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Bill Cooper

Ellis playing in a ball pool
As a doting grandfather, Bill struggled to come to terms with Ellis's diagnosis. His family has been through some very difficult times but here he explains that some good has come from this challenging period.

"This is very briefly the story so far of our grandson’s retinoblastoma. Since he was diagnosed we as a family have learned a lot and it has put other problems in perspective and made us realise what is really important and what isn't.

Ellis was born on the March 29, 2005. Our first grandchild so, obviously, as far as we were concerned he was perfect. As the months went by he developed the same as any other baby and the whole family got a lot of pleasure from him.
Towards the end of 2005 my wife noticed what she thought was a lazy eye and suggested my daughter bring it to the attention of the health visitor just to be on the safe side. She seemed to be unsure so another appointment was made with the Royal Victoria Infirmary in Newcastle.
After a wait of 13 weeks the day arrived, the 5th of June, my younger daughter’s birthday. During the period up to the appointment I had always maintained that it would not be anything serious, nothing that couldn't be easily put right by the doctors.

Sitting at home with our other daughter late in the afternoon we tried to reach either my wife, who had also gone to the hospital or daughter on their mobiles but without success. After about 30 minutes we tried again, this time my daughter answered. She was so upset the only word we could make out was tumours. We sat in silence.

Shortly after that they arrived back at our house and it was only then that the whole story came out. This was the first time any of us had heard of retinoblastoma. Ellis had tumours in both eyes. The sight in his left eye had gone and there were smaller tumours in his right eye, which required immediate attention. The following Wednesday an appointment was arranged for Ellis at Birmingham Children's Hospital.
That morning my wife and I along with my daughter Suzanne and husband Stephen and Ellis set out early to keep the appointment. It was here where the full extent of the illness was revealed. We were warned before he went to the theatre that depending on the extent of the damage and the size of the tumours they may remove his left eye straight away.

After taking Ellis into theatre for a more in depth examination the consultant and doctors returned to the ward and took Suzanne and Stephen into a side room. During that time we stayed with Ellis who was extremely distressed and upset following the treatment.
We were later asked into the room to have the details explained to us. In the meeting we were shown photographs taken of the inside of the eyes and it was clear from these the extent of the tumours. The left eye was covered and the right eye had 2 smaller growths, which at that time were not interfering with his sight in that eye.
The prime objective of the doctors was to save the sight in the right eye; as far as they were concerned the left eye would have to be removed at some stage.

The staff at Birmingham were excellent. The only complaint I could make was the amount of information we had put in front of us. We couldn't take it all in, as well as what was to happen immediately they were talking about his future as a child and how he would have to have everything explained to him in to his teen years and getting married and the effect on any children he may have. All this after just having the cancer confirmed and people talking of removing eyes.

We had intended to stay at a hotel that night but an appointment was made for Ellis back at the RVI in Newcastle for the following morning. We drove home that night completely stunned and unable to believe what we had been told.

At the RVI further tests were done to establish whether or not the cancer had spread to any other part of the body and to have a port inserted in his chest to deliver the chemo through. A lumber puncture, blood tests etc were done and I for one broke down when the results came back clear. I think the last few days finally came out. Ellis started chemotherapy that night. Each session was followed by a trip to Birmingham three weeks later to check on the effects of the treatment.

Once the initial shock had sunk in we began to look at other problems, not least that the cost of the repeated journeys to Birmingham with overnight stays was going to put considerable strain on resources available. However, after raising this with the RVI they arranged to transfer money immediately into my daughters bank account through the cancer fund at the hospital. Since then the social worker assigned to the case has revealed various benefits, which can be claimed to ease the financial burden. No one in the family has ever had to deal with an illness like this in a child. Somehow cancer seems more acceptable in an adult.

As we learned more about the disease we also learned how we could have detected it ourselves. We looked back at photographs taken months before and they showed clearly that one eye was red from the flash and the other white.
At that time we thought no more about it but although we now realise it was a lack of knowledge on our part and we are not to blame, we still can't help thinking maybe we could have got him treatment earlier. The photo shown indicates quite clearly the marked difference in his eyes.

On the 9th October after five treatments, the doctors in Birmingham said the cancer cells in the right eye were dead but there were still some minor problems with the left eye. Further chemo would “top up” and complete the course of chemotherapy.
After further treatment Ellis finally had to have his left eye removed. It took almost a week for him to get back to his normal self. He has had a shell fitted which doesn't match his other eye but that will change as he grows and better eyes are fitted.
The consultant also removed a sample of tissue from behind the eye to test for any traces of cancer which may have leaked from the eye itself. We were soon given the news from Birmingham that the tests results were back and there was no trace of any cancer left around his left eye. This came as a huge relief to us all but in particular to his mum and dad. As long as his right eye continues to be in remission he can get back leading a "normal" life.

After the initial shock and the treatment started Suzanne decided that she wanted to do something for ward 16 at the RVI as a means of saying thank you for the support for all the family and the continuing care for Ellis which will go on for the years ahead. We have been involved in fancy dress parties, a sponsored walk, pamper days for the ladies and various other things.
I have been pleasantly surprised by the response of people I have approached and asked for donations for raffle prizes, no one has refused and I have been given items such as a 20inch TV, DVD recorder, two MP3 Players, a portable DVD Player and countless other items for which I extremely grateful. To date before all funds are collected we have raised in the region of £3,200 for ward 16.

People say there is always something good comes from bad. A few months ago I would have disputed that strongly. What good could possibly come from a 16-month-old baby having cancer in both eyes? Three or four years ago Suzanne suffered from agrophobia and was unable to leave the house alone. During Easter 2004 she lost a baby just six weeks into the pregnancy.
In June the same year she married but still suffered from agrophobia. The problems with Ellis have forced her to overcome her fears and she now has no problem travelling to Birmingham with Ellis or in to Newcastle on her own. Her life has been transformed so I suppose there may be something in it, just sometimes you have to look hard to find it.