors decided to wait until morning before running any tests. I stayed with him through the night, resting on a small cot that the nurse had given me. Throughout the night, Matthew would wake up screaming. I would jump up and turn on the light to find him still sleeping. I took him out of his bed and we sat in the rocking chair in his room, and that is where we stayed all night. The nurse came in now and then to give me a little break.

          That morning a doctor came into the room, asked a lot of questions and told me that Matthew was dehydrated and wanted to get an intravenous started right away. We took Matthew to a little room that had a sign titled “Treatment Room” on the door. I sat beside Matthew and held his tiny hand. He was so dehydrated that they must have poked him twenty times and he never flinched. Another doctor came in to access the situation and started talking to the first doctor about meningitis.  I knew it was time to call Matthew's father.

          I left the room long enough to call his father and my mother, then made my way back to the room. I saw Dr Onyette running down the hall. With a closer look, I realized she had Matthew in her arms. Then she started yelling “Move out of my way! He's not breathing!!” By the time I caught up with them they disappeared through more doors that read “ICU”.

          They would not let me into the room. The nurse told me to go into the family room and they would be with me as soon as they could. Within minutes I had a social worker sitting beside me, explaining to me that Matthew had a seizure and stopped breathing. I just remember being very upset and extremely confused.

          By the time they came out of intensive care to talk to me, Matthew's father, my mother and my brother had arrived. Dr. Onyette told me the same thing that the social worker had said. But she also explained to me that Matthew needed a ct scan. And unfortunately the ct scan at the hospital was broke down and we would have to go by ambulance to the other hospital close by.

          Once we arrived there they told us that if there was anything wrong, they would call in a specialist to have a look at the results. So they took Matthew into the ct scan and again we waited.

          After what seemed like an eternity we heard someone calling what seemed to be a dozen doctors to the ct room...as much as I pleaded, they would not let me in. Doctor after doctor, they all piled into the room, all gathered around the monitor. Finally after about 20 minutes they called me in. They showed me the monitor which of course I didn't understand. One doctor explained to me that Matthew's ventricles in his brain were larger than they should be...then he walked away, leaving me there. All I kept thinking was... “Well! Fix it!”. Then another doctor walked up to me and said that they would have to operate to remove the tumour...and they would have to operate now.

          Very upset and still confused, they allowed us to see Matthew for 5 minutes before they rushed my baby to have brain surgery. If I had known at that moment, the severity of it all and the possible outcome... I would have taken a moment with him by myself.

          They wheeled him away and we were shown to the family room where we would wait out the surgery. As soon as we got there, Matthew's father said that he was going to go home and wait because he was tired and I could call him when Matthew woke up. It was then that I realized that leaving him six months before, was the best thing I had ever done.

          While my mother, my brother and I waited out the surgery, we had friends and relatives that came in to offer us food and some comfort. It was very thoughtful, but mostly I just sat by myself trying to figure everything out.

          When the surgery was over... twelve hours later.. the neurosurgeon came in to talk to me. He told me that he would have to do a biopsy of the tumour to see if it was malignant....but he was pretty sure that it was. So what the hell did malignant mean anyway??? I had no clue and was too afraid to ask. He also told me that even though the surgery was over, it was a very risky operation and Matthew may not even wake up at all. I figured at that point there was no reason to call his father. If he cared, he would be there. I just sat in the family room, cried and waited.....

          After another four hours, a nurse finally came in and said that Matthew was awake! I figured that under the circumstances, a phone call to his father could wait till I was damn ready to call him. I needed to see my baby first. The nurse explained that it might be difficult to see Matthew but that I had to be strong for him.

          I walked into his room and much to my surprise was my baby boy laying on a huge hospital bed with the sides up...tubes coming out of his body everywhere and I counted roughly thirty staples in the back of his head. I sat beside him, smiling gently, holding his hand and trying to fight back the tears and just trying to comfort him. I knew I was losing control and I didn't want him to see mommy cry, so I told him I was going to call his dad to let him know he was awake. I asked him if he wanted to see daddy, and because of the breathing tube, all he could do was nod his head. I gave him a kiss on the cheek and told him I would be right back. I went to the family room to call Matthew's father. His girlfriend Susan answered the phone and said that he was sleeping. I told her that Matthew was awake and she handed him the phone. I told him that Matthew wanted to see him. He said he would be right there. Six hours later he finally showed...with his girlfriend. He told me that he didn't care what I thought...he was taking her in the room to see him. But what he didn't realize was that I had full custody of Matthew and it was up to me who went into Matthew's room. To spite his actions, and the fact he wasn't there when Matthew woke up and that it took him six hours to come into the hospital... I let them both go in. They stayed a few minutes. He told me to keep him updated and then they went back home.

          I asked the nurse to page the neurosurgeon. I had to know what was going on. When I finally got to talk to Dr. Saunders he told me that he was positive that the tumour was malignant which meant my one year old son had brain cancer! I always saw those St. Jude Hospital shows where the children had cancer...but I never thought this would happen to me....to Matthew.

          In order for me to stay overnight with Matthew, the social workers gave me a room to stay in. These rooms were usually for people out of town, but they knew I was not going to leave Matthew.

          The following day I was sitting beside Matthew's bed. I asked the nurse if I could hold him. She said no because of all the tubes. I quietly asked her what she would do if this was her child laying there. She put down her stuff and said that she would help me. I needed to hold him.... even if just for a few minutes. After getting all of the tubes out of the way, she placed him in my arms. I gently rocked him, making sure that I would not pull on any of the tubes. I talked to him awhile and he nodded when i asked him questions. I sang his favourite lullaby to him “ you are my sunshine”. Well when I got to the last line.... I am sure you know how the song goes...I almost completely lost it. I vowed I would never cry in front of Matthew so I asked the nurse to place him back in bed. Tears welling up in my eyes, I gave him a kiss and told him I would be right back. I went into the family room and cried for what seemed like forever and I vowed I would never sing that song again... and haven't even to this day.

          A few days later, Matthew was moved to the Neurological Intensive Care unit, where he would spend the next couple of months. As it turned out... it was the next six months. I was told by the doctor that because of where the tumour was located ( fourth ventricle) they had to remove part of his brain, the part that controlled his balance. So ... I was told that he would never walk again. It didn't matter to me if he could walk or not, as long as he was still here with me.

          Even though Matthew's first surgery went well, he had many obstacles to overcome. Everything seemed to be okay ...or so I thought. One morning I was having breakfast in the hospital cafeteria. When I was done, I headed back to his room. He was sitting up playing with a toy, something didn't seem right. I just stood there watching. He was playing with the toy but he wasn't looking at it, instead he was just staring straight ahead. This caught me by surprise because whenever I entered his room, he would always yell out to me and put his arms out to pick him up. He didn't even know I was there. I walked slowly up to his hospital crib, standing directly in front of him and he still didn't know I was there. When I said hi to him, he then yelled out 'mommy!' I gave him a kiss and told him I would be right back to pick him up. I walked to the nurses desk, in tears, and explained what I had just seen. His nurse also started to get teary. It was amazing how close all the nurses got with Matthew. She paged Dr. Saunders and we waited.

          Once Matthew was assessed, he explained to me that during surgery, the tube that circulates all the spinal fluid from brain to the rest of his body must have become damaged and all the fluid was gathering in his brain and could cause blindness. He would have to put a hole into Matthew's brain to drain the fluid, but there was no guarantee that he would get his eyesight back.

          As I held Matthew's hand, they gave him some local freezing, made the cut in his head. Because they had to do brain surgery, they did not put the part of Matthew's skull back in place, so the back of his head was soft and so unprotected. He placed a tube inside Matthew's head and drained the fluid. Within thirty minutes, Matthew was able to see again. But that was only temporary, he would have to go through another surgery to have a shunt in place. A shunt is a tube that would be placed inside Matthew's head to circulate the spinal fluid that was collecting in his brain.

          Approximately one month later, Matthew was moved out of the Neurological Intensive Care Unit and placed into a room. I slept in his room on a cot beside his bed, only leaving long enough to do laundry, eat and pay bills.

         

          A month later, Matthew was transported to the other hospital where he was placed on the pediatric floor. He would then begin chemotherapy. They said that chemo makes a lot of people sick, but for Matthew it was okay. He still remained his happy, cheerful self, but he did lose his hair. But he thought that was cool, for me it was a little more difficult....who am I kidding... it was a lot more difficult.

          The months passed and he was finally allowed to come home. His chemotherapy treatments had finished, but he had to return to the cancer clinic once a month for blood work and the occasional transfusion.

          In February of 1994, it was time for Matthew's next CT scan. All of the waiting was making me crazy. A couple of days after the scan, I called Dr. Silva to ask her if she got the results yet. She  had said “ Don't worry, look at how well he is doing. The tumour couldn't have grown back”. A few hours later, I got a phone  call .It was Dr. Silva and she was crying. She gave me the dreaded news.... It was back. She explained to me that because he was so small that he wouldn't be able to go through chemo again and may not be able to have radiation. The choices were limited. She explained that we would have to go to Sick Kids Hospital in Toronto for further evaluation to see if there was any more they could possibly do. She told me to pack enough clothes because we would be there for at least a month.

          A few days later we said goodbye to our family and friends and headed to the big city....not something I was looking forward to. It was hard enough to go through that, but to do it alone was worse. We were told that Matthew would be admitted as soon as we got there and that my accommodations at the Ronald McDonald House would all be in order. When we got to the hospital, carrying Matthew in one arm and two suitcases in the other, we soon found out that Matthew would not be admitted yet. We had to cart the suitcases to the Ronald McDonald House, then had to go out to get diapers.       

          I hated Toronto already! I had Matthew in a wheelchair...in winter...in a strange place....trying to find a grocery store., without getting lost. No one even stopped to bother with us at all. It seemed like we walked forever and all of the shops had escalators or stairs...so we couldn't go in. I stopped at a corner, sat on a bench and started to cry. A man stopped and asked if he could help and I told him what I needed. He was kind enough to point me in the direction of a Bi-Way store. Once I got there I soon realized that the diapers were of course....upstairs. Frustrated again with the wheelchair, one of the employees graciously went too get the diapers for me. On the way back to the house I passed a one level store, so I bought some bread and lunch meat so we could at least eat something.

          A couple of days after we were settled in, we had to go to the hospital for Matthew's tests. Then the waiting began again. Once we finally got the results, the doctor told me that he would operate to remove as much of the tumour as possible and then after he had time to heal a bit, then the radiation treatments would begin.

          The radiation procedure was to take place at another hospital in Toronto. A van would take us there and wait for us, then return us to Sick Kids. The radiation sessions would be every day, and lasted for about twenty minutes of preparation and two minutes of radiation and a total of one and a half hours for transportation.

          The radiation was going well, although the treatments made Matthew's face dry and red. He was also put on steroids to decrease any swelling, but the steroids made him eat a lot and he was very bloated to the point where he was almost unrecognizable.

          For the next month or so we continued with the radiation treatments and he was eventually discharged from the hospital and continued to stay with me at The Ronald McDonald House. We even got the occasional family visitor, and managed a few trips home by train on a weekend or two.

          One night while I was sleeping, I heard Matthew moaning in his bed. I would get up to see what was wrong, but he was still sleeping. In the morning when I woke up I noticed that he didn't look well. It was an hour before the van would be coming to pick us up for his radiation treatment so I figured I would take him so that a doctor could look at him. Once we were there, the doctor proceeded to go ahead with the treatment and when Matthew got sick during the treatment he told me to take him right back to Sick Kids to have him looked at.

          When we arrived at Sick Kids, he was doing a lot worse. It only took a couple of minutes to get him into a room. Everything was happening so fast that I didn't know what was going on. They told me that I had to leave the room right away but gave me no reason as to why. I overheard the doctors and nurses yelling out orders for tests, medications, saline bags and oxygen. I knew there was something terribly wrong. I walked down the corridor and called my mother. I needed someone with me...I could not bear this on my own. Once I told her what was happening she said she would get some stuff together and would get a friend to drive her to Toronto.

          By the time I was allowed to see Matthew, he was on life support. I can't remember what they called it at the time, but he had some kind of lung infection. He had fluid in his lungs and could not breathe on his own. It was so heartbreaking to see him that way. The doctors told me once again that Matthew would not come out of this.

          By late afternoon my mother had finally arrived. I told her what had happened and took her in to see him before heading to the Ronald McDonald House to drop off her things. My mother was actually very supportive, but to make matters worse, Matthew's dad had showed up too.

          My mother and I stayed by Matthew's side most of the time, only leaving long enough to go for a walk or get something to eat. I guess we both just needed to escape for a little while. A couple of days passed and there was no change in Matthew. His tiny, lifeless body hooked up to life support and sedated on morphine. The doctors had given him a drug to reverse the morphine so they could determine what to do next. A couple of more days passed and he still hadn't waken up. They took him for a ct scan to see if he wasn't waking because of the morphine or if it was neurological. We could expect the results within a couple of hours.  When they took Matthew for the ct scan, the doctors said it didn't look good. His father asked the doctor if Matthew was going to die. The doctor had said that yes, it was an unfortunate possibility and that he didn't have a lot of hope. His father stated that's all he needed to know...and he was gone. My mother and I waited by Matthew's side for the results. When the doctor finally came back to talk to me, Matthew's dad was still nowhere to be found. The doctor told us that the results were okay. He was not waking up because he had been given too much morphine, that it was not neurological. In my mind there was still hope and I wouldn't think otherwise.

          My mother and I left and went back to the Ronald McDonald House to get some rest. I had a pager in case the hospital needed to reach me.  Before we went back to the house, I decided that I was going to go looking for Matthew's dad. The thought of him out there somewhere terrified me, because when Matthew had relapsed, he had told me to leave Matthew alone, not to put him through any more treatments and just let him die. I told him that until the doctors said there was nothing more they could do ...that I would do everything humanly possible to save my son. Seeing that he was an alcoholic and Matthew was on life support, I couldn't trust him to be alone with Matthew under any circumstances. Across the street from the hospital was a little restaurant that I had been accustomed to since we had been in Toronto, mainly because of the fact that it was so close. I walked across the street and looked in the window, and there he was, sitting at the bar, with a beer in his hand. I walked back across the street and into the hospital and into Matthew's room and found his nurse. I explained the situation to her and gave explicit orders that under no circumstances was he allowed back into Matthew's room until morning when he had the chance to sober up. And if they had a problem with that, to page me and I would come back to the hospital to deal with him myself. I got a page at three in the morning. I called the hospital and spoke with Matthew's nurse. She told me that he had shown up at the hospital, and she turned him away. When he tried to get past her, she said if he had a problem with the orders he could take it up with me when I got there. Apparently he was angry and got in his car and drove back to his home in Kingston....drunk. I called his girlfriend to explain what had happened so she knew he was on his way home.

          The following day, my mom and i were sitting at the restaurant where Don had been drinking the night before, having some lunch and a coffee. My mom asked what I thought was going to happen with Matthew. I told her I wasn't sure but I did know that I was not ready to go home without him.

          By some miracle Matthew was off life support a couple of days later, then eventually into a regular room. A couple of weeks later he was discharged from the hospital and would return back to the Ronald McDonald House with me. By this time my mother had gone back home. Matthew resumed his radiation treatments. After three and a half months of being in Toronto we were finally allowed to go back home to Kingston. Matthew's doctor told me that if he stayed in remission for two years, he would be out of the woods. Again...more waiting and a lot more worrying.

          After we returned home, we would again have our weekly visits to the cancer clinic. The thought of Matthew having another relapse was always in the back of my mind, but I knew we would have to live life to the fullest and not dwell on that....at least not in Matthew's presence. I had to make sure that every day of the rest of his life was a happy one.

          That summer after returning home, we spent some time my my dad and step mom at the cottage. We had a great time. When we returned home, we received some good news. I had a message on my answering machine to let me know that Matthew and I would be going to New York City so that he could meet Billy Ray Cyrus. It was great to know that Mathew would be able to do something he always wanted to do. He was forever singing along to Billy Ray's songs and strumming along on his little guitar. It was absolutely adorable.

          I decided to take Matthew's comcare nurse with us to New York City, just in case we needed her, and I felt a lot better knowing that we were not going alone. New York City was fantastic, better than I would have ever imagined it. Billy Ray Cyrus was so great, so kind, and very down to earth. He talked to Matthew for a bit and even signed his guitar. It read: “ Dear Matthew... I Believe in miracles....Do You?” And he also gave Matthew his guitar pick that he was using during the concert. He told Matthew... “ you can't play a guitar without a pick son”. I will never forget that as long as I live...I am sure Matthew won't forget that either. While in NYC, We did a lot of walking, shopping, and eating....it was a great time. Someday I would like to go back.

          The next year or so went great. Matthew was doing well. He was going to school and doing things that all the other children were able to do. Then I met Scott...my future husband....who later became my ex husband... you don't need those details...

          In October 1996, we had a few incidents of having to pick Matthew up at school because he had been sick. At the time he had been going to school on Tuesdays, Thursdays and every other Friday.  I called Matthews's doctor and explained the situation and told her the exact days that he had been sick. She thought that because he was only getting sick at school that he might have been stressed at school, but I knew him better...Matthew loved school. So again she booked another ct scan for him.

          The day of the scan Scott drove us to the hospital. We got the scan over with and were told to wait in the waiting room for the results. For some reason, Scott had to leave us at the hospital... I think he had to drive his mother home from work. While Matthew and I were waiting, there was a girl there with her children. I can't remember her name, but when Matthew had spent a lot of time at the hospital, her son was there too. She offered to watch Matthew for me when the doctor came out and said she needed to speak with me. I was grateful that she offered to watch him because I knew it must have been bad news and I didn't cry in front of Matthew and I didn't want him to hear it.

          As I sat in the waiting room all I could think about was being told that if Matthew was in remission for 2 years that he would be out of the woods. The next month would be 2 years. The doctor came into the room with Matthew's nurse...and sat down beside me. My heart sank as she told me that the cancer was back...and there was nothing left that they could do. All I could do was make sure he was as comfortable as possible and make every day count. If matters couldn't get worse.... she said he had 6 months left. I sat there and cried and cried....and just couldn't stop. I went out into the hallway...grabbed Matthew and held him in my arms and just kept crying.

          I finally put Matthew down and tried to regain control. The girl that had watched Matthew said she would stay with me until Scott came back. The doctor had made arrangements so that we could have hospice come to the house to care for Matthew. I had made a choice long before then that if it came to this...I would keep him at home. Scott finally arrived..I put Matthew into his car seat and cried all the way home. When he finally asked what the doctor had said....all i could say was that the fight was over.

          The next little while was very difficult for everyone. I always had to pretend that nothing was wrong whenever Matthew was around. How could I ever tell me son that he was going to die....I just couldn't.

          In November I got the news that the Sunshine Foundation was going to send the 3 of us to Walt Disney World..and the sooner the better ..before he got too sick to go. In December, Matthew started going downhill. Hospice had sent a hospital bed to put in our living room so that Matthew would not have to go upstairs and I could always keep an eye on him. He was put on morphine injections, which I had to learn to administer, along with other medications. Christmas was very difficult. I put Matthew to bed on December 23 and he woke up on christmas eve for about 5 minutes. I sat him on my lap and we said a prayer together. When I was done, I asked him if there was anything he wanted to say... My heart sank as he said “Jesus tells us when it's time to go to Heaven mommy”. I couldn't believe it.... he knew what I didn't have the courage or strength to tell him. I gave him a kiss and held him tight, never wanting to let go. He said he was tired and wanted to go back to bed. I laid him down and went to my room to cry. That was the last time I saw him awake until December 26^th. I was so relieved when he finally opened his eyes.

          The next couple of months were very routine. He slept and when he had the strength he would play nintendo games. Our next door neighbour started a fund raiser for us. The money that was raised was to pay bills, get medications that were not provided, or whatever Matthew wanted that would make the rest of his days happy. But along with the fundraiser came media coverage...which we could have done without....

          Matthew's dad was still being difficult. He was upset because I would not allow Matthew to go to his house. In order to keep Matthew at home, I had been trained on injections and to be able to watch for any signs of deterioration. As far as I was concerned..it was always me taking care of him and that was the way it was going to stay. I got a letter from Matthew's neurosurgeon that said just that.... that Matthew was to be in my care at all times. I was with him in the beginning and I would be damned if I wasn't going to be there in the 'end'. Maybe I was being selfish.... but I was entitled. It was me that took him on countless trips to the hospital, gave him his medicines, waited for test results, spent months in Toronto and also the one to make the funeral arrangements.... I was the one that he could count on everyday for love, commitment and support.

          March 28, 1997 (Good Friday) that year. The day started out so great. Matthew woke up, had breakfast and we actually managed to go for a walk. I put him in his wheelchair and we walked down to the creek and threw rocks into the water. Even though I knew he was too weak to carry on a conversation...I knew he was listening. It was such a sunny, peaceful day.

          Later that day his dad came by. He sat on Matthew's bed and said ' when this is all over you will get what is coming to you'. I didn't want to argue with him... so I let him have some time with Matthew. I went next door to my neighbours house.  I didn't even get to tell her what was going on and her phone was ringing and scott was at the door. I ran home and was told that there was something wrong with Matthew's breathing. I knelt beside his bed, held his tiny hand in mine and watched his breathing. He would take a breath then it would seem like an eternity before he took another. This went on for another 15 minutes. I just sat there holding his hand....watching....i wanted to cry...but I didn't want to miss a single breath. The house was so silent but so full... we must have had about 10 people there..since it was Easter Weekend and people had come over to see us. Then it happened.... my little angel took his last breath. I leaned over and held him tight. Matthew's dad...being the sensitive person that he was said “i'm sorry but we knew this was going to happen”

          I took Matthew into my arms and sat with him on the couch....his lifeless, fragile body ....I held him tight and just kept saying ...i'm sorry....i'm sorry....and I wept.....