Camerons Story x

I have never in the 6 ½ yrs since diagnosis ever attempted to write Cameron’s story so im hoping I can do this and I apologise if I waffle or miss huge chunks out.
Cameron was born 7th March 01 a healthy little boy after a nightmare c section. I can remember so clearly the day he was born telling my hubby that we had to treasure him as he wouldn’t be around for long – hubby just smiled and thought it was anaesthetic and drugs talking but it wasn’t it was a feeling I had deep down somewhere that never went away.
He was the most nightmare baby I have ever seen he never settled was always crying and never ate more than 30z of milk a time I took him so many times to the gp to tell her there was something wrong and was always sent away.
At 15 months old Cameron got chickenpox it was so severe there was not a part of his body that was not covered in spots. At around this time we had noticed a squint and were getting concerned so the health visitor referred us for it is checked out!
At 19 months Cameron again was seen by the gp because I was concerned that he was not attempting to learn to walk and was content just sitting in the corner of the room surrounded by toys and I felt his squint was getting worse – again I was told not to worry and sent away.
By 21 months Cameron was just starting to walk round the furniture he was clumsy but he was he getting there he fell over and banged his head really bad on the floor so we took him to local hospital where he received a couple of stitches – at around this time we had noticed that his left eye was changing colour and I begged the Dr to have a look he begrudgingly shone a light into it and again I was told don’t worry its fine loads of people have 2 different coloured eyes.
A week later my eldest son had an appointment with the community ophthalmologist for his 4 1/2 yr vision check – while we were there I told her Cameron was on the waiting list to see her but would she please have a look as I was concerned he had lost sight in his left eye and it had changed colour – instead of the usual begging routine with the other specialists I had seen she instantly picked up her torch and took a look!! She then said she thought I was right and that there was no sight in his eye, which caused her some concern and told me to go straight to Burton hospital where they would be expecting me.
I went home finally pleased that someone was going to help us and sorry that my little boy had lost his sight in one eye.
We were there all day and no one gave me any idea what they thought it maybe or to be honest make me alarmed when the consultant told me I needed to go to Birmingham children’s Hospital – he said it was simply they had better equipment for looking at children and I believed him. An appointment was set for the following morning.
At home we decided it was going to be difficult to find childcare for my other 2 children and that my brother would come with me on the train into Birmingham!!
After hours of tests, drops and more torches we were took into a room and told that there was a tumour in his left eye which was causing him to lose his sight. My first question was is it cancer ??? I was told it wasn’t and that Cameron would need to be put to sleep the next day for them to be able to get a better look.
We left the hospital and actually said on the way back home ” it could be worse he could have cancer !!! “
The next day 24th January 2003 is all a bit of a blur hubby and me were introduced to so many people.
After we had got Cameron back out of recovery he fell straight back to sleep and then we were asked to go into the smallest office in the world – in there was the most people you have seen. Now we were told that Cameron had a cancerous tumour in his left eye and the only option was to remove his eye – at this point we were told it was a good prognosis and if we had his eye removed we could spare him chemotherapy and the chance of survival was high. All I remember after that is people talking at me – being shown an artificial eye and been handed a leaflet on eye cancer. It was the leaflet that started the flow of tears seeing the word cancer in black and white just was too much. Only yesterday I was told it wasn’t cancerous and today suddenly it was.
It was a Friday afternoon and we were told his surgery would happen on Monday morning. I really don’t remember much about that weekend.
On Monday morning I kissed the other 2 boys bye and headed for children’s hospital for 7am!!
Surgery went well and we stayed in hospital for just the 1 night Cameron was up and about by morning and only I was shocked by the recovery he made. It was explained at the point of discharge that the tumour would now be checked to make sure the cancer was contained in the eye. I was told that it was 99% certain that it was and to go home and cherish my little man.
This is where our story should end but it was not to be . . .
2 weeks later the swelling in his eye post surgery had gone down loads and I was feeling brave so decided to take him to a children’s farm and put the past few weeks behind us – daddy was at work so instead my bro accompanied me and we had a blast the last day of normality and even now I don’t regret 1 bit being out and missing the call or been too engrossed in my boys to hear my mobile ringing frantically.
When I got home hubby was sitting on the sofa I prattled on about what a wonderful day we had had before realising that he was home and shouldn’t have been. He explained that the consultant oncologist had phoned and told him we needed to start chemo ASAP, as there was evidence that the cancer may have spread out of the eye. We were too take him the next day for his Hickman line to be put in and chemo would start that day. Again surgery went well and we were introduced to yet more people and we were told how to care for his line but to be honest I just remember sitting numb and then sobbing as they took my little man into theatre.
We were allowed to leave the hospital that night armed with information.
The next 4 months saw is in and out of hospital with infection after infection, the chemo was so strong that Cameron stopped eating and would only drink milk!! I stayed in hospital with him while hubby stayed with the other 2 boys at home. He was given gcsf as a way to stop infections they were so painful that he would scream out and it took 3 nurses to hold him still enough to do it!!
Half way through treatment Cameron pulled out his hickman line and so had to undergo surgery for a new one to be inserted – mening he now has scars both sides of his neck.
After his last round of chemo Cameron got a line infection and was so ill we were told to brace ourselves for the worst and that they expected him to be moved to ITU in the night if his breathing got any worse I sat awake all night watching his breathing and urging him thru the night. 14 days later he was home safe and well – how do kids do that???

Again when we were discharged we were told to go home and look to the future – I vividly remember the nurse telling me take him home he’s all fixed now live your life and don’t look back!!

Since then Cameron has been in and out of surgery as the infection he got on his first round of chemo is so hard to treat and sits dormant in his implant waiting for the chance when his immune system is compromised to take hold again because of this the skin that covers the implant is slowly eroding away and means he gets a build up of scar tissue which then bleeds and causes him immense pain until they take it away ready to start the cycle again.

Right to the present and a new consultant who persuaded us he could fix all our problems with his eye and that we could finally stop steroids and also stop scar tissue building and would see an end to all the operations.
He had an op in April this year that took fat from his stomach and moulded his eye it was a painful op and one I never wish to repeat. Only this week has he recovered enough to be able to have an eye fitted. However we are back on the steroids as the scar tissue is again building up and talk of another operation is always in the air. This week we have just had the best new ever that says that for now we can go back to just routine treatment and all high dose steroids have stopped he still has an unexplained growth on the surface of his implant but for now we are all on cloud 9 with the less intense regime of medication.
Infections seem to be a big problem at the mo but as long as he remains cancer free I can deal with anything.