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CONNOR'S PAGE
Connor Titmarsh
Born October 13th, 1998
INDEX
Connor's Story
On the 22nd of March I took Connor to the doctor, because he had become very unsteady on his feet all of a sudden, and I thought he must have had an ear infection. The doctor said his ears were fine, and that it may be a build up in his sinuses, and to give him a decongestant for a week and if it wasn't better by then, to come straight back in.
That week Connor began to vomit every second morning, which we now know, was to relieve the pressure in his head. He also started to squint when he would try and focus on something, and he went from being outside all day everyday, to sitting inside watching a playschool video, which he had never done before. So before the week was out, I took him back to the doctor and told him what had been going on. He said he would send him to Townsville (200km away) to his pediatrician and he may do a CT scan to have a look at the back of his head were the balance is. No mention of a brain tumor, so I just said fine, not knowing what a CT scan was. It wasn't until I told my mother he was going for a CT scan that she asked "do you know what they would be looking for?" and I said "no" and she said "probably a tumor" that it hit us.
The thought of a brain tumor in an 18 month old child is unthinkable.
So Paul and I headed of in the morning, the whole way in the car reassuring each other that it will just be his ears. The pediatrician examined Connor and felt that there was nothing wrong with him, but that they would send him for a CT scan just for piece of mind. Connors balance was really good because he had vomited in the car on the way, and this is what deceived the pediatrician.
We went and got the CT scan done, Connor screamed the whole way through, as they didn't realise his age and didn't sedate him. At the time I had one week to go before I was due with our second son, so I had to stay out of the room and watch the computer taking the photos. When we were back in the car I said to Paul I couldn't see anything, and we again thought that it would just be his ears. We arrived back at the pediatrician and he took us straight in and said " I don't know how to tell you this but Connor has a tumor and it's big." Well our world crashed down around us, we all sat there looking at each other, and not one of us knew what to say. The doctor seemed just as shocked as we were. He organised an MRI to be done the next day, and he said he would ring us that night. We got outside and I was crying and Paul was crying and Connor looked at me and said, "mum" and got upset. So I had to stop crying and say "it's alright."
Paul rang our parents because I knew I couldn't do it. They both got in their cars and drove straight up to be with us. Luckily for us Paul's sister lives in Townsville so we all stayed there. Eleven of us in the one house, Connor thought it was great, he didn't know what was going on. All he knew was that all the people he loved were there waiting on his every order. We had the MRI the next day, then went to the neuro surgeon the next day, which was Friday, he scheduled the operation for first thing Monday morning. We spent the weekend with him as a family and had a really great time.
Sunday night a cyclone hit Townsville and the power was of from midnight, We woke up (not that we slept at all, I don't think I had more than a few hours sleep since the Wednesday night) and the power was of. We heard on the radio that all surgery at the hospitals were off, and to contact your doctor. We rang and couldn't get on to anyone, so we went to the hospital and were told the operation would be done the next morning. So we went home and spent another day with Connor. My sister flew up from Brisbane to help, as she is a nurse, and when they start throwing medical terms at you, you walk away knowing no more than when you went in. So we got Angela to be our interpreter.
The next morning we turned up at the hospital, we gowned him up and everyone kissed him good bye in the waiting room. There was a pretty young blond girl and he was pointing to her wanting a kiss from her. He has started young! Paul and I carried him to the operating room, but only one parent could take him in, so Paul kissed him good bye and he was waving and blowing Paul kisses. I carried him in and put him on the table, they put the gas on him and he went to sleep. They said it would take 3-5 hours so we decided to leave the hospital for a while to help pass the time, as we knew we were going to be stuck there a long time. We came back a couple of hours later and sat in the waiting room near the ICU.
Just after midday the surgeon came to see us, he didn't look happy at all, he told us that the tumor was malignant and that it had come out of the capsule and attached to the brain stem. They hadn't been able to get it off, and in doing so they almost killed him twice. We went straight in to see him, he had a bandage around his head and a few tubes coming of him, but he was breathing by himself. He lay there coming out of consciencness about every 2 hours and I would talk to him and tell him silly stories about all the things he loves to do. I would say guess who is here and he would say "pop" and when he would come out, he would ask for mum so we knew it hadn't affected his speech, which they said it may.
He spent 3 says in ICU, then went to the ward. When the doctor examined Connor, he would kick and push him away, which was a good sign that he would be able to walk. Over night he went from the friendliest little sticky beak to a scared terrified little boy. He couldn't stand anyone. He didn't want anyone coming near him, and just to take his temperature became a major ordeal. In the end I became the nurse doing all his obs for them. In the meantime I had our second son by c-section which was put back 4 days to allow Connor to improve enough. We shared a room, Connor, Riley and myself. Connor was discharged but stayed in hospital with me, then 4 days after Riley was born I left hospital because we had to see the oncologist who had flown up from Brisbane. She was going to tell us what sort of tumor he had. Our neurosurgeon had gone to America before the pathology results had come back, they actually took a week and a half. The pediatrician told us Connor had a teratoma, so we read up on it, and the information said they are born with the tumor. We couldn't work out that if he was born with the tumor why do they say it's a fast growing aggressive tumor. The Oncologist told us he had an atypical teratoid/rhabdoid tumor, and that it had probably only been there around 2 months. We spoke to her and she gave us the pros and cons of the chemotherapy and left us to make up our mind. If we wanted to go ahead and have chemotherapy, he had to have another MRI to see if and tumor had gone down into his spine, and if so there was no point having chemo because there was nothing they could do. So of we went for another MRI which thank God, showed nothing. It was the first good news we had had in a long time.
We spent Easter at home with our families, then the next day flew to Brisbane. We are lucky that both my sisters live in Brisbane and we could stay with either of them. We went straight to the hospital and were admitted, they let him go home for the night because his portacath wasn't going in till 10am so we had to be back at the hospital at 8am. He went in and got his port put in and two lines that morning. He started his chemotherapy that night which was:
cisplatin through the iv
vp16 through the nasal gastric tube.
Paul stayed in the hospital the night as Riley was only one week old and I am breast feeding him. Paul had a pretty traumatic night with changing nappies every 45 minutes, one Connors' lines coming out causing Connor to be sitting in a pool of blood, and just the fact that he hadn't slept at all. Nanna, Granddad and I came in the next morning expecting him to be sick, and not knowing what to find, but Connor was sitting on his bed playing with his cars and trucks which he is mad about. Paul looked like a zombie! Connor was allowed to go home that afternoon, so we got a crash course in administering his chemo through the tube and all his other drugs. Home we went loaded up with medicine, chemo, syringes, mouth washes, litmus paper, emla cream, and a child that was happy and didn't even look sick. We came back to the hospital after a week for blood tests and a check up. We decided to get his blood tests done with a finger prick instead of the port, it didn't seem as bad.
After 21 days we were back to start it all again - hearing tests, kidney tests, then the chemo. This time the cisplatin made him vomit once at night, then he vomited a few times over the next week. We are now up to day 14 and have been allowed to come home to Bowen for two weeks. We go back down on the 13th of June for another MRI and to start cycle 3 on the 20th June.
Today, 19th June, Connor is going into hospital to start his third round of Chemo.
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