Christopher, or Kip as we all called him, came into this world on his due date, 25th April 1998. He was a perfect baby, so easy and contented and he grew into a lovely, loving, affectionate toddler. Everyone who met him said what a special little boy he was.
Christopher was a normal healthy happy little boy, or so we thought. We weren't aware of any problems until January 2001 when he started having asbsences or seizures - he was two years old. He was given medication and the seizures stopped much to our relief.
It wasn't until towards the end of March that he became really unwell, complaining of a headache, vomiting and being really drowsy and uninterested in his toys.
After a short stay in hospital and a CT scan it was discovered that he had a large brain tumour and needed immediate surgery. He was transferred by ambulance to Birmingham Children's Hospital and on 31st March 2001 he underwent an 8 hour operation to remove the tumour.
It was decided that he should start chemotherapy shortly after the surgery and he had chemo every 3 weeks which usually involved a stay in hospital for up to 4 days at a time.
Even though he was having chemotherapy he was amazingly well. He wasn't ill from the chemo and was a happy active child and was back at playgroup and doing all the activities that a normal 3 year old would do.
Most of his chemotherapy was given at Walsgrave Hospital in Coventry as it is much closer to where we live and there was such a shortage of beds at Birmingham Children's Hospital. There's nothing worse than getting yourself ready both physically and emotionally for a stay in hospital only to be told that there is no bed available!
We had a lovely summer with him and a fab family holiday in the August at the caravan in Devon provided by the Children's Hospital - the picture below right was taken on that holiday.
Sadly in October he started to show signs of being unwell again and after a short stay in our local hospital and then a trip back to Birmingham, a scan revealed that the tumour was back. Our hearts sank. He'd been so well - we really thought he was going to beat it.
This time it was more complicated. After the surgery to remove the tumour they left a drain tube in Christopher's head which was attached to a bag so that excess brain fluid could drain into it until the swelling went down. The drain was in for about 3 weeks and had several problems including a severe infection that sent Christopher's temperature soaring to over 40° and he had to have antibiotics injected into the drain straight into his brain fluid to try to combat the infection. It also had to be resited as it was leaking which meant another trip to theatre.
There was more bad news because after all this they then decided that they hadn't managed to remove all the tumour and so needed to operate again. That was a dreadful time and we really felt like he, and we, couldn't take anymore.
The surgery went well and the they put an internal drain (a shunt) inside Christopher's head and down into his tummy so that the excess fluid could drain in a similar way to the external drain.
Sadly there were several problems with the new shunt and at one stage my poor baby was having to go back to theatre almost once a week to have the shunt unblocked - this happened about 4 or 5 times until they modified the shunt so that it wouldn't block again. We finally managed to get home (bearing in mind we'd been in hospital almost contantly since October) on the afternoon of Christmas Eve. We spent Christmas at home but sadly had to go back boxing day afternoon as he wasn't well at all.
Monday, March 31, 2008
Monday, March 03, 2008
This is Christopher's story in more detail. It's written just as it came to me at the moment and I may edit it at a later date.
We were transferred to Birmingham Children's hospital by ambulance on the Thursday afternoon and he was due to have the op at 9am on the Friday morning with a warning that if he deteriorated in the night they would operate there and then.He woke at 5.30am starving and begging us for food - he was on steroids for the swelling and that's what made him so hungry. As his op was booked for 9 we couldn't feed him - it was one of the most awful times, your child begging you for food, he looked so ill and was deteriorating and we couldn't feed him. We tried everything to try and pacify him - went into the parents room to put videos on - played with him sang to him told him stories but all he wanted was food. It was the longest 3 hours ever just about. As the time for the op got nearer Andy got really upset and the nurses pulled the curtains around us - we were terrified - our two year old boy was going to have major brain surgery - we didn't know if he'd survive it, didn't know if he'd be disabled - deaf, blind, not be able to talk, would he even recognise us. The waiting nearly killed us - the pain I felt was physical I can't describe it we were terrified. Then at 3 minutes to 9 they came to tell us that the operation was cancelled. We didn't know whether to laugh or cry, whether we were relieved or gutted.
Andy just looked straight at the nurse and said 'does that mean he can eat then' and she said yes and he went like lightening down to the restaurant and got the biggest box of sausage and beans you ever saw and brought it back to give to Christopher. The poor little mite (and us) had gone through all that just to have it cancelled right at the last minute.
He was happier once he'd eaten but then a theatre slot became available around 11am but because he'd eaten he couldn't have surgery I remember every minute even though it was 6 years ago.
Anyway by lunchtime my Mum, sister, Kate, Matt and my cousin Clare were at the hospital waiting with us, even though is was Clare's sons birthday - she stayed there all day with us.
We were pacing the hospital - Christopher was quite ill and quite unreasonable due to the steriods and him being so ill. We spent hours taking it in turns to push him around the hospital in a buggy. Reading him stories - we couldn't even get him to have an afternoon sleep and it was so not like him to have a sleep.
Again we got the nod that the operation was going to take place sometime after lunch - we waited and waited but nothing happened. Me and dh were exhausted - we hadn't slept all night and had been up since 5.30. The stress was unbelievable - starving him then feeding him then waiting.
Anyway we were told to bath him and get his gown on as he would definately be going down for his op at 5pm. We all got very nervous. I remember bathing him but had to be careful as he had special markers all over his head that they'd put on during the scan ready for the operation. I got him into one of the hospital gowns and tried to explain to him what was going to happen - as much as a 2 year old could understand.We got him in bed all ready to go and then at 5.15 the operation was cancelled again! A baby had been born with it's intestines on the outside of its tummy and needed urgent surgery and although Christopher was quite ill - the baby needed the theatre more than he did.
We couldn't believe it. It was such an awful day. I found out a few months later that the ward sister filed an incident report because of what went on, she'd lived the whole day with us and felt and seen everything that had happened.
So the surgery was then booked for 9am on the Saturday morning. They never do surgery at the weekend unless it's urgent so we had to try to sleep and do it all over again the next day.
It's inconceivable that when you are going through the worst time of your life - it can be made even worse by circumstances.
My sister, Jane. Was living in Colchester having been in the army for a few years. She was living with a partner and had a job that she loved - on the day I rang her with Christopher's diagnosis she packed up her whole life and came home. I don't know what we'd have done without her.That night (of the cancelled ops) she told me and dh to go to Edward House (who we do a lot of fundraising for) and get a good nights sleep and she'd sleep by Christopher's bed. She took us down to the restaurant (Kip in his buggy by our side) and made us eat something as we'd not eaten all day. We managed to eat a little bit. Later that night me and Andy went back to Edward House and did eventually get some sleep.The next morning we woke up and got ready. We could barely even manage to drink a cup of tea. We went back to the hospital (a 10 minute walk mostly through the hospital) and my legs were like jelly, I felt sick and so scared. Andy was white. My sister was in the play room with Christopher. She had woken him up in the early hours to give him something to eat and drink so that we didn't have a repeat of him being starving and begging for food. They'd had quite a good nights sleep and she made us laugh telling us that she was just dozing off to sleep in her little camp bed and a little voice said 'Aunty Jane' and she said 'yes Kip' and he said 'I just twumped' and she laughed and said that's nice go back to sleep then. A few minutes later the same little voice said 'Aunty Jane' and she said 'yes' and he said 'I just twumped again'. I'll never forget that and she often mentions it.
Anyway when we found them she was reading him stories in the playroom on the ward. He looked so cute but was more shaky and pale than he had been.
Before long the anaesthatist came to chat things through with us, then the surgeon but all I could think about was if it was going to happen today. I was so scared that it was going to be cancelled again.Dh couldn't stand it and went roaming round the hospital, he said he didn't want to see him go off to theatre and didn't want to come with us.
After a while they came to fetch him and we walked along side his bed as they wheeled him the short walk to the theatre.Just as we were going down the corridor dh appeared and ran towards us and gave Christopher a kiss and said a few words to him and then was gone again.My sister and me went into theatre with him but only I was allowed in to the anaesthetic room. They spent time with us, they were so lovely and Christopher seemed really calm and settled. I waited until he was asleep and made sure the nurse had his dummy and comforter and I asked her to look after him and she put her arm around me and promised me she would.
I went back to my sister who was sitting in the waiting room and she gave me a big hug and we went off to find dh.We'd decided that there was no way we could stay in the hospital, I couldn't sit looking at the empty bed space so we all went off into Birmingham just for something to do - a distraction I guess. It was going to be at least four hours before we'd know anything and the staff had my mobile number.
I felt relieved in a way - it was strange but as soon as I'd handed him over to their care I knew there was nothing I could do, I had to trust them and I did. It was like a burden was lifted knowing he was finally having the op that he so desparately needed, although we were nervous - it could have been all over in that four hours.
It was weird wandering around Birmingham. It was a busy Saturday and everyone was getting on with their lives - they had no idea what was going on - my son was having brain surgery and they were chatting and shopping and arguing. We went to the Early Learning centre to choose some presents for him and I remember choosing some bob the builder stuff and saying to my sister 'I wonder if he'll ever get to play with it'.
We eventually went to McDonalds for some lunch and I rang the hospital to see if there was any news. Apparently they hadn't started the surgery until around 11am - I'm not sure why it probably took ages to get him ventilated - get all the lines in (neck and groin and canula in his hand), and they have to fix his head in a brace thing to keep it absolutely still and make sure they are going in at exactly the right place. The surgeon apparently videos all his operations and did offer for us to see it!
I can't remember what time we got back to the hospital - possibly around 3-3.30pm. Then the nervous waiting began. Later on my Mum arrived with my Uncle and we sat in the parents room just waiting.In the end the surgery took 8 hours - I couldn't believe it - my poor little baby had been in the theatre for 8 hours.
The surgeon came straight up to the relatives room to talk to us - he looked absolutely exhausted and told us what a long operation it had been.He said it had gone really well, he thought he'd got most of the tumour out. He explained about the wound and I asked if he'd shaved his head and was amazed when he said he hadn't!He said he'd probably have a black eye the next day but he seemed to think he was fine with no complications but I wouldn't believe that until I saw him - I was terrified he wasn't going to know us, wasn't going to be the same.
I then asked what he thought about the tumour - he knew exactly what I meant - I wanted to know if he thought it was benign or malignant. He looked at me and screwed his nose up and said 'well it didn't look very nice' but that they wouldn't know for sure until they had the histology report back.
He said they'd be up to get us in a while, they were just keeping an eye on him and making sure he was awake and ok before we could go down.I was desparate to see him. It seemed ages before they finally came to fetch us - just about the longest time I'd ever been away from him.When they came me and Mum went down. We got into recovery and I could hear him before I could see him. Apparently he'd come round very quickly and they hadn't managed to get the line out of his groin and were trying to do that but he was getting a bit unsettled and asking for McDonalds!
He was shaking uncontrollably and that really scared me and I couldn't seem to get him to look at me or respond to me and it was freaking me out.A nurse went and got a warm blanket and put it over him and it calmed him right down. We eventually went back up to the ward and it wasn't long before I knew that he knew us all. I tried to show him the stuff that we'd bought from the early learning centre - I thought if I could distract him - get him to play and talk that everything would be ok - I just needed to know that he was ok. I didn't seem to take in that he'd just had major surgery.
Eventually all the family left and it was just me and dh. That night was so scary. We were told that the first 24 hours were critical as if anything was going to go wrong it would be then - I was so scared that he was going to haemmorhage. I couldn't believe that they woke him up - I thought they would keep him sedated but apparently they need them to be awake and alert as if there is anything wrong they can spot it straight away.
I just wanted them to leave him alone but they couldn't - he had to be closely monitored and what really upset us was that they had to turn him over every half an hour. They couldn't leave him in one position too long because of letting all the blood etc settle on one side. That was awful because he didn't want to be moved - it hurt him.
I was so anxious. I watched him like a hawk. I remember around 11pm the nurse persuaded me and dh to go back to Edward House and try to sleep - she promised me that if there was anything or if he asked for us she'd phone us. So reluctantly we left him - we were shattered.We went straight to sleep and the phone rang around 3am - it really scared us but the nurse said straight away 'don't panic there's nothing wrong it's just that he's asking for you'. So we got dressed and went back over to him.
The staff on the ward were brilliant - they totally knew their stuff, amazing and we'd never have left him if we hadn't seen them at work and seen how brilliant they are.It's odd but there's only so much you can take - there's only so long you can sit seeing your child with lines everywhere and monitors and jumping everytime you heard an alarm go off or staring at his blood pressure and pulse to see if it was an indication that something was going wrong - you need a break, you need to get away.
We got through to the next morning with no problems and I was amazed how well he was doing.
The Sunday morning was good. Christopher was in quite good spirits considering everything he'd gone through over the last few days. He had the biggest black eye and it was closed shut but he seemed to be his normal self. He was still having to lie on one side or the other and kept complaining that he couldn't see the telly when he was lying on the side of his 'good' eye - we had to keep squashing the pillow down so he could see.As he was ok I was persuaded to go home for a few hours and have a break and dh agreed to stay. I'd been more or less constantly in the hospital for a week by this time as he'd been in our local hospital for a few days before they diagnosed him.I felt dreadful going home on the train, felt like I was abandoning him - I almost didn't go.
Anyway I had a bath and got some fresh clothes and had a lovely sunday lunch with my family and spent some time with the kids.I was very anxious to get back and we set off back to the hospital around 2pm.When we walked back to the ward I could see dh - he was very anxious and was pacing about. Apparently Christopher had had a screaming fit (very unlike him) and just screamed and screamed and he didn't know why and he hadn't spoken or been responsive since.I felt sick when I saw him, his face was as white as a sheet and he was only moving his eyes - he didn't respond at all - I was convinced something really bad had happened. My heart was pounding and my heart was in my throat, I was really really scared.I tried to stay very calm and went and sat next to him and tried to get him to react to me - eventually he did and I was sooo relieved. It turned out he was very anaemic and needed a blood transfusion which they started later that day. We also found out months later that there was evidence of a small 'bleed' on one of the scans and I'm convinced that was what happened that day - thank goodness it was only small.The family stayed for a while and the children spent time with Christopher and he was really pleased to see them. Then Andy went home with the rest of the family and for the first time since we got to Birmingham I was on my own.Our vicar told the congregation on Sunday morning all about Christopher and they were all really shocked and upset.
There was a collection made for us, someone suggested they'd like to send us some money as they felt so helpless and knew that being in hospital and all the travelling was so expensive (it's a 70 mile round trip from our house) - plus eating in the hospital restaurant etc.On the Monday morning John (our vicar) turned up with £300 which he gave to me and said he'd already given £150 to my Mum to help her as she was looking after Katherine and Matthew full time as Andy had to go back to work.
I was so touched but it was about so much more than the money, it was about people's love for us - with each pound they gave I knew what they were really giving was love and care.....
Next bit.
As the days went by Christopher got better and stronger. I remember - I think it was the Monday - they decided to change his bed, they wanted me to have him on my knee and I was so scared. He was wired up to all kinds and still had a huge line in his neck. I sat right next to the bed and they very carefully lifted him on to me. The poor little lamb gripped on for dear life - he thought he was going to fall, I didn't realise at the time but his balance had been affected. He'd spent months unconciously compensating for the huge mass growing in his brain and all of a sudden it was gone - that must have been a really strange sensation. I had to reassure him and he just kept holding on to me so tight and all he wanted to do was get back into his bed and lie down. It wasn't long before he was back in bed where he felt safe. He was sitting up slightly now, the beds in the hospital are amazing and move up and down in all directions to make the patient as comfortable as possible.
One of the things that was really bothering us was how he kept jumping when he was going off to sleep. He'd been just dozing and all of a sudden his body would jerk, sometimes quite violently, and wake him up. We were really concerned about it and had lots of discussions with the nurses. They decided it may be a combination of things but was most likely to be breakthrough pain. Although he was on regular pain killers and never seemed to be in much pain - there must be times, after having such major surgery, where the pain would feel quite sharp. It seemed to go on for days but eventually did subside and we were very relieved as we thought he'd suffered some sort of neurological damage.
They'd taken a plate of bone out of his head to get at the tumour, but replaced it after, probably about 3 inches in diameter but after the swelling had gone down you couldn't see it, although it was to become more obvious after subsequent surgery.Four days after the operation we had gone down to the playroom, he was free from all his lines and monitors and I carried him around as he hadn't walked since his op. I remember he wanted to try and walk. Bearing in mind he'd had to work hard to get used to the new balance after having such a huge weight taken out of his head.
I remember so clearly we walked, very tentatively, along the ward back to his bed, he was holding my hand tightly and was quite wobbly but he walked! Everyone stopped to watch him and they clapped when he made it back and were amazed at how quickly he was back on his feet - I felt so proud of him.That was when I began to realise what a truly amazing and very brave little boy we had.
It seemed to be forever waiting for the histology report on the tumour. We just needed to know if it was malignant or not. I remember one day that one of the doctors on the ward said he'd heard that it was good news and that the tumour was benign. I remember we were so pleased - I was so excited and started texting everyone to tell them. I couldn't believe it - even though I knew it wasn't official I just clung on to that piece of good news.
We were told that he shouldn't have said anything and that the tumour had now been sent to Queen Elizabeth hospital in birmingham for further analysis.
Before long we got the gut wrenching news that the dr's were coming up to see us and were going to tell us what they'd found and what was next.
I remember going into a side room with Dr. Grundy (oncology consultant), one of the nurses, my sister and Andy. They said that the calsification on the tumour, which bascially was similar to rings in a tree trunk, suggested that the tumour had been growing very slowly for probably most of Christopher's life and although they couldn't say if he was born with it, they said it had certainly been growing since he was very small. Now that in itself was good news - it meant that it was a low grade tumour and very treateable. The trouble was, and this was why it had taken such a long time to get a final result (two weeks), there was some elements within the tumour that were high grade - in fact they were grade four which is as bad as it gets.
He said there was a way forward - they would start him on chemotherapy straight away and possibly radiotherapy although they preferred not to give radiotherapy in a child so young as it would have serious consequences for his ability to learn and complications later in life - so the longer they could leave it the better.
I asked what they thought the chances were of curing him, I'm not sure what I expected them to say but it certainly wasn't what we were told.The Constultant said he thought there was a 30-40% chance of a cure. I looked at him - I wasn't sure I'd heard him right - I was gobsmacked - time stood still. I said you mean there's only a 30-40% chance that he'll beat this and he said yes, I'm really sorry but we'll try everything we can. All I could think about was that meant there was a 60-70% chance he would die.I remember putting my head in my hands, I took just a couple of minutes to compose myself and then I was fine. My sister said she was amazed - she couldn't believe how well I kept it together. At this point Andy left the room, he'd heard as much as he could take and he didn't want to hear anymore.
I stayed with my sister and asked a few more questions.They said they would start him on the first round of chemotherapy before we left the hospital but they needed to put a central line into Christopher's chest ready for the treatment. I asked so many questions and I remember the consultant saying 'if we didn't think it was worth a try, if we didn't think there was a chance we could cure him we would tell you'. I discovered that that was true - they were always very honest with us.That night they let Andy stay on the ward with me and Christopher as we'd had such awful news. It was awful - we were hurting so much, I was trying to stay strong and trying to say all the right things to Andy but I didn't believe half of what I was saying. I just felt if I could keep him strong then I could stay strong.
We decided that we wouldn't have the normal 'hickman' line that most children had as it consisted of 3 lines hanging out of his chest and the risk of infection was quite high and as he was so young and it would soon be summer I wanted him to be able to be as normal as possible. If my baby had got to have poison pumped into his body on a regular basis (every 3 weeks) then the rest of the time I wanted him to be a normal little boy.We decided on a port - which was very similar. It was a line that went in through his neck and down to the main vein right next to his heart. But the port would sit under his skin - it did mean that each time they needed to use it - he would have to have a needle in his chest - but the rest of the time he wouldn't even know it was there. Plus they always put anaesthetic cream on before they put the needle in so that he wouldn't feel it go in.
We again were messed about waiting for him to go to theatre to have it done - we starved him only to have the op cancelled at the last minute. The surgeon who was going to fit the port moaned because we'd decided on a port and not a hickman line. By this time I was learning to get more assertive and I pointed out that it was an almost identical operation and it just wasn't fair to keep us hanging on like this. If he wasn't going to do the op then he had to tell us as I wasn't prepared to keep refusing to give my son a drink when he asked for one.
Later that day we made the trip down to theatre - it was a different theatre this time and much further. Christopher was quite happy and was chatting away as we wheeled him down.
The operation didn't take long and i think he was back on the ward in less than an hour. He had a little plaster high on his chest and he was a bit bruised and tender and that was about it. As soon as he was awake he was asking to be fed. I asked the nurses if he could eat and she said he shouldn't really but she could see how hungry he was. I asked her what would be the worst that could happen if he ate too soon and she said - well he might be sick. In the end we decided that if that was the worst that could happen then it was worth the risk.He ate the biggest tea you could imagine and kept every bit of it down He referred to the little lump on this chest as his 'friend' and that was the name that stuck the whole time it was there.
Good Friday – Bad chemo
Everything seemed to be working ok with Christopher's little 'freind' - it's official name was a port-a-cath and that was put in place on the Wednesday. It was decided that the chemotherapy would be started as soon as possible and the first dose would be given to him on the ward on Friday - which that year was Good Friday. It was really strange watching it be administered - the nurse was gloved and gowned so that none of the poisonous liquid touched her and yet it was being pumped into the veins of my 2 year old son.
An hour or so before they used the port-a-cath for the first time, they put some anaesthetic cream on the point where the needle was to be inserted and covered it with a plaster. The plasters they used where big clear plastic things and Christopher hated them - they really pulled his skin when they were peeled off. Another thing that he hated was the smell of the alcohol wipes that they used to clean the area before they put the needle in - in the end we had a little system where he would say - 'hold my nose Mummy' and I'd hold his nose so that he couldn't smell it.
My cousin Clare, who was totally brilliant while Christopher was ill, had come to collect us from the hospital and take us home - at last.
When they went to put the needle into Christopher for the first time, he screamed and screamed - I don't think it hurt him I think he was just scared. My cousin went to look out of the window and I know that she was crying.I'm not sure what I expected while the chemo was going in but Christopher seemed quite happy, they obviously kept a close eye on him and did regular obs (blood pressure, pulse, temp etc). The other thing that used to really upset him was his blood pressure being taken, the cuffs go really tight around your arm and in the end they used to use his leg - which he still wasn't keen on but tolerated better than round his arm. There's really no point trying to take the blood pressure of a child who is upset and crying as it will always read high due to the stress.
The chemotherapy protocol (the name used to describe the regime) was a bit complicated to begin with. The first one in the course (the one he was just receiving) was the shortest with regard to being in hospital - the drug was called Carboplatin - it took around an hour to be administered and then there was the preparation beforehand and the flushing of his lines and port afterwards that took a little extra but on the whole it was fairly quick. Alongside that he had to be given something called Procarbazine which was a daily dose given over a 7 day period. It came in tablet form but as Kip was too young to swallow a tablet the pharmacy made it up into a syrup but it had to be kept in the fridge and closely guarded. The second in the course took around 27 hours so it always meant an overnight stay in hospital. The first drug (Etoposide) too around 2 hours but then would have to be followed by a 'flush' which basically meant a slow infusion to make sure that all the drugs were out of the lines and in Christopher. That was followed by Cisplatin which was an unpleasant drug and caused sickness - that took 24 hours as it had to be given very slowly and he'd be permanently attached to the lines and I had to follow him around pushing his drip stand which he knicknamed Bob! I remember when he went back into hospital for his second course of chemo and was given the Cisplatin for the first time - Dr Grundy the Oncology Consultant came up onto the ward to see Christopher and he was happily sitting in bed eating his evening meal. Dr Grundy turned to me and said 'I can't believe he's eating his way through Cisplatin!' Most children are sick for the whole time they have it - but not Christopher! The only time I ever remember him being sick was once when the night staff had forgotten to give him his anti-emetics (anti-sickness medicine).
As the weeks went on Christopher got fitter and stronger and to all intents and purposes he was a healthy happy little boy. He went back to play group and ran around the garden with his sister and brother. When the paddling pool came out I was so thankful that we'd had the port and not the hickman line as that would have prevented him from going swimming or in the paddling pool as he wouldn't have been allowed to get it wet.
The third course of chemotherapy came round and that involved a much longer stay in hospital. Almost 4 days in total. Vincristine came first on day one then followed by Cyclophosphamide - that took an hour but was so toxic that it had to be followed by 24 hours of hydration fluid. I can't remember exactly what order and how it was done but I know that we used to go into hospital on a Thursday morning and get home Sunday lunchtime (if we were lucky).
We prepared for the third couse and a four day stay in hospital. Made sure bags were packed and I had everything that we could possibly need for the next four days. I phoned up Birmingham Children's Hospital (Ward 15) to make sure there was a bed and was absolutely gutted when they said that there wasn't a bed available for him and wasn't likely to be for a few days. There's nothing worse than preparing yourself physically and mentally for something like that only to be told it wasn't going to happen. I was also upset as it messed up his chemo and I knew how important the timing was if it was to be as affective as possible.
To cut a long story short - Kip's McMillan nurse was friends with the Consultant at Walsgrave Hospital in Coventry (she was also the Dr who told us the diagnosis so we knew her too) - she pulled a few strings and managed to get him a bed on the children's ward at Walsgrave and that was where he was to receive all of his chemo from now on. It was brilliant. Because of the nature of the treatment and the fact that the children's ward was a general ward and not a dedicated chemo ward like at Birmingham, he was given a side room - the side rooms were huge! It was more private and so much quieter and we spent many happy hours there.
Travelling to Walsgrave took about half the time it took to get to Birmigham and instead of a 70 mile round trip it was around a 24 mile round trip which was so much better and meant that far more people could visit.The chemo didn't make Christopher's hair fall out - it just made it go very fine - like he'd had a crew cut which was a bonus being as he had about a four inch scar across his head.
We were transferred to Birmingham Children's hospital by ambulance on the Thursday afternoon and he was due to have the op at 9am on the Friday morning with a warning that if he deteriorated in the night they would operate there and then.He woke at 5.30am starving and begging us for food - he was on steroids for the swelling and that's what made him so hungry. As his op was booked for 9 we couldn't feed him - it was one of the most awful times, your child begging you for food, he looked so ill and was deteriorating and we couldn't feed him. We tried everything to try and pacify him - went into the parents room to put videos on - played with him sang to him told him stories but all he wanted was food. It was the longest 3 hours ever just about. As the time for the op got nearer Andy got really upset and the nurses pulled the curtains around us - we were terrified - our two year old boy was going to have major brain surgery - we didn't know if he'd survive it, didn't know if he'd be disabled - deaf, blind, not be able to talk, would he even recognise us. The waiting nearly killed us - the pain I felt was physical I can't describe it we were terrified. Then at 3 minutes to 9 they came to tell us that the operation was cancelled. We didn't know whether to laugh or cry, whether we were relieved or gutted.
Andy just looked straight at the nurse and said 'does that mean he can eat then' and she said yes and he went like lightening down to the restaurant and got the biggest box of sausage and beans you ever saw and brought it back to give to Christopher. The poor little mite (and us) had gone through all that just to have it cancelled right at the last minute.
He was happier once he'd eaten but then a theatre slot became available around 11am but because he'd eaten he couldn't have surgery I remember every minute even though it was 6 years ago.
Anyway by lunchtime my Mum, sister, Kate, Matt and my cousin Clare were at the hospital waiting with us, even though is was Clare's sons birthday - she stayed there all day with us.
We were pacing the hospital - Christopher was quite ill and quite unreasonable due to the steriods and him being so ill. We spent hours taking it in turns to push him around the hospital in a buggy. Reading him stories - we couldn't even get him to have an afternoon sleep and it was so not like him to have a sleep.
Again we got the nod that the operation was going to take place sometime after lunch - we waited and waited but nothing happened. Me and dh were exhausted - we hadn't slept all night and had been up since 5.30. The stress was unbelievable - starving him then feeding him then waiting.
Anyway we were told to bath him and get his gown on as he would definately be going down for his op at 5pm. We all got very nervous. I remember bathing him but had to be careful as he had special markers all over his head that they'd put on during the scan ready for the operation. I got him into one of the hospital gowns and tried to explain to him what was going to happen - as much as a 2 year old could understand.We got him in bed all ready to go and then at 5.15 the operation was cancelled again! A baby had been born with it's intestines on the outside of its tummy and needed urgent surgery and although Christopher was quite ill - the baby needed the theatre more than he did.
We couldn't believe it. It was such an awful day. I found out a few months later that the ward sister filed an incident report because of what went on, she'd lived the whole day with us and felt and seen everything that had happened.
So the surgery was then booked for 9am on the Saturday morning. They never do surgery at the weekend unless it's urgent so we had to try to sleep and do it all over again the next day.
It's inconceivable that when you are going through the worst time of your life - it can be made even worse by circumstances.
My sister, Jane. Was living in Colchester having been in the army for a few years. She was living with a partner and had a job that she loved - on the day I rang her with Christopher's diagnosis she packed up her whole life and came home. I don't know what we'd have done without her.That night (of the cancelled ops) she told me and dh to go to Edward House (who we do a lot of fundraising for) and get a good nights sleep and she'd sleep by Christopher's bed. She took us down to the restaurant (Kip in his buggy by our side) and made us eat something as we'd not eaten all day. We managed to eat a little bit. Later that night me and Andy went back to Edward House and did eventually get some sleep.The next morning we woke up and got ready. We could barely even manage to drink a cup of tea. We went back to the hospital (a 10 minute walk mostly through the hospital) and my legs were like jelly, I felt sick and so scared. Andy was white. My sister was in the play room with Christopher. She had woken him up in the early hours to give him something to eat and drink so that we didn't have a repeat of him being starving and begging for food. They'd had quite a good nights sleep and she made us laugh telling us that she was just dozing off to sleep in her little camp bed and a little voice said 'Aunty Jane' and she said 'yes Kip' and he said 'I just twumped' and she laughed and said that's nice go back to sleep then. A few minutes later the same little voice said 'Aunty Jane' and she said 'yes' and he said 'I just twumped again'. I'll never forget that and she often mentions it.
Anyway when we found them she was reading him stories in the playroom on the ward. He looked so cute but was more shaky and pale than he had been.
Before long the anaesthatist came to chat things through with us, then the surgeon but all I could think about was if it was going to happen today. I was so scared that it was going to be cancelled again.Dh couldn't stand it and went roaming round the hospital, he said he didn't want to see him go off to theatre and didn't want to come with us.
After a while they came to fetch him and we walked along side his bed as they wheeled him the short walk to the theatre.Just as we were going down the corridor dh appeared and ran towards us and gave Christopher a kiss and said a few words to him and then was gone again.My sister and me went into theatre with him but only I was allowed in to the anaesthetic room. They spent time with us, they were so lovely and Christopher seemed really calm and settled. I waited until he was asleep and made sure the nurse had his dummy and comforter and I asked her to look after him and she put her arm around me and promised me she would.
I went back to my sister who was sitting in the waiting room and she gave me a big hug and we went off to find dh.We'd decided that there was no way we could stay in the hospital, I couldn't sit looking at the empty bed space so we all went off into Birmingham just for something to do - a distraction I guess. It was going to be at least four hours before we'd know anything and the staff had my mobile number.
I felt relieved in a way - it was strange but as soon as I'd handed him over to their care I knew there was nothing I could do, I had to trust them and I did. It was like a burden was lifted knowing he was finally having the op that he so desparately needed, although we were nervous - it could have been all over in that four hours.
It was weird wandering around Birmingham. It was a busy Saturday and everyone was getting on with their lives - they had no idea what was going on - my son was having brain surgery and they were chatting and shopping and arguing. We went to the Early Learning centre to choose some presents for him and I remember choosing some bob the builder stuff and saying to my sister 'I wonder if he'll ever get to play with it'.
We eventually went to McDonalds for some lunch and I rang the hospital to see if there was any news. Apparently they hadn't started the surgery until around 11am - I'm not sure why it probably took ages to get him ventilated - get all the lines in (neck and groin and canula in his hand), and they have to fix his head in a brace thing to keep it absolutely still and make sure they are going in at exactly the right place. The surgeon apparently videos all his operations and did offer for us to see it!
I can't remember what time we got back to the hospital - possibly around 3-3.30pm. Then the nervous waiting began. Later on my Mum arrived with my Uncle and we sat in the parents room just waiting.In the end the surgery took 8 hours - I couldn't believe it - my poor little baby had been in the theatre for 8 hours.
The surgeon came straight up to the relatives room to talk to us - he looked absolutely exhausted and told us what a long operation it had been.He said it had gone really well, he thought he'd got most of the tumour out. He explained about the wound and I asked if he'd shaved his head and was amazed when he said he hadn't!He said he'd probably have a black eye the next day but he seemed to think he was fine with no complications but I wouldn't believe that until I saw him - I was terrified he wasn't going to know us, wasn't going to be the same.
I then asked what he thought about the tumour - he knew exactly what I meant - I wanted to know if he thought it was benign or malignant. He looked at me and screwed his nose up and said 'well it didn't look very nice' but that they wouldn't know for sure until they had the histology report back.
He said they'd be up to get us in a while, they were just keeping an eye on him and making sure he was awake and ok before we could go down.I was desparate to see him. It seemed ages before they finally came to fetch us - just about the longest time I'd ever been away from him.When they came me and Mum went down. We got into recovery and I could hear him before I could see him. Apparently he'd come round very quickly and they hadn't managed to get the line out of his groin and were trying to do that but he was getting a bit unsettled and asking for McDonalds!
He was shaking uncontrollably and that really scared me and I couldn't seem to get him to look at me or respond to me and it was freaking me out.A nurse went and got a warm blanket and put it over him and it calmed him right down. We eventually went back up to the ward and it wasn't long before I knew that he knew us all. I tried to show him the stuff that we'd bought from the early learning centre - I thought if I could distract him - get him to play and talk that everything would be ok - I just needed to know that he was ok. I didn't seem to take in that he'd just had major surgery.
Eventually all the family left and it was just me and dh. That night was so scary. We were told that the first 24 hours were critical as if anything was going to go wrong it would be then - I was so scared that he was going to haemmorhage. I couldn't believe that they woke him up - I thought they would keep him sedated but apparently they need them to be awake and alert as if there is anything wrong they can spot it straight away.
I just wanted them to leave him alone but they couldn't - he had to be closely monitored and what really upset us was that they had to turn him over every half an hour. They couldn't leave him in one position too long because of letting all the blood etc settle on one side. That was awful because he didn't want to be moved - it hurt him.
I was so anxious. I watched him like a hawk. I remember around 11pm the nurse persuaded me and dh to go back to Edward House and try to sleep - she promised me that if there was anything or if he asked for us she'd phone us. So reluctantly we left him - we were shattered.We went straight to sleep and the phone rang around 3am - it really scared us but the nurse said straight away 'don't panic there's nothing wrong it's just that he's asking for you'. So we got dressed and went back over to him.
The staff on the ward were brilliant - they totally knew their stuff, amazing and we'd never have left him if we hadn't seen them at work and seen how brilliant they are.It's odd but there's only so much you can take - there's only so long you can sit seeing your child with lines everywhere and monitors and jumping everytime you heard an alarm go off or staring at his blood pressure and pulse to see if it was an indication that something was going wrong - you need a break, you need to get away.
We got through to the next morning with no problems and I was amazed how well he was doing.
The Sunday morning was good. Christopher was in quite good spirits considering everything he'd gone through over the last few days. He had the biggest black eye and it was closed shut but he seemed to be his normal self. He was still having to lie on one side or the other and kept complaining that he couldn't see the telly when he was lying on the side of his 'good' eye - we had to keep squashing the pillow down so he could see.As he was ok I was persuaded to go home for a few hours and have a break and dh agreed to stay. I'd been more or less constantly in the hospital for a week by this time as he'd been in our local hospital for a few days before they diagnosed him.I felt dreadful going home on the train, felt like I was abandoning him - I almost didn't go.
Anyway I had a bath and got some fresh clothes and had a lovely sunday lunch with my family and spent some time with the kids.I was very anxious to get back and we set off back to the hospital around 2pm.When we walked back to the ward I could see dh - he was very anxious and was pacing about. Apparently Christopher had had a screaming fit (very unlike him) and just screamed and screamed and he didn't know why and he hadn't spoken or been responsive since.I felt sick when I saw him, his face was as white as a sheet and he was only moving his eyes - he didn't respond at all - I was convinced something really bad had happened. My heart was pounding and my heart was in my throat, I was really really scared.I tried to stay very calm and went and sat next to him and tried to get him to react to me - eventually he did and I was sooo relieved. It turned out he was very anaemic and needed a blood transfusion which they started later that day. We also found out months later that there was evidence of a small 'bleed' on one of the scans and I'm convinced that was what happened that day - thank goodness it was only small.The family stayed for a while and the children spent time with Christopher and he was really pleased to see them. Then Andy went home with the rest of the family and for the first time since we got to Birmingham I was on my own.Our vicar told the congregation on Sunday morning all about Christopher and they were all really shocked and upset.
There was a collection made for us, someone suggested they'd like to send us some money as they felt so helpless and knew that being in hospital and all the travelling was so expensive (it's a 70 mile round trip from our house) - plus eating in the hospital restaurant etc.On the Monday morning John (our vicar) turned up with £300 which he gave to me and said he'd already given £150 to my Mum to help her as she was looking after Katherine and Matthew full time as Andy had to go back to work.
I was so touched but it was about so much more than the money, it was about people's love for us - with each pound they gave I knew what they were really giving was love and care.....
Next bit.
As the days went by Christopher got better and stronger. I remember - I think it was the Monday - they decided to change his bed, they wanted me to have him on my knee and I was so scared. He was wired up to all kinds and still had a huge line in his neck. I sat right next to the bed and they very carefully lifted him on to me. The poor little lamb gripped on for dear life - he thought he was going to fall, I didn't realise at the time but his balance had been affected. He'd spent months unconciously compensating for the huge mass growing in his brain and all of a sudden it was gone - that must have been a really strange sensation. I had to reassure him and he just kept holding on to me so tight and all he wanted to do was get back into his bed and lie down. It wasn't long before he was back in bed where he felt safe. He was sitting up slightly now, the beds in the hospital are amazing and move up and down in all directions to make the patient as comfortable as possible.
One of the things that was really bothering us was how he kept jumping when he was going off to sleep. He'd been just dozing and all of a sudden his body would jerk, sometimes quite violently, and wake him up. We were really concerned about it and had lots of discussions with the nurses. They decided it may be a combination of things but was most likely to be breakthrough pain. Although he was on regular pain killers and never seemed to be in much pain - there must be times, after having such major surgery, where the pain would feel quite sharp. It seemed to go on for days but eventually did subside and we were very relieved as we thought he'd suffered some sort of neurological damage.
They'd taken a plate of bone out of his head to get at the tumour, but replaced it after, probably about 3 inches in diameter but after the swelling had gone down you couldn't see it, although it was to become more obvious after subsequent surgery.Four days after the operation we had gone down to the playroom, he was free from all his lines and monitors and I carried him around as he hadn't walked since his op. I remember he wanted to try and walk. Bearing in mind he'd had to work hard to get used to the new balance after having such a huge weight taken out of his head.
I remember so clearly we walked, very tentatively, along the ward back to his bed, he was holding my hand tightly and was quite wobbly but he walked! Everyone stopped to watch him and they clapped when he made it back and were amazed at how quickly he was back on his feet - I felt so proud of him.That was when I began to realise what a truly amazing and very brave little boy we had.
It seemed to be forever waiting for the histology report on the tumour. We just needed to know if it was malignant or not. I remember one day that one of the doctors on the ward said he'd heard that it was good news and that the tumour was benign. I remember we were so pleased - I was so excited and started texting everyone to tell them. I couldn't believe it - even though I knew it wasn't official I just clung on to that piece of good news.
We were told that he shouldn't have said anything and that the tumour had now been sent to Queen Elizabeth hospital in birmingham for further analysis.
Before long we got the gut wrenching news that the dr's were coming up to see us and were going to tell us what they'd found and what was next.
I remember going into a side room with Dr. Grundy (oncology consultant), one of the nurses, my sister and Andy. They said that the calsification on the tumour, which bascially was similar to rings in a tree trunk, suggested that the tumour had been growing very slowly for probably most of Christopher's life and although they couldn't say if he was born with it, they said it had certainly been growing since he was very small. Now that in itself was good news - it meant that it was a low grade tumour and very treateable. The trouble was, and this was why it had taken such a long time to get a final result (two weeks), there was some elements within the tumour that were high grade - in fact they were grade four which is as bad as it gets.
He said there was a way forward - they would start him on chemotherapy straight away and possibly radiotherapy although they preferred not to give radiotherapy in a child so young as it would have serious consequences for his ability to learn and complications later in life - so the longer they could leave it the better.
I asked what they thought the chances were of curing him, I'm not sure what I expected them to say but it certainly wasn't what we were told.The Constultant said he thought there was a 30-40% chance of a cure. I looked at him - I wasn't sure I'd heard him right - I was gobsmacked - time stood still. I said you mean there's only a 30-40% chance that he'll beat this and he said yes, I'm really sorry but we'll try everything we can. All I could think about was that meant there was a 60-70% chance he would die.I remember putting my head in my hands, I took just a couple of minutes to compose myself and then I was fine. My sister said she was amazed - she couldn't believe how well I kept it together. At this point Andy left the room, he'd heard as much as he could take and he didn't want to hear anymore.
I stayed with my sister and asked a few more questions.They said they would start him on the first round of chemotherapy before we left the hospital but they needed to put a central line into Christopher's chest ready for the treatment. I asked so many questions and I remember the consultant saying 'if we didn't think it was worth a try, if we didn't think there was a chance we could cure him we would tell you'. I discovered that that was true - they were always very honest with us.That night they let Andy stay on the ward with me and Christopher as we'd had such awful news. It was awful - we were hurting so much, I was trying to stay strong and trying to say all the right things to Andy but I didn't believe half of what I was saying. I just felt if I could keep him strong then I could stay strong.
We decided that we wouldn't have the normal 'hickman' line that most children had as it consisted of 3 lines hanging out of his chest and the risk of infection was quite high and as he was so young and it would soon be summer I wanted him to be able to be as normal as possible. If my baby had got to have poison pumped into his body on a regular basis (every 3 weeks) then the rest of the time I wanted him to be a normal little boy.We decided on a port - which was very similar. It was a line that went in through his neck and down to the main vein right next to his heart. But the port would sit under his skin - it did mean that each time they needed to use it - he would have to have a needle in his chest - but the rest of the time he wouldn't even know it was there. Plus they always put anaesthetic cream on before they put the needle in so that he wouldn't feel it go in.
We again were messed about waiting for him to go to theatre to have it done - we starved him only to have the op cancelled at the last minute. The surgeon who was going to fit the port moaned because we'd decided on a port and not a hickman line. By this time I was learning to get more assertive and I pointed out that it was an almost identical operation and it just wasn't fair to keep us hanging on like this. If he wasn't going to do the op then he had to tell us as I wasn't prepared to keep refusing to give my son a drink when he asked for one.
Later that day we made the trip down to theatre - it was a different theatre this time and much further. Christopher was quite happy and was chatting away as we wheeled him down.
The operation didn't take long and i think he was back on the ward in less than an hour. He had a little plaster high on his chest and he was a bit bruised and tender and that was about it. As soon as he was awake he was asking to be fed. I asked the nurses if he could eat and she said he shouldn't really but she could see how hungry he was. I asked her what would be the worst that could happen if he ate too soon and she said - well he might be sick. In the end we decided that if that was the worst that could happen then it was worth the risk.He ate the biggest tea you could imagine and kept every bit of it down He referred to the little lump on this chest as his 'friend' and that was the name that stuck the whole time it was there.
Good Friday – Bad chemo
Everything seemed to be working ok with Christopher's little 'freind' - it's official name was a port-a-cath and that was put in place on the Wednesday. It was decided that the chemotherapy would be started as soon as possible and the first dose would be given to him on the ward on Friday - which that year was Good Friday. It was really strange watching it be administered - the nurse was gloved and gowned so that none of the poisonous liquid touched her and yet it was being pumped into the veins of my 2 year old son.
An hour or so before they used the port-a-cath for the first time, they put some anaesthetic cream on the point where the needle was to be inserted and covered it with a plaster. The plasters they used where big clear plastic things and Christopher hated them - they really pulled his skin when they were peeled off. Another thing that he hated was the smell of the alcohol wipes that they used to clean the area before they put the needle in - in the end we had a little system where he would say - 'hold my nose Mummy' and I'd hold his nose so that he couldn't smell it.
My cousin Clare, who was totally brilliant while Christopher was ill, had come to collect us from the hospital and take us home - at last.
When they went to put the needle into Christopher for the first time, he screamed and screamed - I don't think it hurt him I think he was just scared. My cousin went to look out of the window and I know that she was crying.I'm not sure what I expected while the chemo was going in but Christopher seemed quite happy, they obviously kept a close eye on him and did regular obs (blood pressure, pulse, temp etc). The other thing that used to really upset him was his blood pressure being taken, the cuffs go really tight around your arm and in the end they used to use his leg - which he still wasn't keen on but tolerated better than round his arm. There's really no point trying to take the blood pressure of a child who is upset and crying as it will always read high due to the stress.
The chemotherapy protocol (the name used to describe the regime) was a bit complicated to begin with. The first one in the course (the one he was just receiving) was the shortest with regard to being in hospital - the drug was called Carboplatin - it took around an hour to be administered and then there was the preparation beforehand and the flushing of his lines and port afterwards that took a little extra but on the whole it was fairly quick. Alongside that he had to be given something called Procarbazine which was a daily dose given over a 7 day period. It came in tablet form but as Kip was too young to swallow a tablet the pharmacy made it up into a syrup but it had to be kept in the fridge and closely guarded. The second in the course took around 27 hours so it always meant an overnight stay in hospital. The first drug (Etoposide) too around 2 hours but then would have to be followed by a 'flush' which basically meant a slow infusion to make sure that all the drugs were out of the lines and in Christopher. That was followed by Cisplatin which was an unpleasant drug and caused sickness - that took 24 hours as it had to be given very slowly and he'd be permanently attached to the lines and I had to follow him around pushing his drip stand which he knicknamed Bob! I remember when he went back into hospital for his second course of chemo and was given the Cisplatin for the first time - Dr Grundy the Oncology Consultant came up onto the ward to see Christopher and he was happily sitting in bed eating his evening meal. Dr Grundy turned to me and said 'I can't believe he's eating his way through Cisplatin!' Most children are sick for the whole time they have it - but not Christopher! The only time I ever remember him being sick was once when the night staff had forgotten to give him his anti-emetics (anti-sickness medicine).
As the weeks went on Christopher got fitter and stronger and to all intents and purposes he was a healthy happy little boy. He went back to play group and ran around the garden with his sister and brother. When the paddling pool came out I was so thankful that we'd had the port and not the hickman line as that would have prevented him from going swimming or in the paddling pool as he wouldn't have been allowed to get it wet.
The third course of chemotherapy came round and that involved a much longer stay in hospital. Almost 4 days in total. Vincristine came first on day one then followed by Cyclophosphamide - that took an hour but was so toxic that it had to be followed by 24 hours of hydration fluid. I can't remember exactly what order and how it was done but I know that we used to go into hospital on a Thursday morning and get home Sunday lunchtime (if we were lucky).
We prepared for the third couse and a four day stay in hospital. Made sure bags were packed and I had everything that we could possibly need for the next four days. I phoned up Birmingham Children's Hospital (Ward 15) to make sure there was a bed and was absolutely gutted when they said that there wasn't a bed available for him and wasn't likely to be for a few days. There's nothing worse than preparing yourself physically and mentally for something like that only to be told it wasn't going to happen. I was also upset as it messed up his chemo and I knew how important the timing was if it was to be as affective as possible.
To cut a long story short - Kip's McMillan nurse was friends with the Consultant at Walsgrave Hospital in Coventry (she was also the Dr who told us the diagnosis so we knew her too) - she pulled a few strings and managed to get him a bed on the children's ward at Walsgrave and that was where he was to receive all of his chemo from now on. It was brilliant. Because of the nature of the treatment and the fact that the children's ward was a general ward and not a dedicated chemo ward like at Birmingham, he was given a side room - the side rooms were huge! It was more private and so much quieter and we spent many happy hours there.
Travelling to Walsgrave took about half the time it took to get to Birmigham and instead of a 70 mile round trip it was around a 24 mile round trip which was so much better and meant that far more people could visit.The chemo didn't make Christopher's hair fall out - it just made it go very fine - like he'd had a crew cut which was a bonus being as he had about a four inch scar across his head.
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Brave boy
